We went to the Young Onset Parkinson's Support Group, for Care Partners and those who have YOPD. It was one of the best things that could have happened. Aside from hearing a broadcast of an authority on Sleep Disturbance in Parkinson's we were able to compare notes with other couples who have had very similar experiences.
My first conclusion was that I was minimizing the effect my sleep disturbance had on my spouse, even if he has always been a light sleeper. The second was that I had long ago accepted his reticence when faced with challenges. But he is present and accounted for, unlike others who completely flee. So I have to love the other things he does, like fixing the fence, in fact, fixing the nearly everything that comes apart, shakes loose, or just ages itself out of working right.
He was grateful to be able to find others like himself who were trudging along and supporting their partners through the constant change that is Parkinson's. After seeing him smile, laugh, and share his own experiences among them I felt relieved. It wasn't all hardship for him. He could take it in stride.
So I see that for me it is largely how I take it. What are my choices, and how do I respond to having to work through changes, often for the worse? This is the long ride home of my life. Am I going to spend it as a Parkinson's Patient or a Person who loves and does a lot of things and experiences the big and little joys of life, who also has Parkinson's.
Deliver me, Oh Lord, from being a Patient. Let me act for myself, appreciate whatever help others can give when I can't do for myself, and get and keep a smile on my face, once and for all.
Sunday, October 23, 2011
Thursday, October 20, 2011
Like interest, Parkinson's does not slumber or sleep, and never takes a vacation.
As a Registered Nurse it was my lot to see a lot of little vignettes in which the lives of my patients sometimes appeared and reappeared on the stage of my work. One particular instance in which a young man in his early 20's who had Type I (Juvenile) Diabetes comes to mind.
For the rational, dispassionate observer, that one who had Type I Diabetes needed careful planing of every day that included diet, exercise, and insulin in order to avoid complications and decreased quality of life would be obvious. But for the individual who had spent most of his youth dealing with the disease, forced on him through no deed or will of his own, and having what most of us expect, a "normal" childhood, constantly interrupted with care-taking activities had become more than his psyche would tolerate. So he quit. He just quit.
Of course it didn't take long for him to land in the hospital. I saw him only twice. Once, when he came in with an unstable blood sugar that took days to bring down, along with the usual counseling and education attempts, all falling on deaf ears. And later, just a year later, when he was admitted to the ICU where a cardiac condition had emerged as a result of the abuse his body had experienced d;uring his frequent forrays off his diet.
He left a singular impression on me, as I wondered what would happen to him in time. Now as I look at all of us, I wonder what is unnecessary for us to experience if we become educated, if we exercise, watch our diets, and fight the oppressor which seeks to rob us of our "normalcy".
Recent circumstances led me through a path of retreat. Some events relative to the day-to-day management of resources and needs were especially taxing, and largely uncontrollable. It seemed resources were far beneath the needs we had. That was stressful. As my spouse and I, now veterans at this type to things, told ourselves, "This will pass." And it did, leaving a shortfall that will extend into the coming year, but will inevitably be filled and rectified, since that is what we do.
Two of my best girlfriends found an excuse to get me out of town, paying for my plane ticket and my stay at a beautiful hotel in a pearl of a city, Milwaukee, as we celebrated an accomplishment we had achieved as a group. It was a lovely week, and one of the girls kept me in physical shape, ensuring I made countless trips up and down the dramatic staircase of the hotel. I felt good while away.
But when I returned to the routine at home it was clear to me that my family, each of whom I love, were a bit taxing, starting with the grumpy man I have tried to negotiate sleep with. He has spent years telling me who cranked up their noisy truck, car, or motorcycle at what hour of the morning. Followed by, after I began the cycle that lead to my diagnosis with PD, a litany of how many times I had awakened him, however briefly, with talking, blowing bubbles, as he calls my frequent breathing noises, or occasional outright snoring. This is the same man who I dragged to the allergist to get the injections needed in order for him to live a normal life by day, and to be able to go to bed without making thunderous snoring noises all night long.
So his own reasons for sleep disturbance settled, he focused on mine, and the past year I have slept nearly everywhere in the house in an attempt to get away from the feeling that I might keep him awake. After the girlfriend trip in which I quizzed my honest and truthful room mate and she reported low and brief outbursts of sleep-talking, I realized that I was so stressed about my spouse's complaints that it had become nearly impossible for me to sleep at all. I reclaimed my place in the comfortable temperapedic bed next to him, told him that one of us should move to the couch if the other kept them up with snoring or talking, and saw my family doctor to explore his next suggestion about sleep.
My Neurologist had declared Klonipin off limits, which just seemed strange. Her nurse sort of hissed at me that it was a controlled substance. Which is an untruth. You do not get a triplicate form when you get a script for Klonipin, and it is commonly used for Parkinson's patients. Twice I asked my Neurologist directly what the problem was with Klonipin and she replied that it could be habit forming.
I wondered to myself whether or not not-sleeping was also habit forming. She offered NO alternative. About six weeks went by without more that a single night here or there in which I got what I considered a reasonable night of sleep.
So, of course, my Parkinson's symptoms have worsened significantly. the Sinimet no longer works as well as it did. Especially late in the day I have tremors again in my right hand, which also feels crampy. I have restless leg syndrome now. My voice is low and cracking. My eyes are so dry I need to use gel at night or face eyes so dry that I need to massage them to spread tears before I open then. They won't open otherwise. (My Neurologist shrugged and said to use a moisturizing drops instead or "artificial tears" when I asked what to do about the horribly dry eyes. Do I need to start looking? Maybe for now the occasional drive is worth it to see my original Neurologist.)
I developed a sty after the over-the-counter moisturizing drops didn't help. As no one holds clinic on the weekend I will get a bill for the ER and now to an Ophthalmologist as it became swollen, red, and itchy. Ten days later it was somewhat better on the antibiotic it was treated with, but not gone. So to the specialist who offered gel at night, a better moisturizing drop for the day, and punctal plugs if not improved. I am wondering, does my Neurologist not take a wholeistic approach as my Internist does?
I'm trying to keep a positive attitude when in truth, I'm a trifle depressed. Old situations have come to haunt me. The whole past month has been a downward spiral of night after night with sleep disturbance and meds not working well. Oddly my family physician, and Internist, is more interested in seeing that I get sleep than my Neurologist, who has a disconnect in seeing the effect of chronic sleep disorder and progression of the disease.
For that reason we are traveling this evening to a Young Onset group meeting at which an authority will speak on sleep disturbance in PD.
My spouse is a cancer survivor with 14 years Stage IV Melanoma under his belt. He wanted to live very badly. He was a great fighter. He was motivated, and instinctively knew what to do. We survived the death of a beautiful 16 year old daughter together, a lot of the petty things I held against him, as above, no longer part of a score card, but just a simple statement of this-is-how-I-was and this-is-how-he-was.
I hope we are turning a corner, and can learn how to support one another through the constant changes that lay before us. Hope is a good word.
.
For the rational, dispassionate observer, that one who had Type I Diabetes needed careful planing of every day that included diet, exercise, and insulin in order to avoid complications and decreased quality of life would be obvious. But for the individual who had spent most of his youth dealing with the disease, forced on him through no deed or will of his own, and having what most of us expect, a "normal" childhood, constantly interrupted with care-taking activities had become more than his psyche would tolerate. So he quit. He just quit.
Of course it didn't take long for him to land in the hospital. I saw him only twice. Once, when he came in with an unstable blood sugar that took days to bring down, along with the usual counseling and education attempts, all falling on deaf ears. And later, just a year later, when he was admitted to the ICU where a cardiac condition had emerged as a result of the abuse his body had experienced d;uring his frequent forrays off his diet.
He left a singular impression on me, as I wondered what would happen to him in time. Now as I look at all of us, I wonder what is unnecessary for us to experience if we become educated, if we exercise, watch our diets, and fight the oppressor which seeks to rob us of our "normalcy".
Recent circumstances led me through a path of retreat. Some events relative to the day-to-day management of resources and needs were especially taxing, and largely uncontrollable. It seemed resources were far beneath the needs we had. That was stressful. As my spouse and I, now veterans at this type to things, told ourselves, "This will pass." And it did, leaving a shortfall that will extend into the coming year, but will inevitably be filled and rectified, since that is what we do.
Two of my best girlfriends found an excuse to get me out of town, paying for my plane ticket and my stay at a beautiful hotel in a pearl of a city, Milwaukee, as we celebrated an accomplishment we had achieved as a group. It was a lovely week, and one of the girls kept me in physical shape, ensuring I made countless trips up and down the dramatic staircase of the hotel. I felt good while away.
But when I returned to the routine at home it was clear to me that my family, each of whom I love, were a bit taxing, starting with the grumpy man I have tried to negotiate sleep with. He has spent years telling me who cranked up their noisy truck, car, or motorcycle at what hour of the morning. Followed by, after I began the cycle that lead to my diagnosis with PD, a litany of how many times I had awakened him, however briefly, with talking, blowing bubbles, as he calls my frequent breathing noises, or occasional outright snoring. This is the same man who I dragged to the allergist to get the injections needed in order for him to live a normal life by day, and to be able to go to bed without making thunderous snoring noises all night long.
So his own reasons for sleep disturbance settled, he focused on mine, and the past year I have slept nearly everywhere in the house in an attempt to get away from the feeling that I might keep him awake. After the girlfriend trip in which I quizzed my honest and truthful room mate and she reported low and brief outbursts of sleep-talking, I realized that I was so stressed about my spouse's complaints that it had become nearly impossible for me to sleep at all. I reclaimed my place in the comfortable temperapedic bed next to him, told him that one of us should move to the couch if the other kept them up with snoring or talking, and saw my family doctor to explore his next suggestion about sleep.
My Neurologist had declared Klonipin off limits, which just seemed strange. Her nurse sort of hissed at me that it was a controlled substance. Which is an untruth. You do not get a triplicate form when you get a script for Klonipin, and it is commonly used for Parkinson's patients. Twice I asked my Neurologist directly what the problem was with Klonipin and she replied that it could be habit forming.
I wondered to myself whether or not not-sleeping was also habit forming. She offered NO alternative. About six weeks went by without more that a single night here or there in which I got what I considered a reasonable night of sleep.
So, of course, my Parkinson's symptoms have worsened significantly. the Sinimet no longer works as well as it did. Especially late in the day I have tremors again in my right hand, which also feels crampy. I have restless leg syndrome now. My voice is low and cracking. My eyes are so dry I need to use gel at night or face eyes so dry that I need to massage them to spread tears before I open then. They won't open otherwise. (My Neurologist shrugged and said to use a moisturizing drops instead or "artificial tears" when I asked what to do about the horribly dry eyes. Do I need to start looking? Maybe for now the occasional drive is worth it to see my original Neurologist.)
I developed a sty after the over-the-counter moisturizing drops didn't help. As no one holds clinic on the weekend I will get a bill for the ER and now to an Ophthalmologist as it became swollen, red, and itchy. Ten days later it was somewhat better on the antibiotic it was treated with, but not gone. So to the specialist who offered gel at night, a better moisturizing drop for the day, and punctal plugs if not improved. I am wondering, does my Neurologist not take a wholeistic approach as my Internist does?
I'm trying to keep a positive attitude when in truth, I'm a trifle depressed. Old situations have come to haunt me. The whole past month has been a downward spiral of night after night with sleep disturbance and meds not working well. Oddly my family physician, and Internist, is more interested in seeing that I get sleep than my Neurologist, who has a disconnect in seeing the effect of chronic sleep disorder and progression of the disease.
For that reason we are traveling this evening to a Young Onset group meeting at which an authority will speak on sleep disturbance in PD.
My spouse is a cancer survivor with 14 years Stage IV Melanoma under his belt. He wanted to live very badly. He was a great fighter. He was motivated, and instinctively knew what to do. We survived the death of a beautiful 16 year old daughter together, a lot of the petty things I held against him, as above, no longer part of a score card, but just a simple statement of this-is-how-I-was and this-is-how-he-was.
I hope we are turning a corner, and can learn how to support one another through the constant changes that lay before us. Hope is a good word.
.
Sunday, October 2, 2011
Sleeping, or not sleeping, and adapting.......
So I think last post was one of splendid peace of mind. Yes, that was it. Acceptance. But that doesn't preclude needing a sort of reality check. So if I'm so peaceful about dealing with Parkinson's then why don't I sleep like a baby?
I've kept a diary over the past several weeks about what it's like to sleep. Last night it was awake about every hour or two for the majority of the night. It's sort of work to try to sleep. You keep your schedule of meds as close as possible to no variation at all, but there are times you get off for one reason or another. And then, as you look back on a certain week or month you are really aware of how stress affects your sleep. Like the Month of the Car, in which out of 4 vehicles parked at our house, only one was running right and that one took a $100 battery just out of the blue. The next month followed with repair bills and the purchase of a newer model car that we really didn't want to do before next year but pre-empted the catastrophic breakdown we knew was coming with >250 K on the old Sentra. So a hard month, admittedly. Two or three times this month I've been wide awake all night, followed by a day or two of just wasted effort in getting through the next day, and another night of fitful sleep as my body settles down.
I've come to accept that a good day has two sort of short naps in it and then the night is less restless. So I don't plan on doing much. The presence of clutter has prompted me to pull everything from my crafting days from my office and label it to be put in a garage sale in the near future. I don't want it anymore, that and a thousand other things that feel like a bag of stones tied around my neck that will cause me to drown if I stumble and fall in the water. I want simplicity, but it is complicated to get rid of all the stuff. I've shredded countless bags of paper only to see more of it that appears to grow while I'm not looking in back corners. It would seem there would be an end to it, as I purge and get rid of old files from years ago. There has to be a point at which it is all gone. But not for now. In the garage are several bank boxes with something in them that I once thought I should keep "just in case" .
The trouble is that to sort through anything requires focus and attention. So, I get up and have a bowl of cereal in the morning, made with soy milk to avoid milk proteins that are intolerable for my system. Then it's time for morning meds. And then it's time to make my spouse's lunch before he goes to work and I for a walk or to the gym. Yes, now I can walk, after all the work with the BIG program. A 3/4 mile walk on the sidewalk will render my right ankle painful and uncomfortable, but it gets better if I persist with the motion so I just do it till I can't bear the discomfort anymore and call it a "good" walk. The gym is preferable but they recently refinished the ball courts and the chemicals should be enough to kill off what little substantia negra I have left.
The gym provides a complete workout and a suspended wooden track that prevents the pressure on knees and ankles that the sidewalk causes. So I'm going back this week hoping to find it is at last aired out enough to tolerate it. There are stretches and strengthening exercises to do, then the core exercises and balances exercises, followed by a walk around the track. By then it is about 10 30 and time to go home for a shower.
Then I walk out and blink at the office. I am getting pretty sleepy; the meds will have peaked now and I will be sleepy, groggy, and need a little nap. After the nap I'll put on some wash , and then come back to look at the office. Depending on the night's sleep, I might be able to work for an hour or two before having a bowl of tuna salad and a drink of water. This is my routine. By that time it is about 1:30 and I need to take the next dose of carbolevadopa. So I do.
I turn on the news or check my email. I'm trying to sell off the china from my failed antique booth "business" that followed the attempt to make greeting cards, also sold at the booth that morphed into an art deco 20's and 30's china booth that no one in this area really appreciated. I need to live in Wales. But I don't want to do the bookkeeping for any business at all. It makes me stressed and crazy. I just want to get 1/4 of the $ I put into the stuff back, just for the principal of it.
But where was I... Ah, yes, cleaning out the office. I've bought boxes just the right size for a small file of 8 1/2 x 11 sheets to fit in, and nice and neat. I can label them with what's inside and keep organized that way. That will work only if I purge the old paper. I'm trying, I'm trying. I pull out all the junk from making greeting cards. And I sort through another box, emptying more and more. Where do these other boxes come from, I wonder. 22+ years in this house alone. Or not alone. With 5 kids and a spouse and several pets. That's where. That reminds me, I will need to go through the pet folder someday and purge all the files on the pets we have outlived.
It's time for the afternoon nap. I can barely keep my eyes open. I sleep from 330 to 4 and wake feeling tireder than when I went to bed. Why is that, I wonder, but once up and breathing in oxygen deeply it is better, so am able to think it is time to start some supper. If needed it's time to go to the store, so away to pick up fresh fruit or vegetables. Then home for supper.
At night I watch NCIS reruns with my hubby, our one vice, but never any action or spy movies that aren't comedies before bed. Then it is time to go to bed and do this all over again. In a month or so I think I will be done going though the paper and maybe then can do what I've always wanted to do: family history. Right now just concentrating on getting there.
I've kept a diary over the past several weeks about what it's like to sleep. Last night it was awake about every hour or two for the majority of the night. It's sort of work to try to sleep. You keep your schedule of meds as close as possible to no variation at all, but there are times you get off for one reason or another. And then, as you look back on a certain week or month you are really aware of how stress affects your sleep. Like the Month of the Car, in which out of 4 vehicles parked at our house, only one was running right and that one took a $100 battery just out of the blue. The next month followed with repair bills and the purchase of a newer model car that we really didn't want to do before next year but pre-empted the catastrophic breakdown we knew was coming with >250 K on the old Sentra. So a hard month, admittedly. Two or three times this month I've been wide awake all night, followed by a day or two of just wasted effort in getting through the next day, and another night of fitful sleep as my body settles down.
I've come to accept that a good day has two sort of short naps in it and then the night is less restless. So I don't plan on doing much. The presence of clutter has prompted me to pull everything from my crafting days from my office and label it to be put in a garage sale in the near future. I don't want it anymore, that and a thousand other things that feel like a bag of stones tied around my neck that will cause me to drown if I stumble and fall in the water. I want simplicity, but it is complicated to get rid of all the stuff. I've shredded countless bags of paper only to see more of it that appears to grow while I'm not looking in back corners. It would seem there would be an end to it, as I purge and get rid of old files from years ago. There has to be a point at which it is all gone. But not for now. In the garage are several bank boxes with something in them that I once thought I should keep "just in case" .
The trouble is that to sort through anything requires focus and attention. So, I get up and have a bowl of cereal in the morning, made with soy milk to avoid milk proteins that are intolerable for my system. Then it's time for morning meds. And then it's time to make my spouse's lunch before he goes to work and I for a walk or to the gym. Yes, now I can walk, after all the work with the BIG program. A 3/4 mile walk on the sidewalk will render my right ankle painful and uncomfortable, but it gets better if I persist with the motion so I just do it till I can't bear the discomfort anymore and call it a "good" walk. The gym is preferable but they recently refinished the ball courts and the chemicals should be enough to kill off what little substantia negra I have left.
The gym provides a complete workout and a suspended wooden track that prevents the pressure on knees and ankles that the sidewalk causes. So I'm going back this week hoping to find it is at last aired out enough to tolerate it. There are stretches and strengthening exercises to do, then the core exercises and balances exercises, followed by a walk around the track. By then it is about 10 30 and time to go home for a shower.
Then I walk out and blink at the office. I am getting pretty sleepy; the meds will have peaked now and I will be sleepy, groggy, and need a little nap. After the nap I'll put on some wash , and then come back to look at the office. Depending on the night's sleep, I might be able to work for an hour or two before having a bowl of tuna salad and a drink of water. This is my routine. By that time it is about 1:30 and I need to take the next dose of carbolevadopa. So I do.
I turn on the news or check my email. I'm trying to sell off the china from my failed antique booth "business" that followed the attempt to make greeting cards, also sold at the booth that morphed into an art deco 20's and 30's china booth that no one in this area really appreciated. I need to live in Wales. But I don't want to do the bookkeeping for any business at all. It makes me stressed and crazy. I just want to get 1/4 of the $ I put into the stuff back, just for the principal of it.
But where was I... Ah, yes, cleaning out the office. I've bought boxes just the right size for a small file of 8 1/2 x 11 sheets to fit in, and nice and neat. I can label them with what's inside and keep organized that way. That will work only if I purge the old paper. I'm trying, I'm trying. I pull out all the junk from making greeting cards. And I sort through another box, emptying more and more. Where do these other boxes come from, I wonder. 22+ years in this house alone. Or not alone. With 5 kids and a spouse and several pets. That's where. That reminds me, I will need to go through the pet folder someday and purge all the files on the pets we have outlived.
It's time for the afternoon nap. I can barely keep my eyes open. I sleep from 330 to 4 and wake feeling tireder than when I went to bed. Why is that, I wonder, but once up and breathing in oxygen deeply it is better, so am able to think it is time to start some supper. If needed it's time to go to the store, so away to pick up fresh fruit or vegetables. Then home for supper.
At night I watch NCIS reruns with my hubby, our one vice, but never any action or spy movies that aren't comedies before bed. Then it is time to go to bed and do this all over again. In a month or so I think I will be done going though the paper and maybe then can do what I've always wanted to do: family history. Right now just concentrating on getting there.
Tuesday, June 14, 2011
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.
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.
Friday, June 3, 2011
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.
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.
Sunday, May 8, 2011
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.
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.
Wednesday, April 6, 2011
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.
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.
Thursday, February 24, 2011
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.
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.
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