GREAT NEWS!!! - My New Diagnosis Is ESSENTIAL MYOCLONUS!!

I finally got to talk to a nurse on Dr. Watt's staff today, and I now have an official diagnosis that I can take to insurance companies. I do not have Parkinson's, nor anything in the Parkinson's Family. I have what is called Essential Myoclonus. It is not a progressive disease, which is the best news of all.

They do not know what causes it, but the Primidone is doing a remarkable job of controlling my movements. So I look forward to continued improvement and taking my life back! I asked if it would be OK to add an extra half tablet in the mornings, because the dose wears off in the afternoons, particularly if I am more physically active or stressed. She gave me the usual precautions about not using it if I became overly drowsy, be careful about driving, etc., but they are leaving the timing and use of the half tablet up to me. I am to start it in the mornings and then move closer to lunch if I want to try it there after a week or so.

I have been telling everyone about how wonderful I have been feeling since I went on the Primidone and how truly blessed by God I feel. I have strong emotional ties to lots of online Parkie friends, and I would only wish that they could have such good news from their doctors very soon. I guess I'm going to have to add another section for research about Myoclonus to my sidebar now, and come up with a better name for this blog. I have been very active in the Parkinson's PatientLikeMe forum, but I imagine I will be spending more time in the Essential Myoclonus section of WeMove.com now.

I lived in their world for almost three years, so I have a perspective into what it is like to have Parkinson's that most people can never have, unless they actually have the disease or are very close to someone with it. That is a valuable perspective that I do not want to squander. I'm not sure how God can use me in regards to this, but I'm sure in His good time it will become apparent.

I have tried to chronicle my journey from the very first days of the initial diagnosis of Parkinson's, through all the struggles I had with my digestive system fighting against the PD meds, to modifying my lifestyle to keep me safe, to the onset of tremors that soon turned into horrible shaking. I've tried to present an accurate picture of what was happening to me emotionally, as well as physically.

I am proud of this blog and hope that it will continue to be helpful to those who read it. May God use me and this blog to good purpose.

Back to Square One Plus

OK, first of all the plus side of the meeting we had with Dr. Watt's team this week. My fancy MRI and EEG did not show anything particularly abnormal, and certainly nothing that I need to be worried about. The ultra strong MRI did show signs of several Transient Ischemic Attacks, or TIA, what many people call little strokes. The doctor said they were normal "for my age." (I hate to think I've reached the age where something wrong is normal, but I guess I have, huh.)

My reaction again is not what anyone would have expected. I guess I should have been jumping up and down with joy that I did not have a brain tumor, but all I could do was cry. The whole time he's telling me that they didn't find anything that explained my symptoms, I was jerking and wreathing all over the place. I asked him point blank if this could be that I'm just crazy, but he assured me that there really is something physical going on, they just don't know yet what it is. If I understood him correctly, he says in time my symptoms will become more obvious, so they can make the diagnosis.

The Clonazepam had already made me very depressed, so I have been way low since Thursday. They are weaning me off the Clonazepam, since it did not help, and it was making me feel so depressed. I think they plan on calling in a prescription and trying something else, once I have finished weaning off the Clonazepam.

Hubby was really angry with me Thursday night. We finally talked about it yesterday, although I still begin to cry when I do discuss it or even think about it. He was so mad, because he said I acted like I was disappointed that I DID NOT have a brain tumor or some horrible disease. I really can't explain it, but to have my body jerking and wreathing and nobody being able to tell me why is extremely upsetting. I know I should just put my faith in God, that this will either improve with time, get worse and provide enough information to make a diagnosis, or stay just the way it is now. If this is the way I will be for the rest of my life, then I am going to have to deal with it somehow. But for now, all I want to do is cry.

The only diagnosis they will even name as a possibility is Tardive Dyskinesia, which just means they think this was caused by some medicine I have taken some time in the past. Trouble is, whatever it was is obviously not in my system now.

They have told me for sure that I do not have Peripheral Neuropathy. I asked him if that meant the original diagnosis was wrong, or if it had been cured. He said it was possible that it was cured, but seemed to be leaning more toward the idea that the original diagnosis was incorrect. I did not get the nerve up to ask him if Parkinson's was ruled out. That seemed kind of pointless right now, since Parkinson's is so hard to diagnose anyway.

So, I'm left feeling miserable, with no coping strategies working for me at all. I'm crying even as I write this. I cried in church today. I cried in the car yesterday. That's basically all I'm doing - just crying. It's a grief that I can't name, but it's there.

Misery Loves Doesn't Love Company

I am so counting the days until my appointment next week! The depression level I am feeling is so pervasive that I am not fit to be around right now. Hubby is doing what he can to leave me alone and not trigger another crying spell. Or worse, make me mad. We had an actual verbal fight last week, which is most unusual for us.

I knew when I worked in the basement while he was gone that he would be livid when he found out, but I did it anyway. I just needed to be "normal" for a little while so badly that I didn't care that it would cause a fight. He won't let me go down in the basement, because he is afraid I will fall. We do have a horrible mess down there, that needs cleaning out terribly, and I am much more impatient about it than he is.

I hate depending on someone else to get something done that I should be able to do myself. I hate being sick. I hate shaking. I hate being off balance. I hate being seen in public jerking all over the place. I hate using the cane and looking like each step is going to be my last. I hate looking old. I hate not being able to do any work in the yard long enough to accomplish anything.

But most of all I hate this horrible feeling that they are not going to find anything physically wrong with me, and that I am going to end up on some psychiatrist's couch or on mind altering drugs. This Clonazepam is bad enough. I looked up the side effects, and depression and loss of balance are right there in black and white. I'm taking a med to stop some of the very things it will give me - doesn't make much sense does it. I still have the strong mouth tics when I am the least bit upset, and my face is definitely beginning to contort, with right eyebrow high, left eyelid drooping over the eye, and mouth pulled to the left. It looks like I have had a stroke, and can't control the left side of my face, but it's actually quite the opposite, the muscles on the left pull it that way.

I did finally recuperate from the left leg weakness and pain left over from the EEG test, but my nerves have yet to settle back down from the super loud MRI last week. I'm crying at almost everything right now, and can't stand noise at all. The loud TV commercials are bothering me so badly that hubby has started hitting the mute button when they come on. Last Sunday, for some strange reason, the young fellow who runs our sanctuary sound system had some of "his" kind of religious music piping in the auditorium before church. As far as I know that has never happened before. People were talking louder than usual to be heard over the extra noise. I sat there for a few minutes, and then told hubby we had to leave. I just couldn't take it. So, we were some of the first folks at our favorite Chinese restaurant last Sunday. I went to church that night, and it was fine. But that morning was horrible.

I am not sleeping as well as I was, either. Some nights have been good, but there have been a few of the kind I used to have, where I am up at 3 or 4 in the morning. I am not using the TAP, as I just don't think I can deal with it right now. Somehow I just have to make it through until next Wednesday.

I've completely rearranged one of the bedrooms we keep part of our plush lovies stock in, and I have worked some in the yard, trying to get the area ready to plant grass where I worked on the lasagna compost all winter long. I'm trying very hard to stay busy and focused on something besides me, but it ain't workin'!!

Wow! That was quite a rant, even for me!! But it felt good to put it down on paper and acknowledge it. It's real, and I'm not exaggerating. Hopefully, I will be able to look back on this post soon and be thankful it is all over. I always cling to hope, even in my darkest despairing times. God is good. AMEN!

3T MRI Today

I had the high powered MRI today. Up until a few years ago it was only used in research facilities, but now it is being used for clinical diagnoses. It uses a much stronger magnet than a regular MRI, which means it gets a much finer image of the brain. That's the good part.

The bad part is that it is horribly loud. Even with the headset on to muffle it, I found the high pitched sounds at the beginning and somewhere near the middle to be excruciating. I took a whole Clonazepam pill before having it done, hoping it would diminish my tics somewhat, so they could get clear pictures. They also put extra padding on each side of the helmet like halo to further stabilize my head. They had a good cushion to put under my knees, so I did not have to try to keep my legs bent to deal with the back problems. That was a blessing.

We had to walk through about 4 blocks of hospital buildings (all the buildings have crosswalks over the streets)to get to the MRI section, because the Parking Deck we were supposed to use was Full. There was no way I was going to be able to walk back after the test, as I was way too wobbly, so we waited for transport to take me in a wheelchair.

We have two weeks now to wait for our next appointment with Dr. Watt's team to find out the results of all the tests. so, I'd appreciate it if you would keep us in your thoughts and prayers. There's still a part of me that cannot let go of the thought that all that has been going on with me for the last two years is psychosomatic. I may not be crazy, but I can't shake the thought that this is all my fault - that I have brought all these symptoms on myself as a stress reaction to the last ten years plus of difficult care giving. I desperately need to KNOW what is going on. I need strength to survive the wait.

Unexpected Aftermath of EEG Test - Still on Clonazapam

I had an EEG back when my own Neuro was trying to decide what was wrong with me, so I knew what to expect. Well, I thought I knew what to expect. My "good" left foot has been extremely painful and difficult to walk on for the last few days. At first I blamed it on all the walking we did at the cemetery in my Sketchers, which I now use as Sunday shoes. But I don't think that was the culprit.

I was on the exam table for about 45 minutes, jerking and shaking the whole time. I can't lay down flat like that without setting off back spasms, so I put my good knee up and had my bare foot pressed against the thin pad of the exam table. I must have been pushing down on my foot a lot harder than I realized, in an effort to bear the discomfort of all the jerking. It is gradually improving, but I noticed yesterday that my thigh is also aching. My foot was hurting so badly that I had not even noticed the leg. So, I've decided that's what is wrong with my foot, rather than my shoes. Those are the only unclunky looking shoes I have been able to wear, so I am glad that they probably did not cause my good leg to give me so much trouble.

You are supposed to go up with the good and down with the bad leg, so it was comical yesterday at church trying to figure out which foot to lead with. One hurt, and the other shook! LOL I decided it was safer to lead with the painful one, rather than the jerky one. At least I was less likely to fall.

Speaking of shaking, the Clonazapam may be helping some, particularly with my mouth, but I am staying in a stupor, sleeping through my morning pill alarm, and just generally fuzzed out. He says it will go away --- I sure hope so. Otherwise, I won't be able to take this med.

I can't see any improvement in my foot or my shoulder jerks, though. I'm waiting now to hear about my MRI appointment. I am going to call them today, since we still have not heard from them.

Patience ... still haven't learned it.

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.

Been to the Physiatrist and I'm Still Very Busy

I saw the Physiatrist yesterday. He's the doctor who had to review my records before he would agree to even see me. As it turns out, oddly enough, he is the person who did my original EMG and Nerve Velocity Tests.

I was extremely pleased that he did a complete checkup, rather than just asking about my neck. He went through a complete neurological exam, but didn't venture much as to what he thought was wrong, other than to say Dr. Watts was the one who would be able to say what is going on. He did say he was sure I had some kind of Movement Disorder, but he didn't think it was Parkinson's, either.

He went over some options for the neck pain that has persisted since November. We agreed to try the least possible first, particularly since I will see Dr. Watts in less than three weeks. It's hard to imagine that something I've waited so long for is almost here! Anyway, the Physiatrist gave me a prescription for Lidoderm patches that I cut and apply to the trigger points of this pain. They are basically Novacaine that goes through the skin to the muscle. He felt like I would not have any stomach problems by doing it that way.

I put half on the top of my shoulder near the neck and the other half just below the shoulder blade, next to the spine. Those are the spots that really scream if I sit or stand unsupported for very long. Even the time to wash a full sink of dishes or eat a meal at the table is usually enough to set it off, and sitting on the church pews has been very uncomfortable.

I felt a little bit light headed soon after putting the patch on, but that could have been for any number of reasons, as I had not eaten breakfast yet. I am hurting now, but maybe not as bad as usual. Obviously, one day's use can't calm down this spasm, so I will just have to see how I do. The prescription is for 3 months worth, and thank goodness I have Medicare and good insurance, as it was listed at over $500!

I've been going around in circles lately trying to get a whole lot of things accomplished all at once, and not getting much finished at all. We have started on our taxes, but there are some parts that I must work on before the exact number can go in the form. I've been doing them with software for years, but this time my hubby sat down next to me and we went over each part together. That helped me stay calm, plus he needs to know how it's done.

I'm also trying really hard to get as many of our toys in our online catalog as I possibly can, and I have run into several road blocks I had not anticipated. I had to learn how to use a Shopping Cart program, upload and download files to Google and our ISP to make a searchable data base, and I have been driven half crazy trying to get the catalog to show up properly in Google Base. OK, I know if you are not using the programs yourself that was just a bunch of gobbledygook - but they were very confusing to me, too, and I am definitely not learning new things as quickly as I once did.

I've had printer problems and had to buy a new one yesterday, so I couldn't mail out some orders today, because I hadn't figured out how to set up the network part of it. That actually worked pretty well, once I did understand the directions, and it even has an answering machine and fax included in it! I feel like I have my own home office now.

Our Search Service is keeping me extremely busy, too, and we have made a few sales from it, as well as helping several very happy parents find the lovie they needed, whether we made the sale or someone else did. I am pretty much caught up with answering the initial request, but I am miserably behind at getting the ones I could not find turned into blog posts.

I feel bad about that, as some of these parents sound so desperate, but hubby is still computer phobic, and that leaves this part of the business entirely up to me. He's great at scouring the yard sales and thrift stores several times a week when he goes out on his own, and we thoroughly enjoy our Friday Date Day, and he helps a lot with the packing. He takes everything to the Post Office, too, and he has a lot of input about how to do the business side of selling. He just doesn't want anything to do with the computer part.

Well, enough about all that. It just goes to show that I am staying busy with lots of different parts of my life - and our messy house proves it. Something had to give - so.....


Hopefully it won't be so long before I post again.

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.

Less Computer Time = Getting other things done!

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

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

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

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

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

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

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

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

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

Back on the PD Meds

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

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

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

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

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

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!

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.

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!

Things Not as They Should Be

Well, I was right. Something is wrong with my elimination anatomy. I saw the Gastroenterologist Tuesday, and he sent me to another doctor, who found the problem. This doctor is not giving us a high percentage of likelihood of being able to fix it, though. He's sending his findings back to my Gastroenterologist, Dr. B, and I have another appointment with Dr. B next Tuesday. I really don't see much choice but to have the surgery that may repair the problem, even with less than best odds. Not exactly the news we wanted to hear.

Dr. B did give me some samples of Amitiza, the prescription that is replacing the Zelnorm I was taking for the problems with my digestive muscles not working properly, until it was taken off the market. From what I've read it nauseates some people horribly, but I've been lucky. So far, no problems taking it. I can't tell yet if it is going to be helpful, though.

Now, this evening, I found a tick on the side of my knee, and the bite area has a red ring around it. According to what I've been able to find, that means I'm headed to the doctor tomorrow, possibly to start a round of antibiotics, as this apparently is a symptom of Lyme Disease.

What's the expression? When it rains??????

A PD Plus Story You Should Read!

I want to thank Dan, of PdPlusMe, for writing a detailed post on his early symptoms and struggles with what was eventually diagnosed as PD Plus. If you, or anyone you know, has Parkinson symptoms which are not helped with Sinemet or other traditional PD meds, please get them to read his blog!!

pd plus me: Looking for those with Parkinson's Plus and PD

Getting Back to Normal?

I've gotten a lot done in the last few days. We've had the appraiser out to the house, the taxes are ready to sign and mail, and I'm almost finished with the tax bookwork for our paid caregiver. I finally gave up and went to the Orthopedist about my knee and shoulder, too. The X-rays showed the degenerated cervical disk I already knew about, and arthritis in my knee, which wasn't surprising. Dr. J is guessing that I have a torn miniscus, but it will take an MRI to determine that. From what I've been able to read on the Internet, that seems like a reasonable diagnosis to me, particularly since it was injured when I was shifting Daddy up in the bed.

I'll have to go to Physical Therapy and stay on Extra Strength Tylenol 3 times a day before my insurance will agree to the MRI. That's fine with me, as far as the therapy goes, as I'm sure it will be helpful. The Tylenol doesn't even faze the pain, but I'm following his directions and taking it regularly.

We're still walking at the track early in the mornings, but it's been way too cold the last few days. Alabama is having record cold weather right now. So, we've been doing exercises from videos. DH is REALLY following the tape, and I'm bouncing on one of those little trampolines and doing as much of the arm movements as my shoulder will let me.

I'm still just taking the Zelepar, hoping that the exercise and whatever the doctor does for my knee will be enough. I just don't want to try the Requip, if I can possibly help it.

We had our usual Date Day Friday and enjoyed looking at lots of Estate Sales. We've never been able to be an Early Bird before! It was strange to get there before most of the stuff was gone. And we did manage to pick up a few good buys, I think.

It's been ages now since I've taken pictures and put anything on eBay, but I'm going to try to get back to that this week. We have an almost overwhelming amount of "stuff" we've bought in the last few years, and I haven't been able to work seriously on our online sales for almost 2 years. With so much of the Estate business started now, I'm ready to get back to NORMAL.

Can I Keep Daddy in His Own Home Any Longer?

It looks like it's time to consider a Nursing Home for Daddy, something I never wanted, and he certainly won't want.

The last couple of weeks have been busy ones, as far as taking care of my Daddy is concerned. He woke up two weeks ago with his right arm in such pain and so stiff that he's been having to eat breakfast left handed. He can't even get the spoon to his mouth with his right hand. The Hospice nurse came and checked him out, but she couldn't find anything in particular going on. She did get a prescription for Ibuprofen, so I've been alternating every four hours with the Motrin and Extra Strength Tylenol. By lunch time his arm has been better, but it starts all over the next day, just as bad as the day before.

With his arm like that, he's having more difficulty getting out of his chair and the bed. Eating has been very frustrating for him, and he's having more trouble using the walker. I've been trying to help him get up and down, to give his arm a chance to heal, whatever has been wrong with it.

Day before yesterday, the nurse looked at it again and was concerned about a good bit of fluid build up around the elbow and upper arm. I knew his hand was swollen, but I hadn't realized the upper arm was larger, too. Anyway, she made an appointment for us to see his GP, Dr. M., in case it was a hairline fracture from the original fall, or something like that.

I didn't realize until yesterday just how much worse Daddy is than he was when he first fell. Trying to move him from the chair to the wheelchair, and then from the wheelchair to the car, was just about impossible. I wore myself out trying to do it. Luckily, Frances, our sitter, was there to help move him into the car, and she was panting by the time he was in. It's so much different than when we took care of Mama and Pop. They were both small people, not weighing more than 100 pounds, and they both cooperated. Daddy is about 160 pounds, and he's a dead weight. To make matters worse, he doesn't trust anybody, so he kept grabbing hold of the car door for dear life, and we had to peel his hands free to get him to hold onto us to maneuver him.

We asked for help at the doctor's office, getting him out and back in, so at least we didn't have to struggle with him there. But then, of course, we had to get him out of the car and back in the wheelchair on our own when we got home. He wasn't any easier to move then than he had been at first.

The whole ordeal was extremely upsetting. The worst part of it was that the doctor no longer has an X-ray machine, so it was more or less a wasted trip. We have to see an Orthopedist next week. That means going through all this again. I did mention to Dr. M. that I had a sore throat, so the nurse swabbed it, and I have strep. So now I'm on antibiotics. At least we accomplished that!

Yesterday's events have forced me to reconsider just how much longer we are going to be able to keep Daddy in his home. I can see that he's fast reaching a point where I won't be strong enough to take care of him. My DH and my Daddy have always had, shall we say, a cool relationship with each other. So DH gets frustrated with him, and Daddy stays mad at DH. My hubby is here for me, and doing a great amount of the work, but he's just not up to the cheek to cheek "dance" it takes to move someone who's not able (or willing) to help. And I've had a lot more practice at it, too. It is a skilled maneuver, but with Daddy, I'm just not strong enough to do it well.

So, I started thinking about Assisted Living homes vs Nursing Homes last night. I really don't think an Assisted Living place would take Daddy, but he's so mentally alert most of the time I hate the idea of a Nursing Home. I don't think I'm going to have a choice, though. We had visited just about every good Nursing Home in this area when we were caring for my mother and father-in-law, so I have a pretty good idea which ones to check for vacancies.

We have an appointment Tuesday with the Orthopedist, and his diagnosis of what's wrong with Daddy's arm will have a lot to do with where we go from there. If he puts Daddy's arm in a sling, we're in a mess. So, we'll get through the next few days as best we can, and go from there.

All this has been happening while I was supposed to be giving the Zelepar a fair trial. Considering how yucky my throat has been the last couple of weeks, and how much more work has been involved in taking care of Daddy, plus the extra stress of seeing him deteriorate, the Zelepar really hasn't gotten a fair trial. I'm not walking as well as I did with the Requip, but my stomach is definitely better. From recent reading I've done, I understand that this is the maximum dose of Zelepar, so that's not likely to improve, unless it's because of the increased stress, or because I had strep, and that effected my walking.

So at the moment, my thoughts are up in the air, with lots of questions, but no clear way to answer them right now.

My Prayers Have Been Answered!!

I've been going to doctors for years with strange symptoms that came and went, that they never could explain. Most of them were attributed to stress, which made sense, but I was never satisfied with the diagnosis. Today, the Neurologist officially gave us the diagnosis of Parkinson's Disease, and even though that can mean years of debilitating illness, it doesn't have to be that way. Every PD patient is different. I'm just so relieved to have an explanation for what's been happening to me, particularly for the last year, that I have been celebrating all day long. Now I have an enemy I can fight!!!

Doctor S has given me the directions today for weaning off of the Sinemet and changing over to Requip, which is a dopamine agonist. There's no way of knowing if I will be able to use it instead, without trying it, so the next 4 weeks will be another trial. Sinemet is the gold standard of PD meds, but it only works for a limited number of years, before the side effects cause as much trouble as the PD does. So they try to delay starting "younger" patients like me on it, if they can help it. (I don't call 63 younger LOL)

We also asked about exercise, and he said for me to walk for 30 minutes a day for 4 days a week. From my reading I've found that Tai Chi is good for Parkinson's patients, and I've already had some training. I went to the gym on the way home today and talked to the Sensei about giving me some private lessons two days a week for 30 minutes to help me build my balance and stamina again. And Dr. S said I need to do some weight bearing exercise, too, so I'll be getting back on the mini trampoline, too.

Today is a new beginning for me in a very real sense, and I thank God that I have been diagnosed early, so I have time to improve my health as much as I possibly can. I thank you all for your prayers.