Re-Testing Peripheral Neuropathy Monday

I see the MDS specialist the first week of April, so it seemed like a good idea to ask for a Neuropathy test before I see him. When I first saw my Neurologist, it was at the suggestion of my Orthopedist, who had concluded that my super labored walking was not caused by lumbar disk pressure.

He sent me to Lakeshore to have the Nerve Conduction Velocity Test, which uses patches like those they stick on the chest to check for heart problems. They pass an electric current and check to see how long it takes the message to register between the patches. It's uncomfortable at the time, but not really too bad. The other test is called Electromyography. That's the one where they poke electrodes the size of needles in your muscles, and it is supposed to show how well the muscles respond when the nerve is stimulated. That test is not at all comfortable. I actually had little pin prick size blood spots all over my legs when that one was over.

Anyway, the results showed definite Axonal Peripheral Neuropathy, mostly in my right leg. Because I was having trouble walking, and the test order came as a result of my Ortho dealing with my back and legs, he did not order the test to be done on my arms as well.

My Neuro was not at all happy that he did not have results for my arms as well as my legs, but he proceeded with the info he had, as my insurance would not likely have paid for a repeat test so soon.

So, I talked to his nurse a couple of days ago, and I'm scheduled to have the complete PN test battery Monday, at my "suggestion" - translate that as strong urging. This test is very uncomfortable, but it seems to me I need to get any tests done now, not wait and "waste" the visit with this very hard to see Head of Neurology at UAB.

I'm still experimenting with any variables I can think of. so, for the last four days I have not used the TAP dental device, which is to control my mild Sleep Apnea. The mouth tics started about the same time I started using the TAP, and I'm trying to be sure that this off and on again mouth twitching I've been doing is not being aggravated by the mouthpiece. Surprisingly, I'm still sleeping 7 or 8 hours a night, even without it. I think it did break me of the mouth breathing habit, which may be the cause of the relaxed jaw that was allowing my throat to close up during sleep.

I have noticed a definite correlation between the mouth twitches or tics and how stressed or tired I am. So they get worse as the day goes on. If I stop to think about them, I can stop them momentarily, but it's as if my mouth is determined to move, no matter what I do, and it soon starts back up again.

I figure I'll make sure Monday that there aren't any other tests I should have done, or repeat, before seeing Dr. Watts at UAB. I have to call his office to change my insurance information to show that Medicare is my Primary insurance now, as this is the month I turn 65. So I will talk to his nurse and see if they suggest any other tests. I have learned to be proactive in such situations. It amazes me that doctor's offices don't initiate this kind of pre-visit planning, but they don't.

By way of contrast, when we made an appointment with a financial counselor to help us with investing my inheritance, we received a huge packet of papers to fill out and a long list of documents to bring with us for our first meeting. That's the way it should be with doctors, in my opinion.

So, I will do what I can to document everything and have everything ready for this crucial visit. I can't even talk to someone about Long Term Care insurance, or anything insurance related, until I have a diagnosis. No insurance company in their right mind would take me on as a customer right now.

Tax Time is looming, and that's one thing I am dreading doing, but I can't put it off much longer. Oh, did you know that people who file an extension will NOT receive this stimulus package $300 thingy they all keep talking about? I have always filed on time, but I know some people habitually delay it, and might need to know that.

I continue to work to get our inventory of plush lovies online, and we have managed to help several families get replacements for lost toys lately, which is extremely satisfying. I'm also helping to beta test a new Mood community on Patients Like Me, and finding the charting of my own moods to be interesting.

I may be twitching, but I am in a good mood today, and that's a great way to end this post.

Physical Therapy Continues

I've been to a couple of PT sessions now, but all they have done so far is do the ultrasound and the TENS. My neck still gets very painful, if I have to sit for any length of time unsupported, such as at meals and at church, but already it is more flexible than it was. I see them today, Wednesday, and Friday. We went out last Friday for our Date Day after I finished the session, so I guess that's the way we will do it for awhile.

I goofed on my medicines last week and put the Sinemet and Lodosyn in the boxes, as usual. That's what my Neurologist told me to stop taking, and I forgot! No harm, really. But I made a big time bad mistake when I filled them this time. I put 4 diuretic pills in, where it should have been the colon relaxer pills!! I didn't catch it until that night, when I take the last Bentyl by itself. That's when I realized it was the wrong color pill. Makes me so mad at myself when I mess up like that. I'm just thankful I didn't get into trouble with all that diuretic in me!!!

I started this post on Monday, but the interview I did last week about our Plush Memories Lost Toy Search Service was included in an msnbc.com article that published yesterday. So, I spent most of the day reading requests from families who are looking for lost lovies, and writing everyone to tell them about being featured in the article. I was on cloud nine all day long. We were able to connect two of our searchers with families who had the toy they needed, and were willing to give or sell it to them.

I got mixed up on the timing for my meds again, but not too badly this time. It's just aggravating that it happens at all. I think it's a Freud thing going on - I'm just sick and tired of all these meds, no matter how much I know I need them.

I'm tired today, too, because I stopped using the TAP for a few days, thinking that would help my neck to settle down. Of course that also means I'm not sleeping as many hours. I figure do without it one week, and if that is going to help, that would be long enough to see a difference. I will use the TAP again this weekend, or maybe next Monday, one way or the other.

The excitement of yesterday has calmed down now, but I am trying to stay upbeat, hurting neck or not.

Sitting MRI and a Full Night's Sleep

Well, I had my Standing MRI on my neck yesterday. I was having some strong tremors when I got there, so the technician changed it to a Sitting MRI! LOL!! He also put a lightly restraining halo on my head, and I managed to stay still through the whole 30 minutes. He said I did just fine.

Of course I won't find out anything until next week probably. I'm guessing that he will prescribe Physical Therapy again, particularly since I had such a terrible reaction to the Celestone steroid shot for my poison ivy. It depends on just how much damage he sees, I guess.

I have my Neurologist appointment next week, so I will be talking to him about how I should proceed. He may have me stop taking the Zelepar, as that seems to be the med that gives me the most interaction warnings. It does not play well with others!

I have an appointment with my Sleep Apnea Specialist next week, too. He should be dismissing me, hopefully. I am sleeping a full 8 hours almost every night now. And it has made a miraculous difference in my daytime sleeping. Actually, I'm not having ANY daytime sleeping problems, now. I can ride in the car for hours now, and still carry on a conversation with my DH. It's been years since I could do that. No more jerking awake at the computer from a few seconds of sound sleep out of nowhere. And, I am still on the Requip that gets blamed for this side effect. It wasn't the medicine after all for me. I was just sleep deprived!

It's so gratifying to see improvement even in one area of my health. And I have high hopes that Dr. J will fix the pain and stiffness in my neck.

I've Been Busy, Busy, Busy!!!

I've been so busy I hadn't even realized how long it had been since I posted here. This is our busy time of year for selling on eBay, so I've been spending a lot of time taking pictures, writing descriptions, and packing items to ship. Hubby helps a lot with the packing, and he goes to the PO with them, but the photography and anything computer related is up to me.

I also have been very busy on the Plush Memories blog, because so many people have written wanting help finding their child's lost lovey. It feels so good to actually help someone, and I have had some successes lately. But right now, I have something like 70 or so requests that I haven't posted yet. Every time I open my email, there are a few more requests. It's almost like being Santa, getting all the letters. But I'm not magic, and there are only so many hours in the day that I can give to it.

I am still sleeping a good 7 to 8 hours a night now. My alarm watch is waking me up at 5:00AM most mornings now. That's made a huge difference in how much energy I have, and I'm not even dropping off to sleep in the car like I had been. I haven't had the nerve to drive again, though. I have mentioned it to hubby, but he just doesn't answer me. Not so sure he thinks it's a good idea.

The elimination problems have improved slowly, and the Bentyl, prune juice, extra Metamucil, and the Glycolax are working. I bought a couple of books about IBS, and I'm trying to change some more of my eating habits, too. I had already made some huge changes over the last few years, thanks to the GERD. But now, my diet is even more restricted than ever. I eat the forbidden foods from time to time, like pizza, but I do it knowing that I can expect to have consequences. And I give in to the chocolate craving every once in awhile, as it's the best cure for being upset that I have ever found. Yes, I am addicted to chocolate!!

Wearing the Skechers shoes helped last Sunday, and I was not anywhere near as unstable in them as I have been in my regular Sunday shoes. They're not the kind of shoes anyone would normally wear with dress up clothes, but they are unobtrusive.

I'm to have a stand up MRI soon for my neck, as the pain and stiffness have not gone away at all. I'm waiting right now for my insurance to approve the test. The muscle relaxer and anti-inflammatory have not made a dent in my neck situation. The X-rays show the degenerated disks, and my Orthopedist knows about the problem I had with the Celestone. He said I may have to go off the Zelepar long enough to have the epidural in my cervical vertebrae. He said I would need to talk to the Anesthetist and work that out with him. Sounds fine to me!!!! If the epidural doesn't work, the only thing left would be some form of surgery, and that I will avoid as long as possible.

Hubby's sciatic nerve problem has flared up again, so he doesn't feel like going to the track to walk. So I've been getting most of my exercise by working in the yard. The Lasagna Compost is still growing, one pile of wood chips, fertilizer, kitchen scraps, and dirt at a time. It sure is tempting to turn the pile to see if it's working, but I have resisted the urge so far. I work in the yard several days a week for over an hour, so that's good.

So, I think I have more positives going on than negatives, and that means today is a good day!!!!

Insurance Has APPROVED My Dental Appliance!!

I knew I was having a good day yesterday! When we came home from our Date Day, I had a lovely letter waiting for me, stating that the TAP Dental Appliance has been approved by my insurance for the treatment of my Sleep Apnea. I immediately called them to find out how to get my money back, as I had to pay my dentist for it up front. They are sending me the forms to take care of this. Whooopiieeeee!! I had anticipated some trouble with them agreeing that it was eligible, so that's something else I can cross off my list.

My neck is still very uncomfortable, but I made myself work on the compost heap this morning. I can't afford to give in to it, or I'll find myself able to do less and less.

I actually slept until my first medicine alarm went off this morning at 5:00AM! EIGHT HOURS OF SLEEP!!! That's the first time that has happened. I'm still waking up quite a bit in the night, but unlike before, I am able to drift back to sleep, even after I've been up to use the bathroom.

We ate at on of our favorite Mexican restaurants yesterday for lunch, but I was a good girl and got the Huevos Rancheros, which is nothing but sunny side up eggs with sauce on top. I scrape the sauce over to the side, eat the Spanish rice and the eggs, and just taste the refried beans. I did get a side order of the guacamole, which I really enjoy and finished off a bunch of the tostados they bring. I did NOT have the woozy feeling after lunch. So I'm pretty sure it's not protein that sets it off. It may be fat, though. I've basically been avoiding eating beef or pork for lunch. Most of the week we had the fake crab meat in a spinach and cabbage salad, and that does not cause the funny feeling, either.

I'm still having real problems with tremors and walking is not as easy, as I have this constant feeling of walking on Jello, because my legs are shaking the whole time I am walking. I'm using the cane just about any time we leave the house now, except for church. I'm trying to hold off using it there, because I get asked too many questions about how I'm doing. It makes me self conscious. I have started taking a lap robe to church, though, as I have come to realize that I have the hard tremors in church because I'm cold! I'll be making an appointment with the Neurologist next week, now that I've been on the new meds for awhile and the apnea and tummy are well under control.

Our older daughter and her hubby are going to do the honors for Thanksgiving Dinner this year. They both love to cook, which I never did, and this is their first holiday in their new home. I've always been the one to have the Thanksgiving meal, but I'm very happy to pass this tradition along to her, and just help out with the expense. Hopefully our younger daughter and her family will be able to come, too. With me not having to do anything for dinner, I can really enjoy the day.

So, things continue to come to good conclusions, and I remain optimistic. May we all have a great day today!!

Looks Like I Can Cross Sleep Apnea OFF My List!!

I have slept longer and waked more refreshed almost every night now for over a week with the dental appliance set to a very comfortable amount of lower jaw extension. I'm not having as much trouble with daytime sleepiness, except for the odd woozy feeling I get after lunch. So, unless something unforeseen happens, I am going to cross Sleep Apnea off my list of problems! That feels so good, to have one less thing going wrong with me.

My neck continues to spasm, so I guess in a way I have traded one problem for another. But I know that will either work itself out, or I can go to my Orthopedist and he will deal with it. If it has not relaxed by Monday, I will make an appointment. I suspect he will give me a prescription for some Physical Therapy. That's why I stopped going earlier this year when my knee was so painful. I wanted to be sure I had some PT time left, as my insurance only covers 15 trips a year, I think it was. Anyway, I know I have some sessions left, and that will be enough to get this painfully stiff neck relaxed, I'm sure.

I am in an optimistic mood, and have been for some time now. It feels glorious!! Even my elimination seems to be getting back to normal. The combination of Bentyl, the antispasmodic and mild antidepressant, the extra Metamucil capsule, and the Acidophilus, have done the trick. I still have gas problems, as I try to figure out which foods I will have to delete from my diet, but that is so minor a problem compared to what I was dealing with.

So, this is going to be a great day! I just feel it!!

First Impressions of Last Night's Sleep Study

I spent the night at the Sleep Study's Research Center last night. The room was luxurious, and since I cannot sleep on a flat bed, I specifically requested the one room they have that has a Tempurpedic type mattress on an adjustable bed. I have been interested in this type of bed for several years, thinking I might be able to get back into the bedroom with hubby, if we had one of those King size adjustable beds with the split. That way I could set my side for a recliner like position, while hubby could sleep flat. It's been years since we have slept together, and I would love to be able to have that closeness again.

Well, to say the least, I was disappointed with the bed. I tossed and turned all night, trying to find a position that would not make my back spasm. I ended up sleeping in this hole where my bottom was. I had just as much trouble with back spasms all night long as I do on a flat bed or the hospital bed I slept on for the first Sleep Study. I am glad I had the opportunity to try out this type of mattress and bed, as they cost up in the 3 to 5 thousand dollar range. It would have been terrible to have spent all that money and not be able to sleep comfortably.

As for the Sleep Study itself, I used the TAP dental appliance set to the easy setting I've been using ever since my neck muscles started spasms. I was hopeful that this smaller amount of forward movement of my jaw would be sufficient to stop the apnea. From his preliminary review of last night's data, my Sleep Disorder Specialist was very encouraged that the TAP is working just fine for me. He also agreed with me that my daytime sleepiness is from the PD meds, not from any underlying medical issue. This is the best possible news for me. He also said he would be glad to help with the documentation to help me to get Blue Cross/Blue Shield to reimburse us for 80% of the $1000 we spent up front on the TAP.

So, with my sore back and scalp full of gooey glue, I am happy. I fought the good fight to get used to the CPAP masks, and failed. I kept adjusting the lower jaw advancement on the TAM, until I put my whole neck muscles into painful spasms. Then, because of the pain, I backed off by several turns of the key. And it paid off, as I have evidently been able to get the apnea controlled at a comfortable setting.

Today is a GOOD day!!

Just When I Start Sleeping Later ... THE TIME CHANGES!!

I can't win for losing! LOL!! I was finally putting together a string of days when I slept until close to 5:00AM, a real accomplishment for me, when the Daylight Savings Time changed on me this morning. So, I've been up since "3:30AM", even though my brain thinks I slept until 4:30AM. I am very pleased that I slept over 7 hours, but I know that I always have a hard time adjusting to these time changes. My appetite gets off schedule, and it has always taken me quite a while to adjust to the different sleep times. Plus, I have my Sleep Study this week. Not the best timing in the world, but it will have to do.

My neck is much better this morning, with pain and stiffness only when I try to turn almost all the way to the sides. I have been very careful with this spasm episode, trying to be very cautious with any stretches, trying to move just to the point of pain, but no further. I have not tried to advance the TAP screw any, since this spasm hit, but I am sleeping with the dental appliance every night.

I have reached an amount of extension of my lower jaw that makes it harder to get the pieces in my mouth. Now, I have to connect the two pieces before they go in my mouth, and then jut my lower jaw forward to meet the mouthpiece. Before, I could put the two halves in separately, and jut my jaw forward to hook them together. I can't unhook them in my mouth any more in the mornings, either. I have to break the seal with them still hooked together. That's not an easy thing to do, as they really fit tight. Of course, it's because they fit my teeth so perfectly that this contraption doesn't hurt, so I'm not complaining.

I exercise my jaws with the chewing pieces every morning while I'm on the computer, and don't even really have to think about it. It's about like chewing gum, really. Then, I also do a series of facial grimacing and stretching exercises for my Parkinson's, to delay the time when I will lose facial expression. The chewing strengthens my jaw, and should actually help delay the "Mask of Parkinson's".

I am in a better mood generally since I started taking the Bentyl, which is an antidepressant as well as an antispasmodic. I'm taking it to soothe my spastic colon, but I'll take any mood improvement I can get! I've managed to get started on several projects that I was previously just overwhelmed by, so that's a good thing. I even managed to put something new on eBay several days in a row, and posted some new requests for people searching for lost loveys on our Plush Memories blog. I'm still way behind on that, though. But I'm completely caught up on the BLOG VILLAGE membership screenings. The house is still chaotic, but that's nothing new. I never was a very good housekeeper, sad to say. I do love it when it's all uncluttered, but I never have been able to find the gumption to keep it that way. All in all, though, I can tell that I'm getting out of the doldrums I've been in for some time, and that's a very good sign!!

Still Having Problems, But I'm Sleeping Longer!

I have managed to "stay in bed" for over 7 hours now 4 nights in a row. I wish I could say that means I was asleep the whole time, but that hasn't happened yet. It is still a considerable improvement, however. The last pill I take at night is the Bentyl, which is supposed to calm my colon and prevent the spasms that have been plaguing me for so long. It is an antidepressant, so I suspect that may be at least part of the reason I've been able to delay getting up as well as I have been. I continue to wear the TAP each night, so maybe it's a combination of both of them. Whatever it is, I'm thankful for it.

I've spent the last three days trying to overcome the stiffest neck I've ever had in my life. It started Wednesday evening, out of nowhere. I could feel the neck muscles all tensed up, and it was impossible for me to turn either way more than a couple of degrees. I tried the hot pad, plus took some Tylenol, and hoped I would sleep it off. I also did not wear the TAP that night, thinking that might make it worse. It was still extremely tight and painful all day Thursday, but I did go back to wearing the TAP. Nothing seemed to make it go away. It was considerably better by Friday, although I did take some Arthritis Strength Tylenol to get to sleep. Now, I am able to turn my head both ways maybe 45 degrees each way before the pain stops me.

I'm not really sure where this spasm came from. I did work out in the yard Wednesday more than I have been, and I could have over done it there. Or, it could be that I have turned the TAP screw past what my jaw can handle. Just in case it was the TAP, I backed up several turns on it to give my jaw muscles a rest.

I did get my flu shot this week, with no side effects at all. And I made sure the nurse put the information in my records about Celestone causing me to have such a horrible Parkinson's episode. I have not yet returned to the state I was in before the steroid shot, so I guess I won't be getting back to that point. It's been too long now. If I were going to recover completely, I would have by now.

I am still having those weird spaced out episodes after lunch mostly. I've tried eating meat, not eating meat, staying away from any protein, eating normally, eating things I'm not supposed to eat, like pizza, and eating very carefully selected IBS foods. Nothing seems to be an obvious trigger, so I'm left to think it is the medicine itself doing it. That would be the noon dose of Levadopa/Carbidopa (Sinemet). I'm not sure why I have more trouble with the noon dose, as I take this med with all three meals. It remains a puzzle.

I've been working hard on several computer projects lately, so I'm behind on listing items on eBay. I have got to get that done today, though, as we are being squished by all the bags of plush toys packed into our two spare bedrooms. LOL We buy them faster than I can sell them!!

So, I guess it's time to quit blogging, and start taking some photos!!

7+ Hours Sleep Again!

I was able to stay in the recliner for over 7 hours last night! I'm still getting up several times to go the bathroom, but at least now I'm able to get back to sleep. I figure I'll try turning the screw to advance my lower jaw maybe one or two more nights, and that should be enough. I'm making the Sleep Study appointment today to see if it's controlling the Sleep Apnea properly. If it's not, I can always advance it some more while they monitor it, until I find the right spot.

I will get an appointment for the flu shot today, too.

I'm also going to make an appointment with a Dermatologist today. I don't want to ignore the fact that Parkies have a higher rate of Melanoma than the general population. Particularly since I've inherited a tendency to have lots of moles, some quite large, from both of my parents.

I've never been to a Dermatologist before, but I've learned my lesson and intend to get one who uses the hospital I like. There is a lady Dermatologist associated with my preferred hospital, and I think I would be more comfortable having every square inch of me examined by her, rather than by a man.

My inability to control my emotions is still a very aggravating problem. I started looking for some important insurance paper work this morning, and couldn't find it. I've kept up with that stack of papers for several years now, but when I started to make a phone call referring to it, it was nowhere to be found. After searching everywhere I might have filed it, then looking in places I should not have filed it, I fell apart. Blubbering like a baby and getting DH all upset trying to console me. This awareness of my mental abilities deteriorating right before my eyes is extremely disconcerting.

I finally did find the insurance papers I needed, stuffed in the file folder with the information about Pop's monument that I had worked on the same day I had been working on the insurance. This is some paperwork left over from when DH's Pop died, as we were the executor of his estate, too. Not long after he died my dear hubby had colon cancer surgery, so some of the less urgent parts of settling Pop's estate just got pushed to the background. Now I'm trying to finish all of it up, and get my Daddy's all finished, too.

So, all in all, it's been a productive day, as I was able to get done what needed to be done toward cashing the insurance policy, and I'm going to call and make the appointments just as soon as the doctors' offices get back from lunch.

Once this insurance policy is dealt with, the only things left to take care of are the monuments. Pop's should have already been engraved, so when I talked to the cemetery people, they were extremely apologetic that it had not already been done. And I haven't even started on getting Daddy's information added to the headstone.

I'll be glad to have all this paperwork finished! Daddy's estate will get out of probate at the end of November, and I need to be through with everything by then, so I can quit stressing over it.

YIPPEEEEE! 2 Nights in a Row!!

I slept for 7 hours last night and the night before, and I'm ecstatic about it! I hope that means I have found the right amount of gap on the TAP to take care of the Sleep Apnea. I haven't moved the bottom jaw in front of my upper teeth by much, but it may be enough for me, since it took quite a bit to get my bottom teeth lined up with the top ones to begin with, thanks to my natural overbite.

This appliance is fairly easy to get used to, far more so than any of the CPAP masks I tried. I can turn on my side without a problem, and I don't feel the least bit claustrophobic with it in place. It does require some rather vigorous jaw exercises each morning, to be sure the bottom teeth move back into their normal position. That leaves my right jaw a little sore for awhile, but it's not bad and it goes away by the time I eat breakfast.

Some Things Better, Progress with Others

I've been busy the last few days trying to get used to the TAP and regulating my meds and diet to try to deal with the colon problems I've had for well over a year now. The TAP dental appliance is doing as well as I would expect. I slept about 7 hours last night, which is a huge improvement for me. I am still waking up a couple of times in the night to go to the bathroom, though, so it's not yet a completely restful sleep. It's time for me to make an appointment for a new Sleep Study, to see if the device is handling my Apnea appropriately. That will be the determining factor on whether I can get my insurance to pay for the TAP or not, and whether it's worth using.

I am pleased to see that there is a way to use the TAP device as the anchoring mechanism for a CPAP mask, if it becomes necessary to go back on that. A nasal pillow delivery system can be attached directly to the dental appliance, so there would be no straps or mask all over my face. That's encouraging, as it means I can look forward to either getting by with just the TAP, or the TAP plus CPAP - but NO MASK!!! So, I'm very optimistic about the coming Sleep Study.

As for the elimination situation, I am somewhat improved, although certainly not where I would like to be. I'm still belching and having gas problems, but not having as much trouble actually going to the bathroom as I was. So, the Acidophilus, the Bentyl prescription, and an extra Metamucil capsule a day seem to be the right plan of attack for that problem.

DH and I have been searching for some practical ways for me to keep track of all my pills, the dosing times, and a way to effectively keep me on schedule. I seem to have some kind of Freudian aversion to remembering to take my pills. I hate having to take so much medicine, and I think it's causing some kind of passive aggressive reaction that I'm going to have to overcome. We've taken some positive steps to get over this hump. We bought two Plano tool/fishing tackle boxes, each with 4 storage boxes in it. That gives me enough boxes for 8 days, so I can make up meds once a week and have a spare. Right now I am taking medicine at 12 different times a day, so I put a numbered sticker in the bottom of each little compartment, with the dosing time on it. I can take the small box for one day with me wherever I go fairly easily. I even found that I could use my Bible cover to "hide" my pills on Sunday. I just carried my Bible loose and put the pill box in where the Bible would have been. I have to take a dose between Sunday School and Church, so this worked nicely.

Getting me on a dependable schedule was the next problem to handle. I searched for days all over the Internet, looking for pill reminder systems that I thought would work for me. Most would not give enough alarms to suit my needs, or any PWP's needs, for that matter. PWP tend to take our meds closer and closer to each other as the disease progresses, so it's not unusual for a Parkie to be taking something every hour during the day, and even getting up in the night to take something. Also, some of the more promising systems only allowed you to set pill reminders from say 8:00AM to midnight, and my first pill is at 5:00 AM.

So, I ended up buying a Timex Ironman Data Link watch, which can be connected to the computer via USB. It's like having a PDA on your wrist. It came yesterday, but I have been studying everything I could find about it while I waited for it to come, and I had my pill schedule all ready to send to the watch. It worked like a charm. It beeps and the face lights up and flashes for several seconds, and the names of the pills I need to take scroll across the watch face. If I don't push a button on the watch, I get another reminder in 5 minutes. Since I'll be wearing it, I'm much more likely to heed the reminder. I also have the reminders set up on Outlook, since the computer is on all day long, anyway.

The watch needs to be quite large, as you might expect, so it's the size of a man's sports watch. I don't mind that, if it keeps me from forgetting a pill, as I have been prone to do. For now, it's in my pocket, because I'm going to have some links taken out of the band. There's a lot to learn about this watch, but the main thing for me was the Alarm mode, as it allows up to 200 alarms a day! And that was super easy to get up and running.

My tremors still remain, not as bad as they were when I went to the ER, but still enough to make me feel like I'm trying to walk on Jello, and it gets worse as I get tired later on in the day. I use the walls and the furniture here in the house to steady myself, and I have managed to do without my cane at church, by the hardest. But anywhere else we go, like our Date Day, or to go out to eat, I'm using the cane. The hand tremors are also more prominent, and don't seem to ever go away completely, but I can handle a fork and spoon OK, and type, so I can live with that.

My biggest problem has been the odd about to pass out feeling I've been getting after lunch and supper, but not breakfast. We've checked my blood pressure during a couple of these attacks, and it's always low, like 98/58 low. I can't do much but sit very still and wait for the feeling to pass. I have found that eating something sweet makes me feel better, but that may just be because it's a comfort food for me. Or, it may means that this feeling is from a low blood sugar situation, rather than a low blood pressure one.

We may have narrowed it down to being an interaction between the Sinemet and the protein in my meals. Yesterday, just as a test, I had a vegetable lunch without any meat, and I did not have the weird feeling later on. So, I'll try that again for a few days, and see what happens.

Dear sweet hubby took over the compost making task for me for the last couple of weeks, but I did it all by myself this morning. I'm very tired, but feeling good that I was able to accomplish it. I'm also sweeping off parts of the driveway almost daily now, and the deck and patio underneath every once in awhile. That gives my arms and shoulders a good workout, and it's good for my balance, too. I'm also using the trekking poles the whole time at the track now, where I usually do 3 laps, and then the leg exercises and my Tai Chi. My balance is still way off, so the Tai Chi looks pretty ragged, but I'm doing it anyway. After all, nobody but me knows just how pitiful my form is, right? ;)

So, I see progress with several areas of concern, but disappointment that I am in nowhere near as good a shape as I was before I had the Celestone shot that sent me to the ER.

I continue to try my best to live each day with a positive outlook, and I think the Bentyl has helped with the depression I was dealing with.

Took a Rest from TAP

We went to the dentist yesterday for our regular cleaning appointments, and I took the TAP paraphernalia with me. I have noticed a faint clicking sound when I talk, which made me think it needed some type of adjustment. He agreed, and was able to add a little blob of something to the back surface of the mouth piece. It is supposed to equalize the pressure on my jaws for holding my mouth open for all that time. I had the denture parts in and out of my mouth several times before we left.

But when I tried to get them on last night, I couldn't get the dental appliance on my teeth. After considerable finagleing, I managed to get the upper and lower part in, but then I had trouble latching the hook in front to connect the front and bottom sections together. So I took them back out and checked to see what the setting was marked on the device. That's when I knew something was wrong with it, as it was way too high a setting for me. I changed the length of the mouth gap with the key that is provided until it felt comfortable again.

But once I had it in my mouth, I realized that some of the material he had used to build up the back of my jaw a little bit had landed in the wrong place, too. This has left a rough spot right where my tongue can get to it. Now, you may not be like I am, but if I have a sore or anything else that is a temporary visitor in my mouth, my tongue will rub on it compulsively.

That rough spot sent my tongue into obsessive orbit, every time I realized I was touching it. So, I didn't sleep in the TAP last night, and I'll have to see Dr. Deep today to get it smoothed out.

I used the cane all day yesterday, as was extremely wobbly, nervous feeling, and generally feeling like I have Parkinson's, but managed to do everything that I wanted to do for the day. We did get the handicap placards, which will be perfect for those days when I have trouble moving, even with the cane.

Catching Up

My Gastroenterologist finally found an antispasmodic that I can take with all my Parkinson's meds! I've been on it for several days now, and things have improved somewhat. Of course, I've also added the Enteric coated Peppermint Gel Caps, Turmeric, and Acidophilus.

Well, I went to see Dr. S Friday, and he said pretty much what I expected him to. Since I was taking 4 prescriptions that had just been added in the last two weeks, in addition to the OTC meds that I have added, he wouldn't even discuss dosing or changing meds. He wants me to come back in about 2 months, after I have had the Sleep Study with the TAP dental appliance in place.

I had printed out a nice neat list of all my meds, with the times I take them, and I asked him to take a look and see if he thought I had spread the meds appropriately. He didn't see anything wrong with it, which made me feel good. It took quite a bit of time to figure out how I could keep certain meds away from each other, and take into account such things as having to be on an empty stomach.

I asked for the form to get a handicap parking placard, too. It's time. On good days I won't need it, but the way I've been lately, I will definitely have to have it available. It is sad to see that check mark in the Permanent Disability box, though. We have dentist appointments tomorrow, so we'll take care of it then.

I have been using the trekking poles for the last week or so, since I've been so wobbly. They make all the difference in the world. I'm wobbly when I try to walk unassisted, but I can stride along at a good clip when I use the poles. I walked a mile this morning, with the poles, even though I'm holding onto furniture and walls to navigate in the house. We bought one adjustable pair some time ago, figuring we could get another pair later, if we thought they were doing any good. We'll buy another set tomorrow while we're out, too.

I've made 2 quarter turns on the TAP device now, but I couldn't feel the change when I turned the key. Each quarter turn pulls my lower jaw out about the distance of half the width of a dime. I'm still getting about 5 hours a night, but I am not sleepy when I get up around 2 or 3AM. Of course I go to bed around 9:00PM. I still get miserably sleepy in the afternoon, but I don't take a nap. I'm afraid if I get in that habit that I won't ever sleep any longer at knife.

I could feel a huge weight lift from me when I got the call the other day from my Gastro to tell me to order Bentyl, also called Dicyclomine. If I had been there in his office, I would have given him a huge hug!!

So, I continue to stay busy, trying this and trying that, hoping to get the best results possible toward the goal of living as "normal" a life as possible.

Update on Dental Appliance for Sleep Apnea

I've been wearing the TAP device for the last three nights, and thought I'd better let you know what I think of it. All in all I'm very pleased. It's certainly easier for me than trying to get used to the CPAP mask was. I would be lying if I said it is comfortable, but it's not painful and I am pretty sure I will eventually wear it without particularly noticing it. I guess it's about like wearing glasses for the first time.

There are a few things that have to be part of my routine now, because of the dental appliance. It is absolutely a must that I brush my teeth every night, something I've never really had a consistent habit about, hanging my head in shame, as I usually fall asleep in the recliner while watching TV. If I don't, I'm just asking for a bunch of cavities. Also, I have to brush the mouth pieces every morning when I brush my teeth, and leave them out to dry thoroughly.

The big change is that there are two small pieces of pliable plastic that I have to stick in between my teeth at the corners of my mouth every morning to chew on for awhile. The idea is that the TAP pulls the lower jaw forward for sleeping, so in the morning, I have to move my lower jaw back into it's normal position, so my bite will be correct. It's kind of like chewing gum, I guess, but there's no taste. It's not hard to do, but it's absolutely necessary. It's supposed to strengthen my jaw muscles, too, which will be a good Parkinson's exercise. PWP lose the ability to control their facial muscles eventually, so this should help me forestall the expressionless Parkinson's Mask, as it's called.

I haven't made any turns on the device yet, so I'm still wearing it at the first setting, which has my upper and lower teeth meeting in the front. Now, for some of you, they already do that to begin with, but I have a noticeable overbite. That overbite is one of the main reasons my Sleep Disorder doctor thinks this dental appliance will stop my Sleep Apnea. I figure I'm going to be wearing this thing the rest of my life, so what's the rush. I want to get used to it first, before I start cranking my jaw out any further, particularly since it's already set to move my lower jaw out a good bit just to make my front teeth meet.

As far as my sleeping goes, I haven't been doing much of that. I don't really think it's because of the dental appliance, though. I've taken Lunesta two nights now, and still didn't sleep more than three or four hours. I made it to five hours last night, without a sleeping pill, which is the best this week. I've never found a sleeping pill that really worked well enough on me to justify taking it, so I can't say I'm surprised the Lunesta didn't help.

I've been pretty upset with other things that have been going on with my Parkinson's right now, and I think that's cutting into my sleep. Also, I'm on several more PD meds since my ER visit, and they may be making the insomnia worse. And, even with the extra meds, I'm still wobbly, although nowhere near as bad as I was before I went to the ER.

I am having some spells of being extremely spacey and unsteady, which pass after about an hour or so, usually right after meals. I'm guessing it's the combination of all the PD meds I'm on right now, but my Neurologist will straighten that out for sure. I have them all spread out as best I could, so I'm taking something about every hour or two all day long.

I see my Neurologist tomorrow, and I'm very hopeful that he can sort out what needs to be done to help the insomnia and also give my Gastroenterologist some suggestions about medicines I can take to calm the colon spasms. He may have to change some of my PD meds, so that I can take an antidepressant, as that is the class of drugs that the colon relaxing medicines fall in. Oh, I forget to mention that I stopped taking the St. John's Wort after the first day, as the more I read I realized it was in the category of an antidepressant, and I can't take those right now.

So I'll spend today looking forward to tomorrow and some answers, I hope!

Walking on Jello

The saga of drug interactions continues, evidently. I had a Celestone shot on Thursday to get the poison ivy under control, as a steroid shot always does the trick for me. My regular doctor has given these to me several times in the last few years, so I was not surprised when I woke up very nervous Friday. That's pretty much par for the course, plus they make it hard for me to sleep, too. So, I tolerated the shakiness Friday, and we continued with our Estate Sale hunting and went to see our younger DD for an overnight stay.

By Saturday morning I was even shakier, but we had a long way to drive home. I kept the way I was feeling to myself, figuring it would go away, and I did feel better after we ate a big breakfast. But, this morning, I was in really bad shape. I was shaking all over and holding on to furniture and the walls to get around. When my hubby got up several hours after me, I was worse. So, I called the Neurologist's answering service and the doctor on call promptly called me back. After listening to all this, he told me to go to the ER. He said he was concerned it was an infection (I didn't think so, but?) and they would be able to give me something to stop the tremors. So, we were off for the hour long drive to get to the ER, with DH trying his best not to show just how worried he was about me, and me trying my best to be still.

They took me right away, but it still took quite awhile to get the results from all the blood work they did. They did not find signs of any infection, and concluded, just as I had, that the steroid shot had precipitated this acceleration of my symptoms. So, armed with four prescriptions and orders to see my Neurologist this week, they sent me home.

So, at least for now, I'm back on Sinemet, which is the "Gold Standard" drug for Parkinson's. Since I was so nauseated with it when I took it for the Sinemet Challenge that confirmed my Parkinson's diagnosis, I had asked the ER doctor to also give me a prescription for Lodosyn, Carafate, and Phenergan. This is where my journal of everything that has happened since my diagnosis came in handy. I was able to show him in my journal that this is what my own Neurologist had put me on way back in September of 2006, when I got so nauseated with the Sinemet.

So, I'm typing this with a fairly steady hand, with all these extra meds in my system. I have an appointment tomorrow with my Gastroenterologist to find out what he thinks is going on with my digestive tract, and as soon as I know what is going on in that area, I will make an appointment to see my Neurologist.

This whole experience has been very upsetting to say the least, not only for me, but for DH as well. I hate it that he's having to take care of me the way he's had to. I hate it that I couldn't stop myself from shaking. I hate it that the ER guard came immediately, being so very solicitous, wanting to get me a wheelchair, as I was obviously so feeble looking, wobbly cane and all. I hate being this way. Today I got a glimpse of what the future holds. I hate it.

Impressions are Made

I went on a feverish research marathon on the internet night before last, and printed out a bunch of pages of different dental appliances for sleep apnea. I also found several pages explaining exactly how to talk to my Blue Cross insurance people in order to have a fighting chance of getting this thing covered by my medical insurance. This sort of appliance does not fall under dental, as it really has nothing at all to do with the teeth. I printed a list of possible side effects, too, just in case I had any problems. Troubles are always easier to cope with for me, if I know I'm not the only one having them.

So, armed with all my paperwork, I went to my own dentist yesterday and had a long talk with him. I really like him, and have been going to him for many years. In fact, he has crowned almost every tooth in my head! LOL That's just as well, too, as this appliance would not work if my teeth were not strong and in good condition. But, I digress. I was pleased with what he told me about how he did this process, but even more pleased when he brought my very own hygienist in to talk to me. It seems that she uses the very appliance that he was recommending! She explained that she could move her mouth around with it on, and that was something I was particularly concerned about.

She also told me about the exercises you have to do each morning when you take it out. If you don't do that, you will pull your bite all out of alignment, not to mention have a lot of jaw pain. That's not a problem, as I have to "exercise" my face muscles every day anyway, as part of my Parkinson's exercises. These are designed to forestall the mask look of PWP. We lose the ability to use the fine muscles that control facial expression, and these exercises are supposed to prevent that. I don't know if they will, but I intend to try, anyway. So, adding in some jaw and mouth exercises will be easy enough.

So, I did it. I had the impressions made and paid out 1,000 big bucks right there on the spot. That's not cheap, by any means, and it certainly means I'd better be right about this one!! If you thought I was stubborn about trying to get used to the CPAP, just wait and see how stubborn I can be with that much of my own money invested in it! LOL I really feel like this is something I need to solve the insomnia and resultant brain fog I deal with every day now.

Of course, I will do everything I can to get reimbursed by my insurance company, but I had already decided I would do it, covered or not. I did call the insurance company yesterday to find out what forms I needed to get this approved, and then my Sleep Disorder doctor's office to ask them to get Dr. A to fill them out. So I've started the ball rolling, anyway. I made sure I got the medical code for this appliance from the dentist's office, too, so I could use that in my argument for coverage, if needed. I would not have known to do any of this if it hadn't been for a dentist somewhere in California, of all places, who had a whole page explaining exactly what to do to get this appliance covered. Ain't the internet great?

While I'm waiting the three weeks it will take to get this in, I'll work to get the skin around my mouth back in good shape. Those masks have really done a number on my Acne Rosacea, with dry irritated patches all along my mouth on both sides down to my chin and across. My skin usually takes awhile to heal, once I get this irritated. I quit wearing makeup years ago, because everything broke me out, and I have to be very careful about any soaps or medicines I use on my face. That alone made me a poor candidate for cpap. Adding in the degenerated disks, which required that I be able to move around in my sleep, and I hope I can make a good case that using this "custom fabricated device" is a "medical necessity," as the insurance company requires. Both of those conditions are documented in my medical records, so I think they have a fight on their hands if they try to deny this claim. I'm loaded for bear, and ready to take them on, but, hopefully, they will agree and I won't need to fight them. I really don't need that extra stress. But, what will be, will be.

Getting rid of the cpap frustration and looking forward to getting the dental appliance has improved my mood considerably, so I remain positive that everything will work out for the best. I do covet your prayers and good thoughts that I will find adjusting to the mouth piece to be an easy transition.

The device I'm getting is called a TAP, which stands for Thornton Adjustable Positioner, and you can read all about it here and here, if you're interested.

CPAP Goes Bye Bye

We turned the Cpap machine back in to the Durable Equipment Company yesterday. I struggled for 6 weeks, trying to adjust to different masks, but I never could find anything that worked properly on my face, with my Acne Rosacea skin problems, and giving me the ability to sleep on my side comfortably.

So, I saw the Sleep Disorder doctor yesterday, and he agreed that I was just not a good candidate for the Cpap option for controlling my mild Apnea. He agreed that I probably needed to control the apnea I have, even though it's mild, because I still have insomnia, and it's affecting my thinking skills and leaving me exhausted every day. If it weren't for the Parkinson's, I don't think he would have ever put me on a machine to begin with, as I have an apnea score of 10. That's probably as low as it goes, from what I understand. That means 10 episodes of apnea an hour. But if I were to get a full night's sleep, that means as many as 80 times a night I would momentarily stop breathing. My brain can't afford that amount of disruption, as part of it is already working on 20% efficiency - the part that makes dopamine.

So, we've moved on to another possibility, and that's to get an oral dental appliance. I've been doing the research online, and this looks like a good alternative for me. I won't have deal with skin irritation, as there is no headgear, and since it doesn't depend on any kind of forced air, there won't be any leaks. It still means getting used to something foreign, in this case a mouthpiece specially molded to my teeth by the dentist. This contraption is designed to pull my bottom jaw forward as I sleep, much like the way a medic does when they give CPR. That opens the airway, and should prevent the apnea. The tension on the jaw is done gradually, so the body has time to adjust, at least that's the way it's supposed to work.

I have an appointment today with my own dentist, to see if he could do the work or not. His office said he could, but I'm not so sure about that. This sounds awfully specialized to me. But I trust him to tell me if he can or can't do it. If he can't, the Sleep Disorder doctor will send me to an oral surgeon to get one. I will need to have another sleep study after I've been on the appliance long enough to pull my jaw forward, but that's no big deal.

The other area of concern is that this is probably not going to be covered by my insurance, the way the cpap was. I will be talking to them today, to see if that can be worked out. I did find a very detailed explanation of what needed to be done to get an insurance company to accept the procedure as insurable. I'll be using what I learned there to help me fight for coverage, if necessary.

I am very thankful that we are financially able to consider something like this, insured or not. I read what had to be done to get Medicare to pay for an oral dental appliance, and it involved paying for before and after sleep studies, plus paying for the mouthpiece itself, and then trying to get Medicare to reimburse. That's an awfully expensive proposition. At least my insurance will pay for the Sleep Studies, if nothing else.

The biggest drawback, at this point in time, is that there is no guarantee that I can adjust to the feel of this thing in my mouth, any better than I did the cpap mask on my face. And this can't be turned back in for a refund, the way the cpap machine could. We did get stuck with the mask part, though. We're stuck with the expense of the dental appliance, like it or not. It's not like you could turn THAT back in for a refund! LOL

DH and I feel like it's a reasonable use of our money, though, so that's not going to stop me from trying this procedure. I'm not a quitter, and I intend to keep trying, until we find some way to improve the quality of my life.

Cpap Adventure Continues

I've been on the new full face mask for a week now, with one extremely good night's sleep, night before last. I've been awake since 12:30AM today, though. I woke up with air just jetting out from under the bottom of the mask, where the silicon soft part had come out of the plastic part of the mask. By the time I woke up enough to realize what the problem was, and then fixed it, I was wide awake. I'm also continuing to have problems with my skin. I'm ready to try the all over the face kind. That's not supposed to irritate skin, as it fits at the hairline and all around the face completely. This is the last style there is, basically, so I'm about to run out of options, other than not use it at all. That 8 hours of sleep on Sunday night gave me such high hopes, too.

I continue to struggle with terrible gas, and I'll be calling my Gastro's nurse today to report in. Stopping the Amitiza just didn't help any. Nothing has really changed as far as feeling like something is wrong with my elimination process, either.

We walked at the track again yesterday morning, after several days off. This time it was due to DH having some pains, as I think he over did it when we started back walking the other day. Hopefully, he'll be OK this morning, and we can get our walk in. I also worked in the yard early yesterday morning, putting another pile in the Lasagna Compost area and digging around the foundation of our new garage. We need to get a drainage ditch around the front edge, so I'm hoeing just a little bit each day. I'm also trying to sweep off the driveway every day or so, as that is good exercise for my shoulders. It sure does feel funny, though, trying to sweep left handed. But I need to exercise both shoulders, so I do it, funny feeling or not. And boy, am I right sided. I'm pitiful trying to sweep "backwards". LOL

I've been doing more research, trying to see if there is anything I've missed about CPAP. I did find that I'm supposed to have the machine below head level, a fact that escaped me somehow. I didn't keep it on long enough last night to know if that would stop the "rain out", as it is called. That's when the humidifier in the machine causes condensation in the tubing, because the air in the room is cooler. I can't do without the moistened air, so I will need to deal with the condensation. It got so bad one night that it sounded like the thing was gargling!

I was also trying to find out of the machine is aggravating the gas I'm having, and yes, CPAP does often cause that, as many people swallow the air. It's supposed to be something you grow out of, and can be lessened by using the Ramp Up switch, which starts the pressure lower so you can go to sleep easier. I hadn't been using it, since going to sleep has never been my problem. But I did use it last night, and will from now on.

For all that I'm discouraged this morning, after so little sleep last night, I am still hopeful that I will adjust to the CPAP. I'm not so optimistic about my digestive system problem, though, and I am still wanting the colonoscopy. My legs and hands continue to be swollen with fluid, too. We'll see what the doctor has to say today.

Trying a Different C-PAP Mask

This makes the fourth different style of mask I've tried, if you include the nasal pillow they put on me in the Sleep Study that I almost went hysterical over. And, this is the last one they have for me to try. So, it's get used to this one, or I'm just not going to be able to do it. The only other chin strap they had was just not what I had in mind, and I could tell it wouldn't work. And, I would have to have paid for a change on that, unlike the mask itself. I have 30 days to decide if I can tolerate this mask.

I had initially categorically turned down even trying on the full mask, which is what I am trying now. At that time, I was still adjusting to the whole idea of it, and the thought of having nose and mouth covered up was just too claustrophobic sounding to me. Now, as I have gotten used to having this claw on my face, it seemed like it was worth trying, as a last resort. It does solve the mouth breathing problem, without having to wear anything extra. And that's a big plus. It leaks though, as I have no chin, and a pug nose, with nothing for it to hold onto. I did sleep longer last night than most nights, so that's a positive sign in the right direction. When I woke up at 2:30 to go to the bathroom, though, I couldn't get it to stop leaking cold air down my neck. By the time I readjusted it somewhat, I was wide awake. I made myself stay there until almost 3:30, though, figuring it would help me adjust to it, even if I were not asleep.

This whole frustrating experience has really been a test of my patience and commitment to see this thing through. Things have always come pretty easy for me, if I really wanted to learn how to do something. I'm not used to having to work so hard to adjust to something new, so this has been a real challenge. DH says when I get mad at the straps I look like I'm about to have a conniption, flailing at my face and yanking the straps off. ROTFL But it's no laughing matter at the time. I have a new appreciation for students of mine over the years who would get so frustrated when they didn't understand the math I was trying to help them with. A pity that I hadn't had an experience like that then, so I could have been more empathetic.

My Sleep Apnea is only mild, according to the doctor, so it's not like I'm going to die in the night if I don't use the machine. But, he wants me to use it, because he feels it will help with my PD symptoms, particularly the brain fog and fatigue. I would love to get out of this haze and have more energy, so I'm trying, really trying to make this work.

I would appreciate your prayers and good thoughts to help me be comfortable with it, as I continue to pray for this each day.

Bits of This and That

I've been a good girl, and I've tried to use the C-Pap machine every night. I can only say try, because I'm still not using it all night long. I did manage to keep it on for 6 hours on Saturday night, and I thought I had it licked. Then last night I couldn't stand it past 1:30AM.

I'm pretty much used to the nose canula now, but the chin strap contraption is quite another matter. I'm going to call the tech again this morning for another appointment, since I only have another week before I'm stuck with whatever equipment I have after 30 days. I have Acne Rosacea, which normally is not a problem for me, as I quit wearing makeup, except for lipstick, many years ago. The reason I bring that up is that all these straps and bands is irritating my face. I'm starting to get red patches around my mouth where the chin strap is rubbing as I turn in the night. There are several other types of chin straps available, so I'm hoping she can find something else that I can use.

We're in the middle of a cold wave right now, with high temperatures in the 90's! So, DH got up this morning in the mood to go walking. We were out at the track at 5:15AM, and there were already people out there walking. It's really the only time of day that it's safe to be doing it right now. I did 3/4 mile, plus my knee and shoulder exercises, and the Tai Chi, while he did 2 miles. Not bad for the first time we've been there in several weeks. Of course, I've been walking around at home and working a little bit in the yard each morning, so I was not out of shape too badly. Maybe tomorrow I'll walk a mile, but I won't push it if I'm not ready. I learned that lesson really well.

The gas is still just as much a problem as it has been, and I'm supposed to call my Gastro this week to let him know how I'm doing. I'll wait a few more days, just in case DH's explanation is right. He thinks I need to give myself a few days for the colon to adjust after the GoLYTELY, and he's probably right.

I also noticed that the tremor in my hands is becoming more noticeable, and showing up more often. I've not had tremors up until recently. Balance wasn't so good yesterday, either. But I'm not in walking shoes on Sunday morning, and that could be it. I am wearing flats, with as much support as I could find, but I never feel as secure when I wear them. I'm not sure what I could wear that didn't look like athletic shoes, but I'm going to have to find something. Part of the problem right now is that I have more tissue swelling than I have been having. I've been on a diuretic for a long time, even before I was diagnosed with PD. But now, my fingers are so swollen that I can't completely close my fists. My ankles are badly swollen, too, and my weight is up, which I'm assuming is fluid.

So, I'm still dealing with lots of little problems, none of which, hopefully, are serious, but all are things that lesson my quality of life. I am thankful that I am in as good a shape as I am. Reading about all the problems that other PWP have makes me feel very blessed that I have a wonderful hubby to help me when I need it, and sympathize with me when I need that, too. I feel for those Parkies friends whose symptoms are so much more debilitating than mine are, and pray that they have a good day today.

Trying a Different C-Pap Mask

I took the c-pap stuff back to the supplier yesterday, and they have changed me to a very soft nasal "plug" that doesn't have nearly as much strapping all over my face as the nasal mask did. I slept 6 straight hours, without getting up at all. I can't remember how long it's been since I did that. It's not perfect, as my nostrils were sore this morning, and I can still feel the thing, even hours after it has been out. I've always had this odd thing where I could "feel" a hat long after I had taken it off, and this canula is doing the same thing.

I have hope now that I will adjust. The frustration I was feeling with the other face mask was really wearing me out. It's a good thing I don't cuss! LOL

I'm calling the Gastroenterologist today, as I want the colonoscopy for my peace of mind. I'm still not satisfied with my elimination situation. We took our kittens to the vet this morning, and I got light headed and had to sit down quickly, because we were standing, waiting for the vet to come in our treatment room. I blame that on my tummy, as I felt better after I excused myself and used their facilities.

I've started going out in our yard and working just as soon as it's daylight, as it's just too hot later on in the morning. So, my exercise routine is back on track, with walking and Tai Chi every day, plus working for a little while in the yard. By the time I come in around 7:00AM I'm drenched in sweat.

I'm definitely going to have to get my Neurologist to prescribe something to stop this excessive crying I'm doing. I broke out in blubbering at the c-pap office, trying to tell the tech how frustrated I was trying to adjust to the mask. I have learned that this is called emotional lability, and it is a PD side effect. He doesn't want to change my meds until I get the cpap and elimination situations settled, and that makes sense.

So, some things seem to be getting better, and others aren't.

In Wait and See Mode

The CPAP machine is getting a little bit easier to stand now, but I still haven't slept past 3:00AM with it on. That represents as much as 6 hours of sleep on a few nights, which is definitely better than before. I am having trouble keeping the chin strap on, as it is a soft band of stretchy material, with Velcro on the end. I need it because I am a mouth breather. Without it, I wake up with a sore throat and a dry mouth, as the forced air is being forced right down my throat.

So, I called the people that the CPAP machine came from, and we will take all the stuff into their office on Monday, and they'll see what they can do to help me.

So far, I'm not satisfied with the results of the Bowel Retraining routine the Gastroenterologist has me on, as I still have difficulty getting my muscles to work effectively. I'm to call him this next week to set up the colonoscopy, if I'm not satisfied with the results, so it looks like I may be scheduling that sometime soon.

So for the time being I'm in a state of limbo, just waiting for the right time to take care of things differently.

I have tried to get more exercise the last few days, but it has to be done at the crack of dawn, literally. I was outside walking around in the front, where the street light shines, at 5:30 this morning. It was already hot, but certainly bearable. I worked in the yard a bit, swept the driveway and sidewalks (a good exercise for my shoulder), and worked up a good sweat. DH and I have both noticed that I'm slowing down again. This symptom of Parkinson's is called Bradykinesia, and it's my main problem, both with my legs, hands, and my digestive tract.

CPAP Saga Continues

I recently read that something like 80% of all people with Parkinson's Disease have some kind of Sleep Disorder, so I'm in good company, eh? There's even a study in progress to see if using a CPAP machine will improve the cognitive abilities of PWP, particularly memory. That's something I'd love to see as a side effect of putting up with this thing!

Well, I haven't given up yet, but I also haven't gotten through a whole night with the CPAP machine on, either. I've been getting to sleep with it pretty well. But then my old insomnia habits take over, and I'm wide awake several hours later. I am finding it easier to get back to sleep the first time, but not when I wake up around 1:30 or 2:00AM. That's when I've been taking it off on most nights.

I've also had a vague nausea and a horrible bout of stomach bloating, particularly this weekend. Since this is already a problem related to the elimination difficulties I have, I treated it with that in mind, with no success. Then, just on a lark, I Googled for bloating and Cpap. To my surprise, I found that this is a common problem, as some people get air forced in their stomachs. The suggestion was given to use Gas-X, and after I did that I felt much better! It's a shame I didn't think to check that sooner, as I didn't go to Church this Sunday, as I just felt entirely too yucky.

Another thing I discovered quite on my own yesterday made a considerable comfort difference for me last night. There are Velcro adjustments at the forehead and around the back of the neck and under the ears for the attachment of the mask. I've been loosening and pulling on them for days, trying to get comfortable. I happened to notice, while the mask was off, that the harness was all twisted out of shape, with one side pulled tighter than the other. So, I undid them all and started from scratch, carefully tightening them up in a symmetrical way, until I thought I had the right size. Then, I tried it on with the CPAP blowing air at its top volume and carefully adjusted it again. Now it is much more comfortable to wear!

I've been up since 1:30AM, so the CPAP hasn't helped me break the insomnia cycle yet. But I did sleep until something like 5:30AM Sunday morning, although most of that was without the CPAP. It's just going to take time, I know, but I WANT IT NOW. Patience was never one of my virtues.

Cortisone Shot Again

I went yesterday and got another cortisone shot in my right knee, and I can already tell that it's beginning to help. The Orthopedist says he doesn't like to do them more often than every 3 months, so that gives me some idea of how long I would need to wait until I could have it done again. I was doing OK on this last shot, until I did too much packing of stuff of Daddy's, which involved squatting down. That's just something I can't do anymore, not only for the knee's sake, but also for other problems I'm having. I'll just have to do all the other exercises for my knee that the Physical Therapist gave me, and leave that type of exercise out of my routine.

It's just too hot to walk at the track right now, with 103 yesterday. Even at 5:00AM it's just too hot and the air quality is too poor to be out there, so we're exercising in the house to some videos. Well, hubby is following the video, and I'm bouncing very carefully on the mini trampoline at the same time.

I noticed a vague nausea last night after supper again. The same thing happened night before last, but I'm not sure where that's coming from. The Amitiza I've just started on is bad about that, so that may be what's going on, or it could be the elimination problem I'm having causing it.

The steroids always make me not sleep, even before I had trouble with insomnia, so I managed the C-pap until about 1:00AM and then I just couldn't get back to sleep with it on. I was pleased I got by with it that long, knowing how the steroids do me. I will get used to this thing ... I will get used to it!! Just have to keep telling myself that, and take each day at a time.

First Night at Home with a C-PAP

My DH got in the expected jibes about how beautiful I looked in my CPAP getup, and warned me not to try to give him a kiss during the night. It does look pretty intimidating and terribly ugly. Our DD who used one for awhile called it Octopus Face.

My face was still sore from the pressure of the mask they had used at the Sleep Study, and nothing I did by way of adjustments made it comfortable. I was very tired, so I did manage to get to sleep with the harness on, but I woke up, as usual, a couple of hours later, wide awake. This is my normal insomnia pattern. Try as I might, I just couldn't stand the thing. I yanked it off several times, crying again out of sheer frustration. I can't even count how many times I pulled it off and put it back on. I even took a Lunesta, thinking surely it would help me get to sleep with it on. No such luck, as I lay there fighting the stupid thing, wide awake. I finally gave up and turned it off.

It didn't take me long then to get back to sleep, but I did wake up at 2:00AM, which is also normal for me when I'm in insomnia mode. I could tell the sleeping pill had me pretty relaxed, so, I thought I'd try it again. This time it worked, or at least it partly worked. I did cheat and leave the chin strap off, so maybe I just breathed through my mouth the rest of the night. I don't know, and I don't really care. I slept until 7:00AM, and I can't remember the last time I slept that late - years probably. And I did sleep all that time with the mask on, properly strapped into position, with the air blasting away.

This equipment wasn't cheap, even with very good insurance, so I don't want to waste the money. More importantly, I want to be able to sleep through a night peacefully, something I can barely remember doing.

The problems of getting used to a CPAP machine are twofold in my view of it. One thing is that the stuff on your face is uncomfortable, no matter how soft they pad it. It has to be tight enough to prevent the air from leaking out around it. If it's not tight enough, you end up with a stream of air blasting your eyes!! Not exactly conducive to sleep, eh?

The other problem is that the air is being forced into your lungs under pressure. Well, that's the good part, because that's what stops the Apnea. The bad part comes when you try to breathe OUT. You have to breathe out AGAINST the pressure that is pushing the air IN! It's a suffocating feeling that I am struggling to handle at all.

The manufacturer of my machine, and I suspect all the other brands, too, realizes this is a problem, and has what they call a RAMP UP button. The idea is to start the machine with less pressure, which gradually builds up to the pressure prescribed by the doctor. You're supposed to be asleep by the time it gets powerful. That's why I was able to get to sleep at first, while I was so tired. I was off in la la land before the pressure increased to full amount. But after I had slept a couple of hours and woke up, I didn't have that luxury, as I was still awake while it was ramping up big time. I pushed the RAMP UP button several times in a row, to no avail.

Will I be able to get used to this contraption? I'd love to say that I will do whatever it takes to adjust, but I'd be lying if I did. I certainly intend to try, and keep trying, but it's such an unpleasant feeling that I'd be a fool to make promises to myself on this one. It took some fervent prayers to get me to sleep that first night at the Sleep Study, and I think I'm going to be doing a LOT of praying to help me adjust to all this. That's all I can do - Try my very best and ask for God's help to get used to this thing.

6 Doctor Visits in 6 Days!!

We have kept the roads hot this week, going from one doctor to another, even seeing two doctors twice. But at least I have a better idea of what's going on with several different problems I have been having. I saw my Gastroenterologist twice, and now he has me scheduled to see the doctor he wants me to use for the surgery I need to correct the problem with my digestive system. I was really upset about having to have surgery at a hospital I don't like, if my own doctor performed it. Now I can quit stewing about that. Dr. B solved that problem by telling me that he coordinates for this surgery with this particular doctor, who uses the hospital I like.

I saw the Sleep Specialist twice, too. The nights at the Sleep Study were not pleasant, as I was very uncomfortable in the bed, and the thing they had in my nose felt horrible. Halfway through the night, I got so upset about how miserable I felt that they changed to a different type of mask, and I got through the rest of the night fairly well. Tonight will be my first night to sleep at home with the C-Pap. Wish me luck!!

The tick bite looked really fierce for a few days and itched something awful, but now that I've been on the antibiotics since Friday, my left knee no longer looks like it's getting worse, and has stopped itching.

The Amitiza has turned out to be a good substitute for the Zelnorm that was taken off the market. I'm very pleased with how much it is helping with the constipation problems.

I've been reading everything I could get my hands on about the surgery I am to have, and I discovered that I cannot have Demerol if I stay on my Zelepar. I talked to the Sleep Specialist Doctor about what I would need to do about the Apnea when I have surgery, and I talked to him about the Demerol interaction I had discovered. He suggested I might want to tell them that I was allergic to Demerol, so it would be marked clearly on my chart and they wouldn't dare give it to me. The combination is extremely dangerous, so I might as well be allergic to it, right???

Now the only thing left to do is to make an appointment with the Orthopedic doctor, so I can get another cortisone shot in my right knee, which has arthritis in it. I don't want to be hobbling around the way I am now, trying to recuperate from major surgery!

Startle Reflex Does Me IN!!

Have you ever seen a small baby startle? Their whole body is involved, with arms and legs flailing wildly, looking like they can almost jump straight up off the table. Well, yesterday, I looked like that, and it was a very upsetting episode.

I've always been easily startled, so up until recently, I had not made the connection with my increased jumpiness and my PD. I've been attributing it to my insomnia. After reading about other PWP on the ParkinsonLikeMe site, I've come to realize that this phenomena is a fairly common PD symptom.

We were just finishing up eating at our favorite Mexican restaurant, when the people behind us must have been celebrating someone's birthday. Without any warning to me, because I had my back to them, the waiters had gathered at their booth and started singing loudly in Spanish. I jumped out of my skin. My heart was racing, and it was all I could do to hold the tears long enough to get out of there. Poor hubby was so angry that he all but threw the money for our meal at them, and he vowed we would never come in there again.

I was so upset, partly from still feeling the effects of such a powerful reaction, but also with myself, because I had reacted that way at all. I couldn't stop the tears, and remained very depressed the rest of the day. It completely spoiled our day out, and that's a shame. I can feel the tears welling up, even now as I write about it. Such a simple thing, but it really drove home just how much I have changed.

I read other's stories, like Dan's that I posted about today, and I'm ashamed of myself for being depressed over my little problems. But that only makes the depression worse. I can only pray for strength and make myself get up and do ... do something ... do anything... and not wallow.

Digestion Problems Worsen

I have an appointment with my Gastroenterologist for this next week. Even though I have faithfully taken the Myralax each morning, take Metamucil every day, have been on the Bowel Retraining regimen, using the glycerin suppositories, and I've been really careful about what I was eating, I'm still having bowel problems. For lack of a better word for it, I would call it constipation, but it's more like the colon and rectal muscles just are not working properly. Before I was diagnosed with PD last year, I had a four month bout with diarrhea that was very difficult to stop. The Gastro treated me with the same meds that would be used with colitis and Irritable Bowel Syndrome, so that may be what's going on now. From what I've read, the IBS spasms can cause some really strange symptoms, which fit mine fairly accurately. I won't gross you out with any details. Let's just say things are not as they should be.

Other than that, I can report positive improvement with my right knee, which I had twisted again. We took off several days from the track, I have been staying on the computer more and reading more, and generally letting it rest. I did walk 1 quarter mile lap yesterday, and another today. Mostly I've been doing the exercises that the Physical Therapist outlined for me. I'm thinking I probably need to get some kind of knee brace to use in situations that might aggravate it, such as the clearing out I was doing of Daddy's things that set this episode off.

So, I wait for the Gastro appointment, look forward to the Sleep Study next weekend, and baby my knee while it slowly heals. DH, as always, has been super considerate. He keeps me laughing over his foolishness and does so much for me. No one could ask for a more loving and caring helpmete.

Earliest UNDIAGNOSED Symptoms of Parkinson's Disease????

Hi Rosemary

First I want to thank you for taking the time to blog. You may not be aware of important I find it to hear others Parkinson's and day to day life experiences. I appreciate it very much.

I am writing to you because my interest in PD came because I began having symptoms which I suspected might be PD. Fortunately my symptoms are very irregular and inconsistent and not at all affecting my ability to function. The Neurologist I am seeing is not good and is pretty much dismissing my symptoms as nothing. This is fine with me or maybe wishful thinking. I will have resting tremors in my left thumb on occassion as well as jerking limbs, and muscle trembles throughout my body, weakness, etc. Again there are very inconsistent and really could be normal daily problems or another issue. I am very much into Holistic and Natural health so have been doing many things to minimize or slow and potential problem I have. I am 45

I started looking for blogs to see what people reported as initial symptoms long before they were diagnosed with PD. I suspect my symptoms maybe be things people have looked back after they were diagnosed and say yeah, now I remember I had problems long before I realized there were problems. I cannot find such a blog and I am really curious as to when you reflect on your past, when did small signs begin to show up and just ignored or dismissed them. Or whether you had inconsistent symptoms at first. I could be completely wrong, I have no idea!

So after that long winded explanation I have a request. If you have the energy and time at some point, I would like to see a blog from you of your very early years working up to PD. No pressure and no hurry. It would be very much appreciated.

Keep up the blogs and my prayers are always with you

Ted C

Ted wants me to try to look back and pinpoint some of the earliest signs that may have been Parkinson's symptoms that the doctors missed. I've mentioned several things in other posts about what I now believe were warning signs that were not detected. I'm not criticizing the doctors about this, as hindsight is always better than foresight. There's absolutely no way of knowing if I'm correct on any of the possible signs or not, but I'll try to list as many things as I can remember that were puzzling at the time and went undiagnosed or ignored.

I really do have back problems that are unrelated to Parkinson's, as I have Degenerative Disk Disease. There have been many trips to different doctors over the years with back pain and weakness in my legs. There were times as long ago as 15 to 20 years ago when I was walking slower than my parents, who were in their 80's at the time. Doctors were able to alleviate the pain with epidurals, but the walking problem always gradually disappeared on its own and then returned just as mysteriously.

I've had spells of mental fog for many years, which I always blamed on female hormone problems, as I was very young when I had a complete hysterectomy, or on the stress of teaching and later as a caregiver. I was on hormone replacement therapy all that time, though.

I had a diagnosis of Functional Dysphonia while I was still teaching, which means that I could not talk at all, but it was supposed to be psychosomatic. The doctor attributed it to stress. I had bouts of severe laryngitis over a period of many years. I had always been in the choir at church, but about 15 years ago I reached a point where I could not sing through a verse without feeling like I was being strangled, with someone squeezing tightly around my neck. My breath volume was greatly diminished, too.

I went through several years of Migraine Headaches. The Neurologist I was seeing at that time found that I had a positive Babinsky reaction, which means my toes didn't do what they should have when he scraped along the bottom of my bare foot. He concluded that I had probably had one or more concussions from childhood falls. He did not cure the headaches, but the episodes finally slacked off on their own.

I had a very scary episode about 15 years ago in which my left arm went totally to sleep one night while I was watching TV. It took a lot of massaging and soaking in hot water to finally get feeling back in it. When I went to the doctor about it, she diagnosed me as having Mitral Valve Prolapse. Some years later, I had an echo cardiogram, and there was no indication of MVP. I still have to be careful that I don't keep my hand too still when we drive for any distance, as it will still go to sleep. The same thing happens in the dentist's chair. These symptoms are probably from a spur on a cervical vertebra, but who knows??

One symptom that I had never gone to a doctor with was the way I would think I was smiling when my picture was taken, only to see that my face was blank when I saw the photo later. That is a definite Parkinson's trait, and it's been something that I was aware of for many years.

There may be other symptoms that I'll think of later, but I've read this post to my DH, and he's in agreement that these are an accurate list of some of the puzzling things that have happened to me over the years. I hope other Parkies will contribute to this post, too, so it will be as informative as possible.

Sleep Continues to Be Scarce

The insomnia is continuing to bother me just about like it has been for several months now. I'm still having constipation problems, too. I've been on the Miralax continually now, but when I had to stop taking the Zelnorm, it began to gradually give me trouble again. I've been using the glycerin suppositories regularly now for the last week, but the problem isn't resolved yet. I'm already on a Metamucil capsule every day, besides the Miralax, so I hate to add any more oral medicine for it, for fear it will suddenly work too well. The only other Parkinson's thing that is going on with me right now is a very stiff neck. I have had like a crick in my neck now for several days, from a very tight muscle, that I just don't seem to be able to stretch out or limber up. I'll just have to keep exercising it, and hope for the best.

We had an absolutely glorious drizzly rain all day long yesterday, and I thank God for that. We need about a week of that kind of rain to make a dent in our drought situation, but it's better than nothing. Our grass finally looks like grass again.

They are supposed to come finish the garage tomorrow, but it looks like it might be raining. That's OK. We need the rain worse than we need the garage to be finished. We need to put another coat of water sealer down on the garage floor, anyway, before we start putting stuff in it.

Once we can use the garage for storage, we'll start bringing the furniture that our DD does not want to keep from their house down here. Also, we have stuff in our basement that we can't get to because it's in such a mess. Once we have a place to store it elsewhere, we can start emptying the basement of things and get the good stuff out of our way temporarily. Then we're going to have to make several trips to the dump!! We used to have a landfill dump here in our town, but it was moved to the other side of the county a long time ago.

That wouldn't have been so bad, but our town garbage collection rules call for household garbage only. They won't pick up anything that won't fit in a garbage bag. So, over the years, as things broke, like the washing machine, it just got stuck in the basement. Now we can hardly move down there. Oh, and the nearest Thrift Store won't pick up the appliances, either. There are certain disadvantages to living out in the boonies, that's for sure.

DH won't let me go down in the basement, as he's afraid I will trip over something or lose my balance trying to walk around all the stuff. I really do think he's being over protective, but I've done as he asked, and stayed out of it. I'm itching to get it cleaned out, though, and it bothers me that I can't just go down there and work on it if I want to. As it is, I'm stuck with his idea of when it will get done, and his timetable is a lot slower than mine LOL!! C'est la vie. That's what being married is all about - the give and take of blending two different people's habits and problem solving techniques together. I just need to work on my patience a little more, that's all.

Blue Funk Is Now Fading

I don't seem to be quite as depressed as I was a few days ago, thank goodness. The money part of the estate is finally taken care of, so the only thing left to do is sell Daddy's car and finish emptying the house of all the furniture and stuff that our DD's don't want. I say "only" like that's not a big deal, but there's a bunch of stuff to get out of our older DD's way. We did bring Daddy's car down to our house yesterday, so at least they can move things out to the garage now that are in their way. We didn't want to do that while all the construction delivery trucks and workers' vehicles were going in and out of our yard.

We put Thompson's Water Seal on the garage floor day before yesterday, and it soaked it up like a sponge. We have to wait until tomorrow for it to be cured, but from the looks of it, we'll have to put another coat on it before we put anything in the garage. Not that we can use it yet, anyway, as only half of it has been roofed. We're waiting for the other special order to come, since the builder didn't order enough of the starter strips for this particular type of shingle. It seems this pattern takes two rows, instead of the standard one, so we have half a roof at the moment. LOL

So many delays have happened with this garage that what would have had me in tears a week ago is now just funny. They don't get paid until we're satisfied, so it's to their advantage to not make all these time consuming mistakes. Go figure.

We bought a pair of trekking poles the other day, as an experiment. The one piece ones are supposed to be better, according to all I could find on the Internet. But it made more sense to try out a cheaper set of adjustable ones that both of us could use at different times, until we see if we like it. Using the walking poles is supposed to be a way to protect the knee, ankle, and hip joints, plus give the upper body a complete workout while you walk. And they are recommended as an excellent exercise tool for PWP.

We're practicing around the house right now. I'm not sure I am going to be able to use the best possible form with them, as it's kind of confusing. It involves holding them with a strap around your wrist and then letting go of the grip when the pole goes back, as you grip the other pole as you walk. Trying to keep my feet coordinated with the poles, plus remembering what my hands are doing, all at the same time, is very confusing. But I can definitely hold onto both poles all the time and do them OK. I can already tell that they are going to increase the exercise my upper arms and shoulders get. I've been walking with one pound weights every other lap now, for some time, in anticipation of trying these poles. I hope that means I'm ready for them, but I'm in no hurry to try to walk very far with them right now. I've learned that slow and easy works better for me.

We managed to salvage enough leftover sheathing and scrap 2x4's to have a good start on finishing off one inside wall of the garage, plus make some shelving, plus there is a good bit of the siding left over that they were going to take to the dump. We kept that, too, in case we ever have storm damage. I've been walking around outside the last few days with one of those magnets on a pole, picking up nails. No telling how long it will take for us to find all of them. With the drought we're having, it's not as if we need to be worrying about using the lawn mower in that part of the yard for awhile, so we should have it cleaned up before we need to be concerned with cutting the grass safely. As for cars, we're still not using the new part of the driveway or going near the garage. Tearing up a tire is just not worth it.

We're making slow headway with our eBay sales, with over 250 items listed now, so I'm hopeful that I can get back to enjoying reading everybody's blogs soon. I did manage to skim through Ruth's blog to see how things were going with her since Mick passed away, and I'm sorry to see that she's had one problem after another, due to the red tape of their national health care system. The more I read what Marion and Ruth have to say about socialized medicine, the surer I become that I pray we never get it in the USA!!

Since I'm writing this at 2 AM I think it's safe to say the insomnia is still going strong. I went to bed about 9:30PM, but I was wide awake by 12:30. I tried going back to sleep about 3:00, but didn't succeed, so I've been up since 3:30 with 3 hours sleep for the night. Counting the days until I see that sleep specialist!!

Going Through a Depression Phase

I have really tried to stay positive about all that's been happening to me over the last year or so, but I'm not succeeding very well right now. When I went to my Neurologist last time we made a point of telling him that I was crying extremely easily over just about everything. He had a name for it, but it was a mile long, and I forgot what it was. Since he said he didn't want to change any medicines until after I've had the sleep study, there didn't seem to be any point in pursuing it, as long as we've told him about it.

We've been waiting to get the garage we're having built finished. We waited an extra month for the siding and roofing to be special ordered to match the house. Neither one of them is a match - right color, but wrong shapes. And we're stuck with them. That set me into quite a blue funk for the last few days, but I'm getting over that. It's just a garage. Sometimes it's hard to keep perspective about things like that.

We're still dealing with estate business, so that doesn't help with my state of mind right now, either.

I started back on the glycerin suppositories today, as I have gradually had more and more trouble with bowels again. Just as before, there's nothing that would make me consider myself to be constipated, but my muscles just don't push hard enough. They took the Zelnorm off the market that dealt with that problem for me before. So I'm planning on going back on the Bowel Retraining regimen.

So, with the insomnia continuing, the bowel situation flaring up again, and just generally too much going on, I've had better days.

Losing It

We closed on the house last Thursday, so now one daughter owns Daddy's house, and the other is getting a nice inheritance. It was a very nerve racking event, because the mortgage lady has from day one done a very sloppy job. She has waited until the last minute to tell us about all kinds of things we had to rush around and get done. She's 7 months pregnant, and our DD is afraid if we complain to her boss she will have problems with the baby. If it weren't for DD being so worried about that, we'd be trying to get some of her commission returned to us, as she had to be the worst business person we've ever had to deal with.

Anyway, we went to the bank today and took care of more of the estate business, and I realized after we got there that I had forgotten to bring the mortgage payment check. In fact, I hadn't even thought about bringing it, and I couldn't remember what I had done with it after we got home late Thursday night. I remember telling my DH where I put it when we got home, but he couldn't remember, either. When we came home from the bank, we spent a very hectic afternoon tearing the house apart, looking for it. I was a complete blank, with no idea what the check even looked like. Have you ever tried looking for something when you didn't even know if it was in an envelope or not?? I cried a lot, prayed a lot, and finally gave up.

I figured if I started cleaning up, I might find it, and I finally did, thanks to God's help. It wasn't in a logical place at all. For some reason I had moved it from where I was just sure I had put it to begin with. This whole episode was very scary, and I've told DH that as far as I'm concerned his Power of Attorney just started. I've always been the one to deal with all business matters, but I can't trust myself any more.

Mama had the Alzheimer's type of Parkinson's, and I'm seeing more and more of it in myself. It's very depressing to watch yourself go blank. I can only hope that it will turn out to be the result of my insomnia, not Senile Parkinson's Disease.

Getting a Sleep Study Done

I went to see my Neurologist yesterday, and he is very pleased with my physical progress. He doesn't want to change any of my meds, though, until I have had a sleep study. So, I have an appointment in July with a Sleep Disorder specialist. I'm not sure what that kind of doctor is called, but they gave me a book's worth of forms to fill out about myself that I have to have done for the appointment. I'm surprised they didn't ask me if I painted my toenails!!

I've been doing a little research about this insomnia thing and Parkinson's, and it's no wonder that this is bothering me. Something like 88% of PWP complain of insomnia!! Whether it's the disease or the meds we take, I'm not sure, but that's a significant symptom to deal with.

I have recently bought two more books that I think are going to be very helpful. One is Parkinson's - The Art of Moving, by John Argue, and the other is The Book of Exercise and Yoga for Those with Parkinson's Disease, by Lori Newell, M.A., which shows how to do each exercise from a chair if the PWP requires it. Add the Chi Walking book I've mentioned before, by Danny and Catherine Dryer, to that list, and I think any Parkie would find help with improving their body mechanics. I found used copies of the first two on Amazon recently, and I bought the walking book at a local book store. Thanks to Tami for suggesting the Art of Moving book.

DH mentioned last night that the slope of our newly installed home "track" makes it harder for him to get in as many steps as he does on the track at the local park. And I thought it was just me.

We now have extended our driveway around to the side of our house, with a new garage to be built next week, hopefully. But we didn't stop there. We had them put in a side walk to underneath our deck, and had a patio put in there. There's only about a five foot pathway between the end of the patio and the beginning of the sidewalk that goes from the deck steps to the front driveway that we need to finish with stepping stones.

That means we essentially have our own personal track now. We get an up and down slope going to and from the back yard, as we have a full daylight basement, with plenty of level walking up front and on the new driveway. Now I can step outside during the day and go around a time or two any time I get stiff or need a break from working on the computer. I'm not supposed to sit still more than about 15 minutes at a time, according to the Art of Moving book, so this is great. I think that's also why sitting through church bothers me so much. I can't wiggle enough in the pew to stay comfortable LOL!!

DH is walking between two and three miles each day we go to the track, but he's not able to do much else in the way of exercising. He had colon cancer several years ago, and the whole incision, from way above the navel all the way down, herniated last year. He has this huge piece of mesh sewn into his abdomen to hold it all together. You can actually see the bulge in his tummy where the muscles are just not able to support his mid section. The doctor cautioned him not to do crunches or anything similar, so it's hard for him to slim his middle down. He's pretty much stopped wearing trousers with belts, as they are just not comfortable.

So, I'm glad that my Parkinson's is giving him the motivation to walk consistently. He's a night owl, and if it weren't for getting up to keep me walking, I don't think he would get up early on his own. And, of course, it's way too hot to walk much around here unless you go very early. We are usually at the track by 6:00AM, with plenty of other walkers already going around when we get there. On days he doesn't feel like getting up that early, he's been walking around our own track as late as 10:00 at night!! So, we're helping each other to stay motivated, and that's a good thing.

43rd Wedding Anniversary!

How about that! Yesterday we celebrated our 43rd wedding anniversary. We've actually been seriously in love since 1960, but we waited for me to graduate from college before we got married. I wouldn't recommend that long an engagement to anyone, but getting my education was important, and it's helped our family financially all these years.

We went to a movie and ate out and generally enjoyed being with each other, as we always do. I would wish that all marriages could last so long with so much love still there after all the years.

It did get me out of the house and away from all these estate issues. We'll go to the bank today and open the ESTATE bank account and change over all the CD's to our name. That will be a couple of more things I can then cross off my task list, which is a very satisfying thing to do.

What with all the stuff we've been cleaning out of Daddy's house, I finally got up the gumption to clean out Pop's closet at our house. My FIL lived with us the last few years of his life, and when he died, I just couldn't bring myself to deal with his clothes. They weren't really in my way, so I put it off. Well, now I need the closet to store some of Mama and Daddy's stuff until we can sell it on eBay, so all of Pop's things are bagged up and ready to give to the Thrift Store. I will have to get the name tag labels out of everything, though, as he was in an Assisted Living home his last year, and everything is marked.

I've finally worked our eBay store back up to 250 items listed, which is about all we can afford at one time. Maybe now some other things on my To Do list can move up the line.

I did sleep longer last night, but it was because I took a Darvocet last night. The movie gave me a headache, plus I was generally achy all over. I think I've been over doing it lately, trying to box a lot of things up. Doing a lot more leaning over and picking things up than I have in a long time, and my muscles are complaining about it. Walking is great, but it doesn't take care of all the muscle groups. I have been doing some simple arm exercises with the 1 lb weights, and I've gone back to doing all the neck and shoulder exercises that the Physical Therapist put me on some years ago for the degenerated disk in my neck. I continue to do the Tai Chi, as well, so I'm really trying to build up my muscle tone. I do have a set of exercise videos that I bought several years ago, but that means getting down on the floor. Getting down isn't the problem .. getting back up is! LOL So, I'm postponing using them for awhile. I figure by the time the weather turns cold I'll be strong enough to get up and down safely.

We're still waiting for them to start work on our new garage, as we special ordered everything to match our house. I'm getting antsy, seeing that beautiful driveway and slab, with no building going on. But it will come, sometime soon. I just need to be patient.

Our older DD and SIL have moved into Daddy's house, in the midst of quite a mess. I'm glad it's them and not us!! But youth puts up with stuff that age can't or won't. We're working as hard as we can to empty the house of all of my parent's things, but it's a slow go.

So, I continue to stay busy, improving little by little each day. Crossing things off my list reduces my stress level, so I rejoice every time I finish one small part of this huge undertaking. Some days I have to hunt for something to feel positive about, but I work hard at staying optimistic. Thanks to all of you dear friends for your encouragement!!!!

Nerve Wracking Day!!

We settle on the mortgage on Daddy's house Friday, and Monday and Tuesday were a whirlwind of activity trying to get everything done no one thought to tell us about until the last minute! We found out Saturday that we had to have an Alabama Wood Infestation Report ready for Closing! That left a mad rush to find someone Monday who would come out immediately and have it ready in time. The people that the mortgage lady recommended said they would get in touch with me yesterday to set up an appointment, but they never called. So, I called someone more local and they agreed to come right then!! When I called the first place back to cancel, she said OK and HUNG UP!! No business sense of being polite at all. And they don't know that we intended to get two Termite bonds with them, when time permitted!! Now the nearby business will get that money. HA!!

Then, yesterday, we went to the bank to open an account to receive the estate money, something the tax lawyer had told us to do. Lo and behold, we found out we had to have an Employer Identification Number for the ESTATE!! When I went online to try to find what was needed, the IRS.gov site was just as confusing as it had been when I looked at it right after Daddy's death. So, I called, went through menu hell, and finally talked to several VERY NICE PEOPLE!! What a pleasant surprise. They helped me get the right form and helped me fill it out, and I was able to get the EIN right then. One of them also recommended that I get the publication no. 559, dealing with settling an estate. I've ordered it, and thought some of you might be interested in getting one, too. From what I can tell from the online version of it, it would have been very helpful back when I started all this.

We also found out at the bank that I will need a copy of the will in order to transfer Daddy's CD's over into my name. That sounds simple enough, right? Nothing is simple, when it comes to this stuff. You see, we don't have the will any more. I called our lawyer niece when we got home to ask her if she was through with it, and she told me that our County has it until after Probate, which is like 5 months from now!! But, she was able to FAX a copy to our bank with the court seal on it. Just one more thing to deal with.

We had tried earlier in the day to deal with a newbie on eBay from France who had paid us with a Western Union transfer, a payment method we don't accept. Since he was new, we decided to try to cash it. I had to go online to find the nearest place that would take care of it, and when we went there, the number wouldn't work. After calling the Western Union representative from the phone at their booth in the store, we found that the name on the eBay sale and the amount of the transfer didn't match with the correct information. So ... I've written him, hoping eBay will translate correctly, and told him to get a refund and pay us the way we state in the auction.

This was all just too much stress for me yesterday, and I broke down right in the bank. I managed to keep the tears to a minimum, so I don't think anyone but DH new just how unhinged I was. By the time I had dealt with the IRS to get the form filled out properly, I was on a chocolate crave that couldn't be denied!! Hubby came to the rescue, went to the store and bought me two big Hershey bars, and I promptly ate both of them!!

It's no wonder that I'm writing this at 3 o'clock in the morning!! Hopefully, when some of this stuff is finished with, I'll be less stressed and my body will let me sleep. I sure hope so. I'm really not a worrier, so it's not like I'm lying there in the middle of the night thinking about all this stuff, because I'm not!! But it's taking its toll, anyway.

Still NO Sleep

Insomnia is turning out to be my biggest problem right now, because it effects my stamina and mental agility as the day wears on. I start out each morning all fresh and energetic, even with only 4 hours sleep. I'm wide awake and rarin' to go! But I fizzle. Not surprising considering it's been over a month since I've had more than 4 hours a night. I doze in the car when we go anywhere, but other than that, there's nothing.

My Neurologist appointment is coming next week, and he had mentioned doing a sleep study. I think it's time, don't you?? I can't imagine what he can do about it, though, as I'm comfortable in the recliner, and if I snore, there's no one nearby to tell me about it LOL. I do hear my DH sawing away in the bedroom, though. Ah! Maybe HE's the culprit!! ROTFL

I'm really proud of how much stronger physically I am right now, and I'm determined to keep up the good work. I'm doing the Tai Chi almost every day, which definitely improves my balance, walking about 6000 steps on average, lifting 1 lb weights to do the arm exercises, and working around the house more than I have in a long time.

We're about to close on Daddy's house, so that will be out of the way. That leaves his car and all the stuff in the house to get rid of, plus some small insurance policies to deal with. UGH!

I continue to stay behind on all my computer work, but the eBay business is picking up, now that I'm listing new items every day. Maybe in the year 2020 I'll have all of the things we have been buying at Estate Sales sold. HA! Maybe ... but we keep on buying, 'cause that's the fun part for us, as we do that together. One step forward and two steps back! All the online part is strictly my doings. Hubby can't stand computers.

I really do miss all of you, but I just can't work it all in. I don't think I think as fast as I used to.

I Should Hang My Head in Shame LOL!

I'm sorry. I've really been missing in action lately in the Blogosphere, but I just don't seem to be able to get everything done in a day that I want to accomplish. And, as much as I enjoy blogging, it is not a top priority.

OK, apology aside, here's a brief recap of what's kept me so busy. First of all, we're still fully involved in settling Daddy's estate. Thank goodness we have a lawyer in the family!! We received the Letters Testamentary the other day, so I've had Daddy's car worked on. It's ready to try to sell now. I'm not looking forward to that, but hopefully it won't take long to find a buyer for the price we want for it. We're meeting with our DD and SIL and the mortgage person at the house tomorrow to fill out the sales contract on the house. There's been a good bit of talking back and forth to get all the particulars of the mortgage worked out to our satisfaction, but it looks like they will close within the next two weeks.

We've also been busy having a driveway and patio put in and the foundation for our new garage. We're waiting now for the special order materials we have chosen that will match our house. We were very pleased to find the same siding and shingles we already have are still available. Once we have the garage, we will be bringing the stuff out of Daddy's house that our daughters do not want, and then we'll be having a huge yard sale!! It may be fun to go to them, but it won't be fun to have one!

We have continued to go to the track, and I'm continuing to get stronger. I feel really great in the mornings, and it's hard to make myself quit, when I feel like I can do more. But, by the afternoon, I'm dragging, and by night time, I am worn out and sore. You'd think I'd sleep well with all this activity, but I'm getting about 4 hours a night. I just don't seem to be able to stay asleep long at all. And the sleeping pills don't help, either.

I've been extremely busy with our online business, too, trying to get our listings on eBay back up to our normal number. We have kept on buying, for the fun of it, even though we were not listing much. So now, it's list or not be able to move around our own home!!

Decided Against It

I do appreciate the feedback you gave me on the decision about joining the St. Vincent's facility, but we finally decided not to do it at this time. Time was, after all, the deciding factor. It was going to eat up about 3 hours each day I went, and to get any good out of it, I would have to have gone at least 2 days a week, if not 3. I think I can accomplish just about as much with home exercise equipment and our time at the walking track, which is about 5 minutes from home. Of course, in this day and time, we have to take gas prices into account too, and we do live a long way from any of these kinds of sports facilities, with some really bad traffic to contend with both ways.

I continue to accomplish more and more when I exercise in the mornings, but I'm paying for it each night with a lot of sore muscles. DH fusses at me for over doing it, but it doesn't ever seem like I am at the time. It's only later in the day that I realize I've over taxed my muscles. I think some of this pain I experience is coming from the Peripheral Neuropathy, particularly since I went off the Cymbalta. My Neurologist wasn't the least concerned about me taking it in conjunction with the Zelepar, even though the Pharmacist had warned me about the combination. So, I may yet go back on it. But for now, I'm still adjusting to adding the Requip back to my meds, so I don't want to add 2 new drugs at the same time.

The Requip is beginning to upset my stomach, just the way it did last time. I'm having lots of heartburn and belching a lot. Nothing else has changed, so it has to be the culprit. I'll put up with it if it doesn't get much worse than this, but I'm still planning to ask for the Neupro patch when I go back to Dr. S in June.

Just to document where I stand physically:

I can now sit down and stand up from a straight chair without using my arms, at least in the morning. I can't by the evening, though. Sofas and soft chairs I haven't mastered yet. I can walk over 3000 steps a day on the pedometer most days. I've put the handicap toilet seat away for now, as I can deal with the standard one, as long as I have the sink cabinet to hold onto. I'm still using the cane when we go to yard sales and such, where the terrain is unknown, and I still don't go up and down flights of stairs if I can avoid it. Crouching down to get things in and out of my kitchen cabinets is difficult, so I usually depend on DH to do that for me. I lose my balance too easily, particularly with something in my hands. My core muscles, those of the trunk, are definitely getting stronger as I continue to exercise, as I can now lift my behind when I do what's called the Bridge. It's a simple exercise, really. All you do is lie on your back, feet on the floor, with your knees raised, and try to lift your bottom. Until recently, I couldn't lift more than a half inch or so, but now I'm coming completely off the floor.

I'm doing the Tai Chi short form almost every day now, and I'm getting pretty good at it again. My balance continues to improve.

The biggest problem I am having right now, I suppose, is the insomnia. As soon as I started back on the Requip, it started back again. I haven't been able to sleep past 3:00 AM for some time now. I get a lot done on the computer, but I really need the sleep! I've tried napping later in the day, but that doesn't work unless I'm in the car. Then I can doze off almost instantly ;).

So, I am progressing, but I have lots of room for improvement. Eating healthy foods and exercising are just as much medicines for me as anything that comes in a bottle!

Ahhhh Sleep!

Well, the Sonata did its job last night, and I actually managed to sleep in one stretch from 10:30 to 4:30 this morning. I feel much more rested for it, too. I'll probably continue taking it for the next few days in an attempt to retrain my system. I've always been the kind who could tell myself when I needed to get up, and I'd wake up on my own. So, it seems like I ought to be able to tell myself to get up later and later, until I'm sleeping a decent number of hours, right?? I wish.

I must have found the correct place to put the step counter on my waist band yesterday, as it showed almost 3000 steps by the end of the day. That's a long way from 10,000, but a place to start. I spend so much time on the computer .... maybe I need to get one of those treadmill setups where you work on the computer while you walk. It's supposed to be an easy way to build up your exercise tolerance. They already have book racks on treadmills ... why not a place for a laptop??

I'm still on the Tylenol for pain relief, and I'm still using the hot pad when I go to sleep, so the pain is quite noticeable. Mind you, this pain is nowhere near as bad as some other times in my life. That's why I don't want to consider any surgery on my knee. If it's arthritis, though, that will make me braver to use it more aggressively, and if it's a torn cartilage - I'll probably end up getting a knee brace. I'm getting anxious to find out. I never did like having to wait for results from tests. I'm like a pouting little kid about that.

Insomnia Is on the Prowl AGAIN

Looks like the Requip has my bout with insomnia going full force again. I didn't get to sleep until after 11 last night, but I've been wide awake since 2:30 this morning. It's been pretty much like this now ever since I started back on this particular medicine. I do have some sleeping pills, but I've resisted taking them, hoping my system would adjust. But tonight, I will definitely be taking one.

I do get a lot done when I'm in one of these moods, though! ROTFL I'm just about ready to change the listings on all our current eBay items to reflect all the changes the Post Office is making in Rate Classifications and prices. Just a word of warning to all of you .... don't be surprised if it costs considerably more to get something mailed to you from now on. The PO has really raised their prices tremendously, for some package situations as much as 700%!!!!

We bought a pedometer for me the other day, but I'm not convinced that it is counting every step I take. If it is, I'm not moving nearly enough in a day. DH isn't having any trouble at all going over 10,000 steps a day, and I barely went over 1,000!

My exercise program is coming along nicely, though, and my legs continue to gain in strength. I've been trying to understand exactly how to improve my posture and gait, based on the Chi Walking book I mentioned several posts ago. I wish I had someone who could just show me how, instead of trying to figure it out from pictures and words. I really don't have a very good kinesthetic sense .. in other words, it's hard for me to really tell where my body is. But that's nothing new .... I've always been that way, even as a child. I remember struggling to try to learn how to do a summersalt, and giving up finally. The Tai Chi routine does help me to be aware of where my body position is, and I've started doing that when we go to the track. DH walks 2+ miles in the time it takes me to do all my exercises, walk a quarter mile, and do my Tai Chi, with maybe a little time left over to clean out the car of all the junk it seems to accumulate so quickly, or to read a little. It's a great way to start the day off, with a feeling of accomplishment right off the bat.

So far, the only obsessive behavior I've noticed is that my craving for chocolate has gotten out of hand again. I did without any for such a long time, but when Daddy died I went back to eating it every day. I'm not supposed to eat it at all, because of the GERD I have. I'm really very good about avoiding everything else the Gastroenterologist has put on my banned list, but when I'm stressed for depressed, I have to have my chocolate. Nothing else will satisfy that craving. And I've always been that way. I can remember getting into trouble as a child on more than one occasion, because Mama would go to bake a cake, and I had eaten the bitter dark chocolate in the refrigerator. So when I read things about how chocolate contains chemicals that relieve stress, I believe it!

Standing MRI & A New Friend

I had the standing MRI yesterday, and that was quite a bit different from the lying down kind. First of all, it would be much better for anyone who is claustrophobic, as I was not closed in, and they actually had a big screen TV set up so I could watch it.

As far as my procedure was concerned, it was not very comfortable. The whole point was to take the MRI while I was putting weight on the knee, so I had to stand at about a 60 or 70 degree angle, I would guess, and be very still for about 30 minutes. By the time it was over my knee was really complaining, but it was worth every moment of it, if it gets them a better idea of what's going on in there. I still don't expect it to be torn cartilage, but soon I will know. Their brochure showed pictures of regular MRI views vs their stand up kind, with obvious disk problems that didn't show up when the patient was lying down. I may ask for that kind the next time I have to have one on my neck or back, for just that reason. I'll see the Orthopedist next week to get the report on it.

I've added the beginnings of a section on Radial Neuropathy to my side bar, not because I have that, but because I've recently started emailing back and forth to a new friend who has it. She and I live in the same small town, I taught her husband, know her MIL, and we're even members of the same church. And neither one of us knew each other LOL!! It was the Physical Therapist we've been going to, who gave her my blog URL, that got us together. She promises that she'll be posting here, so hopefully she can make contact with others who have problems more similar to hers. My Neuropathy is most noticeable in my legs, although my hands and arms are involved, too. Hers is severe, but I'll leave it to her to explain it.

I noticed the nausea from the Requip about 11:00AM again yesterday, but a few crackers stopped it. I'm still getting sleepy at the wrong time, as I nodded off early last night watching TV, and I've been up since 4:00AM. Actually, I woke up a little after 3:00, but I made myself stay put, thinking I would go back to sleep. No such luck.

I can't tell any difference in my gait yet, but it may take a week or so before I would notice anything, anyway. I don't remember reading anything about how long it takes Requip to take effect, so I'll have to try to do some research on that.

Oh, remember when I was having so much trouble typing? That has definitely improved. It must have been the stress of dealing with Daddy that was making that worse. Parkinson's folks don't handle stress as well as others do. I still make more mistakes than I'd like, but nothing like it was for awhile there.

I've done my morning exercises, but we're still not walking at the track. Hubby's poison ivy is getting worse, not better, and he's so stubborn I can't get him to go to the doctor about it. So he's just slathering on the anti-itch medicines I already had in the house, and he's trying to stay cool.

Speaking of cool, my temperature regulator is all off whack. I'll have hot flashes one minute and be freezing the next. I'm putting my jacket on and pulling it off constantly!! This is a Parkies thing, too, so there's not much else I can do about it.

I'll spend the day today writing descriptions and finishing the pictures I took this morning, so I can put some new items on eBay tonight. DH has gone grocery shopping, a regular Wednesday morning routine of his, and a chance for him to stop and chat with his buddies. I guess that pretty well catches me up for the day. I hope you are having a good day, too.

Still about the Same

I've called Hospice back out here twice, because he was in pain that I couldn't resolve with the Morphine, or his breathing was worse. They're good to come, but it takes over an hour for them to make the drive. His heart is still strong, although the body is all but shut down.

I managed to get a little sleep last night, but mostly it's my arm keeping me awake. It's still very swollen above the elbow and painful all the way down to my finger tips. It's hard to say if I pulled a muscle, irritated a tendon, or if this is from the Parkinson's. Whatever it is, I'm not helping to change Daddy now. We have the nurses and aides coming, so Fred helps them do it. Daddy's bottom looks horrible now, but it's to be expected, since we have quit trying to turn him. He's just in too much pain when we have to, to put in a suppository for pain, or to change him. He's resting peacefully almost all the time, if we just leave him alone. So I've opted for bed sores, rather than upsetting him every 2 hours.

Frances is here today, so I've left her with Daddy, and I've moved up to the living room to try to get some sleep. Just thought I'd jot off how things are right now, before I try to get some rest.

Tremors Galore!!

Don't let anyone give you the impression that everyone who has Parkinson's reacts the same way to the loss of dopamine in the brain. I'm one of those whose main symptom is Bradykinesia, which means without medicine I can barely get my legs to move at all. My upper body movements are slower and less coordinated, but my lower body simply has no clue what my brain is telling it to do. This effects my walking, balance, and my digestive system muscles. Something as simple as standing through the verses of a song in church can be very difficult for me to do. I'm also having lots of problems sleeping, no matter how tired I am.

Unlike the stereotypical image of a PWP, I have not had tremors. Well, I can't say that any more. Yesterday evening I noticed a rhythmic series of what felt like shivers to me, but I wasn't cold. I thought it was nerves, as things have been quite stressful around here lately. But when I tried to go to sleep last night, those shivers turned into full blown tremors. Not only my legs, but for awhile there, my whole body was uncontrollably shaking. These are called resting tremors, as they immediately stopped when I raised both legs. As soon as I put my legs back down - they would start up again. Yep, that's Parkinson's tremors, alright. Something else to talk to the Neurologist about next week.

I have decided not to add the Requip to the Zelepar, since the doctor's appointment is so close, but if I do the shake, rattle, roll thing again tonight, I may change my mind. Just as a point of information that I find extremely odd, PWP don't have tremors in their sleep!! Weird, isn't it??

Testing ... Testing ... This Is Only a Test

I thought I'd o a post without any back spacing or spellchcking, just to give you folks an idea of what my typing is like these days. This will also give me a benchmark as to the extent of my mind/finder coordiatniton at this time. so bear with me while you try to read my gobbledytook. LOL

Daddy an di both ahd a good night's sleep slast night!! so I'm much more rested to day that usual. We;re beginning to settle into something of a routine finally, alsthough we're still experimenting with ways to make the lift help us the most effiiently.

I did have to call the night service night efore last, because he was choking on his own spit in the bed about several hours after he went ot sleep. I tried moving the head of the bed up and down and turning him from side to dide, but nothing seemed to help. I think the nurse thought i was describing a death rattle when I first talke to her, but I assured her that I knew that sounded like. She said to wake hime up and see if that would help with stronger coughting. I let the bed flat, turned him onto this side, slapped him on the back the way cystic phibrosis patients done, and this huge glob of thick mucus finally came up. Surprisingly, he went right bakc to sleep, and slept well the rest of the night. I didn't thogh, as I was afraid it would happen again.

I seem to be going from one problem to another, as far as I'm concerned. Now it's my back hurting again. It's not the vertebrae, but the muschles of my upper back. That's from leaning across Daddy, even though we have the hospital bed. This is definitely from the Parkinson's, so I guess it's time to add the Requip to my meds again.

I can tell immediately when I make the se spelling mistakes and typing mistakes. At least I know it's wrong, but I take spellls of not being able to cooridante everything einvolved in acutally typing, And I really wa sa good typist, so it's not because I don't know how LOL!!

Well, of you've srubbled thorugh this you have some idea of the whats' involved in turning out a post the way they usually lool. It's the same with comments.

Did I say that Parkisons' is a terible disease? And I'm ant Stage One!!!!

Sleep? What's That???

I'm tired. I've reached the point that I'm too tired to sleep, even when I could. I have the Ambien CR, but the Neurologist doesn't want me taking it all the time.

Besides, I might not hear Daddy if I'm doped up. He's becoming very unpredictable as to his sleeping patterns. There have been some nights lately where he hallucinated much of the night, even clawing to take off his Depends and trying to climb over the bed rails. Other nights, he talks in his sleep. I've had several lengthy conversations with him in the middle of the night, where he never opens his eyes, and I can tell he's still asleep LOL! Other nights, he barely twitches a muscle, but stays in exactly the same place all night long. That's not good for his skin.

The lift has helped with the lack of strength problem tremendously (Daddy's and mine, too), and Daddy is accepting it without argument, thank goodness. He's also letting us feed him, which surprised me. I thought he'd balk, but I think he's beyond that. He still takes spells of hateful talk, but it doesn't happen too often any more. Frances heard it for the first time yesterday. It really surprised her. We told her that meant she was part of the family now. ;)

We've reached that point in care giving where we pretty much control everything to do with Daddy now. We've bought sweat pants and put his regular zipper pants away. I've put up his watch, wallet, and keys, which he'd always put on first thing each morning. He's no longer wearing athletic undershirts or his favorite flannel shirts. We've bought him some knit Henley long sleeve shirts instead, so we could get them on and off easier that the unstretching flannels. He's in white diabetic ankle socks, instead of his dress socks, and I can't remember the last time he had on both shoes. In fact now we're not even bothering with the slipper socks, as he's not standing or walking. The sores on his bottom and his heel look much better, because we have more control over his skin now that he's not walking and in his own bed. It's no wonder he keeps asking to go home! He certainly doesn't recognize the life he's living now. But he's safe (well, except for his rail climbing times), and he's as comfortable as we can get him.

The Zelepar seems to be sufficient for my physical Parkinson's symptoms, but I'm not sure any medicine could improve the mental deterioration I see, considering all we're doing right now. Thank goodness for backspace and spell check!!

At the rate I'm going it won't be long before it's just too difficult to try to correct all my typing mistakes. I'll just join Joe, and let you see what it's really like for me HA!!

So, I've cut out what I could in the way of other responsibilities. I haven't put a new item on eBay in some time, and I've put up a notice that we are not able to ship promptly right now. I've sent an email to all the BLOG VILLAGE members, asking them to help me with the monthly check on all the voting links and dead blogs. I've even cut down on my own reading and commenting, not because I want to, but because I'm just overwhelmed right now.

As you can see, I'm not very cheery today. I'll feel better once I get some sleep, though - whenever that will be.

Zelepar is Working Much Better, Insomnia Is Still a Challenge

Evidently the reason I was not getting good results with the Zelepar was due to the strep infection. (I did get a refill on the antibiotic, so my throat continues to improve.) This time, my walking is quite normal, and so is my balance. I am taking the second dose earlier than I did last time, as I think it was one of the factors that was keeping me from sleeping. So this has been a pleasant surprise, and a welcome result.

As for sleeping, that's been, shall we say, interesting? My Neurologist did not want me to stay on the Ambien CR continuously, although he did refill the prescription. So, I figured I'd better find some other way to get some sleep. It wasn't working all that great any more, anyway.

Daddy has been taking one or two Tylenol PM for years, so I figured I'd give it a try. I tried two pills for two nights, then cut back to one pill. I was still waking up after a few hours, but went back to sleep quicker. I was getting more hours sleep with the Tylenol than I had been recently with the prescription for Ambien. Go figure. But, I felt drugged for several hours in the morning.

Time to try something else, right? I figured it was time I found out just how much sleep I would get without any sleep aid. The first night I got very little sleep, and wasn't even sleepy the next day. But after that first night, I've been sleeping just about as much as I did with the Ambien. So, I'm just going to do without, saving the Ambien CR for special situations. That way, maybe I'll get the longer sleep time, the way I did the first few nights I took it.

Another Medicine Change

When DH got home last night, there was a message from my Gastroenterologist that I am to call back. He wants to make another medicine change, if I'm not any better, and I'm not. So I'll be talking to his nurse today to see what she has to say.

Night before last I enjoyed a very good night's sleep for the first time since the first night or two after Daddy fell, thanks to Ambien CR. But last night I was up to my old tricks again. I've probably had enough hours of sleep, but it's been in fits and starts, not in a solid stretch of sleep. I'm writing this in the wee hours of the morning, as there's really nothing else to do at this time of day but get on the internet.

So I'm Stopping the Requip

I went to my Neurologist today, and we discussed my digestive problems, hair loss LOL, and insomnia. His solution was to taper off the Requip until I have quit taking it completely and see what happens to my stomach problems. He also gave me a prescription for a time release version of Ambien. And, of course, if it was the Requip that was causing the hair loss, stopping the Requip will take care of that situation.

I told him about writing to the National Parkinson's Foundation "Ask the Doctor" site, and what that doctor suggested. So he's given me some samples of the medicine the NPF doctor suggested I try. I'm not supposed to use it until I've completely stopped the Requip, if I can possibly stand it. But I explained we were taking care of my Daddy, and I might not be able to put up with my impaired walking that long. He wants me to try, so he can get a fair assessment of how the new medicine works, but he does understand our situation.

He gave me samples of Zelepar, one of the brand names of Selegiline. It dissolves on the tongue, so it does not go through the digestive system at all, but straight into the blood stream. I have high hopes for this medicine. It is also a different type of medicine than I have had before. This one is an MAO inhibitor. I'll have to do some research to fully understand what that means.

I am very thankful that all the research over the last few years means there are a lot more different types of medicines for him to try on me than there used to be for Parkinson's. None of them slow down the disease, or do anything at all to cure it, but they do help with the symptoms. For now, that is a blessing. Hopefully, in my lifetime, they will find ways of at least slowing the disease down. And who knows, maybe they'll even find a cure.

Waiting to Talk to the Doctor

I stayed home from church yesterday morning and tried to sleep. I think I did doze some, at least. I felt more rested by the time DH came home, anyway. It did feel good to be in my own recliner, under my own quilt, in a COOL house. I haven't slept in a bed for years, because of my back, but there sure is a difference between my recliner and the one up at Daddy's!

There's been no change in the status of my digestive problems yet, and I've put in a call to the Doctor to give my progress report. His nurse called back, so Dr. B may be calling me this evening.

Everything else has been pretty much routine today, and I guess that's good. Our eBay sales will be winding down in the next day or so, as it will be too late to get them to anybody before Christmas. Then we'll start selling the vintage collectibles that people tend to buy for themselves after Christmas.

The Ole Brain's Missing it's Sleep!!

Today more than any day so far I've been able to tell that my mental sharpness has dulled from lack of sleep. I can't count how many strange mistakes in thinking I've made today. DH has sent me home for a couple of hours to try to decompress from whatever tension I might be feeling at Daddy's house, but it just doesn't seem to be enough to do any good. What I really need is a good night's rest.

The really strange part is that I'm not in the least sleepy! I'm not hyper, either. I feel perfectly normal, until I do something really, really stupid, and then I wonder where did that come from. But I really know where it's coming from. I just don't know what to do about it.

I go to the Neurologist Tuesday, so I'll try to last on the sleep the Ambien gives me until then.

Daddy was stronger this morning, and his own barber came over and cut his hair, which pleased him immensely. But he's been sleeping in his chair literally all day today. So whatever happened yesterday morning has taken its toll on him again, evidently.

I continue to battle the digestive problems, trying to follow the new instructions from Dr. B today. No real change, yet, but it's too soon to expect any difference, really.

Arrangements Are Made

I talked to Frances last night, and she can stay late Friday evening, in case traffic runs us late getting home from the doctor's, and she can stay with Daddy on Tuesday. So I'm all set to keep both of the doctor's appointments. I've been doing a lot of searching on the Internet, and it looks like the Insomnia is just another one of those Parkinson's symptoms that a lot of people get, but most people don't know about. Let's face it. The only thing most people know about Parkinson's is that you shake, right? And I don't even do that! LOL!

My dear sweet hubby went all the way to Birmingham yesterday to grocery shop, just so he could get me some Soy yogurt. I was rationing the little bit we had left from our last stop in town, and he knew it. So now I have enough to have one every day for awhile. They're full of cultures, taste good, and my tummy doesn't complain. That's a good combination for me right now.

God gave me an angel in disguise when I "found" this wonderful man. We met at church, too! He's a gentle soul, who would do anything in the world for me, and I feel the same way about him. We've been deeply in love with each other for 46 years now, as it was surely love at first sight when we met. I can't even write this without getting tears in my eyes, just thinking about him.

God has been so good to us, with two wonderful children, two fine son in laws, and three great grandchildren. I need to spend more of my time being thankful for all the blessings in my life, instead of dwelling on my present discomforts.

I think about all the horror stories on the evening news, with children being beaten to death by their own mothers and put in microwaves, and it makes me realize how very fortunate I am to love and be loved by so many family members. I take so much for granted, and that's a sin that I need to repent of and make a conscious effort to cleanse from my life. Thank you, God, for your very near presence with me today. Amen.

Seeing My Doctors Sooner

I was quite surprised to not only be able to get an appointment with my Gastroenterologist this Friday, but I was also able to get one with my Neurologist next Tuesday. The Neurologist appointment really surprised me, as I know how long I've had to wait before to get one. I must have lucked up on one somebody had canceled, but I'm thankful for it, regardless of how I got it.

I'm hoping that, between the two appointments, a definite solution to my stomach problems can be found, and I also need to have a different sleep aide prescription besides Ambien.

The Friday appointment won't be a problem, because Frances comes on Friday's anyway, but I'm just keeping my fingers crossed that she can come on Tuesday. She's out of town right now, so I'll have to call tomorrow to work out the details. If she can't, then I'll have to start calling church members to find somebody who can sit with Daddy for us.

I want to thank you, friends, who put up with my daily moans and groans, to give me an encouraging word. I really need that encouragement right now. Our situation with Daddy has settled into pretty much of a routine, but there are still a lot of questions about what the future will hold. It's hard to imagine that he will recuperate from this episode and be able to live by himself again. But I keep reminding myself that he's "graduated" from Hospice once before. He really is amazing! Cantankerous, but amazing!!!

Same-o Same-o

I did go to church Sunday morning, which was a pleasantly normal thing to do, but my stomach acted up, as usual, so I really didn't get to enjoy the afternoon. I did get a good bit of rest, though, which I certainly needed, but I'm still not getting more than a few hours sleep at night. The Ambien just isn't working for me.

Today has been pretty much a repeat of many others, with the accompanying stomach bloating and cramps. I'm being just as careful as I can with what I eat, and I'm not having any bathroom problems, so I have to conclude that this is due to the Parkinson's itself. Just like my legs were moving so slowly before I was on medicine, evidently my digestive system muscles are also moving very slowly. The regular Parkinson's meds don't work on these involuntary muscles. That's what the Zelnorm is supposed to be helping, but I don't really think it is. And, thanks to how lousy I'm feeling, I'm losing a good bit of weight.

So it looks like I'll be moving my Gastroenterologist and Neurologist appointments up sooner, if possible, as I've had about as much of this stomach trouble as I want to put up with.

We Went on a Date Today!!

Thanks to being able to hire the same sitter we had used several years ago, when we were taking care of my mother and father in law, we were able to go out on our Date Day today! It was wonderful to get out of the house and know that Daddy would be well taken care of.

I set a fairly light itinerary for the day, since I knew I was so tired, but I did want to at least go to a few Estate Sales. We had very good luck at one of them, since we caught them at that stage when they just wanted to get rid of everything. That doesn't happen very often, but when we're lucky enough to find a real sale like that, we usually leave with some real bargains. Today was no exception. Now all I have to do (HA!) is find the time to photograph everything we bought and write up the descriptions, so we can put them up for sale on eBay.

I managed to take several doses of Tylenol during the day without DH realizing it, as I didn't want him to know that I was so achy. I was determined that our day together not be spoiled. I only used the cane at one house, because the driveway was very steep, but my walking was stiff and awkward feeling all day today. That's a sure sign of just how tired I am.

I had a bad headache today, too, something I rarely have any more. I suspect that's because I'm still not getting enough sleep. I've already had my night medicine and a sleeping pill, as I write this, and I plan to go to sleep as soon as I finish this post. I'm really not having that much trouble going to sleep. It's staying asleep that's giving me trouble. And, of course, my tummy couldn't get through the day without putting up a fuss. I was extra careful to eat bland foods, but here I sit, with the hot pad across my middle, trying to make things feel better.

Muddling Through a Rough Day

Well, it was good while it lasted, but the Ambien didn't keep me asleep last night or the night before. I had a particularly rough day with Daddy yesterday, too, so the sleep would have been helpful. Daddy was way over in the middle of his Queen sized bed and couldn't seem to get up yesterday. I tried helping him get into position to sit up, and even pulled on him some, but he sat up several times and fell back over each time. I called DH to come up and help early, which he did. By the time he arrived, I'd finally gotten him to sit on the side of the bed, and I'd managed to change him out of his wet night things. But I sure wasn't going to try to help him walk up the hall to the living room, not as worn out as I already was, and as weak as he was.

We worked together to finish getting him dressed and get breakfast on the table, and afterwards we took him to the toilet, because he hadn't had a bowel movement in several days. I gave him a Dulcolax the night before and prune juice for breakfast, so it was time to expect results. Nature finally took care of things, but it seemed to wear him out, as he slept in his chair almost all morning.

Without going into any details, I had quite a cleaning to do in the bathroom, and it set off the nausea, just as it has ever since I've been on the PD meds. I tried all day long to relax, take some gas pills and antacids, but nothing would settle my stomach. It really didn't stop hurting and cramping on me until about bedtime. I blamed a lot of it on tasting the pork and beans at lunch, but my tummy was already tender before that.

Let's face it. Care giving involves dealing with some less than pleasant bodily functions. We dealt with them when our children were babies, and we deal with them again when our parent's bodies return to the state of babies. There are times in life when such tasks are easier to deal with than others, I guess, because this is certainly not one of my better times. DH isn't very good in this particular department, either, although he's improving out of necessity, God love him. I took care of all this sort of thing with my mother and his Dad, but now he's having to help, and he's doing his very best to survive it. He's from the generation that didn't even change diapers, either, so he doesn't even have that experience to fall back on. Under the circumstances, he's doing fantastic. I can't brag on him enough.

I can't help but wonder if it has occurred to him that he's getting the practice he will need to take care of me someday, hopefully way off in the future. It has certainly occurred to me!

Ahhh To Sleep, Perchance to Dream

Thank goodness for Ambien. I called my Neurologist's nurse yesterday and explained the situation with Daddy. She called in the prescription, and I had a good night's sleep last night, for the first time in a week. Whew!! That felt good.

It will take me a few days to get over being so tired, I expect, but getting a good night's sleep will make a world of difference in what I can accomplish without being totally exhausted. Maybe I can even get back to practicing my Tai Chi in Daddy's living room. After going to all that trouble to learn it again, I sure don't want to forget it. And it's good for my balance and stamina, too.

I've been reading some articles lately that say Pilates is good for PWP (people with Parkinson's), so that may be the next thing I look into. I haven't been able to figure out from what I've read if these were specially modified Pilates classes or not. Of course, it would make a big difference if they were. Speaking of PWP, I've also found that Parkinson's folks call themselves Parkies. Ain't that cute? So I'm a PWP and a Parkie now.

One of the Hospice people tried unsuccessfully several times yesterday afternoon to call us from her cell phone. We live in the middle of nowhere, as far as cell coverage is concerned. "Can you hear me now" just won't work out here. In fact, we had Verizon, and dropped it, because we couldn't get it to work at all LOL. She never did come, and we never did get to talk to her, either.

I'm considering ordering DSL for here, so I don't have to depend on my cell phone while I'm on the computer. Plus, for some reason, the program our church uses for editing our website just won't let me FTP from here on dialup. It works fine at the house on DSL. I'm the church webmaster, and that has to be updated weekly.

As you may be able to tell, I'm in a pretty good mood today. It's been over a week since he fell, and we've developed somewhat of a routine. Now that I know I will be able to sleep, I feel like we can handle whatever comes, between the two of us. We've had plenty of care giving experience, and we have Hospice for support. Our daughters and church family will help where they can, and we have our faith in God to hold us in the good and the bad times. What more could we ask.

Your prayers and kind thoughts are always appreciated, too. The effectual fervent prayer of a righteous man availeth much!

The New Normal is Settling In

We're getting into something of a routine around here, so things are beginning to settle down. DH has been coming up each morning and helping in any way he can, as I get Daddy up and dressed, and we get breakfast going. Hospice has left the wheelchair, a bedside table, an emergency oxygen tank, and one of those oxygen maker machines that plugs in, for when we eventually need it. The bath lady comes out today, too. And his medicine should be coming via FedEx today, also.

We're taking turns going home for a few hours during the day, so I can take care of our Internet business and get packages ready to ship. And I can play with our cat for a bit, too. We live right down the street, so it's not that big a deal.

With all that settling down, my PD symptoms have come under control again, I'm happy to say. My only continuing problem is the lack of sleep, and I've given that long enough to get under control naturally. I'm calling the Neurologist today and see what he can prescribe, as I can't possibly continue at this rate indefinitely.

DH scrubbed and mopped the kitchen floor and brought our good vacuum cleaner up here last night, so we could give the carpets a good cleaning, too. We've got the time to do it, so we'll gradually get the house cleaned up. We've had to neglect it this last year, what with our daughter being in the hospital so much and then me being so sick. Daddy has always vetoed any suggestions at paying someone to come in and clean. Because he's blind, he really doesn't like strangers in the house, and I can understand that.

I'm not sure yet if we'll try to find some part time help to give us a day off or two, since Daddy is so uncomfortable with that. It really depends on how much we need it. We have to take care of ourselves, too, and time away from all this is part of that process.

Care Giving Ain't What It Used to Be

It's only been less than 4 years since we were care givers for my FIL, keeping him at home with the help of Hospice, after he had been in the hospital. He was in a very nice Assisted Living Home before then, because he resented us, probably for taking him out of his home, and we couldn't handle his violent outbursts. They never had any problems with him at the Assisted Living. It was an emotionally draining job, but one we have never regretted doing.

Here I am, just 4 years older, and taking care of Daddy has worn me slap out, thanks to PD. My dear hubby has really had to take up the slack and get much more involved in taking care of my Daddy than he would have had to, if I had not developed Parkinson's Disease. As an example, a couple of days ago my legs stayed wobbly all day long, even after I took my PD meds, and I didn't trust myself to help Daddy walk, so DH had to do it.

First off, the emotional stress of finding him Friday started me off "in the hole" so to speak, and my medicines never have been able to catch up.

Also, I've not been able to get a decent night's sleep at Daddy's. The same recliner that I slept in for several years when I stayed with Mama is no longer that comfortable to me, and that's the only place there is for me to sleep. So, I end up going to sleep early, waking up somewhere around midnight, and spending the rest of the night on the computer. Luckily, I've been dozing quite a bit on the computer during the rest of the night hours. But that's still a poor second to a good night's sleep.

So we decided the best thing to do was to try to get Home Health or Hospice here to give us some help. That's why we took Daddy to the doctor's Monday. Well, Dr. M. followed through, just as I expected him to. The Hospice nurse came today to admit Daddy, and I filled out all kinds of paperwork. They will be sending someone twice a week to help him bathe, a nurse will come by once or twice a week, and they will provide all Depends type products and most of his medicines, too. They're sending a wheelchair Friday, so we can take back the one we borrowed.

Daddy understands that I need the help, so he's being very agreeable to all this. She offered to send a hospital bed, but Daddy's not ready for that yet, so she said just let her know when he needed it. It's not a whole lot of help, but any is better than none, and with his age and all, he's bound to need more and more care from now on. This way, all the routines are in place, and he'll be used to the people coming and going and being in and out of the house. It should certainly make things easier for DH and me, knowing that he's being seen by a nurse each week.

Took Daddy to the Doctor

We did take Daddy to the doctor yesterday afternoon. We borrowed a wheelchair from one of our church friends, and we have a very nice ramp left from when Mama needed it, so that made getting him there less of a hassle. The worst part was the long wait at the doctor's office. We had a 2:00 appointment, but didn't see him until after 3:00, and that's normal. If he weren't so conveniently close to the house, we wouldn't put up with it.

Anyway, he started talking about MRI's and tests on carotids, and I told him that we wouldn't be doing any of that, because we wouldn't be following through with any of the results. That took him aback for a second, and then he stopped and thought about who his patient was, and agreed with me. I told him my concern was if Daddy might be developing pneumonia, which could be dealt with, and could he get us some help from Home Health or Hospice. I told him that the stress and extra work of the last few days had exhausted my Parkinson's meds ability to cope with my symptoms, and that my legs were very wobbly. He agreed that Daddy should qualify for some kind of help, and he would get his office lady on it. He gave Daddy an antibiotic shot and a prescription for more antibiotics, and that was it. He agreed with me that it appeared that he had suffered a small stroke, but was reluctant to start him on Cumadin or any other blood thinner, because of his age (he's 101).

So, it was a long day, and a tiring one, as only waiting in a doctor's office can be tiring, but I think we accomplished what I had hoped we would. This doctor will get him on Hospice if it's possible, and that will be the help we need to keep him in his own home. The one thing Daddy dreads is ending up in the hospital or a nursing home, and it's important to me that I help him have the Quality of Life that he wants, even if it shortens it a little. As long as he has lived, I don't think that's a bad thing. With the extra help, and all the help that my DH is giving, we'll make it through this. We've known it was coming, as it was inevitable, but it's still harder to deal with than we had planned, thanks to the Parkinson's leaving me with so little stamina.

Life's Unexpected Turns

This has certainly been a strange last couple of days for me. It started with my laptop suddenly getting the dreaded Blue Screen of Death over and over, for no apparent reason, right before Thanksgiving. We had all the family coming for dinner, and that meant moving all the eBay stuff out of the guest bedroom, so the grandkids could spend the night. That meant there was no time to work on the ole 'puter, so I had my first taste of computer withdrawal LOL.

I behaved myself, and only worked on the computer in between housework, as I found out very quickly that I have no stamina at all. I used to be able to move all the stuff quite easily, dust and vacuum, and generally straighten the house with no trouble, but not any more. It seemed like I needed to sit down every few minutes and catch my breath. Thank goodness my dear hubby was doing all he could to straighten up the place, and of course he did all the shopping.

Our family helped out a lot on Thanksgiving, instead of just coming and sitting down to the meal, the way they always have before. Our SIL cooked the turkey, and our daughters took care of the deserts, so DH fixed the vegetables, and I didn't have to do anything. It's just as well, as I woke up with those bad stomach cramps and the bloating again on Thanksgiving Day. I spent most of the day with a hot pad on my tummy, ate almost nothing at lunch, but did enjoy having everybody here. Daddy ate almost nothing, and no amount of prodding would get another bite in him. The kids were particularly good this year, as they stayed quiet all day. I asked DD if she had threatened them within an inch of their lives, but she said she hadn't said a thing to them. So they hadn't made Daddy nervous, as they sometimes do with their playful noise, so it didn't make sense that he wasn't eating.

We had a wonderful time enjoying getting to visit with everybody all at once, particularly since our older daughter and her hubby will be with his parents for Christmas this year. Younger daughter and the girls spent the night and didn't go home until Friday afternoon, so we did get on our other laptop and do some Wishlist shopping for the girls, so I'll have some things to pick from that they really want.

After such a pleasant day and a half, even with my stomach cramping, our whole world turned upside down when I got up to Daddy's to fix his supper Friday evening. I found him in the living room floor, conscious, but unable to get out of the floor. He was not hurt, evidently, and doesn't remember falling, but he'd been on the floor most of the day. Mind you, he has one of those "I've Fallen, and I Can't Get Up" buttons in his shirt pockets, but he wouldn't use it! I've never been able to get him to use it. No matter how many times I explain it to him, he thinks it's going to call an ambulance and take him to the hospital. But I have it set to call us, and then a neighbor, and only call the EMT's as a last resort.

So I called my DH, and he all but ran up there, and got him out of the floor, by the hardest. He was very weak, as he had not eaten since breakfast, and he's diabetic. We got some juice and a banana into him, and soon realized that he must have had a mild stroke, as his speech was slurred.

So, I've been taking care of him now for the last few days. He seems to be getting stronger, and his appetite is improving. His speech is still slurred and I'm being really careful to feed him thick foods like oatmeal, so he won't choke. I'm not sure what we will do today. It would be extremely difficult to take him to the doctor, and I'm not so sure it would accomplish anything if we did.

As for me, I can really tell the stress has put a strain on my Parkinson's meds. My balance is poor, because I'm really tired, and my back is bothering me from trying to help him stand up. Luckily, I've had lots of practice at care giving, and I do know the correct way to do things, body mechanics wise.

Daddy will be 102 in March, so it's going to be very difficult for him to recover from whatever happened Friday. He wants to stay home, and I want to be able to help him do that if it's at all possible. If I could be fairly certain that taking him to the doctor would get us some Hospice help, then it would be worth the trouble of getting him in and out of the car and the doctor's office.