The Goddam noise in my head

It has been a while since I posted here and I am sorry about that, but I've had a lot to say else where I just wish I could put it all in one place.  Tonight is on of those nights when wine and pills wont bring sleep and I don't want to push it on either so I'll write.

I am not sure where to start other than I feel I am going truly crazy. This trip is a great thing to do, but I almost feel I'm doing it for all the wrong reasons or in someone else's life. The things we are seeing and doing sre great but it feels like I'm just along for the ride. I pretty much do what I am asked sometimes a little begrudgingly but I do it. Hikes walks sight seeing,  god I am so fricken tired, but the thing that hurts the most is I feel like I am just here to do......there is no how do I say it... return. I most of the time feel so alone it is driving me crazy. Parkinson's causes plenty of problems but it doesn't cause someone else to sit on the phone posting all day long or sitting and doing crossword puzzles all the time and avoid talking or being with you. Sometimes I wonder what the fuck I am here for. Certainly not that. I keep getting the question "are you having fun, isn't this great?" No I am living in a world that keeps shrinking on what I can do with it an in it and I am doing it alone. I am so fucking tired of being alone I might just as well be alone. I have nothing to lose. Dish tv will still work, dogs will still love me. Most days I have no reason to get up or go to bed.I took my sleeping pills 2 hours ago but I just lay here alone.

I have tried to talk about this but it never gets past"well I'm glad you could say something". I cannot live like this. I need to be more than the repair man and chauffeur.  I saw on tv to day that some folks in their 80's still have sex 3 times a month. We havent had it more than once in the last 3 years. YES PARKINSON'S causes problems but intimacy in a relationship is vital fot it's survival. And that doesn't always mean orgasm, but closeness is vital for the survival of any couple. My guess is especially when there are factors that put an added strain on it.

Will she ever read it I don't know. I know that when I bring it up it is pretty much brushed aside and written of to one of my moods. But it is becoming a very big black cloud over my world, and soon a flood of bibical proportions will begin to fall and we sold the boat.

The frustration is running as high as the snows in Wy

Since we got to Fon du Lac the frustration has been unbearable. Where we intended to park became a major controversy so we have spent almost half our time trying to find a place to park the motor home. Finally today we got one. I can finally get the mounting of the tv's done. We are replacing 2 old analog with 2 hdtv's of similar size. We got a bike rack and the kayak rack made by our friend Bill is fantastic. With out Bill and Barb our attempt to get going would be even further behind. At this stop we have wasted valuable time just lookig for our parking spot.

Tomorrow we will visit some of the kids but I'm sure we will be back again before we go. My fear right now is the first few days could be for snow removal it is still snowing out west but I plan to take it easy with the weather,  trying to avoid that  get there at any cost because of weather and to keep travel safe, but the further we can travel in a day gives us a better chance and a bit more tine to visit.

Making this change has taught me more and more the importance of accepting help from friends. I was always just a do it myself type of guy, now I have physical limitations that are hard to admit and harder to believe they are hard limits. If I push past them myself it can take days to recover. As someone once said "it takes a village". The disabilities we have can be overcome with just a little bit of letting someone in, and I know I'll never repay it but it will always be a part of me and how I will try to repay in kind. 9 days to go. Keep us with you and we will do the same.

The Big day

Well after all the hassle of selling the house, tomorrow we pick up our new home. It ended up being delayed by 2 days because the dealer found one of the 2 furnace units had a relay problem turning on the blower. At least it makes me feel like they really do check everything out. We still have aridiculous amount of stuff to deal with, but it is getting closer to our departure date of May 1. My next big worry is the tow dolly for Shelleys car. I think the guy we got it from may not have been the most honest caracture. I've got a few ideas about it so we'll see.

This will be an amazing time for us, no doubt about it. Even my neurologist said he envyed us and our adventure. Both of you who have read this have seen much the same over and over but with luck as we continue on it will be much more informative.  My reasons for writing this are many. A fform of diary and a record for kids and grandchildren to get to know more about who I am, why I'm not there, what I am, and whay and how I think. There may even be a what and how this disease is taking me down. It is not only me however it is also about my wife, my friend, and my care taker and the difficulty her disability effects this journey. Just as wevbegin organizing our new home in the next feweeks I hope to organize this blog into some thing that wil make sense.

 Parkinson's is a very destrutive deaease that at a rate of its choosing destoys the function of our bodies and sometimes our minds. I hope you will journey with us and share. It's a fairly common desease that treats us all the same, we just move at our own pace. Maybe I will even get to announce a cure. But please share your comments and share our story. It wont be a fast passed who done it, we already know that, it's more of a what happens.

It is getting close now.

We close on our house April 3 and get our new motor home on April 8. It is going to be a real tight moth in April but we will own our new home free and clear. We will stay with fmily for the month of April then head out 1 May to start our big adventure.  Today was tough we had the last meeting of our support group.  There were tears and hugs n but we have to do this while we can. We had a very successful moving sale last week still selling a few things what doesn't sell we are donating to the local St. Vincent De Paul store. We are dog sitting for our favorite dogs and then we go. Being me I am nervous as hell, Shelley is just pumped and ready. I wish I had her strength in this but change is hard for me. It will be exciting for us and I will do better as we proceed.  Once we get going I will post daily progress reports and pictures of our progress. There is a reason for this new adventure and hopefully we can all find it together.

Fear is beginning to set in

Today was a big step in selling the house.  We had the big inspection and Radon tests which passed with flying colors. The closing date is 3 April and that's not far away. We are selling the house both of us have lived in for the longest time and moving to the motor home. I've made many moves during the time when I should have been the most stable,  the years my kids were growing up.  It seems to me we had moved something like 14 times during my oldest daughters school years.  It would be almost impossible to figure for each of the 3 now. Every move was like this one though for me. Filled with doubts and fears. I think now is even harder because of the added anxiety that pd brings to the table. Shelley is all set, full speed ahead. We will both miss the great friendships we've developed here, but we aren't getting any younger or healthier so I guess we gotta do this. We can't keep up with what this place needs and frankly we can't afford it any more. When we leave just in no house payment,  no utilities, no sat tv, stuff like that we come out about 1900.00 a month ahead. Plus working pt at the KOA's which includes cable and electricity we come out about 2500.00 per month. Free stays at KOA'S  when traveling to and from, hard not to do this.

But the fear of can I do the work and all. Some days it is almost impossible just to get out of bed. The fatigue is a big worry and I know for Shelley so is working with her hands. It all makes it a major adventure. Then when we are done next September we really will have no home to go to . we'll do some visiting and such. Look for a new campground, but the motor home will be home. I hope to write a book about this and the years leading to us being where we are, so many things and so many great people have brought us to this point

Getting away from winter and the cold will help us both feel better of that I have no doubt. When you're stiff and sore the cold only makes you stiffer and sorer so it's time to go. . Just stay with us here and Facebook, that way we can all stay close. Going to be a busy month, I'll write as often as I can 

So it begins for real

Funny when you really begin preparing for this thing you've talked and dreampt about. I struck me today as I was taking pictures of the wall for packing. We will have lived here in this house for 14 and a half years, longer than either one of us has lived continually in one house. The things we have collected over the years and the memories.

When we bought this house we made a decision to do so to be closer to family, we lived and worked in Denver Colorado at the time I flew out of Denver and Shelley was going to Veterinary tech school. We figured I would have to commute for a while until I could get based closer to home but it was our desire to get back here. Wisconsin is here by the way. but from the beginning it was iffy at best. A couple of months before we closed it looked like we may go on strike at work. That didn't happen but while we were on vacation 2 months before we moved in I received the news I was awarded a Captain position in Appleton just where we wanted to be. Then just under a year after moving in 9/11 hit. For a time flying was reduced, drastically reduced. After a while things got back to normal,  whatever that is, and after 5 years I was diagnosed with depression an early symptom of Parkinson's, but that had never crossed our minds. At that time however you could not fly and be treated for depression, that has since changed. My flying career was over. I drove over the road truckfor a few years, the worst job in the world, for me. Health issues continued to plague me, neck surgery in 2010 followed by 6 months of physical therapy with no improvement and finnally my diagnosis of Parkinson's disease.

Our retirement dream was to live and travel on a sailboat.  We've decided to call this land sailing. Then in 2013 Shelley had to have carpal tunnel surgery on both hands. It went bad and she ended up with permanent nerve damage in both hands a wrists.  The Dr's said she could not work again, not many jobs you can do with out your hands. So we traded my F-150 an atv and trailor and a camper trailor for the motor home. Last summer we did some traveling and visiting some of the greatest people we have ever know, then got a call to camp host at a national forest campground n loved it and all that brought us to pulling the pictures off the wall today. We should close on this house around the beginning of April at which time we move into the motor home . Us 1 cat and 3 dogs. Then it's off to Montana to work the summer at a campground. The good thing is the hours are very limited, the pay is minimum wage but free camping.

So this is how we come to here if we make enough on the house we can upgrade the to a nicer motor home, otherwise it's save over the summer and continue on from there. I would be a fool or lying if I said I didn't have some apprehension about all this, but in the same vein I am excited about the travel while we can. I am very lucky to have the partner in life I have. The things we have gone through the last 10 years could easily have torn us apart and I don't think anyone could have blamed us, but I believe we have gotten stronger in spite of everything. So now it's just get packed and get on with life. I'll keep writing here as long as I have something to say.

Just what is a Parkie in the Foresrt

Funny you should ask that. About 4 years ago I was diagnosed with Parkinson's disease, many are familiar with it because of Michael J Foxn but there are so many more of us and basically we all have our own version of this degenerative disease. Parkinson's was disscribed to me once as many as 20+ different diseases rolled into one. The one really bad thing is it is an incurable degenerative brain disorder.  Everyone of us who has it willdie with it, maybe not because of it ñ but what will happen is as the inability of the brain to produce and use dopamine things will stop working. Most I guess will die from a form of pneumonia n caused by thr inability to swallow properly. Many think of it as an old persons disease and I guess at one time that may have been true. It is however showing up in people as young as 17. There is wide speculation as to why that is, but that is for another time.

I am here to explain what this "Parkie in the Forest" thing is. For 27 years I was an airline pilot and my wife was a flight attendant,  who later became a veterinary technician.  I was diagnosed with what will here to fore be called as pd "Parkinson's disease and I myself am a pwp or person with Parkinson's. It made as you might think a major change in my life. As time goes on I will explain what the changes were, are, and still happening. My wife a couple of years later had double carple tunnel surgery and ended up with severe nerve damage in her hands and wrists. Now contrary yo what you mighy think this is it is not a pitty party for us. We are moving foward with out lives doing as much as we can to take on a world we know something about. We are going into the Forest to work at what we can. This summer we will be working in a national campground chain and blogging about how 2 disabled people can function.  The company does not know yet who we are but at no time will we ever blame a short fall on our part on anyone but us. Our goal is to show how much we can stil contribute to society d's and support of ourselves in general. We have a great job set up for this summer and maybe next.

What I really want is for those of you who read our site to like it , share it, and comment on it. People who you may just walk by and ignore have a lot to give, all we need is a chance. I am not a real believer in the notion that God set this all up for me. I know that what I have done I pretty well did it to and for myself. My feeling is if God gave me pd to see how I would handle it then things like Super Novas and Galaxies coliding must be pretty be pretty boring. I'll shake and deteriorate for another 10 to 20 years these other thinhgs happen over millions of years.

All we want to do is deal with te day to day thingsn our struggle to help each other and all the other battles we win and lose along the was.
But again please stay with us comment and help get a real discussin going.

It's all coming together

We git the news to day Valentines Day that the people buying our house sold theirs. So now we have about 6 or7 weeks to prepare for this big adventure. We are pretty sure we will have all we need to up grade the motor home we are looking at. It is gong to be a challenge but we are going fot it full bore. This is going to be a major adventure.  Please stay with us as this grows. I have pd and my wife has CRPS in her hands and wrists. We each have a disability and we are going to take on this challenge together. We are going to talk about what we live with and what we can and can not do. Please stay with us.

How do you get away from pd for a while

Saturday we had a great speaker at our support group,  he was an early president of the Wisconsin Parkinson's Association.  Great guy has been his wifes caregiver for 40 yea4s since she was diagnosed. Many great points were made but he made a  special point of telling the caregivers to make sure the take care of themselves, to which I agree completely. He does now however have 9 people who take care of his wife for him or she would surely be in a nursing home now. If they travel he of course does not travel with her, someone else does that. This brought up a question in me how do we the pwp gwt away?  My wife suggested a get away for pwp so that we could talk of other things and do things to get away from our disease. Here is where I see a bit of a rub.

When you are around pwp it is readily apparent that you are with a group of people who have pd. Alarms gong off every little bit to tell us it's time for pills, not to mention everyone moves in slow motion or tremors. She then suggested that we be encouraged not to discuss our disease and speak of other things. My thought was well yes we could all do that while we can't sleep at night or sit there contemplating all the other things we used to be able to do. I know this sounds harsh but there is no place or no time that we can get away from this disease. It has gotten into my dreams, I am restricted in what I can do in my dreams by this. I agree that our loved ones who care for us no matter how simple now or how much later on need to get away from it, but they must realize that we can't do that. Parkinson's weaves its way into every bit of our being. We live by the schedule of pills it requires, by the way we move, by the way we think or don't think anymore,  even into that most cherished place of all where we were invincible..... our dreams.

I don't say any of this in anger or being mad at some deity that must have more important things to do than take time off from running a universe to worry about how I'm doing. It is very simply a matter of fact,  no matter what I do or where I go this is the dominant force in my life. It has robbed me of the ability to make Love, to swallow, to sleep, even to poop!!!!! I can no more blame a God for this than I can give him credit for the fact that I could do the things I did before. That would be saying everything in my life was set in stone before I was born and then why bother at all. What was all this for? I want to believe that the things I did were because I wanted to do them enough to put in the effort. I certainly don't know the ways of the universe but I would like to think that both the good and the bad I have done were things I did and not a part of some cosmic chess game or even worse some preordained plan conceived long before I was.

Getting ready for a big adventure

Our summer plans have been set, we are going work for a KOA campground in Missoula Mt. As far as we can see getting into the KOA worker system is going to be great for us. I know I haven't posted much but as things continue I'll put more on here. It is going to be great traveling that far in our motor home.  Giving ourselves plenty of time to get anywhere. We are selling our house storing the stuff we want to keep and sell everything else. Watch for more updates on this "Parkie in the Forest".