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.
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