Praise GOD from Whom All BLESSINGS Flow!!!

I really am doing great, and it's wonderful to be able to say that. Some days I don't have any abnormal movements at all, and on others I have only tolerable ones. I have been on cloud nine now for a couple of weeks, and it looks like I'm here to stay.

I have noticed that as I become more active and expend more muscle effort that the medicine wears off sooner in the evenings. The Movement Disorder doctor said to call him back in two weeks, and he would discuss raising the daytime dose maybe a half pill at that time. Sounds good to me. He just doesn't want me to zombie out on the Primidone, and I don't want that, either. He mentioned physical therapy to help with the slow walking, but that just does not seem necessary to me. I know how to be safe, and as I feel better I am naturally increasing my physical activity. I'm so used to listening to what my body is telling me that I can judge pretty well when it's time to quit.

My house certainly appreciates the extra attention I have been able to give it lately! There's plenty more to do, though. I have about two years of clutter to wade through. When you feel as bad as I have and as unsteady as I have it's just easier and safer to ignore a lot. Hubby has kept us in good meals and clean clothes, but the "stuff" has piled up.

We celebrated our 44th Wedding Anniversary yesterday. I wrote a long post about it on our Yesterday's Memories blog, so I won't repeat that here. The fantastic thing is that even though I was exhausted at night from all we did during the day the last two days, I feel fine today. My muscles are definitely adjusting to more activity.

So I leave this post with a positive outlook and a heart full of thanksgiving!! Whooopppieeeeeeeeee!!!

Primidone is HELPING!!

I've been trying to get to this post for several days now, and other things just kept getting in the way. Also, it looks like I have good news, and I didn't want to celebrate too soon.

I finally got in touch with Dr. Watts' UAB Neurology team, and he sent in a prescription for Primidone on Friday a week ago. I took my first dose Friday night, and was pretty well looped all day Saturday, and almost as drugged feeling all day Sunday. But I was NOT jerking, and my hand was still! My walking was very odd, like I was on a boat or a dock. When I stood still I kind of wobbled, instead of shaking, as if it were slowing the speed of the movements down and increasing the amplitude, if that makes any sense. That lasted for several days, but then by about Wednesday I was only noticing the good effects. As long as the dose was in me, I did not shake, wobble, or tremor at all. Ignoring the slow walking, I was back to NORMAL! Even my handwriting improved. I was not depressed, but trying not to celebrate too soon, because the next step was to add a morning dose, and I wasn't sure what was going to happen then.

I started taking a second dose in the morning as well on Monday. I do get a little woozy feeling for just a little while about an hour or two after I take it, but other than that, it seems to be helping a lot. I have a slight mouth twitch today, the third day I have had two doses, which I did not have Monday or Tuesday. But that is the only symptom other than the slow walking that I have! I do have to be more careful with steps - it's like I can't tell where my feet are.

I am not depressed at all with the Primidone, the way I was with the Clonazepam, and I am very hopeful that this medicine will work for me. I am still doing research on this medicine, but its brand name is Mysoline, and its primary use is in controlling seizures. They assured me that there were no signs of seizures from my tests, so this is what they call an off label use of the drug.

This medicine has a very long half life, and that means there is still plenty of the drug in my system when it is time to take the next dose. Actually, when I was taking just the one pill, I took it at 7:00PM and it did not completely wear off until four or five o'clock the next afternoon. I am also on the lowest dose, so there is room to go if I get used to the medicine and need to up the dosage.

Did you see me doing the happy dance????

I am so thankful to God for his tender mercies!!!!!!!!!!

Had a New EEG Test Yesterday

I had my second EEG test yesterday, but my reactions to it were considerably different from the one I had two years ago. Back then, my Neurologist was trying to decide if I had Parkinson's or not. My only symptom at that time was a very labored, slow walk, that he called Bradykinesia. I did not have any problems with the EEG test at all.

Things have changed a good bit since then. Now I have lots of tremors, jerks, and facial tics, that only get worse if I am in a stressful situation, or cannot get my mind "somewhere else". I have discovered that when I am deeply concentrating on something, such as writing here on the computer, that the movements are quieted down considerably.

But put me in a situation that is the least stressful, or in one where I am just sitting with nothing actively going on, and I turn into the hurky jerky girl. Church is the usual place that happens. The only way to stop it that I have found is to go into a meditative state, finding some minute crack or spot on the wall to give my total attention to. It spaces me out, I don't hear the sermon, but at least I am not bothering all the people who sit behind us.

And now I know that it happens during EEG tests, too. With nothing to occupy my concentration, following her directions to do fast open mouth breathing for 3 minutes to make me hyperventilate, and some very uncomfortable series of strobe lights that made me feel even more stressed, there just wasn't any way to stop the jerks. The harder I tried to be still, as she had asked, the more I moved. She finally gave up and said at least it would let the doctors see what my brain was doing while my body was doing its own thing. She did tell me to open my mouth and stop pressing my lips together, so my mouth trembled and pulled to the left the whole time, too.

It took 45 minutes to complete the test, and I was exhausted the rest of the day.

The funny part was my hair!! They do not use the scull cap method, so each of these electrodes was stuck to my scalp with something like KY jelly. And there were lots of electrodes - maybe in the 20's? When she was through and told me to look in the mirror, I looked like something from a Monty Python movie. I smoothed my hair down as best I could, but would have loved to have walked out just as I was, so hubby could get a kick out of it. If he had been the only one in the waiting room I would have, but it was a very busy place.

We were set to drive some distance to a family funeral after the test, so I had anticipated the hair goo and planned to stop at any franchise hair salon along the way and get my hair washed. So that was easily enough taken care of. I am glad I knew to expect that, as it could have been a real problem if we had been running short on time. I didn't appreciate having to pay $12 just to get it washed and blown dry with no styling, but there wasn't anything else to do. I had also brought a complete change of clothes and shoes, so I would not have to take the test in good clothes.

We did get into a situation of some very expensive parking at UAB, though, that just added to the very expensive day. We parked in the closest parking deck to the Sparks Clinic at UAB, but they would not validate his ticket, since we had not used the "right" deck. Of course, they had not told me that I should park in any particular one when they called to tell me the appointment time. So, instead of costing $4.50 to park, it cost us $15.00!!! We were not at all happy about that!! UAB will be hearing from me about that today!!

When we did get to Cleveland, the little town in north Alabama where the funeral was going to be, we ate at a very nice looking local restaurant. Not surprisingly, considering the way the rest of the day had been, their prices were high. So, we took the lunch special of the day. The vegetables were great, but the meat was lousy. The waitress seemed genuinely shocked when hubby complained about it.

I really was worn out by the time the graveside funeral was over, so we begged off on eating at the church with the family and headed straight home. This was my sister in law's side of the family, so I really didn't know that many people there anyway, and I am not comfortable in unfamiliar social situations. I have always been that way, but it's gotten worse now that I jerk and twitch so much.

So we had a full day, one that I am glad to have over with. I have an appointment with Dr. Watt's team in May, with an MRI to be schedules before then, so I will have to wait that long to find out the results of the EEG. Should be very revealing, since I displayed the full range of all my jerks, tics, smirks, and shakes while the brain's electrical activity was being graphed.

I am optimistic that all these tests are going to show more than they did two years ago, and that they will be able to decide what is wrong with me with more certainty. Of course, I know there is no such thing medically in life as a certainty, but I can rely on God to get me through it all. Patience, Rosemary, Patience.

I Have Been to THE Appointment

Well, we went Thursday to see Dr. Watts, the head of Neurology at the University of Alabama in Birmingham, who has a great reputation as a Movement Disorder Specialist.

We were both very impressed with how personable he is. One of the other doctors on his staff did all of the preliminary questioning and testing. He was very easy to be with, too. Most of the tests were ones I have been asked to do many times in the last couple of years. A few were different. They both had me make big smiles with my teeth showing several times, which is not something I remember being asked to do by anyone else, and Dr. Watts had me repeat a few of the tests the assistant had already done.

They also gave me the impression that my family history of neurological problems is an important clue - mother with Senile Parkinson's or Alzheimer's - uncle with ALS - aunt with depression, drug addiction, alcoholism - grandfather was senile, possibly Alzheimer's? Until they asked lots of probing questions I had never connected my Grandfather's behavior and my Aunt's behavior as being pertinent. That's why doctors ask things over and over, isn't it.

Of course, they asked me a million questions about what my symptoms were like, and when and how they started, many questions asked several times. Some I could answer, and some I really couldn't. He was very interested in knowing about anti-depression and tranquilizer drugs I have taken in the past. I have been on several for short periods of time because of the stress of caring for our parents and our daughters, but I couldn't tell him much about which ones I have taken. I should be able to get that information from my Primary and from our Pharmacist, plus I rounded up a bunch of prescription bottles of them that I had kept - just in case.

Dr. Watts sat down right in front of me, looked me in the eye, smiled, and talked with me. I had no sense of him being in a hurry to move on to the next patient. That is so rare in doctors these days, and certainly not what I expected out of such a highly renowned specialist.

OK, so now to what happened. I put on quite a show of jerks, tremors, and facial tics the whole time, partly because I was so nervous about what they would find or not find. There is a big part of my mind that is just sure this has all been a psychological problem, but at least he never said that. At least not yet.

I gave a pint of blood in the lab (OK, so I'm exaggerating - but it was maybe 8 vials full), looking for some clue as to what is going on. He talked to me about the possibility of some kind of antibody/autoimmune problem where my own body is causing the problems. He also seemed to think it might be symptoms caused from one of the medicines I have taken in the past.

He has also ordered an MRI at UAB. He says their MRI equipment is different from others I have been in, in that it is more powerful and may see something that the others did not. Plus, it's been 2 years since I had a brain MRI, and whatever is going on might show up now that hadn't progressed enough to show back then. They will call me with that appointment, so I don't know when that will be.

He talked with his assistant, Dr. D, about lots of things it might be, with all kinds of medical jargon. Dr. D was jotting down notes the whole time and seemed to be making a list of possible diagnoses as they discussed my symptoms. Every once in awhile Dr. Watts would ask me to do something or ask more questions. It was exactly like watching a real live "HOUSE" team in action. When he was through talking back and forth with Dr. D, Dr. Watts gave us a layman's explanation of some of the possibilities. I am not going to list them, since obviously they can't all be it, and maybe even none of them are "it". I did come home and get busy Googling every term I could remember hearing them discussing. You knew I would do that, didn't you. LOL!

He did put me on a titrating dose schedule of Clonazepam, to see if that would calm down the jerks and tics. He said I would be sleepy with it at first, but that this would wear off as my body adjusted to it. I am to take 1/2 tablet at night for a week, then morning and night, and work up to 1 full and 2 halves a day. I have an appointment to see someone else in the practice in May to go over the findings. He said that Dr. D and Dr. Watts would be in on the conference with us at that time.

At this point about all I do know is that it is looking less and less likely that I have Parkinson's, but that I do have some type of Movement Disorder as yet to be named.

We've not told family or friends about all this yet. They know I had the appointment but not why I had it. We decided there was no point in making anyone else worry about all this. We will wait until we actually know something to tell them. I can write it all here, which helps me process it all, because nobody I know personally reads this blog.

Week One of my Experiment

OK folks, I've been off of all my Parkinson's meds for exactly a week now. I am definitely having more facial tics, but not enough to be the sole reason that I would go back on the meds. Walking is perhaps a little slower and more labored, but nothing like it was back when I was originally diagnosed. So, it remains to be seen just how much this changes this next week. My hand and legs tremors are more pronounced, but again not to a point that I feel compelled to go back on the meds.

And why, you may ask, am I doing this to myself? I am a scientist by nature, with a lifetime of dealing with challenges by using the scientific method. That means isolating the cause and effect relationship by changing only one thing at a time, and using a control as a comparison point. Obviously I can't do this experiment with all the steps in place, but I can try.

It would be so much easier if I had some way to accurately quantify the amount of Bradykinesia (slow movement), tics (involuntary facial muscle twitches), and tremors I have, with their locations, but this is all, by its very nature, subjective.

I'll continue with my experiment on me for a while longer, but I will try to live each day to the fullest, too, and not make this diagnosis all I am about.

So today we went on our Date Day as usual, and I had a wonderful time with my hubby. We just enjoy being in each other's company. I know we are in the house together for days at a time, but he's doing his thing and I'm doing mine. On Fridays, we spend the day together - really together.

Went Off PD Meds Temporarily

I had my last PD medicine around 3:00PM Friday, so I have been without now for about 48 hours. I don't know how much of those meds are still in my system, but I suspect there's not much left.

So, how am I doing? Well, my right foot particularly, and the left to some extent, are shaking some, particularly when I stand in one place for more than just a few seconds. The wobbling foot and knee make my whole body rock rhythmically. It's nowhere near as bad as it looked in Dr. S's office Wednesday, but I was very nervous then, so the exaggerated gait was not overly surprising.

My right hand takes a notion to tremble off and on all day long, but I can usually stop it temporarily by thinking about it. Usually, I just start to jerk somewhere else, when I get one tremor stopped by relaxing and concentrating on just that one area. The facial and tongue tics seem to be worse, too, with me off the PD meds. Generally, I see an increase in jerkiness that moves from place to place as I consciously try to stop it elsewhere.

We haven't told anyone in the family about this possible change in diagnosis, and don't intend to, until it has been confirmed, and hopefully, we have a name for what is wrong with me.

I am going back on my Zelepar and Requip at 3:00PM today, and will stay one them at least until all the holidays are over with, and I am dismissed from PT. I probably will try going without again in February, just to see how I am doing then.

I wrote once before that having a neurological disease is like being in a clinical trial of ONE. It becomes very difficult to manage all the possible variables, and come to any kind of conclusion about the level of disability and what improves or aggravates the symptoms.

This is a Hard Post to Write

I saw my Neurologist yesterday, and it turns out I did have good reason to be apprehensive about the appointment.

First of all, he agreed that I did not have any business having the epidurals on my cervical vertebrae. So, I called my Orthopedist to let them know that they could schedule the Physical Therapy, but not the epidurals. They called back later, and have already faxed the prescription to the PT I used last time, which is close to home. So, hopefully, I will be getting some relief from the neck pain and stiffness soon. Holidays, of course, will be in the way of a regular schedule, so who knows when I will actually start the sessions. It could easily be the beginning of next year.

He also took me off of the Levadopa/Carbidopa plus Lodosyn meds that the ER doc had added to my treatment, since it didn't seem to be helping much at all. Taking too much of these meds can cause dyskinesia, which is involuntary movements. That may be why I had such an odd tremor develop of late, plus all the facial and tongue tics I have been experiencing.

But the news from the exam that has me so upset right now is that he is no longer sure I have Parkinson's. He watched me walk, and I was so nervous by then that he got to see me at my worst. Both legs bobbing up and down like I was trying to walk across the floor of one of those carnival blow up bounce machines, and having to hold out my arms to the sides to keep my balance. Turning around and coming back towards him was just as bad. He had me take off my socks and shoes, and he did all the usual hitting with the hammer. He scraped the bottom of each foot, and also suddenly pushed both feet straight up several times, in a slapping kind of motion.

I have had the foot scrape thing done many times before, and I know what that was testing me for - the Babinski effect. That's a test I failed some years ago when I was seeing a different Neurologist for migraine headaches. As far as I know I have not failed it since then. It has to do with the way your toes curl or straighten out when a hard object is scraped from the heel towards the toes. The normal reflex is to curl the toes inward. If the toes spread out, with the big toe stretching upward, it's a sign of a lower extremity nerve problem. I don't know if I passed it this time or not. He didn't say, and I was too upset to ask. I have tried to look up what the sudden slapping of my feet upward meant, as I have never had that done to me before, but I haven't been able to come up with the right search terms yet to find out what that was all about. He did move my arms around, while I kept them relaxed, and said he did not feel any cog wheeling. That's something he would expect to find if I had Parkinson's, and he has said in the past that he did feel it. It has something to do with the tremors, but that's about all I know about cog wheeling.

They have made an appointment for me with the Chair of the Neurology Department at the University of Alabama in Birmingham. He is the Movement Disorder Specialist in this area, and is supposed to be my best chance of finding out what is wrong with me. Parkinson's effects people in so many different ways, it may yet turn out to be the PD that my Neuro had initially diagnosed.

But for now, he has listed my diagnosis as the Peripheral Neuropathy plus Gait Debility. I'm back to that "not knowing" stage, and it is extremely upsetting for me, and for my dear sweet hubby. Of course, as you might expect with the chair of the department, I can't get an appointment until the end of April. That's going to be a long, long wait that is not going to be easy.

I felt such relief when my Neuro put a name to what was happening to me - even if it was that I had Parkinson's. Now I am in limbo again, and I hate it.

Hubby has asked that I stop reading and researching about Parkinson's for awhile, just to be sure that I have not been subconsciously absorbing the symptoms that I was reading about. That's a fair request, so I have said a temporary goodbye to my Parkie friends on PatientsLikeMe, and will not be doing any PD research for awhile. I am going to continue to try to find out more about Peripheral Neuropathy, though, because there is no doubt that I have that. Unlike Parkinson's, there are definitive tests for PN, which I most definitely have.

I don't know how to adequately explain how I am feeling about all this right now. It's almost as if I found out I was adopted, or something like that. It's like my identity has been ripped to shreds, if that makes sense. I have developed some really close friendships with some wonderful PWP over the last year. Now, with one sentence, my Neuro has put the nature of that relationship in limbo.

This NOT KNOWING stage I am in again is very hard to deal with. I am vacillating between being scared of something worse than Parkinson's, and being relieved that it could be something less progressive in nature than PD.

God is forever trying to teach me patience, and reliance on Him, rather than my own abilities. Looks like He is working on that big time right now. We haven't actually said anything out loud, but I think hubby and I are going to keep this turn of events to ourselves for now. I can't see any good reason to add this uncertainty to our children's lives. They have enough to worry about on their own. So, I will pour out my feelings here on my blog, since no one who knows me personally ever reads it.

Neck Pain and Tremors Causing Problems

I'm having two main problems from the Parkinson's right now - my very stiff and painful neck, and the much increased tremors, particularly in my right foot.

I'm sleeping with a very soft neck pillow, the kind that look like a C, and I keep it behind my neck while I sit at the computer, too. That helps me get to sleep and cuts down on the pain of just holding my head up. As the day goes on, the pain is getting worse and worse.

I am waiting to hear from my Orthopedist now about a standing MRI appointment. Hubby has Jury Duty next week, so that means I will have to wait longer to get it done. Can't be helped, but it's frustrating. He had to ask for a deferral back when we were taking care of Daddy, so he can't very well ask for another one because he is taking care of me. There is absolutely no way I could drive myself to the big city, as long as it's been since I've driven at all, even though I am no longer having the sudden sleep attacks. Maybe, if he is lucky, he won't have to serve for long, and I can get it done toward the end of this week. I sure hope so. The Methacarbamol and Mobic aren't helping enough to warrant taking the pills, so I quit taking them.

I've tried to continue with as much exercise as possible, but DH hurt his back again several weeks ago, and his sciatic nerve is acting up. He hasn't felt like going to the track, so I haven't been getting enough exercise lately. I am still working out in the yard the best I can, but it makes my neck hurt worse.

I'm also having considerably more problems due to tremors. For the first year of PD I didn't have any tremors at all. I was beginning to have small ones on Sundays mostly, while we were listening to the sermon. I finally decided that it was the uncomfortable pews, being too still too long, and being cold, all working together to stress my muscles. But that was a very mild nuisance tremor.

Since I had the steroid interaction that sent me to the ER, however, the tremor in my right leg and foot have been so strong that it makes walking and standing much more difficult. It still comes and goes, but when I get the least bit tired, as I do when I walk very much, that leg starts dancing a jig all on its own. I am having more problems with balance because of it, and I am beginning to experience what is called freezing. When I stand up, I have to kind of wait before I can get that pesky right foot to make up its mind to move where I want it to, it's so busy moving where it wants to.

One thing's for sure, I look like I have Parkinson's now, where I didn't until recently. Even my lips, tongue, and eyebrows are beginning to quiver. We had our portraits made the other day to give to our children for Christmas, and it was all I could do to hold the poses long enough to get a good picture. My face behaved, but not my leg. It took every bit of will power I had to make my leg be still. If I hold my breath and really concentrate, I can stop the tremors momentarily, thank goodness. I had to do that to get the X-rays on my neck done a couple of weeks ago, too.

So, things have been a little difficult lately, but I am still managing OK. I've been listing a lot on eBay, and we have had some good sales there. I've also been concentrating on trying to help as many people as I can on my Plush Memories blog. I've managed to find several lost lovies for people, and some of my blog readers there have found a few more. And, there have been a few times that we had the lovey they were looking for in stock, so I've made a few sales, and made some folks very happy all at the same time. That's what makes selling the plush toys so much fun.

We are still going to Estate Sales, but this time of year there usually aren't as many on a given Friday. That's OK, because I really can't manage more than a few anyway, as I tire out and hurt too much to go to very many. So, we have been doing a little bit of Estate Sale hunting and a little bit of Christmas shopping on Fridays. The only thing we absolutely have to go to stores for is all the Stocking Stuffer odds and ends that we give our children and grandchildren every year. And this year, we have been buying things for their stockings all year long, which is a blessing.

Thank goodness for Internet shopping! I've been buying most of our gifts online for years, but this year it has been a blessing. The black pair of Skechers came the other day, and I wore them to get our portraits made. They feel wonderful, and they do improve may stability much more than the Sunday shoes I have been wearing. Our daughters wear the same size shoes I do, so looks like they will be getting some hand me down shoes.

So, I keep going, making changes as I must.

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.

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!!

Insomnia Is on the Prowl AGAIN

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

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

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

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

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

Standing MRI & A New Friend

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

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

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

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

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

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

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

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

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

Quadriceps Are Giving Me Fits

Well, I think the Physical Therapist came close to killing me last Thursday LOL. The tops of my thighs, where the quadriceps muscles are, were so sore Friday through Sunday that it was all I could do to get in and out of the car or sit down or get up from even the handicap toilet. I spent the whole time on strong pain pills, and much of it with the hot pad in use.

So, when I went for therapy yesterday I was very quick to let her know that whatever she did Thursday was too much. She cut way back and basically just did a few warm ups and then put me on the ultrasound, electrical stimulation, and moist heat for a long time. She doesn't want me to walk at the track but every other day for one lap, avoiding the days when I have therapy. She says as weak as the quadriceps are that she's afraid I will lose my balance or start to fall. Without the quads being strong, she says I'll damage my knee. She was also surprised that I was able to walk even the quarter mile around the track once, even with the cane. She says I'm compensating in some way for the weak quads, which means I have just completely forgotten how to walk normally. I really try to do it "right," but I must not be, according to her.

She did say that the other PN patient she has is doing better, and she did give her the URL for this blog. I'm going to be disappointed if she doesn't write, as it will do me good to talk to someone who has a similar problem.

I was a good girl this morning, and only did one slow lap with the cane, concentrating on the technique for each step. Then I did my home exercises while DH walked his 2 miles. He lapped me 3 times before I could get around once! ROTFL

I go back to the Orthopedist next week, and I'll decide after I talk to him whether I should try to get an appointment with my Neurologist sooner than scheduled. I suspect he will agree with me on that. He was planning on getting an MRI of my knee once I had the PT, as that's what my insurance required before they would authorize the MRI. I am so thankful that I had this opportunity to go to Physical Therapy. It's a shame that insurance companies are so stingy with authorizing it. I can't get it for chronic conditions, so having Parkinson's Disease or Peripheral Neuropathy wouldn't get me permission. But wrenching my knee did!! Strange twisted logic - it's OK for me to fall because of weak muscles sometime in the future????

The deadline for our BLOG VILLAGE HEALTH Carnival is this Friday, but I haven't decided yet which post to enter from this blog. Too many to choose from, I guess. If you have a post you could enter, I'd appreciate your participation.

Physical Therapy Continues

I am shocked at how weak my right side has become. And a little scared, too, as I can see that I'm going to be in need of care giving a lot sooner than I had imagined, if I cannot regain at least a reasonable amount of my muscle strength. The PT has been very kind this week, and has allowed me to take the time to do the leg exercises on both sides, even though the "prescription" from the doctor only addresses the right knee. Actually, I don't really think the knee is the problem, only the result. The real problem, which is definitely the case on both sides, but more so on the right, is that my hip muscles are extremely compromised. That's causing the unnatural gait and putting the extra strain on the knee. The right one just complained more because of the stress shifting Daddy in the bed caused.

My shoulder is definitely improving, so that's something to be pleased with, anyway. She didn't even work on it yesterday, except for the electrical stimulation and moist heat therapy at the end of the session. I spent two hours there yesterday, just working on my legs and hips. Plus, we walked yesterday morning, and I did 3/4 of a mile, with the cane.

She wants me to cut back on the walking every few days to one or two laps to give my muscles a chance to recuperate, so I'll just sit and watch DH finish his laps on those days. She tells me that the Peripheral Neuropathy causes my muscles to fatigue faster than normal and bounce back more slowly, so I have to be careful to not overdo each set of exercises and rest longer between them than other people would need to.

We chatted while I worked, and it seems that she has another patient right now with idiopathic PN, too. Idiopathic just means the doctors don't know what's causing it, which is true for me, too. Anyway, I gave her the address for this blog to pass along to her, and I hope she does stop by. I know it helps me to chat with people with similar problems, and it's very hard to find much on the Internet about Peripheral Neuropathy that's not caused by diabetes.

My hip sockets and upper thighs ached the rest of the day yesterday, so I ended up taking a Lortab to get to sleep last night. I do feel better this morning, though, and we won't go to the track today, since it's our Date Day. That will help my muscles rest and rebuild. She wants to see me two times next week, again to allow more time for the muscles to rest before the therapy sessions. Of course, I have my list of home exercises to continue, so I'll still be getting therapy.

Oh, another thing I did yesterday was to stop and buy new bottles of my Centrum Silver and vitamin C+D. I found out at the eye doctor's office the other day that not everyone can dissolve the wax that's used to turn medicines into pills. That means some people pass the pills straight through their body without even getting any benefit at all. I had heard that before, that sometimes when septic tanks are cleaned out they are full of pills! So,to get maximum benefit, he told me to change to capsules or gels. Centrum doesn't seem to come that way, so I got the chewable ones instead, and I found the C+D in gells. She also said I was not taking enough of the C for my Osteopenia (loss of bone mass that is not as bad as Osteoporosis), so now I'll be taking those twice a day. She warned me not to try to just take one huge dose, though. She says the body can't absorb more than about 500 units at a time.

Sorry to sound so depressing today, but this has really slammed home to me how much function I've already lost, with no way of knowing if I can regain it. I can only do my best to follow the PT's directions and hope for the best.

Peripheral Neuropathy Rears Its Ugly Head

I went to the Physical Therapist this morning for evaluation of my knee and shoulder problems. The news was not good. It seems that I have significant weakness in my right leg and hip muscles, and also in my left hip muscles. My hand strength was markedly less in the right hand than the left, but that didn't surprise me.

She said it was no wonder I was having trouble with my knee, or with walking, as my muscles were so very weak. She does not want me to walk so far at the track, but to concentrate on walking with full use of my hip muscles. I had already realized that I wasn't doing that. When I do take a full stride from the hip I feel like I'm drunk, with a wobbly unsteady sensation. I don't know any other way to describe it, and I look drunk, too. She wants me to use my cane on a regular basis, because she doesn't want me to reinforce my unnatural gait. I'm to see her two more times this week, plus she's given me a set of exercises to do here at home.

She thinks the knee is so irritated because the muscles that should be providing support just aren't doing their job well at all. And she said the same thing about both hips. So, I'm going to be busy trying to build up what I can, before I end up on the floor LOL!!

I also had an ultrasound treatment on my knee and an electrical stimulation treatment on the shoulder and the knee, with moist heat, too. That felt wonderful, and it's supposed to improve and speed up the healing process.

The PT is a very nice lady, and I felt comfortable with her immediately. It's just as well, as it sounds like I'm going to be going there for awhile. Of course, insurance has a lot to do with how many sessions they'll let me have, so I need to learn as much as I can about how to do the exercises at home.

Tremors Galore!!

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

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

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

Zelepar is Working Much Better, Insomnia Is Still a Challenge

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

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

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

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

Tummy Improvement OR Walking Faster?

I've been on the new Zelepar medicine for several days now, and my digestive system is behaving just fine. I don't seem to be getting quite as much help with my gait as I did with the Requip or Sinemet, however, but I'm still on the samples. When I go back to the Neurologist next Friday, it may be that he will order a prescription for a higher dose or more doses, which might make the difference. Anyway, even if the dose stays where it is now, it seems like a reasonable trade off between stomach problems and balance and walking problems. I'd love to walk better, but I can live with it the way it is now, if I have to. It's nice not to spend part of every day miserable, with a hot pad on my tummy!

I said at first the Zelepar didn't taste bitter, however, I'd better amend that evaluation. Yes, it is bitter, but not enough to bother me, anyway. (The trick is to be sure you place it under, not on, the tongue.) It dissolves under my tongue so quickly that it's just a few seconds, and I can swallow it. You're not allowed to drink or eat anything for at least 5 minutes before or after taking it, but my saliva quickly washes the taste away.

We're still staying with my Daddy, which means I spend most of my days and every night in a hot house. We tried to find a compromise temperature for the thermostat, but at 101, he gets too cold, while we're still sweltering. I have noticed that I'm having more trouble with the heat this week, since I've been on the Zelepar, than I was before I started taking it. I'm getting what feels exactly like hot flashes several times a day, and I've been past that stage for some time now. I have read that Parkinson's can mess with the body's regulation of internal temperature, so I guess that's what's happening to me right now. Or is it because of the Zelepar? I really don't know.

I was on Requip before starting the Zelepar. Requip is a dopamine agonist, but Zelepar is an MAO-inhibitor, so they don't attack the PD symptoms the same way. There's big news in the Birmingham News today that a doctor at UAB is close to getting FDA approval for a patch version of a dopamine agonist. That will be good news for me, as the Requip did a better job of improving my balance and walking than it looks like the MAO-inhibitors are going to. I'm all for any PD med that I don't have to swallow!! So this is something else for me to be hopeful about.

It's great to see that there is good news on the horizon for the large number of people who really suffer with this disease. My own symptoms and discomfort level are so mild compared to people who have had Parkinson's for years. I pray that all this new research may bring them relief in the near future, instead of years from now.