BIG Program Complete. Neuro Visit Last Week. Meds Working Fairly Well

In reverse order from the title, the problems I had with medications, specifically Sinemet or CarboLevadopa have been more or less resolved with a visit to my Neurologist in which she changed me back to a previous form having a little more of the Carbo part, which prevents nausea.For convenience sake she had prescribed a 250mg tab Levadopa with just 25 in the Carbo part. I had been taking 100/25. 2 1/2 tabs 3 x a day, So I was getting a lot of Levodopa with not enough to prevent nausea once we changed to the single tab format. It was worse than morning sickness. Happily, back on the 100/25 format and taking more pills may be less convenient but I have very mild nausea. In both cases it's the profoundly stupid/sleepy/gorked feeling after about an hour that really slows down my activity. It often means at least a crash on the couch for about 30 minutes or even an hour or more nap. I just take that in stride and go on with life once it wears off. At least I'm not having the leg cramping and mounting problems with the dystonia I had before the Sinemet.

Part two, the Neurology visit: All in all, I am serene. I know what we are dealing with, that it is progressive, but that I can do a lot to help slow and possibly prevent some of my worst fears. I don't have to take this lying down, which was what had happened as I worked intuitively with the dystonia. Based on what might have worked when I thought of inflammation in the world of Nursing where I had worked, I thought, immobilize and use anti-inflammatories. It just got worse and worse. So I wound up literally on the couch for a month. Having communicated with my wonderful Neurologist, and following her instructions to go to the BIG program, I faithfully attended 2 hours daily 4 days a week for 4 weeks. My pain level on a 1:10 scale on the right side was about a 9 or even 10 at times when I entered the program. It has been as high as 6 in the last week, but not all day every day, and as I stretch, use weights and go through the exercises I feel stronger, am visibly more upright, and have a hope that I did not have before. Yes, I have some dystonia on both right and left ankles and right foot. I probably will need to work with that every day for all my life. But I don't have to accept severe pain and immobility. I can mitigate the problem with working daily on it. Is that so bad?

Three, the LSVT BIG program is working for me, giving me strength in small increments and changing my ability to move more effectively. I hope to be able to walk around the block for the joy of it after a little more work. The program I attened incorporated both Physical and Occupational Therapy specific to my needs along with the basic BIG program. I went in a skeptic and came out a convert. My plans are to start with my BIG movements every morning and then go to the gym to work on core training and weights, using the bike to help get some cardiovascular workout. My therapist cautioned me to rest before I get tired. I have big thoughts. Now I will try to use my brain to tell myself, Self, you don't have anything better to do. Take a rest for 5 or 10 minutes on a bench and then go on to the next thing in the exercise circuit. If it takes 3 hours, they will be well spent if in a year I am working more efficiently and my fatigue diminishes as a result, making it a 2 1/2 hour effort.

Four, not in the title, Service. My religion promotes service as part of becoming who our Maker would have us be. I have long believed that, and tried to practice it. For a while I felt derailed by Parkinson's and did not find time to do even little things. Now a phone call or short visit is not a problem. Much can be done to help another through a phone call or email.

My Neurologist smiled and said it looked like I had worked through some of the stages commonly associated with the grief and grieving continuum taught by Elizabeth Kubler-Ross. She thought I had reached a healthy stage of acceptance. I had to suppress a guffaw. It came out as a giggle, because what I wanted to scream at the top of my lungs was, I AM GOING TO FIGHT THIS IMPOSTER UNTIL I WIN! It is peaceful here overlooking the battle ground of the last 4 years. Unused bottles of pills that sent me to sleep almost all day or kept me up almost all night are empty, their contents sent to some company that destroys them. A walking boot that cost my insurance company an unnecessary amount of money is in a plastic bag in the garage. Supplements I can't swallow because they are so big are sitting in my cabinet gathering dust as I look skeptically at them wondering what advantage they have over plain, homegrown or organic foods and whether they might be better put on the Snake Oil shelf. Our foods are not vitamin-less and empty. We just need to eat well.

So the plan is: Attend the BIG refresher class once a month while going to the gym 4 days a week if not 5. Eat well, follow the CURVES diet to reduce BMI, relax, enjoy the roses, and support others who need my help when possible. Gone is any anger not directed at fighting Parkinson's condion.

LSVT BIG training

Well, I have finally met a program I believe is helpful and actually designed by knowledgeable and qualified professionals to help Parkinson's patients. My Neurologist sent me to the BIG program which in the clinic I attend combines both Physical and Occupational therapy 2 hours a day, 4 days a week, for 4 weeks to teach you how to move.

Parkinsons, according to a friend I met in my online support group, is an imposter. That is accurate so far as I am concerned. I don't give it a capital I for a reason. It's a liar and a thief, making you feel like you cannot do at all what you could do at least better than you do now. You then loose the ability to do what you would normally do in increments as you surrender to the pain and disability you feel. It's true, it hurts, and it's true you are unsteady, and it's true that you feel tired and don't sleep well. But fighting it can mean triumphing over it. You may not get what you had before but you need not give the bully your whole lunch just because he takes a bite of the sandwich.

If You Take Away the Last Drug that Might Work, What's Left?

I know I must sound like a person with an aversion to taking medication. But I take a small handful in the morning and one mid day and an other small handful at night. When I remember to, a take the enormous vitamin and other supplements my Dr. recommended, but I'm doing well to take the prescription stuff, honestly. I believe good food is more well used than supplements and is less expensive in the long run.

So I am here to say that the drug I said I would never take, and the last one on the list of the 5 different classes of drugs that might help Parkinson's, Carbolevadopa, is both wonderful and terrible. It has had a somewhat positive effect on the dystonia, in that my legs are no longer angry red even if they are painful and swollen, and some of the areas that were highly affected seem to have either moved their focus or relaxed. But I do, oh, do I still have dystonia in both feet and especially in and around my right ankle and foot, making it dreadful to even think about taking a walk.

When Sinemet worked so well for me and when I had virtually no side effects on a low dose, we upped it to a more effective dose because I could tell almost the moment it wore off. And it was no problem for about 2 months, but it is now mid May and for the last three weeks I have had nausea and a mild headache each time I've taken the higher dose, and even sometimes when taking the lower dose we reverted to.
I have yet to call the Neurologist to tell her about the continued effects in the low dose, because I want to be sure it's not my imagination. I had to have two different episodes of vomiting to believe myself that it really was the Sinemet before I could tell her. Now I have the same symptoms but not quite as intense on the lower dose. There's a chronic underlying headache, and that queasy feeling that you just can't shake. I have to ask why, when nothing else ever worked so well to control my PD symptoms does this have to happen?

I have hired some household help to assist me in getting the deep cleaning done since clutter and dust make me feel depressed. I want to be done with all the un-used items hanging around my house and have a simple environment to keep clean. I fear reaching the point where I might have no say in what happens to the "stuff" of life all around me. So I am having her box and haul away what needs to be donated and running my shredder to dispose of years of old paperwork that when I was working there was no time to deal with.

I am visiting a forum for people with PD that I find helpful because some of the active members are driven, upbeat fighters who push us all to work at beating this uninvited intrusion into our lives. I am so glad not to have to be the strong one, but to hear someone else say, "FIGHT!" and know I can do it because they have. I always had to be the leader before, it seemed. Now I'm not a follower, but at least a soldier. I hate this disease. It's still better than Ankylosing Spondylitis, though.

Second guessing natural medicines...Why we need more clinical trials.

To be perfectly clear, this blog is not about whining. It is about the windmill I joust with. It is about the long, pointy stick I tangle in the blades to try to keep the windmill from swinging back again and again toward me on my old, sway-backed horse. If I feel like Don Quixote maybe 23% of other Parkinson's patients also feel like Don Quixote. So this is for them, and for the curious or the knowers-of-other people with Parkinson's trying to get inside their skins to understand. It IS like I said about the riding-the-motorized-grocery-cart thing: humiliating.

I have noticed that if you ride the motorized grocery cart, you become somewhat invisible. A few people can see you, and make eye-to-eye contact, pause just as they would if you were about to intersect one-another's paths while walking, etc. But while I'm venturing percentages, I would give it a 65-75% chance that the lady standing there staring straight ahead at the milk section of the glassed-in frige is going to keep staring straight ahead for as long as it takes for you to grow impatient and say, "Excuse me." Her peripheral vision which appears to otherwise work without fail, does not work if you approach her personal space, which now extends about 10 feet in every direction ending at the glass door. You don't really want to run into her with the motorized cart, so you hang politely back. She is thinking about her home in Ontario, or New Zealand, or Queens. She is far, far away. No, maybe she is a nuclear physicist and she is really concerned about the possibilities of collateral damage to a reactor during an earthquake, and she is onto a train of thought you just don't want to be the one to interrupt at a time like this. Oh, heck, you know there is probably radiation in the milk anyway.

Well, I went back to see my wonderful Neurologist. By the time I got there, now about a month ago, I had taken Aleve regularly for about 3 weeks and the swelling was significantly decreased in both feet. We talked about my new program, working with a personal trainer and doing core strengthening exercises at the gym. At the previous visit she had suggested I try backing off the Klonipin which had been prescribed for sleep, and since I was on the lowest dose I thought it should be no problem. I had forgotten how miserable it was to never, never sleep all night.

So I did. I weaned within 2 weeks. Then I stayed awake for about 4 days. Then I started back on the Klonipin, called her office, and left a message. We played phone tag for several days, her nurse and I. After I finally spoke with her nurse, we left it at sleep was good. I realized she still did not have a copy of the original sleep study so I put on a sticky note to call my Internist's office and have them send her a copy. The findings were that I woke regularly though the night and when not awakening fully came close to awake about every 10 minutes, no kidding.

Now that this is a surprise to anyone is also a surprise to me, considering the pile of literature almost casually mentioning that it's part of the deal. Sleep disturbance is a REGULAR part of Parkinson's. Everything you read about it describes it as a presenting symptom, often not connecting the patient yet to the diagnosis of Parkinson's. Mine began probably 8 or 9 years before the diagnosis. It wasn't that bad yet so I could explain it away and ignore it.

Anyway, I am now back to believing I am asleep when I am in fact still talking and having active dreaming, but feeling significantly less tired in the morning. Can't say that I know I'm getting more sleep, because another sleep study would mean a lot more $ and this is getting kind of expensive for a disease better than an MVA or a kick in the head.

Twice during the day I have "gorked" episodes when the Carbo/Levadopa hits a peak, and I surrender to another episode of the Waltons or watch the Borne Identity or Napoleon Dynamite until I drift off to sleep for a half hour or so, then wake ready to resume a sort of foggy first half hour and a more normal next hour or two after that.

I save the 3d dose for bedtime hoping it will act on the foot, but since I have a (flash!) NEW SPOT on my right foot I've been nursing along since I told the nurse, "No, no I don't want to come back in. It's OK, I'll be fine, I can't come in and take up her time for every little thing." The subject then was sleep. That worked out, but the foot went south as soon as the sleep got better. It's like the muscle contractions look for a new home once you get the old site to sort of simmer down.
I don't want to live on Aleve, but I'm back on it, as I said, and in about 3 more days should be able to stop, I think, and go back to the gym and the bicycle.

Everyone has their favorite health hobbies. My personal trainer wants me to see a Chinese Herbalist. I don't know how to tell her that I am not capable of trusting any substance that may have a second dose of what I have already painstakingly worked through in the last 3 years. When you explain to people that many of our modern medicines come from tribal and regional medications known to have some positive effect on a given disease, they fog over. Go right off into a trance or to that place in Burma where the Eat Pray Love Girl went to meditate.

It's more exotic not to know what the med does, and it just shoots it all to heck when somebody breaks down that mystery by putting it in a clinical trial. Hate it when that happens, don't you? Like when they go to the Amazon jungle and find out some tree sap is what the locals use to prevent athletes' foot, so they take it home, analyze it on a petree dish and isolate what works, reproduce it in mass quantities, make it affordable for the average American, and call it something like Lotrimin AF. Then somebody gets proprietary rights for 7 years for the synthetic or isolated substance. The stuff in the scorpion tip that actually does have an effect on Parkinson's is probably among the several different drugs I've taken or am now taken. And the natural/herbal med crowd denounces the drug companies for charging $1 a pill, while the Chinese herbalist (who is a Caucasian from Detroit) continues to charge $85 an ounce for it.

What was I thinking?

When I first spoke with world-renown Neurologist, Dr. Plotkin in Tyler, Texas's Neurology Center, I told him, "I'm never taking Levodopa." I was convinced it would be years in the future--not less than 10, and probably 20, before that even came up as an issue. But I knew, oh, how I knew, as a nurse that Levodopa was a self-limiting gift that kept on giving. The more you needed it and the more you took, the more side effects, monstrous side effects you would have. He explained that he had some serious doubts about the bad reputation Levodopa had earned over the years, because he had a number of patients who had taken it as long as 20 years without any real problem. "It's the disease process," he said. "The disease marches on, whatever you take, and for some people it moves faster than for others. Regardless of when you begin the Levodopa, symptoms of progression are going to occur." I could see immediately what he was inferring. It would be easy to blame the meds for the disease symptoms since you really can't be without the meds. And they do not actually hasten the symptoms, which, for me, now include dystonia.

It was late last year when I sat across from my own neurologist, Dr Peckham, who had trained at Dr. Plotkin's center. When I first told her my foot had been turning inward at night, she jumped out of her chair, and raced toward me, saying, "When did this happen?" I thought she was really reacting strongly, and I felt silly for mentioning it. I said, "It goes away when I get up and walk." It didn't seem like a big deal. I even thought, maybe I'm imagining this symptom because I've read about it befoe. But within months it was a very big deal. By the next visit my foot really was turning, my ankle thickening into some contorted shape, swollen and red. This very nice doctor had been patiently trying to let me negotiate what I would do with meds so I could have some quality of life. She now firmly insisted we had to treat the Parkinson's to get it under control and prevent further damage. I wondered if I had really tried the Amantadine or let my imagination run away with me and just THOUGHT it was causing the tachycardia and PVC's I had experienced. We agreed I'd give it the full try, 3 times daily.

I asked for a referral to physical therapy, and was at first pleased when an anti-gravity chamber permitted me to not only walk more easily, but actually to jog. It was, of course, too good to be true. You can't spend your life in an anti-gravity chamber, and the physical therapist, geared toward high school athletics, had some idea that exercising was going to "fix" this problem, urging me to push a little harder until I was back where I started. Even in the chamber I was experiencing pain after a few minutes of walking.

Back on Amantadine, I was having the rapid heart beat again. I weaned off. For me it was proof positive and dangerous. My MD would not take me off the beta blocker he had prescribed to counteract its' effects even though I ass not taking it any longer.

Next I visited with a podiatrist who gave me a walking boot to immobilize the affected joints, and suggested we have a brace made, cast from my own leg, to slip into my shoe & support the affected leg.The walking boot made walking nearly impossible. After a week I was back to Dr. Peckham, who told me that in her experience, none of these things had worked for her patients. She suggested I was a candidate for deep brain stimulation or for Botox injections to the affected muscle groups.

She wanted to try Levodopa. The Never-Never Drug. I shuddered. I blinked back tears. "I said I would never take Levodopa," I offered in futility. I knew we were out of drugs. After stopping the Amantadine because of the arrhythmia that came while on it and went away when off of it, I had insanely thought I would just shake, and deal with it. After all, I was taking Azilect. At least that was something I could take. But the foot-drop occurred within a short time. I was essentially an un-treated Parkinson's patient. It was as though I had never taken anything, because, in truth, nothing had ever worked for me.

I agreed to the trial on CarboLevodopa. I was tired of the pain in my foot and ankle, and now there was a burning sore area on my left foot, just beneath the ankle and wrapping around to the sole of my foot. Always there. Never going away.

I eagerly worked my way through the ramp-up. I had heard from other Parkinson's patients that while it worked, the Levodopa REALLY worked, and that I would be happy to have the tremor gone. I knew there was a "wearing off" period, but was unprepared for what that meant. I thought it was something that happened, again, years and years down the pike. It happens within hours of the metabolism of the drug. You just start shaking again. You are so used to having it gone, so grateful after years of shaking all day and every day, and there it is, back within hours, so you don't miss a dose. Oh, how you worship the Levodopa! I understand why they called it a Wonder Drug.

I spent nearly a month at home waiting for the ramp up to be complete, and keeping off the foot that had become so painful that the idea of walking through even a grocery store was distasteful. I no longer cared about cooking because that meant standing on my feet for an hour or so. It wasn't worth it. The question, "What's for dinner?" brought out the worst in me. One day, I barked, "NOTHING! I am not cooking anymore and we're no longer eating!" Poor Rachael. She always has a mild answer. I felt terrible, and we found something to fix.

The area above my ankle became less red and swollen, but the extra thick inner aspect of the right ankle stood where it was. With increased use, it hurt more. So did the left. I began to use the riding cart in the grocery store. I felt embarrassed, since I knew I looked perfectly healthy to anyone else, and I hoped some little old lady or man who REALLY needed it didn't have to push a grocery cart because I was so wimpy about walking.

It has been about 4 weeks, now, on the CarboLevodoopa, and I now have an area of my back that has begun to hurt and burn. I suspect it is more of the dystonia. I'm working with a personal trainer, trying to exercise, carefully, for core strength and to counteract some of the effects of Parkinson's. I was thinking this was somehow going to fix itself. I still want to avoid the Botox or deep brain stimulation if possible, just a little longer, but now my questions are all about what will happen if the dystonia goes on and on, and what can we do to prevent it.

I see Dr. Peckham next week.

The economics of untimely Parkinson's onset.

The period of adjustment to not working was a roller coaster. With time on my hands and a brain that wanted creative stimulation I began producing greeting cards. The cost of ink for an Epson printer is astronomical, but when using antique pictures for your basis you can't really make a marketable image without nice, crisp results. Other printers couldn't approach the quality.

I could create wonderful cards, I thought, and sell them and if Social Security collapses I'll have some way of making a living because there was little doubt I was not going back to nursing. And I was not very marketable as an unreliable employee who had several off days a week and needed a nap. I could do this from home, I thought, and find a little shop to carry them. They were loved--by very few people. I couldn't pay my booth rent with cards alone so the shop dealer suggested I try a few antiques to supplement the cards.

My love for art deco dishes was overflowing. I bought a bunch of art deco dishes. But they don't sell well in our area and I'm not going to last past the year. Rearranging and dusting the shelves once a week is a daunting task. I barely make rent. Negative income. So that's not going to suck any more of my time.

My Neurologist emphatically wants me to remain as active as possible, so the hunt for a bargain antique at Good Will seemed like a reasonable form of exercise. Once every week or two the stroll around the store pushing the shopping cart would be tiresome but doable. Then my right foot and ankle started to get stiff and we went through Physical Therapy which was not a disaster, just another layer of problems making problems of their own.

So I had to see a podiatrist who X-Rayed my foot and determined what my Neurologist had already confirmed: I had foot drop with rotation of my foot. So she (the Podiatrist) suggested a walking boot for the meantime and a brace for later after they cast an impression of my foot and shin. But after sending me home with a boot I could barely move in that was uneven with any pair of shoes I possessed, my insurance company sent a letter saying they weren't committing to paying for the orthotic device, and that among the reasons were that they didn't cover braces, I might have gone to the doctor too many times, and on and on.

So I have an 800 number to call to spend an entire morning on hold before talking to a human being. I'm psyching myself up for that. It would have been nice to know I had a limit on the number of Dr visits I could make in a year. News to me, but then I don't go constantly, it just feels like it!

Meanwhile I have found a Parkinson's Support Group where they teach both vocal exercises and physical exercises and I will be going several times a week to try to stay ahead and postpone more digression of capabilities. All they ask is a donation each time you visit and a nominal family annual membership fee.

With my first long-term disability letter came the warning that in 2 years they would revisit my case and if they thought I could maintain some kind of work after seeing their doctors, I would be terminated from their program. That is a frightening scenario for me. While my Neurologist says it is not reasonable to expect me to work, I look OK, am able to walk, although it hurts after any length of time, and I see people worse than me at the support group (and, amazingly, much older and doing much better, so I don't get it). After looking up the underwriter online I found they are noted by attorneys for their propensity to deny further coverage after two years. I will be glad to know which way it is going to go since it stresses me out so much. We were not planning on my retiring for at least 6 or 7 more years and we're feverishly trying to prepare for a huge cut in income. I don't know whether to get an attorney now or wait to see what happens.

Getting Real: Meds and Symptoms

It might help the reader to know I was a practicing Registered Nurse for 24 years before I took FMLA thinking we would work the meds out and then I could return to work. Of course Neurology was not my practice and I have learned from both instruction and experience that one never treats one's family or oneself when there is disease or illness. First aid is OK, and CPR is a no-brainer. But you either don't see things or you know too much and jump to all kinds of conclusions.

In one of my other roles as wife of the high school sweetheart and father of our five children, I summoned my nursing skills to pack the wound unhealed on my spouse's head. It was left on the graft that covered the area where his then stage III Malignant Melanoma had been. The borders of the graft had taken nicely but the area right over the original site of the Melanoma had a troublesome spot that had remained dark, soupy, and failed to fill in with healthy pink tissue.

The surgeon had cleaned it and said we would need to pack it with iodoform gauze, something I had done in my Pediatric practice with deep wounds. I understood the concept. I was in his, the surgeon's, element and he was the one who was running the show. I could do the packing easily. But over time, I had some anxiety about the failure of the area to heal, and on the second post-operative visit expressed it. The surgeon assured us that it just took time. More packing, more gauze. Every day, for two months, and it still would not heal. I felt sickness rising in my throat every time I looked at it. I called the office, concerned.

On that third visit to his office he finally ordered the biopsy I had wanted to scream for the moment he removed the bandaging over the graft site and I saw the black looking clot right over the spot where the mole had been. Of course it was positive and to make my point, although I was trying not to be one of those people who try to diagnose their own family, my instincts had been right all along. It was a cancer surgeon who did the next several surgeries that saved his life despite the advancement out of the regional lymph nodes, making the cancer stage 4.

Long before my diagnosis with Parkinson's my sleep patterns were pretty rocky, and I talked and thrashed about in my sleep occasionally. My husband had taken to wearing ear plugs and I tried to "rest" more on my days off. With sometimes unpredictably long work hours in my practice and all the demands of daily life we had blown it off. I knew I had been waking several times a night but just laid there trying not to wake my spouse.

Now I was having serious problems with side effects of the Parkinson's medications. Staying awake on the road and at work was becoming a dangerous
problem. A sleep study was done with shocking results: I was near-awake approximately every 10 minutes at night.

Hearing my own doctor tell me I needed to be my own advocate was overwhelming. I hated advocacy. I had done it for most of my adult life--with a gifted child who could read and understand and apply geometrical shapes and math as she entered kindergarten, with a developmentally delayed child, undiagnosed for 4 years despite visits to 3 different pediatricians and a neurologist, and then for a child who was unrelentingly bullied.

The death of a child in a needless accident on a Personal Watercraft just 3 weeks after my husband's last surgery had led to my advocacy for Personal Watercraft Safety. I had co-founded a loosely formed coalition of parents whose children had died in PWC accidents who pushed for more boater education laws and better design of Personal Watercraft. This advocacy included compiling reports and speaking to large groups of people from all over the world, meeting with ranking officers of the Coast Guard, and Boating Law Administrators. Because of our ten years of effort, including time, immersion in study and analysis, money spent, and travel several times a year, the top designed craft now have brakes and off-throttle steering. It was good our work was about wrapped up as I received the first diagnosis of Parkinson's.

I had worked concurrently over those ten years, continuing as a Registered Nurse, and raising children. After the diagnosis I continued to work for about a year and a half before the critical point where it was just not possible any longer.
Most of my adult life it seemed that I was either the Little Engine that Could, or the Little Red Hen. I could do it all myself. When I heard those words, become an expert, my eyes glazed over. I wanted to go to a little island under a palm tree and stay a long time with a better book. This one was like playing the same key on the piano over and over again. We already had the Book of Job, and I was hearing Olivia Newton John singing "Have You Never Been Mellow".

So far I had been on 3 different Dopamine Agonists that I did not tolerate well. Although because I am pretty sensitive to drugs they had slowly ramped up the dose to increase the effectiveness I never got to what would be considered a therapeutic level because I WAS LITERALLY FIGHTING SLEEP WHILE TRYING TO HOLD A CONVERSATION. I was feeling less and less effective with every effort when at work, and it took me forever to do simple things.

Now I was trying Amantadine, which works to control some of the symptoms, but instead of making me sleepy it exacerbated my already largely disturbed sleep. Taking first one, then two, and finally 3 daily, I was awake for hours, doing and doing, then exhausted but sleepless and unproductive by the third day. We agreed I would try two daily, which worked moderately well, when I remembered to take the second one. Subconsciously I think I didn't want to take them.

I had developed a heart palpation and although testing showed PVC's (pre-ventricular contractions of the heart) a stress test showed no real pathology. I was now taking medication for high blood pressure that appeared out of nowhere on the day of my diagnosis with Parkinson's, sleep, GERD (another gift from Parkinson's) and the arrhythmia. There was some possibility the Amantadine was the cause of the PVC's, but it might also be my age, post-menopause. My Internist gave me a beta blocker which helped a lot but not completely. I was loathe to have another problem.

My neurologist and I decided to give a trial off the Amantadine and the beta blocker. My sleep was a little better, but I still woke frequently. Until the 7th day I felt no palpitations, then had a run for several minutes. So that was clear pretty clear. I had sleep disturbance with and without Amantadine and not taking it was not going to make the palpitations go away. We agreed I would try the Amantadine again 2 times daily, avoiding taking it after 3 for a little better sleep.

Over the next couple of months I started noticing pain in my right shin area and the inner aspect of the right arch. If I walked around in a big store I would be hobbling or limping by the time I was out. Since pushing a cart took the strain off my right arm, that was working for a while as a way of staying active. But now this was becoming an aggravation. I called and asked for a Physical Therapy evaluation after my ankle seemed locked and red. But it was time for my appointment.

I sat on the bench with my shoes off so she could compare the right and left foot and ankle. I knew the drill. When I told her about my complaint she looked across at my feet and said for the second time, "When did that happen?"
I remembered her sort of anxious response on the last visit when I told her that I had noticed waking with the soles of both feet virtually touching with the ankles extended. She had asked if they were like that all the time and I shrugged and said that once I got up and walked it seemed no problem. She examined it now and said, "Your foot has turned."

I was not aware of that. I tried to imagine why that would happen. You try to assimilate all the stuff that can happen with your disease process. You accept it and you negotiate for as normal a life as possible, and you stay active as you can. You try to keep some semblance of normalcy. It had always helped to be a nurse while raising my kids, and even when I was out of my element with my spouse's cancer. But wrapping my head around this was bigger than me.

She, of course, ordered the PT, and talked to me about what we were looking at if the Amantadine was not going to work. We had to decrease the tremor somehow or I was going to have more problems. I got it. I was going to have to GET REAL. She offered that we could try a drug out of Canada, and that if that didn't work the next recourse was the Dreaded Levadopa. I thought for about 2 seconds about that
and countered that I didn't think I had tried hard enough with the Amantadine. I had thought I could live with the shaking, never considering the damage it could do to muscles, tendons, and ultimately, bones.

So she agreed to let me try it again, and in my mind I said goodbye to a negotiatedly slower life where I could sort of slip through the day going to a shop or lunch here and there and skimming over the housework lightly, slowly throwing out and giving away the too-many-things we had accumulated in the same house for 21 years. Now I knew it was serious. The clock was ticking on my independence. I was going to need HELP! The Little Red Hen was going to need to
call the pig, the dog, the cat, and the cow if necessary to get things done.
And I was going to have to REST, that is, TAKE A NAP to make up for lost sleep.
Or in a few years I was going to be on levadopa with all its' lovely side effects.

I left with the prescription for the Canadian drug knowing if I tossed and turned every night I was taking Amantadine 3 X a day no matter what. I looked healthy and my mind worked perfectly well. But even my closest friends found it hard to comprehend I was not really up to a trip to the thrift store. I began earnestly trying to shrink the inventory of my antique dishes booth at the Antique mall in anticipation of shutting it down completely. When I couldn't sleep I categorized and prioritized tasks to shrink the scope of upkeep in our home.

I began to admit frankly that I had Parkinson's and learned to brush off the look of pity I sometimes saw when people learned for the first time. And I told the truth about how I felt. I thought, this is like having a child with Autism and a child who died. Both uncomfortable subjects. Well, my life is full of uncomfortable subjects and I still laugh and joke and read and learn. And what is Parkinson's to me??? A Big Aggravation I can't just ignore!

3 years

How is it possible it has been 3 years since I noticed the first symptoms of Parkinson's? How has life changed? I don't drive far and avoid freeways. Aches and pains I would have assigned to much later in life. Sleep problems that are better sometimes and worse others. Naps. People staring at my shaky right arm. Medications with side effects worse than the disease--so me and the Neurologist agree being able to conduct as normal a life as possible is the current goal. No longer working. Writing more, but taking it in bits. Closer to friends and family.
Priorities seem clearer. It's not really all that bad. Consider a closed head injury or Cancer. I'll take the Parkinson's.

Aches and Pains

Would you say there has been a lapse in reporting? I get one thing done every day. That is about it. Hardly ever do anything with cards any longer. Seeing a therapist once a week so I can work through not being able to sleep or multi task. But I'm happy, I think! Have great friends and family, so just concentrate on that. My left leg now shakes occasionally and my right regularly. All you have to do is flex it at the knee and support your leg with your foot and it will just sort of vibrate. Left less than right. Right arm is weak, grip and dexterity of right hand decreased. Have trouble typing because I keep hitting the wrong keys, or one finger will vibrate hitting the key repeatedly. I am undaunted. I was always a writer and I refuse to give up. Back and shoulders hurt if I sit long though and I need to go for that reason. It is not all doom and gloom. You just get your priorities in order. :)

How it's going

Well, I am on amantadine, which at least temporarily gives me some decreasing in tremors but if I take enough to have it be REALLY effective I don't go to sleep no matter what. Taking it twice instead of 3 x daily makes it tolerable without keeping me awake. However, Eddie reports that I talk, whimper, jerk, flail, grab, move my feet between 3 and 5 am every night. I know I am tired every day,

It's Mid-October

It's amazing how little has changed. We're not quite out of boxes as work on the house is winding down. Hope to soon be done and have it all put away. Less is positively more! It is my goal to have little or nothing for someone else to have to deal with if I can't do it myself some day. I still putter in antiques and dishes from the Art Deco period, produce a few cards, and just try to keep up here at home.

To say I am sleep disturbed is to put it mildly. Since starting Sinimet I have gradually increased sleep problems as the dose has increased. So I started backing the dose down and have to see the neurologist again this week. I wake up about every one to two hours all night. That's WITH a sleeping pill. I wonder if it would be the same without one, and am thinking about experimenting on that.

Next day I am gorked all day, sort of disorganized and can accomplish about 1/4 what I would normally do. This is frustrating. Good days are after a good night's sleep, and I feel better then, but still don't accomplish much. It's hard to have an effective routine.

Long time no wirte

It has been a long year. Gradually got less tolerant of meds and shakier, so am off everything except an MAO inhibitor. Totally could not sleep. They did a sleep study that showed I just don't get into deeper sleep and stay there.

But I have quit work, applied for SSI and we'll see what happens. Meanwhile started a card business creating unique and lovely cards from vintage materials. It's going slow but going. I hate the book work for business upkeep.

Lots of changes this year. A flood in my house when I left the water running in the bath room sink while doing laundry. The house is semi-finished but more re-do on bathrooms and kitchen and laundry room. Feel like I've lived 6 months in boxes.

Everywhere in my house are reminders of our daughter, Deborah, who died 10 years ago in a PWC accident. A photo here or there just shifted with the rest of the contents after living in the same place 20 years.

I need to nap, was up half the night despite sleeping pills.

Moving along

When I woke up this morning I still had Parkinson's. Saw two specialists since Aug, one in November. He wasn't very helpful. Second in March. Now, he was helpful, providing information and resources. So he began me on a patch to supplement the MAO inhibitor the first guy started me on, and it worked fairly well, but my legs are swollen, I feel zoned about half the time, and it has been recalled, so I have to wean off it and tomorrow they're supposed to call me and tell me what my new meds are. It was nice not to shake so much. I never got to a therapeutic dose (Neupro) and was just taking the 2 mg patch daily. My own Dr. believes strongly in natural approaches and has me on B vitamins and other supplements to try to save my brain. I feel passive. I hope they can
save me. There are some things I want to do before I lose my mind.

Still waiting but not not doing anything

It will be Nov 20 when I see the sub-specialist. I'm taking 1200 mg CoQ10 now in 4 divided doses daily. Expensive, but it appears to be a good thing from the studies I've read. Reading on the web now and then, and have some reservations about some possible treatments. I 'll want to review the possible side effects and weigh them with possible benefits. It does interfere with my life to shake at unpredictable times.

Waiting for an appointment

I am now waiting for a subspecialist to call me to make an appointment. His office said to expect it to take weeks. Meanwhile, when my hand and arm start to shake at work, it goes into my pocket. I just do not want this out for fear it will shade different people's perception of my capabilities. It is a fearful place to be. The strain of secrecy leaves me exhausted.
After checking with the extended family, not only does my maternal aunt have Parkinson's, but a great uncle on the same side of the family had it as well. I guess I won the Parkinson's lottery. Of the 48 grandchildren my grandmother had upon her death, I am the one so far. I think the odds are that 1 or 2 more may yet get the diagnosis. I'm more in the median age of those 48. Time will tell.
Right now, while I'm waiting, I'm deciding what is a priority in my life. Obviously, the main priority is my family. I want to do the extensive family history my Aunt June started, and finish other lines I have begun myself. I want to leave a record, written and electronic, for my children, grandchildren, and the extended family.
Another priority, upon which the first depends, is to simplify my life so that unneeded clutter and upkeep do not infringe on precious time. I'm beginning the weeding out process now. I don't want junk interfering with my life.
I've read a number of blogs from PD patients, and I find it frightening to think in a matter of a few years I may be disabled. I'm avoiding taking supplements of any kind that might interfere with treatment or trials I might get into later. But I am seriously thinking of taking Coenzyme Q10. Have to go.