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.