Tonight I was convinced by a friend to write a biography, seem kind of strange to think I have that much to say about myself, but it has been an interesting life I guess. My pretending to fly a rocketship 5 years before sputnik. My stealing an airplane at 13 and the aftermath of that, which truly set my life in motion. Being bullied and the butt of jokes through jr and sr high. My life as a pilot, raising a family and not doing so well at that. Then falling in Love again and spending the last 19 years with the love of my life. Being diagnosed with parkinson's and the effect on my life.
To be very clear I loved the mother of my children too but we both changed, and life as it does throws us curves we never see coming. I have as friends some of the best people I have ever met and I have met and shaken hands with some of the most intetesting people on the planet. I can honestly say I have been one hand shake away from some of the most powerful leaders on the earth. I have had as passengers some of the biggest stars and every person who ever flew with me got the best I had to give.
The life I have led so far has been very rewarding, the life I am embarking on now is filled with anguish and fear. I am doing this for my children and grandchildren. I was not always there when I should have been, or wished I could have been. The story is a long one and not always a happy one. I am going to try to remember all the big events and as many of the ones that seemed little at the timebut still had an impact. So all I can say is I will be as honest as I can in my memories and will try not to hurt anyone.
This will be the story of my life. Not a NY TIMES best seller but it will be my life. From a child who dreampt of flying to my headlong desent into parkinson's and it's own house of horrors. Lookong back to when I first felt something was "not right" until the present. From the day we are concieved until the day we die it is a crap shoot. Highs and lows here we go.
Parts I will share here, others you will just have to wait for the movie version.
Tuesday, April 22, 2014
Monday, April 21, 2014
Screaming on the inside
I'm sorry for not getting back with you all sooner but like most this has been the mother of winters. So much going on so much staying the same. I feel my Parkinson's has been progressing, Shelleys hands aren't doing that well. My woodworking has slowed to a crawl and to those I have the biggest connection with I've let down.
I found out at some point in all this I had a "minor" stroke and on my brain MRI things are stable, what ever the hell that means. The Parkinson's meds aren't doing all that much I think and I believe also my dr thinks it is more. He mentioned MSA or multiple system atrophy. It is as scary as it sounds but only time will tell. Like with all this its time, waiting for another shoe to drop.
On one of the web sites I go to there is a fair amount of depression going on, which brings me to my point. I have been screaming out at something that has no interest in me or any other sick person....my disease. I do it not because it does any good but because I need a place to just scream. A Internet friend apologized to night for here crying out. Maybe afraid she thought we were thinking she wanted sympathy. I know thats not the case. We all with this need to cry out once in a while. It can only be done with those who are living it or living with it. It isn't crying or looking for sympathy it is just being who we are.
When I was a kid I saw a Vincent Price movir called " The Tingler", a movie that scsred the hell out of me. About a guy that believed if we couldn't scream we couldn't let go of fear and it would kill us. He had devided to kill his mute wife that way. She couldn't scream so this part of her a part in her spine called the tingler would grow so strong it would kill her. Simply because she could not scream, not let out the fear.
I have discovered that it's true, you have to have a placeto just cry out every once and again. I have never played the "why me" card. I have just accepted that it is what it is. I certainly can't get mad at " God", he has atleast on universe to run with maybe trillions of life form. But that night I really had no place to yell. Shit. I can't yell at my wife, not her fault,although sometimes I fear I might take it out on her I really try not too. She is dealing with something I need to be there for her with.
My main thought is that we all need a place to cry out to, even if no one appears to be listening we have to try. We all have pain, do we shout or do we just let it consume us. I have never been good at turning to friends, but then why have them. Even if they are only a name on a screen. On that I think I need that now more than ever. I do have some great friends that I will be seeing in the next couple of months.
I found out at some point in all this I had a "minor" stroke and on my brain MRI things are stable, what ever the hell that means. The Parkinson's meds aren't doing all that much I think and I believe also my dr thinks it is more. He mentioned MSA or multiple system atrophy. It is as scary as it sounds but only time will tell. Like with all this its time, waiting for another shoe to drop.
On one of the web sites I go to there is a fair amount of depression going on, which brings me to my point. I have been screaming out at something that has no interest in me or any other sick person....my disease. I do it not because it does any good but because I need a place to just scream. A Internet friend apologized to night for here crying out. Maybe afraid she thought we were thinking she wanted sympathy. I know thats not the case. We all with this need to cry out once in a while. It can only be done with those who are living it or living with it. It isn't crying or looking for sympathy it is just being who we are.
When I was a kid I saw a Vincent Price movir called " The Tingler", a movie that scsred the hell out of me. About a guy that believed if we couldn't scream we couldn't let go of fear and it would kill us. He had devided to kill his mute wife that way. She couldn't scream so this part of her a part in her spine called the tingler would grow so strong it would kill her. Simply because she could not scream, not let out the fear.
I have discovered that it's true, you have to have a placeto just cry out every once and again. I have never played the "why me" card. I have just accepted that it is what it is. I certainly can't get mad at " God", he has atleast on universe to run with maybe trillions of life form. But that night I really had no place to yell. Shit. I can't yell at my wife, not her fault,although sometimes I fear I might take it out on her I really try not too. She is dealing with something I need to be there for her with.
My main thought is that we all need a place to cry out to, even if no one appears to be listening we have to try. We all have pain, do we shout or do we just let it consume us. I have never been good at turning to friends, but then why have them. Even if they are only a name on a screen. On that I think I need that now more than ever. I do have some great friends that I will be seeing in the next couple of months.
It is time to go and see them, our land sailer and dingy are ready.
Saturday, March 15, 2014
a hodgepodge of stay awake stuff
This has been such a long month, make that nearly 3. Ever since my wife had here double carpal tunnel surgery it has been one thing after another. The cold has made working in the shop impossible, having to do nearly everything for her, my Parkinsons and now the two animals that we may lose due to their age and sickness has just been pushing so hard. I know many many Po eople have it worse I guess I just get to write out my thoughts her.
It has been 3 months since Shelley's surgery, she should be back to full functionality by now. Her physical therapy technician told her today she has about 30% of her use in her hands. She has constant radiation pain syndrome which will only get worse. After 3 months I still need to open water bottles, pet for cans andhelp her dress and undress. She can drive short distances but after a bit the pain gets too much. I have become her hands in many cases.
Nesta on of the two cats we got before we were married is having severe bladder and kidney issues. We may have to put he down very soon. Don't know what that will do to her sister. When we got them from my daughter she didn't want to separate them ñ from birth they have always been together. I'm worried for her.
Carmen our oldest dog has been under the weather, we took her in and they found what appears to be a tumor near her spleen. To find out if it is a tumor will cost 1000.00 just to know and that includes no treatment. She is already 12 or 13 years old so all we can do is make her as comfortable as possible.
My Parkinsons seems to be progressing, I have one pretty good day followed by a bad day. The bad days sre mostly fatigue, stiffness and pain. On the 11th of this month I spent 2 hours in an MRI tube. Nurse called next morning to say they are stable from befor. However there were multiple defects noted. I tried to ask but she said doctor would discuss everything on fallowup. He's on vacation now. One MRI was a brain scan, we were told then there were no defects noted
The other was my cervical spine. That was before my neck surgery for a complete blockage of C3-6 allowing no spinal fluid to circulate,so was that stable. I guess we wait another 12 days to find out.
So things have been a bit down lately but we are fixing up the truck and camper getting ready to travel and try to put this life stuff on the back burner for a whilr. Just how much camping depend. I still have some wood working projects to finish but I think we will be passing on the farmers markets this year. Sounds like my girl's will ne coming at the end of the month with the great granddaughter. In may we are planning a trip to Sioux Falls and Rapid city South Dakota to see some very dear friends. We may look a little like walking wounded but we do ok, and like I said there are many folks worse off. Lucky me I have a place to whine, in fact I might just have a spot more.
It has been 3 months since Shelley's surgery, she should be back to full functionality by now. Her physical therapy technician told her today she has about 30% of her use in her hands. She has constant radiation pain syndrome which will only get worse. After 3 months I still need to open water bottles, pet for cans andhelp her dress and undress. She can drive short distances but after a bit the pain gets too much. I have become her hands in many cases.
Nesta on of the two cats we got before we were married is having severe bladder and kidney issues. We may have to put he down very soon. Don't know what that will do to her sister. When we got them from my daughter she didn't want to separate them ñ from birth they have always been together. I'm worried for her.
Carmen our oldest dog has been under the weather, we took her in and they found what appears to be a tumor near her spleen. To find out if it is a tumor will cost 1000.00 just to know and that includes no treatment. She is already 12 or 13 years old so all we can do is make her as comfortable as possible.
My Parkinsons seems to be progressing, I have one pretty good day followed by a bad day. The bad days sre mostly fatigue, stiffness and pain. On the 11th of this month I spent 2 hours in an MRI tube. Nurse called next morning to say they are stable from befor. However there were multiple defects noted. I tried to ask but she said doctor would discuss everything on fallowup. He's on vacation now. One MRI was a brain scan, we were told then there were no defects noted
The other was my cervical spine. That was before my neck surgery for a complete blockage of C3-6 allowing no spinal fluid to circulate,so was that stable. I guess we wait another 12 days to find out.
So things have been a bit down lately but we are fixing up the truck and camper getting ready to travel and try to put this life stuff on the back burner for a whilr. Just how much camping depend. I still have some wood working projects to finish but I think we will be passing on the farmers markets this year. Sounds like my girl's will ne coming at the end of the month with the great granddaughter. In may we are planning a trip to Sioux Falls and Rapid city South Dakota to see some very dear friends. We may look a little like walking wounded but we do ok, and like I said there are many folks worse off. Lucky me I have a place to whine, in fact I might just have a spot more.
Thursday, March 6, 2014
Thinking about the future
The future is not something we have spent much time thinking of lately not that we felt we didn't have one, but because we were so unsure of what was ahead. We still are unsure but we decided we can't wait for it to decide for us. The time goes by so fast if we wait any longer it will be the past and we will have wasted what time we have to do what we can.
It is time to make a decision do we just wait and wish we had or do we continue on with life. We decided to go our original plan was to sail away but sailing is out of the question, we have a camper, we have a truck, and I see a very big garage sale in the future. We've decided to go land sailing as we call it. My health will only get worse,slowly we hope, but who knows. We need to do this while we can both enjoy it. Shelley has developed CRPS in both wrist, if we wait we just wont be able to do anything.
So as of now we are going to prepare to travel as best and as long as we can. We'll box and store what we want to keep and sell as much as we can. If we can sell enough we'll get a small motor home, if not the truck and camper will do.
Life is to short to look back and say we missed our chance we don't know how much good time we have,but then no one does, so we need to make the best of what we are given. What we are hoping to do is first head to Nova Scotia cross Canada to B.C. then down through Washington, Oregon, California to the Baja of California. Then who knows, it's warm there.
I have a few projects to finish and then....
As soon as we can sell this house it will be time to get our asses in gear.
It is time to make a decision do we just wait and wish we had or do we continue on with life. We decided to go our original plan was to sail away but sailing is out of the question, we have a camper, we have a truck, and I see a very big garage sale in the future. We've decided to go land sailing as we call it. My health will only get worse,slowly we hope, but who knows. We need to do this while we can both enjoy it. Shelley has developed CRPS in both wrist, if we wait we just wont be able to do anything.
So as of now we are going to prepare to travel as best and as long as we can. We'll box and store what we want to keep and sell as much as we can. If we can sell enough we'll get a small motor home, if not the truck and camper will do.
Life is to short to look back and say we missed our chance we don't know how much good time we have,but then no one does, so we need to make the best of what we are given. What we are hoping to do is first head to Nova Scotia cross Canada to B.C. then down through Washington, Oregon, California to the Baja of California. Then who knows, it's warm there.
I have a few projects to finish and then....
As soon as we can sell this house it will be time to get our asses in gear.
Monday, February 17, 2014
paying it foward help group
One of the things I worry so much about is people who would take advantage of the vulnerable in our world, I need to make sure that doesn't happen. There must be a way to protect identities. For both parties. It will have to be a sort of membership system. How do we do that, I don't know yet but I will work on it. I feel very strongly about this.
Saturday, February 15, 2014
Find a way to help each other
I read a post from an online friend today that got me thinking, and I think it applies in a lot of ways. She had to install a new well pump, didn't know all the ins and out but got it in. Then it wouldn't pump turns out it needed to be primed. Sure enough the was a nut to open to allow the pump to be primed but she was unable to do it. She called everyone she could think of. No one would help. She said to a plumber she could pay when she got her disability check, the plumber said "call me then". No community groups would help, no one, so I was thinking about a way we could each other. There has to be away of getting together people willing to help with those that need it but in a way that we support each other. At one time or another we all need a helping hand, but what if we can do it as a barter system.
There are still things I can do, but plenty I can't so what if we trade somehow. People on disability rarely have the money for every emergency that comes along, but had I been close I sure as hell could have found the time to loosen a bolt for someone.
I am really talking to the community of disabled folks out there, we pretty much all have something we can do, it may seem very small to you, but it just might be the thing someone else really needs help with. Maybe we just somehow set up a community style bulletin board. Something simple, which is not at all simple. I see many problems, but not as big as doing nothing. In these times when every government office is cutting everything they can to help people it would be so simple if you are able to do that one little thing someone needs if you just knew they needed it. I have a website that I would be more than willing to devote some space to for this, but no one should have to go without simple things we can help each other with because they can't get a hand from someone willing to give a few moments of time.
I know there are many hurdles to something like this, suggestions and ideas would be greatly appreciated. No businesses looking to make a buck or find a way to look for more, simply and strictly a barter type system. My one great fear is scammers and
sceemers., we are talking about just helping each other. If there is an interest there is a way.
Let me know.
There are still things I can do, but plenty I can't so what if we trade somehow. People on disability rarely have the money for every emergency that comes along, but had I been close I sure as hell could have found the time to loosen a bolt for someone.
I am really talking to the community of disabled folks out there, we pretty much all have something we can do, it may seem very small to you, but it just might be the thing someone else really needs help with. Maybe we just somehow set up a community style bulletin board. Something simple, which is not at all simple. I see many problems, but not as big as doing nothing. In these times when every government office is cutting everything they can to help people it would be so simple if you are able to do that one little thing someone needs if you just knew they needed it. I have a website that I would be more than willing to devote some space to for this, but no one should have to go without simple things we can help each other with because they can't get a hand from someone willing to give a few moments of time.
I know there are many hurdles to something like this, suggestions and ideas would be greatly appreciated. No businesses looking to make a buck or find a way to look for more, simply and strictly a barter type system. My one great fear is scammers and
sceemers., we are talking about just helping each other. If there is an interest there is a way.
Let me know.
Tuesday, January 28, 2014
Our way out
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"
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"
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