Getting Back to "Normal" and Doing Some Soul Searching

I didn't have any lasting bad effects from the Physical Therapy last week, and my neck continues to improve. The pain is essentially gone, although I do still have some stiffness, and certain activities still hurt. At least I am not hurting when I'm doing nothing!

I continue to limit my reading about Parkinson's, but it sure is hard to intentionally stay away from Parkie friends I value so much. I had intended to stay away until I had the appointment with the Movement Disorder Specialist (MDS) in April, but I just couldn't do it. They are too much a part of my life now. If I am diagnosed with something besides PD, I plan to keep up with them anyway. I did stay active in the Alzheimer's caregiver forum I belonged to for quite awhile after our parents died, but I did finally quit visiting. Life moves on eventually.

I had another choking episode with a pill a couple of days ago that was really bad. That particular pill burns in the mouth, for some reason, if it doesn't go down right away, and it burned in my throat when it got stuck. I ended up with a very sore throat that lasted until the next day. So, again, I've gone back to doing what my Gastroenterologist told me to do. Taking the pills in apple sauce instead of water makes all the difference. I'm just being lazy, and dealing with a heavy dose of apathy right now. That's the only way to explain that it's easier to get a glass of water than to open the fridge and get out the apple sauce and a spoon. I have gradually stopped doing several things he told me to do, and I need to get back to the straight and narrow, for my own sake, and my hubby's. He worries about me so, often without good reason, other than he loves me. I must try to do all I can to keep from getting myself into situations like this that scare him so.

There was a post on Patients Like Me today that has me doing some heavy thinking. Basically, it was about how many Parkies avoid being around those PWP who are farther along in their stage of the disease, because they do not want to be confronted with their own possible future. I know I fit in that category, as I have intentionally not even tried to find a support group, and I have turned down some invitations to meet some online Parkie friends who live in Alabama, too. It's one thing to read how they are doing, but quite another to see it for myself. I know that's the way I would react, because I freaked out when I first looked at a free DVD I ordered that had real Parkinson's people doing exercises. I haven't watched it again. It does help, knowing that other PWP feel this way, too, but it's not fair for those who are farther along, who are missing the support they need. It's a reaction I'm going to have to work on, but not until after I see the MDS.

As it always seems to be, I get better in one area and regress in another. I guess that's normal for everybody, right?

Odd Physical Therapy Today

I went to PT this morning, and they did start me on some exercises, all for my arms. The first few were fairly easy, but then she had me pushing down with what seemed like more resistance than the others were set for. I stopped at the first set of ten on that one, instead of doing two sets of ten the way I had done all the others.

Then I moved to the pulley rope, which I've done before with other therapy, and it's always fairly easy, unless you just can't raise your arms. I had no trouble with that at all. Problems came when I stood up from that one, though.

I woke up this morning trembling more than usual, and getting into the cold car this morning just made it worse. And then I did all this new exercising on top of that. I guess everything just worked together to bring major big time tremors in my legs and arms, all at the same time. I was frozen in place, unable to move, because I was just not in control at the moment. The Aide immediately pulled a chair over for me, and I didn't do any more exercises. They hovered over me for awhile, with me assuring them that I was OK, that it would ease off on its own, that there wasn't anything they could do, and I really was OK.

After I convinced them that I was not going to fall, they moved me to the room where they do the ultrasound and heat therapy with the TENS machine, and everything went as usual. About half way through all that, the tremors settled down to just the usual quiver in my right arm and leg.

The only thing I can think of is that using the machine that was apparently set with too much resistance for me to handle just used up the dopamine I had available for a little while. It will be interesting to see if I can find anything to agree or disagree with my hypothesis.

It's been a shaky afternoon, and I just gave in to my chocolate craving - that's my way to deal with stress, as any chocoholic will tell you. And my neck is sore, but not painful, from the exercise. But at least I'm walking around about like usual - maybe a little shakier, but not much.

She told me I have 3 more visits before I have to see the Orthopedist again, so I need to make that appointment. I should have done it today, but I'm in one of those procrastinating moods today, and I just didn't feel like doing it. These moods don't make any sense, but I get into them every once in awhile. Things that happen like this morning seem to bring this apathy on, like everything is just too much trouble. It's stupid, I know, but it's just the way I get at times. I'll snap out of it, just as the shakes finally stopped. Just takes a little time.

Tomorrow is Date Day, and it will be a better day. I'm sure of it!

Tummy's Back to Normal - PT Continues

It took a couple of days of very careful, limited eating, to get my tummy back to a normal situation, but I'm much better now. I've gone back to using the glycerin suppositories, and that's helping the most, other than to avoid some questionable foods.

I talked to my PT Monday, and told her my neck was much better, and that I was surprised they had not had me doing any exercises. She said they wanted to get my muscles calmed down first. So, she is going to add some tomorrow. I told her I wanted to be stingy with my visits, in case I needed to come for something else later on in the year, so she has me on Monday and Thursday now, instead of 3 days a week. Of course, that frees up our Date Day, and that suits me just fine.

I've been extremely busy trying to help all the families who have been asking for help find lost lovies, ever since the msnbc.com article came out about our Plush Memories Lost Toy Search Service. We had well over a thousand hits that first day, and our traffic is still about double what it was before the article.

I'm fighting the poison ivy again, and I'm not sure which one of us is winning right now. I have found that I can take one Benadryl at night, and that stops the itching until in the afternoon. Then I take a non drowsy type that the pharmacist said I could use. It doesn't work all that well, and by early evening I'm in misery. It gets in my blood stream or something, because I end up with rash and blisters in places that it should not be. Very delicate skin itches ten times more than arm or leg skin, I guarantee it!!!

I see the Dermatologist in another couple of weeks, so I will certainly ask him about anything I can do to dry it up quickly.

I think I know where the poison ivy is coming from. We've been bringing our outside cats in at night when the weather is below freezing. I am pretty sure I'm catching it from them. We had the brother and sister kitties neutered last week, and the little girl is somewhat frail, so we did not want to take any chances with the cold. The only other possibility is that the wood chips I'm using for the compost have the vines ground up in with it. Our back yard is just full of poison ivy, so that's certainly possible.

I'm continuing to limit my reading of anything Parkinson's related, but nothing has changed as far as my foot tremors and facial tics go. Oh, and I still haven't started back using the TAP. I decided to get my neck calmed down, plus see if the mouth tic was related to maybe my tongue moving around on the inside of the mouthpiece in my sleep, and it getting to be a habit. Well, the neck is calming down nicely, but the mouth tic is still there. So I think I can stop blaming the TAP for that.

Since I've been taking the Benadryl at night, I'm sleeping quite well, even without the TAP. Funny, the Benadryl is working much better than all the fancy sleep meds ever did, and I've tried almost every prescription they make at one time or another.

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.

Less Computer Time = Getting other things done!

Well, I have pretty much stuck to my intention to stay away from places where PWP are describing their symptoms. I have visited the PLM site a few times, and even made a few comments, but I have been cautious about the type of posts I opened, to avoid reading about anything tremor related. I have not done any research on PD, either, other than to try to find a correlation between heavy steroid use with Parkinson's. This was not for my benefit, but for one of my readers, who asked some interesting questions.

My neck continues to be very stiff and painful, but I can put up with it, knowing I will be getting help next week when I start Physical Therapy.

I am pretty much caught up with posting requests for help on the Plush Memories Lost Toys Search Service, and we are over the Christmas rush on eBay. I still need to put a new post on our Yesterday's Memories blog, and there is always work to do on the BLOG VILLAGE TopList that I run.

So, I have been getting some much needed house clutter cleaning done, but there is plenty more that needs to be done. I would like to have the house straight for the New Year. At least it can start that way LOL.

We did have a great Christmas, seeing all of our family all at once, and enjoying being with our grandchildren. It looks like we actually managed to buy them some things they will enjoy, and that's not easy to do when they hit those preteen and teen years. They all have birthdays right after Christmas, so we will be seeing them again real soon, too.

Hubby gave me a blender for Christmas, so now I can learn how to make Raw Foods Smoothies, something I have been wanting to try for some time now. Jackie, from The Vegan Diet, clued me into The Raw Food Coach, and since we eat a lot of raw foods, anyway, I have been learning as much as I can about what foods are the best for me. I have been doing a lot of research on the high anti-oxidant Super Foods, and we are gradually changing our diet to include lots of them daily.

We have had a lot of fun at our house of late with trying to get our very spoiled (neurotic) inside cat to accept our two outside cats as occasional inside visitors. They are too young to leave outside all night when it is freezing, so we bought a pet cage for them. They don't mind being in it at all, which surprised us, but it sure makes going out of town easier. We keep our inside cat in the hall bathroom when we are gone, and now we can keep the outside cats protected, too. Our only problem is that Miss Queen Fluffy doesn't like having them inside. There have been quite a few fights between Fluffy and Mr. Salt. Miss Pepper stays out of the rough stuff, as she has some kind of nerve damage to one of her hind legs. She is the main reason we decided to bring them in on cold nights and when we are out of town. Fluffy surprised us last night and behaved the whole time they were in the house. Maybe she's finally adjusting to them, I hope.

One of my anonymous readers has given me a clue as to what my diagnosis might be, if it's not Parkinson's. So, I have started doing some research on Dystonia. Also, there was a new post today on PLM discussing Ataxia, and that sounds familiar, too. I already feel better, knowing that there are other conditions that my symptoms seem to fit. It makes me feel less like this is all going to turn out to be psychosomatic. I can't bear the thought that my body has been going through all this due to an emotional problem. With other possibilities in sight, I am in a much better frame of mind than I was yesterday, thank goodness. So, Marion, the glass is looking more and more like it's half full, again.

As always, I appreciate your prayers and concern, and love to hear from you, even if it's just to say HI!

Back on the PD Meds

I considered not going back on the meds, but we will be out of town for Christmas, and it didn't seem prudent to have even a slight possibility of ending up in a strange ER. So I stuck with the original plan, and went back on the full PD regimin yesterday afternoon.

It was very interesting to see what my right foot did last night when I got ready to go to sleep in my recliner. It must mean something, and I wish I had a video of it to show my doctors.

The toes and ball of my foot cramp sometimes very painfully, and no amount of pressure will make it stop. Hubby will get up and stand in front of my recliner, and I will push my foot into his thigh, which normally stops the cramp pretty well. But last night, each time he released the pressure, the cramp started again. At one point, when I thought it had quit, I moved my leg away from the pressure, and my foot went into this exaggerated flopping back and forth, up and down, and sideways. I had no control over it at all. It didn't hurt, and it looked so funny that I started laughing. Hubby thought I was doing it on purpose, and was surprised when I told him I wasn't. You should have seen the look on his face. Then, in an attempt to stop it, I pressed my foot into the recliner. At that point, my knee started bobbing up and down, as if to say, "You can't stop ME!" It was so funny that both of us ended up having a great big laugh out of it all. And then, just as suddenly as it had started - it stopped all on its own.

So again, I ask myself - if not Parkinson's - then what in the world could make my body act like that????? The only explanation that makes any sense to me is that this is all psychosomatic, and there is nothing really wrong with me at all. No, I don't think I am going crazy, but the mind can play terrible tricks on the body. Just think about the Stigmata - that someone's palms could bleed. I know there is such a thing as hysterical paralysis, so I don't put anything past what my mind could be doing to control my body. Yes, I spent the last 10 years or so under great stress, taking care of parents and our older daughter. And, our daughter was hospitalized with, of all things, Peripheral Neuropathy! Not that my symptoms look like she did, but it does seem odd that I would be diagnosed with a neurological disorder not too many months after taking care of her.

I've had this conversation with myself before, about this whole thing possibly being psychosomatic, way back in August of 2006. And here I am, a year and a half later, still wondering.

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.

Looking for a Parkie Who Reads/Writes in Vietnamese

The Patients Like Me site I belong to has a new member, with very limited English, who wants to correspond with any PWP who can correspond in Vietnamese. He might also be able to talk to a Parkie who is fluent in French, but I'm not sure about that. Nope! He wrote me, and he does not speak French. Well, I was hoping.

When I Googled on the Internet, trying to find a Parkie who spoke Vietnamese, I found lots of articles about all the Vietnam veterans who were exposed to Agent Orange. It seems that there is a high incidence of Parkinson's among that group. With all the other terrible problems these soldiers have faced over the years from Agent Orange, this is just one more tragedy they have had to endure. My heart goes out to them, and to their families.

I would suspect that there is a high incidence of PD among the native Vietnamese population, as well. The Parkie I am trying to help find someone to correspond with is 51.

Please pass this request along, so we can help this fellow Parkie find an understanding friend.

Sunday Shoes Are a Problem

I've been casually looking for some type of decent looking flat shoe that would give me more support than the ones I've been wearing on Sundays. Yesterday convinced me that I must make this a top priority this week. My best pair of decent looking shoes is a Dr. Scholl's pair that have a Velcro closure across the top. They fit quite snug to begin with, but the longer I wear them, the suede leather begins to relax, and I get less and less support from them. For just church, I can barely manage, but yesterday, due to a funeral home visitation that we attended (that means lots of standing around talking to people), I was in them a good part of the day. By the time we got home, I was so wobbly that I could barely take a step safely, even with the cane. As soon as I got in the house, I changed into my athletic shoes, and you would have thought I was a different person. My gait was immediately more normal.

So, this week I will be buying some kind of walking shoe that I can tolerate for "dress" shoes. I'm thinking a black pair won't call too much attention to my feet, hopefully. I do wear pant suits to church, so it won't look quite as bad as it would have with a dress or skirt. I started wearing pants to church when the short short skirt length came in style, and I just never went back to skirts. Too comfy, I guess, or me being lazy?

I tried on some Vegan Earth Shoes last week, thinking that might be a way to get a comfortable shoe that would support me, and not have the hard leather to bother my toes. But that's not going to work for me. Earth Shoes have what's called a negative heel. The heel is lower than the toes. Sounds odd, but it's perfect for PWP, as we tend to lean forward as we walk, and these negative heels counteract that. My problem is that I had to have most of the toe nail root on my big toes killed off with Laser some years ago, due to chronic fungus and ingrown toe nail problems. That means my big toes are basically unprotected. The slant of the Earth Shoes makes the big toes push up against the toe box, and I can't take that.

I ran into the same problem when I bought my athletic shoes. There are only a few brands that make a big enough toe box for my toes to be comfortable in them. So now, I've got to find a dark color walking shoe among the few brands that I can wear comfortably. Just what I wanted to be doing during Christmas Shopping crowds. Hopefully, my fingers can do the walking. I'll call the athletic shoe stores today that I have bought Asics and Ryka from before, to see if they have dark shoes in my size.

If I'm lucky enough for them to have something I can wear, we'll go to town today. While we're out, we'll probably try to do some of our Stocking Stuffer buying. This is the most fun part of Christmas gift giving for us. Our children get money, and now the grandkids are old enough to want money more than presents, so it's the stockings that get all of the attention on Christmas. We buy odds and ends all year round, as we see something that fits each one's personality and tastes. But filling up those big socks takes some creative off the wall stuff, to keep from duplicating what we have bought them in the past. Even our grown children and their spouses would be disappointed if they didn't have that lumpy stocking to reach into, pulling out one thing at a time, never knowing what sort of gag gift or useful doodad might be at hand.

I will think positively today, and look forward to finding some suitable shoes, plus enjoy shopping for the Stocking Stuffers.

No Such Thing as Status Quo with Me

We had a wonderful Thanksgiving Day with our whole family. Our older daughter and her hubby both love to cook. So they went overboard with the food, but it was important to them, as their first big family meal in their new home. I could tell she was getting all stressed, which is not good for her at all, but I sure was glad I didn't have to have them all at my house. Don't get me wrong, I love being around all of them... but I get way too panicky at the thought of having that big a group all at once.

Plus now, my house is not clean enough for me to feel comfortable entertaining. I have started trying to unclutter some parts of the house, but it took it several years to get in this mess, and it's not going to be clean overnight. Hubby says to just ignore it .... something he seems to be able to do quite well. It bothers me, though. Every time I try to tackle it, I get worn out before I've made a dent! LOL

Anyway, I did have an appointment with my Gastroenterologist this week. I am still having lots of belching and gas, although the elimination difficulties have improved considerably since he put me on the Bentyl. I had read some things on the Internet that made me ask about the Metamucil and Glycolax, as far as were they contributing to the gas problem. I gave him the printout showing the times I was taking my meds, thinking he might see something that I needed to change. He was flabberghasted. He said he had no idea I was taking the Metamucil and Glycolax in the morning - that I should be taking them at night!

He also said the loud belches were from swallowing air. I told him I knew I did that when I took my meds with a big gulp, because I had trouble swallowing them. He suggested I take them in applesauce, instead of water. And .... it works! I do have a little trouble getting the swallow to come, though, thanks to my uncooperative tongue.

My tongue has started some kind of tic. I'm lip licking, or lip sucking, or moving my tongue around, rubbing against my teeth almost constantly now. I mentioned this new quirk in the PLM forum, and one of the Parkies said she had been rubbing the back of her dentures with her tongue for 14 years! She's actually worn a hole in the back side of two of her teeth!

Speaking of the TAP, I am continuing to get 7 1/2 to 8 hours of sleep each night. My alarm watch is waking me up now to start my meds at 5:00AM. If I could just stay awake later at night, I would change the time of the first meds. But it's all I can do most nights to stay awake until 9. I'm toying with the idea of taking a short afternoon nap, but I will wait awhile longer before I try that, to be sure I have the sleep habit well established.

I am out of the muscle relaxer meds now, but they really didn't help a whole lot to ease the soreness and stiffness in my neck. So I'll be calling my Orthopedist this next week.

I'm still having a lot more tremors than I had before my trip to the ER. The tremor in my right hand is unpredictable, but strikes often and hard. If I stand still for even a few moments, my right leg starts a little dance all by itself, making my whole body bounce, and sometimes now it starts up even when I am sitting down. That was only happening at church before, where I was blaming it on being cold and the seat being uncomfortable. Now it's pretty much a given that if I'm standing, I'm dancing, and if I'm the least bit tired or upset, I'm jiggling as I sit. And walking still feels like I'm on Jello. I'm using the cane all the time when we go somewhere now, except for church. I'm still stubbornly holding out on that, as it puts too much attention on me.

I am going to have to keep track of the times of the day that all these tremors start and stop, so I can tell if it has anything to do with my meds wearing off.

So today, I can give my sleep problems an A, elimination difficulties a B-, stiff and sore neck a D, and tremors a D.

My Thanksgiving Prayer

This Thanksgiving will be our first without any of our parents with us. It's the first Thanksgiving where our older daughter and her hubby take over the reins of being hosts, passed down from my Grandmother, to Mama, then to me, and now her. It's a reminder that as things change, they really stay the same. It's a reminder of how very important family is. And how important friends are.

It's also a reminder that I am no longer the caregiver, a role I held for much of my married life. But now, I am "the sick one" in the family. Parkinson's Disease does not have any cure in sight yet, but only ways to manage the symptoms, with varying degrees of success and often horrible side effects. It is progressively debilitating, which I'm daily reminded of, as I talk to so many PWP who are so much worse off than I am. I see it in the difference in what I can do now, compared to last Thanksgiving. But, I am so very thankful that I am still able to walk, talk normally, write fairly legibly, use the computer without problems, that my digestive problems are calming down somewhat, that I am sleeping better, and that I am mentally still ME. I pray that I can still say that next year.

You dear cyber friends, who have been a listening ear as I chronicled this journey, you will never know how much you have helped me deal with all that has been going on this last year. You have helped me give voice to my reactions to this disease. I can't thank you all enough.

I pray that you will all have as wonderful a Thanksgiving as I will, surrounded by family, wrapped in love.

Amen

Hopeful News on Stem Cell Research with NO ETHICAL COMPLICATIONS!!

Great news from the New York Times today!

Science
Scientists Bypass Need for Embryo to Get Stem Cells
By GINA KOLATA
Published: November 21, 2007
Turning human skin cells into what appear to be embryonic stem cells without having to make or destroy an embryo could quell an ethical debate.

I am one of those who has ethical and religious objections to using human embryos for stem cell research. When you consider that I am also one of those people who will benefit so greatly by this kind of research, an article such as this one in the New York Times today gets me very excited.

And now today, another article from the New York Times:

Science
Man Who Helped Start Stem Cell War May End It
By GINA KOLATA
Published: November 22, 2007
James A. Thomson’s laboratory reported a way to turn human cells into what appear to be embryonic stem cells.

My Pharmacist wears an S under his lab coat!!

Yep, as far as I'm concerned, he's Superman, ready at any moment to rescue this damsel from danger. I went to my Orthopedist today to get some relief from the painful neck spasms I've had for the last two weeks. He prescribed the muscle relaxer, Flexeril, which I have taken before, long before I was diagnosed with PD.

We dropped the prescription off on our way home, and DH went back to get it about an hour later. He came home with Methocarbamol, not Flexeril. Sure enough, I would have had a serious drug interaction with Flexeril and my PD meds. My pharmacist called the doctor and they found a muscle relaxant I could take, all before hubby ever got there to pick it up.

I think that makes three times in the last few months that my fantastic pharmacist has caught medicine errors that my doctors have made.

We live in a very small rural town, and we went without a pharmacist for quite a few years. When this one opened up shop, I told him the first time I went in there that he could depend on us to patronize his shop, even though we realized that we could buy cheaper at Wal-Mart or the chain store pharmacies. He's not open at night, or on Saturdays and Sundays, but I wouldn't trade him for anything. He more than pays for his higher prices with his service and the fact that we are close enough to walk to his store if we had to. The franchise pharmacies would require an almost hour round trip, which is no fun if you are miserable. Sure, there have been times when we had no choice but to patronize the big boys on the weekend or at night, but we try our best to give our local fellow as much business as we can.

I've said it before, and I'll probably say it again. Everyone should keep all their prescriptions medicines on file with one pharmacist, and make sure that pharmacist cares about you, and not just about making money!!

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.

Requesting Your Prayers

One of the Parkies that I have become friends with on the Patients Like Me site has just had a positive diagnosis of skin cancer, and she is to have surgery on the 14th of November for a lesion slightly bigger than a half dollar.

Now another PWP on the Patients Like Me site has posted that she is getting the results this week on a biopsy for a possible skin cancer on her leg. That's 2 out of less than 700 who have reported it from the PLM Parkinson's membership.

The increased risk of developing Melanoma is one of the characteristics of Parkinson's that few people are aware of. I certainly was not.

The one to have surgery goes by the name of knoxgal, and the one to get the biopsy results goes by pokie too. I know they would both appreciate your prayers on their behalf.

Looks like I'll be making an appointment with a Dermatologist to get checked over from head to toe! Great, another doctor!! But I do think it is wise to have it done, under the circumstances, as I am covered with moles, thanks to my parents.

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 ca