Wednesday, September 24, 2014
Why we should not elect Scott Walker
As the Wisconsin State Gubernatorial race looms near I would like to reiterate the facts of why we should not re-elect Scott Walker.
2 days after he was elected in 2010 on a promise of jobs, he renegged on Talgo Industries, who had a signed contract for a high speed rail system between Madison, Milwaukee and Chicago and Talgo had gone ahead starting the implementation of this facility. This deal would have provided almost 5,000 jobs, 40 of which had already been hired, and would have been a big boost to our local economy. Instead, the state of Wisconsin is being sued to the tune of almost $70 million and guess who'll pay for this mistake?? Not Scott Walker! The high speed rail funding has been shifted to other states that have the good sense to accept it.
Act 10 came down on the state like an ax, grinding away at incomes, benefits and health and educational programs. Walker made scapegoats of state employees, insinuating they were not the “real taxpayers”. And as much as he insisted the state was broke, he still found room for more tax cuts! Some of the results of Act 10 are as follows:
State employees took a 5.8% pay cut and now pay twice as much for their health benefits. I know several employees who took early retirement because of Act 10 and there were many more who I didn't know that decided they'd rather leave than work for the state. This caused a shortfall of tax revenues due to the decrease in employment which directly affected Walker's budget. He took $25.6 million out of $31.6 million in federal funding to plug his budget holes. This was federal funding from the nation's largest mortgage lenders that was earmarked for victims of the illegal mortgage practices!
Grants for research were slashed forcing researchers to bail from the UW for lack of funding. This threatens the UW's standing as a premiere research facility in this country.
Almost $900 million cut from education, the deepest cut in the state's history. 74% of school districts have had to lay off teachers, resulting in larger class sizes and compromises in quality of education. Many valuable school programs have been cut, such as music, reading, physical education, special education and drop-out prevention programs. I have spoken to students who were thinking about majoring in Education but changed their minds after Act 10.
$250 million in cuts to the UW system, 30% less funding for community colleges and technical colleges.
Walker tried to reduce state employee retirement packages from pensions to 401(k)'s, but fortunately it was recommended to him to leave them as they are one of the best funded pensions in the country. That, however, doesn't mean he won't try to come after them again if he is re-elected. Another group of employees he has an ax to grind with is county employees. If re-elected, he could go after them.
The final insult from Act 10 is that the Unions agreed to his demands regarding benefit concessions if he would repeal his demands to cut collective bargaining rights. He refused.
Women in Wisconsin should be aware that he repealed a 2009 Equal Pay Enforcement Act. Women make $.75 to every $1.00 men make in Wisconsin and directly affects what benefits they are eligible for. Walker also signed legislation mandating invasive ultrasounds, lectures and other regulations governing women's health. Abortion is a hot-button issue, but this bill also killed free breast cancer and cervical cancer screenings for women and mandated that insurance companies no longer need to cover birth control. Some of those same insurance companies, however, cover Viagra!
Walker refused to implement the Affordable Care Act on the federal level, leaving the state to implement it, which has caused higher premiums for those that need it. Using the ACA as an excuse, he cut Badger Care and refused to expand Medicaid. He refused federal funding that would have covered 84,700 residents; 33,000 of those were children. This led to a $119 million cut to his state budget.
Walker signed a bill authorizing the Department of Administration to sell state heating, cooling and power plants without the requirement to solicit bids. The Koch Brothers surely benefited from that bill.
Scott Walker raises 60-70% of his campaign funds out of state for a state election. That tells me that a lot of state's money goes elsewhere.
Walker's tab for the John Doe investigation has reached over $600,000. Guess who will be paying that tab? Not Scott Walker! Walker's top Aide was charged and sentenced for taking more than $20,000 intended for Operation Freedom. Another 2 of his officials were charged and convicted of stealing more than $60,000 from Veterans funds. The president and CEO of Wisconsin and Southern Railroad pled guilty to 2 felony charges relating to the campaign finance violations.
As Milwaukee County Executive, Walker fought against receiving $750,000 to build a residential center for homeless veterans. Fortunately he lost that one.
This is not the kind of leadership that helps Wisconsin residents. Please vote for Mary Burke!!
Sunday, July 13, 2014
Things just keep getting funner
The other day I went to my usual neurological check and something new came up. I have something that is referred to as Pseudobulbar affect, also known as emotional incontinence. It is in short the in ability to control emotions. Laughing and or crying at inappropriate times. It makes it also very difficult to show true emotions, appearing mad when not. You here about this with Alzhiemers but not so much with Parkinson's, but Dr says it is common with pretty much all neurological disorders.
The next day I went to a speech therapist because my voice is getting softer and weaker. Also I had a swallow test. That didn't go to well I have to go in for a video swallow test. It is an x-ray of me swallowing barium. Seems the only part of the test I passed was sipping orange juice. Apple sauce was a bit tougher when it came to a soda cracker that was it. First bite was hard to get down, the second did me in. I chocked and coughed for about 10 minute's ending the test and requiring the video test. Seems I use many more muscles to swallow than is normal. We are going to worry about voice later, this is getting old fast.
As I had said in the beginning of this blog it is a way of sharing how this Parkinson's progresses and things to watch out for. When things don't just seem right you need to find out what is going on. Sometimes I feel like ignoring things that are going on but it is just putting off the inevitable.
The next day I went to a speech therapist because my voice is getting softer and weaker. Also I had a swallow test. That didn't go to well I have to go in for a video swallow test. It is an x-ray of me swallowing barium. Seems the only part of the test I passed was sipping orange juice. Apple sauce was a bit tougher when it came to a soda cracker that was it. First bite was hard to get down, the second did me in. I chocked and coughed for about 10 minute's ending the test and requiring the video test. Seems I use many more muscles to swallow than is normal. We are going to worry about voice later, this is getting old fast.
As I had said in the beginning of this blog it is a way of sharing how this Parkinson's progresses and things to watch out for. When things don't just seem right you need to find out what is going on. Sometimes I feel like ignoring things that are going on but it is just putting off the inevitable.
Wednesday, July 9, 2014
I know, more pd and driving
This has taken a while for me to write because it really isn't about Parkinson's per se but it has a great deal to do with living with pd. We had a neighbor named Bob whose wife was trying g to get him to stop driving for several years. Bob had very bad arthritis in his neck, could barely turn his head. It's hard to explain exactly what he did but over the course o about 5 years as a neighbor he had gone of the road into snow on either side of the driveway having to be pulled out. He has driven through our yard several time because he could not see or with the snow could not make out our little driveway/road.
He had a very frightening habit of when he needed to make a left turn out of our drive onto the 2 lane highway in front of the house. He would pull to the road turn right on the shoulder look in his rear view mirrors then turn hard left and do a u-turn to go up the road. A truck driver across the road and myself a former truck driver knew he would someday really hurt or kill someone. June 13 it happened.
My wife had just turned into the drive a Bob pulled out. I was inside waiting for her to get home. I heard the crash , ran to the window and at first just saw my wifes car. I was terrified then looked and saw another car in the front yard. He had been t-boned right in the drivers door. I didn't see the other car till I got out side found my wife was ok. The car in the yard was Bob's. My wife called 911 and we all headed over to Bob. He was still concious but hurting very bad. He had to be cut out of his car. We were all out there directing traffic and doing what we could till help arrived. The other driver was hurt pretty bad, didn't have his seat belt on and his head hit the windshield and was nearly scalped. Bob has caused 4 or 5 other accidents doing this same thing.
Bob was taken to the local hospital then med flighted to the university of Wisconsin Madison. He had broken his neck in 2 places. They did 11 and a half hours of surgery but he was paralyzed from his chest down. There was nothing more they could do. He died 2 days later.
I know this wasn't pd related by it was mobility related, just like the stiffness we all feel. My point with this story is that his wife had tried for years to get him to stop driving. I know how hard it is to stop, I still drive some but when my wife says stop I let her take over. I drive short distances alone but anything else only when she is with me. When she sees I'm stiff can't move or just not good to drive I don't. When our loved ones tell us to stop we need to listen. If we wonder if we should stop we should have already.
So many times here someone will ask about driving when you ask please think about Bob and stop. Don't put your life or others at risk. If someone you Love says stop PLEASE STOP. Don't be Bob or a possible victim.
He had a very frightening habit of when he needed to make a left turn out of our drive onto the 2 lane highway in front of the house. He would pull to the road turn right on the shoulder look in his rear view mirrors then turn hard left and do a u-turn to go up the road. A truck driver across the road and myself a former truck driver knew he would someday really hurt or kill someone. June 13 it happened.
My wife had just turned into the drive a Bob pulled out. I was inside waiting for her to get home. I heard the crash , ran to the window and at first just saw my wifes car. I was terrified then looked and saw another car in the front yard. He had been t-boned right in the drivers door. I didn't see the other car till I got out side found my wife was ok. The car in the yard was Bob's. My wife called 911 and we all headed over to Bob. He was still concious but hurting very bad. He had to be cut out of his car. We were all out there directing traffic and doing what we could till help arrived. The other driver was hurt pretty bad, didn't have his seat belt on and his head hit the windshield and was nearly scalped. Bob has caused 4 or 5 other accidents doing this same thing.
Bob was taken to the local hospital then med flighted to the university of Wisconsin Madison. He had broken his neck in 2 places. They did 11 and a half hours of surgery but he was paralyzed from his chest down. There was nothing more they could do. He died 2 days later.
I know this wasn't pd related by it was mobility related, just like the stiffness we all feel. My point with this story is that his wife had tried for years to get him to stop driving. I know how hard it is to stop, I still drive some but when my wife says stop I let her take over. I drive short distances alone but anything else only when she is with me. When she sees I'm stiff can't move or just not good to drive I don't. When our loved ones tell us to stop we need to listen. If we wonder if we should stop we should have already.
So many times here someone will ask about driving when you ask please think about Bob and stop. Don't put your life or others at risk. If someone you Love says stop PLEASE STOP. Don't be Bob or a possible victim.
Thursday, June 12, 2014
PD Vacation
This past month my wife and I did a vacation in our motor home, we did 3200 miles in 27 days. For anyone with parkinson's you know how hard and tiring travel is. For the first week and a half it wasn't to bad, in fact I did something I haven't done in years. I flew an open cockpit biplane. Not alone of course but with the owner. My wife had her very first ride in one. Meeting up with old friends again was great. As the days and the miles added up so did the fatigue, by the last few days for every day of being ok I had 2 days where all I could do was sleep. In addition I was a few days short of the meds I needed. This only added to the fatigue and feeling sick. Every once in a while I get the feeling that there is nothing wrong with me but boy if I miss some of my meds I realize that yes I do have pd.
I will spend some time getting pictures and a couple of video's to post here and more about a trip like this.
I will spend some time getting pictures and a couple of video's to post here and more about a trip like this.
Wednesday, April 30, 2014
Next part
Dealing with the name calling was hard other things were much harderwalking down the hall and haveing guys in a group calling names then have one run and jump andkick/push to see how far I'd fall and slide was the worst, and it was always groups never alone. Typical coward and bully behavior. Going to the principal was useless so I just lived with it.
Home was not much better, my dad had always had a mean streak especially when he drank, and he did drink. when I was 6 or 7 he dtarted making me go with him. I would sit and have a pop and fritos while he sat and drank and talked with his buddies. By the time I was 9 I was driving him home.
So after my folks picked me up it was a long ride home. My dad said very little, in fact he was pretty quiet all week end. Then all hell broke loose. I expected punishment but this was almost surreal. It was a nice day sunny warmand just sfter lunch he exploded. It was just him, my mother , an me at home . It started slow like a volcano. He started say stuff and then how I ruined his life. I guess his drinking pals started saying things, to the point he had to change bars. He started pushing and punching and throwing me around the house. The he pulled out a butcher knife and trowing it at me yelling I ruined his life he wanted me to KILL HIM. This lasted for what seems like hours. My mother just screaming and crying. She couldn't stop him and neither could I. By the time it wss over I wanted to fill his wish.
The only reason I added all this to the story is I have had so many who knew the basic story comment how proud I should be of it. How amazing it was. An amazing adventure and so on. I am not criticizing any one, I think that what the result was for me was a wonderful career. I went on to fulfill my dream of flying. I will say that my dad did become very proud of what I had accomplished. Even took him with me on a few freight flights.
This is pretty well the whole story of my taking the airplane on April 30 1965. As I said this is part of what is just one chapter of my life. I'm not sure I have ever told the whole story to anyone. It has taken a long time to open up on this. I know I have told some.
Like I said this was a very big event in my life and had a large effect on who I am. The story continued for several years, this was the worst part. The legal result was I was put on probation until I was 18. The only condition was that I could not go to the airport with out an adult. At 14 I joined the Civil Air Patrol and was at the airport for the next 40 years.
Home was not much better, my dad had always had a mean streak especially when he drank, and he did drink. when I was 6 or 7 he dtarted making me go with him. I would sit and have a pop and fritos while he sat and drank and talked with his buddies. By the time I was 9 I was driving him home.
So after my folks picked me up it was a long ride home. My dad said very little, in fact he was pretty quiet all week end. Then all hell broke loose. I expected punishment but this was almost surreal. It was a nice day sunny warmand just sfter lunch he exploded. It was just him, my mother , an me at home . It started slow like a volcano. He started say stuff and then how I ruined his life. I guess his drinking pals started saying things, to the point he had to change bars. He started pushing and punching and throwing me around the house. The he pulled out a butcher knife and trowing it at me yelling I ruined his life he wanted me to KILL HIM. This lasted for what seems like hours. My mother just screaming and crying. She couldn't stop him and neither could I. By the time it wss over I wanted to fill his wish.
The only reason I added all this to the story is I have had so many who knew the basic story comment how proud I should be of it. How amazing it was. An amazing adventure and so on. I am not criticizing any one, I think that what the result was for me was a wonderful career. I went on to fulfill my dream of flying. I will say that my dad did become very proud of what I had accomplished. Even took him with me on a few freight flights.
This is pretty well the whole story of my taking the airplane on April 30 1965. As I said this is part of what is just one chapter of my life. I'm not sure I have ever told the whole story to anyone. It has taken a long time to open up on this. I know I have told some.
Like I said this was a very big event in my life and had a large effect on who I am. The story continued for several years, this was the worst part. The legal result was I was put on probation until I was 18. The only condition was that I could not go to the airport with out an adult. At 14 I joined the Civil Air Patrol and was at the airport for the next 40 years.
Tuesday, April 29, 2014
49 years ago today
As I started writing about myself, my life the events of 49 years ago today are a major driving part of my life.
I think after next year 50 years maybe I will be able to let it go, we'll see. I did so many things to my life from then on it's hard to quantify but in the spirit of writing about my life for my kids and grand kids I am going to talk honestly and fully about what I did, why I did it, and the effect it had.
The day was just picture perfect spring day, I got up got ready for school left as usual but on the way to the bus stop something changed. For some reason for the first time in my life I just didn't go to school. Instead I did as I had done 100'ds of times I went to the airport. I walked through a small woods, left a math textbook there. Then I just went bumming around the airport.
After a couple of hours sticking my nose in airplanes, walking through the hangers I came across a cessna 150 with the key in it. I'm not sure why but I took it and continued walking around.
At the time another airport nearby was flooded and all the airplanes and a temporary control tower wer at this airport so there was much more than usual to look at. At some point I got in another cessna 150, the one pictured above, pulled out the key and started it!!! It started to move and I didn't know where the brakes were. All the reading I had done never really mentioned them. Now moving and afraid I taxied to the runway. I could remember most of what i had read and kept on going. As I approached the end of the runway the tower gave me a green light meaning I was cleared fot takeoff. I did.
The take off was less than professional looking and they guessed right away that this was not right. It was however too late, I was flying and had no intention of coming back. What followed was about 15 minutes that passed between terror and wonder. I was flying not well by any standard but I was flying. I knew I had to land sooner or later so I picked a corn field to land in. Very poor choice as I was later able to tell many of the people I taught to fly without giving them the details. Anyway there are a couple of points I want to stress, first I picked a place to land and landed there. Second is that the airplane had been on all three wheels after I landed, but going across the rows the nose gear snapped and I flipped over hitting my head on the instrument panel and causing a pretty good cut in my forehead. Hanging upside down I released the seat belt and got the hell out of there.
Bloody and dirty running like crazy and not realizing that I had been followed on radar from the moment I left the ground it was not long before police, fire, and ambulance arrived on scene. Not to mention a local St. Paul tv station and a reporter named Quinten Neufeld. At the time they had no trouble showing a minor on tv and by dinner time all of my friends and their parents knew about it. This is where my world went to hell.
Bleeding like I was the first place I went was a hospital in Hastings Mn for stitches to my fore head and to wait for my parents. That as you can imagine did not go well. By dinner time I had heard from all of my friendsn, they were no longer allowed to be around me. This was a Friday when I went to school on Monday it was all over. The name calling pushing and what ever bullying you can imagine began that Monday. It lasted until the day I graduated. I had a few friends over the remaining 5 years and to everyone of them I am eternally greatful.
The bullying even extended to teachers. Remember I said I left a math book in the woods, well someone found it and turned it in. My math teacher at the time was Mr. Woods funny huh. Well he decided to all by himself teach me a lesson about "leaving a book out there" and proceeded to join in with most of my classmates and started beating me up inthe hallway. Very tough guy taking on a 13 year old kid. For thebiggest part of the rest of my time at that school I avoided it and everyone. I honestly believe if I would have had access to guns the way they are out there now. I bring this part up because it profoundly changed the way I looked at and remember my school years, and also thst bullying isn't something new but it is something you can survive and even thrive. I went on followed my dream and became an airline pilot. The fellow who owned the plane taught me how to fly, hired me as a flight instructor and helped me on my way to a career as an airline pilot.
The reporter Quint Neufeld on my 16th birthday came out and filmed my legal first solo flight and years later was news director at that same tv station who called to have me fly reporters and camera men to stories. The airplane I soloed in is the same one that is in the picture above.
The next part of the story is much harder to tell but equally important because it had a big influence on who I am. But its late and that is for next time.
The day was just picture perfect spring day, I got up got ready for school left as usual but on the way to the bus stop something changed. For some reason for the first time in my life I just didn't go to school. Instead I did as I had done 100'ds of times I went to the airport. I walked through a small woods, left a math textbook there. Then I just went bumming around the airport.
After a couple of hours sticking my nose in airplanes, walking through the hangers I came across a cessna 150 with the key in it. I'm not sure why but I took it and continued walking around.
At the time another airport nearby was flooded and all the airplanes and a temporary control tower wer at this airport so there was much more than usual to look at. At some point I got in another cessna 150, the one pictured above, pulled out the key and started it!!! It started to move and I didn't know where the brakes were. All the reading I had done never really mentioned them. Now moving and afraid I taxied to the runway. I could remember most of what i had read and kept on going. As I approached the end of the runway the tower gave me a green light meaning I was cleared fot takeoff. I did.
The take off was less than professional looking and they guessed right away that this was not right. It was however too late, I was flying and had no intention of coming back. What followed was about 15 minutes that passed between terror and wonder. I was flying not well by any standard but I was flying. I knew I had to land sooner or later so I picked a corn field to land in. Very poor choice as I was later able to tell many of the people I taught to fly without giving them the details. Anyway there are a couple of points I want to stress, first I picked a place to land and landed there. Second is that the airplane had been on all three wheels after I landed, but going across the rows the nose gear snapped and I flipped over hitting my head on the instrument panel and causing a pretty good cut in my forehead. Hanging upside down I released the seat belt and got the hell out of there.
Bloody and dirty running like crazy and not realizing that I had been followed on radar from the moment I left the ground it was not long before police, fire, and ambulance arrived on scene. Not to mention a local St. Paul tv station and a reporter named Quinten Neufeld. At the time they had no trouble showing a minor on tv and by dinner time all of my friends and their parents knew about it. This is where my world went to hell.
Bleeding like I was the first place I went was a hospital in Hastings Mn for stitches to my fore head and to wait for my parents. That as you can imagine did not go well. By dinner time I had heard from all of my friendsn, they were no longer allowed to be around me. This was a Friday when I went to school on Monday it was all over. The name calling pushing and what ever bullying you can imagine began that Monday. It lasted until the day I graduated. I had a few friends over the remaining 5 years and to everyone of them I am eternally greatful.
The bullying even extended to teachers. Remember I said I left a math book in the woods, well someone found it and turned it in. My math teacher at the time was Mr. Woods funny huh. Well he decided to all by himself teach me a lesson about "leaving a book out there" and proceeded to join in with most of my classmates and started beating me up inthe hallway. Very tough guy taking on a 13 year old kid. For thebiggest part of the rest of my time at that school I avoided it and everyone. I honestly believe if I would have had access to guns the way they are out there now. I bring this part up because it profoundly changed the way I looked at and remember my school years, and also thst bullying isn't something new but it is something you can survive and even thrive. I went on followed my dream and became an airline pilot. The fellow who owned the plane taught me how to fly, hired me as a flight instructor and helped me on my way to a career as an airline pilot.
The reporter Quint Neufeld on my 16th birthday came out and filmed my legal first solo flight and years later was news director at that same tv station who called to have me fly reporters and camera men to stories. The airplane I soloed in is the same one that is in the picture above.
The next part of the story is much harder to tell but equally important because it had a big influence on who I am. But its late and that is for next time.
Living in chronic pain
Something that is very hard to explain to someone is what living with chronic pain is like. Everyone has pain now and then, sometimes it's even frequent. Maybe an asprin or two will take care of it. But true chronic pain is ALWAYS THERE, IT NEVER GOES AWAY. it is there in the morning and it is there when you go to bed. Pills can ease the pain, put it a little in the background but it is always there. I bring this up because one, I am very familiar myself with this but I know several people who suffer this day in and day out.
Unfortunately for most of us it is so hard to quantify, it is hard to get Dr's to believe and hard to make family and friends understand. No one I know who lives this way wants sympathy just understanding. Whether it is like my leg cramping and feeling like my feet are trying to fold. To CRPS which is Complex Radiating Pain Syndrome, which continues to get worse and is debilitating. Sometimes drugs help, sometimes not but most of us do not want to go through life under the influence of drugs. Most try to just push through the pain as much as possible taking pills only when it gets to bad. I does however prevent people from doingmany of the things we would normally do.
It like many other things are unseen medical problem. No different than say depression. It is so easy to judge and not believe, I was guilty of that myself but lucky me I get to learn about it myself. Karma I guess. Thing is I know of no one who lives with this or makes claim of this to "game" the system. Believe me most would give almost anything to be back to normal. Disability insurance does not come near to a normal jobs pay or the loss of a lifelong career that was a dream.
Constant pain.
Loss of sleep.
Loss of income.
It is not a choice anyone would make. So please be a bit more understanding and a little less judgmental.
Unfortunately for most of us it is so hard to quantify, it is hard to get Dr's to believe and hard to make family and friends understand. No one I know who lives this way wants sympathy just understanding. Whether it is like my leg cramping and feeling like my feet are trying to fold. To CRPS which is Complex Radiating Pain Syndrome, which continues to get worse and is debilitating. Sometimes drugs help, sometimes not but most of us do not want to go through life under the influence of drugs. Most try to just push through the pain as much as possible taking pills only when it gets to bad. I does however prevent people from doingmany of the things we would normally do.
It like many other things are unseen medical problem. No different than say depression. It is so easy to judge and not believe, I was guilty of that myself but lucky me I get to learn about it myself. Karma I guess. Thing is I know of no one who lives with this or makes claim of this to "game" the system. Believe me most would give almost anything to be back to normal. Disability insurance does not come near to a normal jobs pay or the loss of a lifelong career that was a dream.
Constant pain.
Loss of sleep.
Loss of income.
It is not a choice anyone would make. So please be a bit more understanding and a little less judgmental.
Tuesday, April 22, 2014
All about me
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.
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.
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"
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.
Subscribe to:
Posts (Atom)