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.

Tests Are Over for Now, Thank Goodness!

I'm glad to have those tests behind me, as they are anything but comfortable! I had forgotten that the Velocity Test hurt when the electric current went through the sticky pads, but it does. I was right, though, that the discomfort from both tests is basically gone as soon as the test is over. I had some residual crampy feeling, not really pain, in my back, but it's OK now. Since I have back problems anyway, that probably wouldn't happen to most people.

I would like to have had a video of the testing session, so I could show it to the MDS specialist I will be seeing in April. Talk about shaking and jerking, plus a face full of tics and twisted expressions! Between the pain, and the stress, it's no wonder I put on quite a show.

They will add the results to the information they will send to Dr. Watts. I will call his office tomorrow to take care of the change to Medicare as my primary insurance, and I thought I'd talk to his nurse, PA, or assistant - whoever - and see if there are any other tests he would want done in advance of my appointment.

I'm glad to have it over with, looking forward to finding out what it means, and waiting as patiently as I can for the appointment.

Re-Testing Peripheral Neuropathy Monday

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

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

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

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

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

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

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

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

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

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

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

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

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

Still Doing Without Parkinson's Meds

I've been off all PD meds now since Jan. 25, and not doing a whole lot differently now than I was when I was on the meds. That has several possible meanings, so it really doesn't tell me much.

It could mean that I don't have PD.
It could mean that I have PD, and I'm one of the people who is not helped by the usual or any meds.
It could mean that these symptoms are related to lumbar and cervical disk problems I have.
It could mean that it's all in my head - that it's psychosomatic.
It could mean I do have some kind of neurological problem that has not been determined at this point.
It could be that these symptoms are from the Peripheral Neuropathy that I definitely have.

Whatever it means, I'm certainly not able to decide, so I continue to count the days until I see the MDS in April.

I have had several "spells" lately when I felt particularly stressed emotionally. Trying to get our taxes done, and dealing with my insurance company about the TAP claim both increased my symptoms.

But the worst was last Sunday during Sunday School. Our teacher was not there, but had left an outline of what she wanted us to discuss. We've done this before, as we are quite capable of carrying on a discussion on our own. For some reason, though, we weren't getting anywhere with the discussion, so they asked me to lead it. These are people I'm used to being around, I taught Sunday School for a long time before I had to stay home with parents, and I taught school for 29 years. Leading it meant moving from the back row I normally sit on, and sitting in front of everyone, instead. Trying to lead the discussion up front brought on the facial tics big time, and I was shaking much more than usual. The worse it got, the more self conscious I became of them seeing me jerk and shake, and that made it just that much worse. I finally just told them I needed to stop, because it was making me too nervous. Time was almost up, anyway, so that was the end of class.

It took me a long time to relax after that, and just thinking about it now is bringing back some of the stress.

I really don't think my symptoms are psychosomatic, but there's no doubt that stress makes them worse. That's why I'm usually at my worst at the Neurologist's office.

I've just bought a new laptop computer, and this one has the built in camera. I took a notion the other day to video myself while I worked at the computer. It was a very revealing look at my facial tics, even when I am busy and not particularly aware of them. Maybe I should save some videos and take my computer with me to the MDS appointment. Well, probably not, but I may keep some for myself, anyway.

Hubby and I talked about how I've been doing lately, and he is in agreement that I really don't seem much different off of the meds than I was when I was on them.

I continue to use the TENS device for my neck pain, as well as the Cervical Collar that I pump up, so it works like traction. I'm also doing the series of neck exercises daily, but we haven't started back to walking yet. Hubby is having a bad flareup with his back, and he's just not up to it right now. So, I piddle with the compost heap a couple of hours a week, and I am still working hard to get all our toys online in our shop catalog. That involves a good bit of shifting and lifting of tubs of toys, so I am getting some exercise each day.

All in all, I'd say my quality of life is better than a few months ago, at least, and for that I am grateful.

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.

Life Goes ON

My Physical Therapy office called yesterday, and the appointment is set for Jan.2, so that's taken care of. I have been scouring the Internet, looking for some indication of the meaning of some of the neurological tests my Neuro did on me in his office the other day, but still not having any luck. I think I will end up calling his nurse, and see if she can help me understand what happened. We were both just in shock, I think, in his office, and I didn't ask enough questions. Now I could kick myself for not asking dozens!!

Also, I am wondering if I should try to wean myself off of the meds he left me on, before I see the MDS in April. And I also need to ask if there are any tests that my Neuro should be scheduling before then, too. When I first went to Dr. S, he was less than pleased to see that the Peripheral Neuropathy tests I had already had were only on my legs. They did not test my arms. So it would seem logical to me to have that workup done again, but more thoroughly, sometime close to my appointment in April. Otherwise, I can just see it now. I'll go in and talk to this fellow, walk, and get poked and prodded, and then he will order a bunch of tests, and I won't see him again for another 4 months. This NOT KNOWING could last the better part of a year, if that's the way it plays out.

I have been blessed with so many wonderful net friends showing their support and concern over all these mixed up feelings I am having. It's humbling to know that all of you are out there, praying for me. With all that love coming my way, and God's help, I am already beginning to ease out of the horrible funk this news put me in. I can choose to believe I have something worse than PD, or not. I choose NOT, doggonit!!

So, another Friday has rolled around. It feels a little different, with this uncertainty surrounding us, but we will find something enjoyable to do today, and life will go on. Our Christmas stocking gift hunt is finally ended, and it's time to wrap the presents for the grandkids, and our children, too. I haven't looked yet to see if there are any Estate Sales today, but I kind of doubt it. Who knows, we might go see another movie.

We enjoyed "Perfect Holiday" last week, as a light, entertaining, feel good movie, regardless of what the critics had to say about it. And we'll probably end up seeing "Legion" today, even though the critics have panned it, too. Not every movie has to be Academy Award quality to be enjoyed, right? Although I am a little surprised that Will Smith allowed himself to be in a movie that was less than box office hit quality. From what I've read, it's the Zombies that are so poorly done, not his performance. And there are some flaws with the premise of the story, too, which is what makes Science Fiction work as a genre. Once you have decided to "believe" in a certain situation, the rest of the story must stay true to that premise. From what the critics say, this one does not, and that's a pity. But, flaws and all, I am sure I will enjoy it, as I really like his acting, and I am a Science Fiction buff from way back.

So our lives move along, and I will try to let go of these nagging thoughts, and look on the bright side of it all. I look forward to spending time with our family on Christmas Eve and Christmas Day, and not think beyond that for now. Here's wishing you all a very happy Christmas time with your families, too!

6 Doctor Visits in 6 Days!!

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

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

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

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

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

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

Time I Tried to Catch Up

I've ended up doing the very thing I really didn't want to do, and that's not keep this blog as a daily journal. It's just that so much has been happening lately that I just had to put blogging way down on my priority list.

So.... here goes .........

Since I wrote last, Daddy has been much worse. There was a large bulge in his upper right colon area that no amount of enemas, suppositories, stool softeners, or laxatives seemed to be effecting at all. We are fortunate enough to live in the country, where doctors still treat their patients as individuals. So Friday, a week ago, Daddy's primary care physician came out to the house after work! After feeling around on the area, he really didn't think it was a bowel impaction, but there was no way for him to be sure. He suggested we put Daddy in the hospital for some tests. I spent the weekend deeply upset by that prospect, not knowing what was best for him. Dr. Mc understood that we had no intention of any type of surgery, if they did find anything other than fecal matter. On top of the rest of my misery over making this decision, he would be in the hospital I swore I would never take anyone to ever again.

I finally decided that I would be in worse shape emotionally if I didn't at least give it a try, so I was in the hospital with Daddy for several days this last week. We came home Thursday, after the tests they did showed conclusively that it was not fecal matter. We stopped them from running any more tests, so it was left as a diagnosis of a soft tissue mass. I don't need to know what it is ... only that I can give him pain medicine, because it won't be causing more constipation on a blocked bowel.

We also brought home new pressure sores, because it took lots of complaining to get them to change him and turn him. And, when they did handle him, most of them were not gentle with his skin. Did I say I hate that hospital??

One of the two really caring PCA's gave me four hospital gowns to take home, which is a big help at this point.

Yesterday evening, when DH and I started to turn Daddy to change his Depends, he threw up all over the place. Considering the amount of food and liquid Frances had gotten in him, everything must have been sitting in his stomach all day!! He was obviously in pain, so I called the Hospice nurse, who advised that I not try to give him his night medicines or move him for at least an hour. We cleaned him up the best we could and managed to get towels between his skin and the sheets, etc., that were soaked.

After an hour, we changed everything out to clean, but it was obvious we were really hurting him with every turn. After reporting in to the nurse, she said not to feed him or give him any medicine, but to call again if he didn't go to sleep comfortably on his own.

I called her back at 2:00AM, as things were worse again, and she told me to give him the morphine that absorbs through his mouth. She arrived about an hour later, as we are on the outside reach of this Hospice territory. He was running a temp, and his blood pressure was very high. We managed to get the blood pressure med in him that he had missed at supper time, plus a sublingual tablet for fever. I'm not sure what that was.

She then suggested I try to get some sleep, and she sat up with him for three hours, while I napped!! There's a lot about this hospice I don't like, but she moved them up a few notches in my estimation, in the wee hours of this morning!!!!!

Part of the reason I haven't been blogging is that my right arm and hand have been in considerable pain and swelling since we went to the hospital. Thinking it would be enough, I only took my cane. By the time I had walked all over the place as they took Daddy for tests, I had put too much pressure on my arm, and I paid the price for not remembering to swap to the left hand often. Thank goodness, I had thought to pack my hot pad. So I spent his hospital time doping myself up with as much pain medicine as I dared to, and still staying awake enough to be harassing them to do their job. I just couldn't manage the computer very well at all!! It looks like I'm going to have to learn how to use a mouse left handed ... I'm pitifully uncoordinated as a lefty ... far more so now with the PD.

I'm also fortunate that we had bought a really nice wheel walker with the seat in it some time ago at an Estate Sale. DH was very depressed when we bought it, but it was a blessing when my arm hurt so much.

I can't thank you all enough for your prayers and kind thoughts while all this was going on. I knew you were worried about my sudden disappearance, and appreciate the emails I received. Just know that you have been supporting me, even though you didn't know what was going on.

A Clinical Trial of One??

In a real Clinical Trial, doctors use a very large number of people, usually, but not always, divided into two groups. One group gets the medicine being tested, and the other group gets fake medicine, called a placebo. At the end of the trial, if the people getting the real medicine have improved considerably more than the group getting the placebo, the medicine is assumed to be the cause of the improvement. That's a good thing!

They use such large numbers of people to conduct these trials, because there are always going to be unforeseen situations that influence the effectiveness of the medicine for some people. Maybe a few of the subjects have an undiagnosed disease that makes even the best of medicines not work. Or maybe some of them are under a lot of stress that ruins their results.

When you see a new medicine being talked about with glowing praise of its effectiveness, you have to be very cautious about getting all excited about it. I have seen reports like that where the trial only had 16 people in it. That only gives doctors a hint that a certain medicine might be helpful. It's just not enough people to tell you much.

That's the problem with trying to find the right medicine for me, or any other PWP. We are, in a very real sense, our own Clinical Trial. The last time I was on Requip, I was terribly bloated, with horrible stomach cramps and gas. So, the Neurologist took me off of it, and he put me on Zelepar. That medicine dissolved under the tongue, so it doesn't bother the digestive system. My stomach improved tremendously. The question is, was that because of the Zelepar, or was it because, that same week, my Gastroenterologist changed the prescriptions I was taking for my stomach? Also, my symptoms were not alleviated as well when I was on the Zelepar --- BUT I had strep throat most of the time I was trying it, without knowing I was that sick.

There's no way to be sure, is there, with more than one medicine being changed at the same time, and with me being sick, too? I talked with my Neurologist yesterday about this, and the fact that I had gone back to 1 Requip pill a day for several days, because I ran out of the Zelepar samples before my appointment. Even though I had been on the Requip for several days, my stomach was doing just fine.

So, Dr. S. has prescribed another month of Zelepar, to give it a fair trial at helping my PD symptoms. If I am still not getting as good a results with it as I was the Requip, I am to add the old dosage of 3 times a day of Requip to the Zelepar, which I take 2 times a day. I don't see Dr. S. for 6 more weeks, to try to give me a chance to tell what is going to work best for me.

Parkinson's Disease is different from many diseases, where there is some MRI or blood test that will tell the doctor what is helping, and what is not. With PD, it really is up to me. I have to be the judge for myself if the Neurologist has prescribed the right medicine and the right dosage. Then he bases my prescriptions on his vast experience with many other PWP he has treated.

But it still boils down to a Clinical Trial of one - ME!

If I Could Dance ... I Would!!!

I went to the Neurologist today, and I feel like I had a very productive visit this time. He is agreeing with the diagnosis of Peripheral Neuropathy, but he thinks something else is going on at the same time, as not all my symptoms seem to fit that diagnosis. First of all, the heavy metals test came back negative, so we don't have to worry about the EPA site, at least. All the other blood tests came back OK, too. One test is having to be done again, as the lab goofed on that one.

Anyway, he's given me a prescription for Sinemet to take for three weeks and then see him again to see if it makes a difference in my walking. This is a Parkinson's medicine, which is what I've thought he was thinking all along, since Mama had Parkinson's. She didn't have tremors, and I've only had some shakiness when I was weakened by the colitis or really tired.

I finally feel like I'm getting somewhere!!! At least in 3 weeks we'll know if it's Parkinson's or something similar, and I really think it is. I'm looking forward to being able to walk better. I know I shouldn't be getting my hopes up so, but right now I'm almost ecstatic!

Looking Forward to Doctor's Appt. Tomorrow!

I've been able to stay busy this last week, and the time has really flown by, thank goodness. I've had plenty of excercise, so the weakness in my legs is definitely not from lack of use from the extended illness I had with the colitis attack. And I'm off all the steroid capsules, too, which means I've only got two more pills to go and I'll be off all the colitis meds.

Tomorrow we find out the results of all the lab tests they ran on me this last week. We also find out if I have to have a repeat of the EMG tests, because the last doctor did not test any upper body areas. Since I do get trembly sometimes in my hands, I'm hoping he'll do the test again, even though it's certainly NOT a fun test. I've already told him I'd do it again in a heartbeat if he needs me to. He knows how uncomfortable the test is and is trying to spare me that, if possible, but I want whatever will give the most accurate diagnosis, discomfort or not.

I just hope tomorrow's appointment doesn't end up leaving me feeling disappointed that things are moving too slowly, the way last time's did. I really like this Neurologist, and I have full confidence in his abilities, so I'll just have to put my trust in God that he has led me to the right man.

I had my first experience with someone trying to help me when I didn't need their help tonight. I was getting ready to go down the steps at church, which means DH takes the walker and I hold on to the railing and carefully take one step at a time. One of the church ladies grabbed my free hand to help me, and she really was trying to insist on helping, even though I kept telling her I would be just fine. It surprised me that I found that very irritating. I must remember to ask if I can help someone, instead of assuming they need my help.

Heavy Metals Tests & Access Problems

Yesterday we turned in my 24 hour urine catch to the lab for the test for heavy metals. Since we live within a quarter of a mile of what the EPA called one of the worst toxic waste sites they ever had to clean up, we're very anxious to hear the results on that one. Obviously, there are several metals that could cause the PN, so this is a key test. I started to just let DH take the container back by himself, but it's a good thing I didn't. They had such a hard time drawing blood Thursday that one of the vials had clotted, so they had to draw more blood from me yesterday. That would have been terrible, to go to the doctor next week and not have all the tests completed.

I'm finding the oddest places that I'm having trouble navigating with the walker. The door to the bathroom at the hospital lab was so heavy that I couldn't get it open and get the walker through it, too. DH had to get up and hold the door for me. Then, when I got in the bathroom, there was no hold bar -- in a HOSPITAL bathroom! I couldn't believe it! We got the phone number of the maintenance department from the lab people. That was the only number they could give us, figuring they would know who we would need to contact to complain about the bathroom not being compliant.

We went to an old Wendy's for lunch, and it took 2 people to hold 2 sets of doors open at the same time to get the walker through the vestibule doors, the way they opened on each other. That's crazy!! Nobody in a wheelchair would be able to get in that place alone. They're going to get a call, too. We've been talking to managers for years about maneuverability issues we saw pertaining to wheelchairs, but we've obviously missed some in places we never took my mother. You just don't notice things like that until you are confronted with them yourself.

Diagnosis is Taking Too Loooooong!!!

I went to the Neurologist again yesterday, and was disappointed with the visit, to tell the truth. I know he's a busy man, because we purposefully picked the very best Neurologist we could get. But I feel like he's so busy that this whole process of diagnosing is dragging on interminably, because the appointments are so far apart, and so little seems to be accomplished each time I see him. It's that last part that has me disappointed.

He wanted us to get the full study from the doctor who did the EMG, so he could read through it. If his nurse had called us prior to yesterday's visit, we could already have gotten it, and he could have had that already done. As it is, he still doesn't know if he will want me to undergo that test again, so I'm feeling very frustrated. We went and got the report and brought it straight back to Dr. S's office, and I have another appointment in two weeks.

He did say, after looking at the MRI that we had taken to him of my last lumbar vertebrae series, that he now agrees with the Orthopedic doctor that my Peripheral Neuropathy was not caused by my Degenerative Disk Disease. So, it's not my brain, and it's not my back.

He had a lot of blood tests done, and I have to do a 24 hour urine catch on Sunday/Monday and return the jug to the lab Monday. That's to test for heavy metals, since we do live within a quarter of a mile of an EPA toxic waste site that's cleaned up now, but we lived here many of the years the factory was in operation.

It's looking more and more like he thinks I have Parkinson's, even though I'm not exhibiting a lot of the typical symptoms.

Of course, I'm still holding out that it's just from all the stress I've been under and still am under. I'm writing this post from my 101 year old Daddy's house. He usually stays by himself, and I come in to fix breakfast and supper. Meals on Wheels brings lunch. We call him during the day, and that is usually enough, but he was awfully weak this morning and hurting in his back, so I've stayed with him today, and I'll spend the night here.

This whole business of every step feeling like I was dragging my feet through molasses started sometime last October, but our DD was in the hospital then, and I was staying with her, so I put off doing anything about it until March. The epidurals the Orthopedic Dr. prescribed did a great job of getting rid of the pain, but the walking did not improve. So here I am, and it's September, almost a year later, and I'm still wading through mud with every step. Let's just say my patience is wearing pretty thin.

A Truly Normal Saturday!

For the first time since the end of March, I got out my digital camera and took a series of pictures of an item to put on eBay last night. That's the first time I've touched that camera in all this time. I don't think I could have held it steady much sooner than now, as I was so weakened by my bout of colitis. Anyway, it felt good to actually get a new listing up again, and I plan to get at least one up each day from now on, and hopefully two most days.

My strength has improved some, what with all the exercise I've been doing, but my walking is still very shaky. I have a Neurologist appointment this week, and I'm really looking forward to that. I've been really patient, and I'm praying that this will be the time for all the tests that will help him figure out what's wrong with me.

I am so very thankful to God for my DH, who has been so attentive and so supportive through all these months. I don't know what I would have done without him. I don't know how people, who don't have Jesus to hold onto, make it through the scary times that life can throw their way,either.

Went to Bed Early - Woke Up Early

It's so aggravating when my sleep schedule gets mixed up like this. I made myself stay in bed until 5 by the hardest, but I had the beginnings of a headache by then. I took 2 of the Tylenol arthritis pain meds, so my neck wouldn't bother me all day and got up. Now I'm on the computer and yawning. Go figure.

Anyway, my legs and back were aching some last night from all the walking yesterday, but other than that, I'm OK. I did have a little trouble after the MRI yesterday. I was very wobbly after the test and had to ask for some steadying help to get back to the dressing room. DH knows me well and had a bag of M&M's waiting for me, so I finished the Powerade and ate the peanuts and by then I was OK. We stopped and got one of the new Chick Filet's chocolate shakes on the way home, too. He knows how to pamper me.

I did some research on brain tumors last night. I really haven't allowed myself to think in that direction up until now, but getting the brain scan kind of pushed my thinking that way. Knowing I've been diagnosed with an angioma in the past, plus having the increased cerebral spinal fluid before, makes it much more of a possibility. We won't know anything until maybe Friday, so I'll just stay busy today.

Uncle Bill

I need to remember to tell Dr. S about Uncle Bill, Mama's brother, because he died of Lou Gehrig's Disease. I know that's not what I have, but he still needs to know it. Mama was originally diagnosed with Parkinson's, which I did tell him, but that was later changed to Alzheimer's Disease. Trouble is, she never did have the tremors. Now that I've seen what a real Neurologist does in the way of diagnostic testing, I don't think that first diagnosis of Parkinson's was even valid for Mama. It may well be that I have the same thing she had. That remains to be seen, but it just may be that this is genetic.

MRI Scheduled!

April, from Dr. S's office, called yesterday afternoon, and I'm scheduled for the brain MRI today at 2:30!! I was determined not to spend any time waiting around for HealthSpring to approve the tests, but I sure am glad they did it sooner, rather than later.

I 've had this type of MRI done before. In fact, that's why he wants this one. When I had it done years ago, it was because I was having severe migraine headaches. I had a terrible headache the day of the test, and it was all I could do to keep from throwing up with all that hammering. At least now, with the Topamax, I don't go into the test hurting. That previous MRI showed increased cerebral spinal fluid pressure, with a wide white space between the two halves of the brain. It will be interesting to see what this one shows, because the Topamax is the only thing that's keeping me from having migraines now. I was living off of Goody powders before he put me on those. I'm on the steroids (Entocort) now, too, for the colitis, so that may make a difference, too.

Anyway, this is the MRI where they put your head inside a football helmet thingy, and you have to stay completely still through the whole thing. I don't know if they will be using dye or not. They did last time. I'll have to fill up on fluids today, just in case, so the IV will be easier to get, if they need to.

A Personal Journal

I've been waiting for six weeks to see Dr. S to find out what he thinks is wrong with my legs. I tried to remember everything I could that he might possibly need to know about my past history. I still forgot to tell him about the Bolt Factory and the functional dysphonia diagnosis I had before I quit teaching. I also forgot to tell him that I taught Chemistry for a few years, but I really don't think that has anything to do with it at all. I did give his nurse my notes about that when we took the old back films to them. But I'm still forgetting to tell them about Uncle Bill!!

He did the kinds of hammering around that I expected and said that I definitely had diminished responses in my legs, but the upper body responses seemed normal. He was sorry that the EMG I had already had did not include any tests of the upper body and wants to repeat that test. He watched me walk, asked DH if I were that slow with everything I did, which I'm not. I did tell him I feel the shakes at times with my hands. I definitely have trouble handling pills and money, and my memory is not as good as it used to be, either, but then I'm not as young as I used to be, either.

I told him about the MRI Dr. Stan had done years ago that showed increased CSF pressure and the negative Babinski test, so he wants a repeat of the brain MRI.

He showed us what a Parkinson's walk typically looks like, and that's not what I'm doing. I'm not walking like the typical Peripheral Neuropathy either, so that's the puzzle of it. I told him about my concerns that it might be psychosomatic from worrying about DD so much and being with her through all her PN hospitalizations. He said that would be the diagnosis of last resort, if I understood him correctly.

Anyway, now I'm trying to be patient while HealthSpring takes their beaurocratic time processing the request for a brain MRI and a repeat of the EMG to include the upper body as well. He wants to do a series of blood tests, too, to check for B12 deficiency and toxic metals I'm guessing.

I liked him and I have confidence in him.