This is not an original title by any means, or even idea, but yesterday on a forum I visit everyday I saw a thread about a woman who had suffered with Parkinson's for many years. It was to say the least very touching. I want it clear I never knew this woman, and I am repeating a story. A friend of mine whom I have only talked to on the forum told the story and it struck very deep.
Today I received a copy of the book it was written in. The book is called ,"The Peripatetic Pursuit of Parkinson's Disease". The woman after years of living with Parkinson's had developed a form of cancer. We don't get just one thing in life to deal with, the longer we are here the more there is. She discussed options with her Dr and came to a decision. Seems Drs don't generally take all the treatment they prescribe for their patience and she did what the Dr said he would have done, she opted for radiation to reduce the size of the tumour, cashed in her life insurance policy and decided to travel. Unfortunately she never was able to travel. The thing is when she developed cancer, it was her way out.
Now I have really paraphrased this story greatly, much more than it deserves and for that I apologize to everyone connected, but her story is only a starting point for this. After I saw the thread yesterday the book that I ordered came today, I was so happy to see it, Shelley, my wife said she has never heard me sound so excited opening a package. I found that story and had her read it. Afterwords with tears in our eyes we hugged, held on tight for a while, and softly almost inaudible she said,"are you scared?" The best I could do was kind of gurgle a yes, she said she was to we hugged and sobbed, composed ourselves and made dinner.
The thing with Parkinson's is there is no cure, I could be given a diagnosis of cancer tomorrow and have a chance, I could have a heart attack and get a bypass operation and be fine. With this there is no chance of either at this point. When the woman in the story found out she had cancer she knew her "way out." Most of us with Parkinson's will not die from it, it will be something else, pneumonia perhaps, but all the pills and all the exercise programs in the world will not stop the progression of this disease. It may help slow it a bit, but like all neurological diseases there is no stopping. Some live long and productive lives, some live a fast terrible decline.
So far as I can tell I seem to be one with a rather slow decline, my first symptoms started about 15 years or so ago hopefully it will stay that way, but her story did hit home. As our population grows there will be more and more of us with neurological diseases. It is thought that Parkinson's can be caused by exposure to certain chemicals ans solvents. The incidents of Parkinson's I's highest in the rust belt, if we let people like the Koch bros.have their way and do away with water protection and allow got the continued expansion of fracking, limit research, those of us with these types of diseases will continue to increase.
As long as profit over caution rules,as long as we continue to fight against the right of people to healthcare, and make the dumbing down of our children more important than knowledge we will continue to deteriorate. If we continue on the path of denying simple scientific fact each of us will be looking for our "own way out"
Tuesday, January 28, 2014
Friday, January 10, 2014
My Christmas story
After a very long and fruitful discussion on holiday travel and visiting things went rather well this year. A week or so brfore.Christmas we did the.trip to the in-laws, went ok, came home, Thursday before Christmas my wife had carpal tunnel surgery in both hands, so I became the caregiver,I hope I'm never that demanding...only kidding, my poor wife could do almost nothing for herself, but we got through it. Her mother had to come and drive her the 80 mile round trip for surgery. Her mother is Iin her 80s and for the first time I really felt helpless, but I made up for it. Her mother came back the day after Christmas and stayed with us till the day after New Years, and it couldn't have been more pleasant. I got some work done my wife was well cared for, her mothers visit was extended by Wisconsin weather, but all went well. The real story came on Saturday after Christmas, I am still allowed to drive to town 7 miles away or to the town dump about 3 miles away. So coming home from the dump a mile or so from the nearest house walking along the road looking quitescared was a young puppy. I drove by at first but it just didn't seem right, it was to young AND to to far from anywhere, I turned around and after about 30 and half dozen wurthers candies I got her to trust me, got her in my truck and took her home. The temp that night was forecast to be-11, she never would have survived. She was just a pup, but had already had puppies, I was starting to get mad at someone. We called the sheriff, we called the humane society, twice. Once to.report her, and once to ask if we could hold her until someone called about her, we were told sure, and if no one claims her we could keep her after 7days, which was up last fFriday. Friday we took her to our vet, no micro chip, no inquires about her, Sofie is now sleeping at this minute on our bed. Last May I lost my best friend a beagle corgi mix, Sofie is a beagle bassett hound mix, and loves our other two, a beagle fox hound mix and a corgi. Carmen and Lucy. I felt like a kid bringing home a lost puppy. We think she either escaped from a puppy mill, I think she was way to young to be bred or she was a drop off in the country. Either way we saved a life, and I got my best Christmas present ever. Not much to do with pd, but then neither do the really good things in life.
I
Wednesday, January 1, 2014
Do I really have Parkinson;s, and more
I have asked myself this so many times, the same things, the same reasons, the only answer I can come up with is.......yes. I just think back over the last 15 years and look at what has happened and what has changed. The list is almost frightening.
1. Balance, I was an avid sailor, airline pilot. I could strut through a terminal or a boat yard, and people would see confidence in every step. Now I walk through my house from handhold to hand hold, shuffle through Wal-Mart like an old man who is afraid to take a BIG step.
2. Although as a pilot I had a very varied sleep pattern, I slept, I got rested, I never needed to nap, now I need to sometimes twice a day.\
3 I loved to cook, I could copy restaurant recipes by taste and smell, now I can't smell fresh herbs or spices or tell the difference from cardboard. I do still smell a few things. I used to love salmon, now the smell makes me sick. I can no longer smell a fresh mowed lawn, I recently walked through a horse barn and didn't notice the smell. And on and on..
4. When I had my boat I could bend and twist and squeeze into the engine compartment, now I can barely bend well enough to get into a passenger seat in a car.
5. When I lay down to rest, I t feel like I was shaking apart on the inside, I still don't have a "visible" tremor, I stress visible, the invisible ones are every bit as real and as draining
6. I used to be able to have and enjoy sex
7. It was never a calendar event to have a bowel movement
The unfortunate part is that this list goes on and on, it is never one thing, it is the everyday thongs that don't work. I just went for physical therapy for Parkinson's and did the exercises in the "Big" part of Big and Loud. The therapist said we had to train our brains to do what we once did, by concentrating we could strut like I once did through the terminal. He was right, for a few steps I did, my wife saw it. But the effort it took, drained me. I could kind of do the exercises along with him, but as soon as they were over, I was the new and degenerating me again. As I lay he re at 3:15 am thinking about this, knowing the only thing that gets me mobile in the morning is my handful of pills, and the only thing that allows me to sleep are more pills, I know it's Parkinson's, what else could take and take and respond to only one pill, or specific bunch of pills. My voice grows softer, my face less expressive, my typing worse my handwriting illegible, and my ability to find the word I'm looking for more difficult, what else could it be. What else could sap the joy out of life by robbing my body of the brain chemical for joy and enjoyment, control of my body, it must be either some new unheard of illness, or it is Parkinson's. On the days I feel good, I don't for a minute believe I have Parkinson's, right now as I lay here in bed, hurting, thinking, and remembering, I know the truth, it's Parkinson's. Always hope, Always believe it will get better, but I think it is best to accept and understand the demon we fight. When I finally got the name of my demon at least I knew who I was fighting, it wasn't something in a made up, am I fooling myself world, it was a true demon named Parkinson's.
To the good days that let us forget for a while.....
Another discussion had was about becoming inconvenient and a burden to family and or care givers. It was really a good discussion and many things were talked about. I was surprised how many felt that they were or will become a burden. I know taking care of anyone with a disease or injury is very hard work. It is demanding, frustrating, and even makes you feel inadequate, but caring for someone you love should never make them feel like caring for them an inconvenience.
When we make a commitment to someone for life, we say we will be there what ever the problem. Not be there until something goes wrong. A commitment is just that, it means doing what it takes to love and care for one and other. In both the good and bad. There was talk about how one person deserved to be cared for more as revenge for a life that was not what was expected, or for some wrong during the marriage. That can only lead to more hard feeling and maybe worse. If you are or with someone who makes caregiving a burden and an inconvenience you need to find someone to help, or maybe just find someone else to do it. I am not so naïve as to believe that care giving is a bed of roses, it is the most demanding thing a person may ever be faced with in their life, caring for someone you love, and watch them deteriorate is a thing hard for most to imagine. In the case of our life I am the one deteriorating, and my we is the one who has to help, and watch me slip away.
I had a chance for a short while to see what being a care giver is like. She had carpal tunnel surgery on both hands and was almost helpless, it wasn't as bad as expected, but still she could do very little. It was very hard, frustrating, and at times I felt inadequate, but I never felt it was a burden. If you love someone it is just one of the things that you do. I had for a time been a caregiver for my best friend at the time. It was a old beagle corgi mix that just got old. He developed diabetes, became blind, and took a lot of care. I did it out of love and the desire to make his life the best I could till the end. As I would do for anyone I love. It is what love is, commitment and giving for the sake of love. I hope that no one has to go through what caregivers do, I am grateful everyday that I have someone to help and care about me, someone who does what she does for me out of love.
I hope to write more often again now that the Holidays are over, which is a whole new blog and I think will be next.
1. Balance, I was an avid sailor, airline pilot. I could strut through a terminal or a boat yard, and people would see confidence in every step. Now I walk through my house from handhold to hand hold, shuffle through Wal-Mart like an old man who is afraid to take a BIG step.
2. Although as a pilot I had a very varied sleep pattern, I slept, I got rested, I never needed to nap, now I need to sometimes twice a day.\
3 I loved to cook, I could copy restaurant recipes by taste and smell, now I can't smell fresh herbs or spices or tell the difference from cardboard. I do still smell a few things. I used to love salmon, now the smell makes me sick. I can no longer smell a fresh mowed lawn, I recently walked through a horse barn and didn't notice the smell. And on and on..
4. When I had my boat I could bend and twist and squeeze into the engine compartment, now I can barely bend well enough to get into a passenger seat in a car.
5. When I lay down to rest, I t feel like I was shaking apart on the inside, I still don't have a "visible" tremor, I stress visible, the invisible ones are every bit as real and as draining
6. I used to be able to have and enjoy sex
7. It was never a calendar event to have a bowel movement
The unfortunate part is that this list goes on and on, it is never one thing, it is the everyday thongs that don't work. I just went for physical therapy for Parkinson's and did the exercises in the "Big" part of Big and Loud. The therapist said we had to train our brains to do what we once did, by concentrating we could strut like I once did through the terminal. He was right, for a few steps I did, my wife saw it. But the effort it took, drained me. I could kind of do the exercises along with him, but as soon as they were over, I was the new and degenerating me again. As I lay he re at 3:15 am thinking about this, knowing the only thing that gets me mobile in the morning is my handful of pills, and the only thing that allows me to sleep are more pills, I know it's Parkinson's, what else could take and take and respond to only one pill, or specific bunch of pills. My voice grows softer, my face less expressive, my typing worse my handwriting illegible, and my ability to find the word I'm looking for more difficult, what else could it be. What else could sap the joy out of life by robbing my body of the brain chemical for joy and enjoyment, control of my body, it must be either some new unheard of illness, or it is Parkinson's. On the days I feel good, I don't for a minute believe I have Parkinson's, right now as I lay here in bed, hurting, thinking, and remembering, I know the truth, it's Parkinson's. Always hope, Always believe it will get better, but I think it is best to accept and understand the demon we fight. When I finally got the name of my demon at least I knew who I was fighting, it wasn't something in a made up, am I fooling myself world, it was a true demon named Parkinson's.
To the good days that let us forget for a while.....
Another discussion had was about becoming inconvenient and a burden to family and or care givers. It was really a good discussion and many things were talked about. I was surprised how many felt that they were or will become a burden. I know taking care of anyone with a disease or injury is very hard work. It is demanding, frustrating, and even makes you feel inadequate, but caring for someone you love should never make them feel like caring for them an inconvenience.
When we make a commitment to someone for life, we say we will be there what ever the problem. Not be there until something goes wrong. A commitment is just that, it means doing what it takes to love and care for one and other. In both the good and bad. There was talk about how one person deserved to be cared for more as revenge for a life that was not what was expected, or for some wrong during the marriage. That can only lead to more hard feeling and maybe worse. If you are or with someone who makes caregiving a burden and an inconvenience you need to find someone to help, or maybe just find someone else to do it. I am not so naïve as to believe that care giving is a bed of roses, it is the most demanding thing a person may ever be faced with in their life, caring for someone you love, and watch them deteriorate is a thing hard for most to imagine. In the case of our life I am the one deteriorating, and my we is the one who has to help, and watch me slip away.
I had a chance for a short while to see what being a care giver is like. She had carpal tunnel surgery on both hands and was almost helpless, it wasn't as bad as expected, but still she could do very little. It was very hard, frustrating, and at times I felt inadequate, but I never felt it was a burden. If you love someone it is just one of the things that you do. I had for a time been a caregiver for my best friend at the time. It was a old beagle corgi mix that just got old. He developed diabetes, became blind, and took a lot of care. I did it out of love and the desire to make his life the best I could till the end. As I would do for anyone I love. It is what love is, commitment and giving for the sake of love. I hope that no one has to go through what caregivers do, I am grateful everyday that I have someone to help and care about me, someone who does what she does for me out of love.
I hope to write more often again now that the Holidays are over, which is a whole new blog and I think will be next.
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