parkinson's family story

Many years ago I knew a man with a booming voice, a larger than life, to me anyway persona. He was my grandfather, my mothers dad, who she always said I was just like. A compliment I have always relished. I didn't get to spend the time with him I would have liked but I did get to see things, and in hindsight are all to familiar. He passed away in 1973, I was 21 at the time in the Air Force a continent away and didn't get to say good bye but there are things I saw then that I see now everytime I look in the mirror.

I remember back when I was young this man ate his peas of a knife, something that was evidently quite popular among certain people, of german decent I think, but he did this. He had a booming voice I remember him yelling at my cousin that he and my grandmother raised as their own. The only cousin I I have. that knew him that is older than me. I saw a steady decline in him in the very short time I can recall from those years. He was a carpenter, back when you sawed wood by hand, you plannd boards level by hand. It took physical strenght and knowledge to build, From my early memories to my last was about 15 years and in that time I saw a man go from larger than life to a whispering, shuffling, shaking shell of his former self. No ome ever said Parkinson's, not really sure if they even knew it then. They were very poor, he may have been a good carpenter, but in the early 60's there was not much to help a fellow who had something going wrong, that even today takes more intuistion than skill to diagnose.

It is so hard to imagine what it must have been like to for no understandable reason just deteriorate from a useful human to a guy who just needed to sleep. In the later year that is what I remember most is his always sleeping and the chair that no one else could sit in because it was where he spent most of his time. How difficult it must have been for my grandmother to become a caregiver and have no idea whar was happening to them. I never got a chance to talk to my mother or anyone else in the family about this because they are all gone now. Being the oldest of the family left, there is no one to ask what happened, what they knew, anything.

I have developed a very powerful love of woodworking, I have no idea why, never did before, I have also developed Parkinson's.I just went to the basement to get somethings I had been working on on, and as I shuffled off to the steps it hit me like a ton of bricks, I move like he did, I talk like he did, my mother was right I am just like him. I've known for a couple of years what wa goiung on, but I am lucky, there are treatments I haave available to me he never dreamed of. How terrible to have this and nothing anyone could do. Levedopa came into being a few years before he passed away, my guess is being poor kept him from finding any relief, and it may have been to late anyway. Somethings haven't changed so much in the years that followed though in this country. If you are poor you are still pretty much on your own, drugs that can help and make a difference are, if you don't have good insurance are still out of reach for many. I get for example my Azilect for free now, $15.00 a month till I hit my max deductible, for some it's $900.00 per month.

I don't know if any of this is hereditary ot not but I know that caring and compassion are generational and we are a generration that seems to not care anymore .Is it so hard to remember our grandparents and the hell they went through before SSA and Medicare, why do we seem hell bent on going back there? I for one remember a time when we visited my grandparents and ate canned ww2 surlpus meat and surplus cheese. Is that where we want to go again I pray not.

along night in Texas

I just watched the last 45 minutes of the Texas special legislative session and was appauled at what was going on. They forced an end to the filibuster of Wendy Davis for going of point in her filibuster of an abortion bill for talking about a sonagram required for an abortion. I do believe the two are related. What I saw was a disgusting display of the GOP and their anti women struggle. This isn't about right and wrong anymore it is about pushing a right wing ultra consretvative agenda. These people treat their cattle better than women, and why any woman out their would vote for them is a mystre to me. They rail against the idea of Sharia Law coming to this country, but they want to impose a virtual Sharia Law on women. On of the things so appaling to us about Sharia Law is the disregard for women, but isn't that what they are trying to do now.They don't trust a woman to make her own health care decissions, they think of rape as an inconvience, maybe to themselves, I don't know. But I am quite sure it is more than that to the victum.

I have daughters and granddaughters and I don't want them living in a world where they have no say over their own bodies. Would a man pr men in general allow this type of intrusion into our health care, would we allow a forced rectal exam to get viagra. How about a forced Stress EKG to make sure we are healthy enough for sexual activity, my guess is not because there is no legislation pending for that. What gives a bunch of fat old men the right to legislate what happens to or in a vagina? The hypocricy of these people is truly amazing, like the prolifeTn rep. whose girl ftiend recorded him trying to force her to get an abortion because he couldn't have his wife find out about her. How would they deal with a law that said the only time they could ejaculate was to make a baby? That they would have to report to the local sheriff any spilling of sperm because it was killing millions of innocent cells.

They preach smaller gov but they want the gov to regulate every womans body. They claim to be prolife but that is only until birth, after that, no food, no health care, no education, but also no birth control to prevent unwanted pregnancies. I wonder how many would want to support a child for every time thet had sex. Maybe thats the problem, they never have sex and they want to take it out on the rest of the world.

I hearing the weaker speaker saying jobs is their highest priority, but who's job the sex police. It is very evident that the anti sex ed party is the party that needs sex ed the most, they have no idea what goes on in or around a womans body, so as Wendy Davis said get out of the vagina business or go to medical school.

Parkinson's moving into my life

Parkinson's disease entered my life long before I was diagnoses, looking back I think it started when I was about to turn 50. At the time I was an airline pilot and an avid sailor. We had a 32 foot Ericson sailboat, I had the boat for 7 years, had spent most of my summers on it and I was very comfortable moving around under sail. It was about that time I noticed some balance problems, moving around the boat was becoming a little uncomfortable. I was more and more missing steps and tripping. Let me add here that I never drank when sailing, I would have something once the boat was tied to the earth, docked, anchored, or moored.

Other things started happening slowly but continued, depression, becoming stiffer, not moving easily. Parkinson's has many, many non-movement symptoms. When I would do anything physical I would sweat at an unbelievable amount. My blood pressure became erratic, extreme dizziness when standing. Vivid dreams, nightmares, moving and reacting to my dreams when asleep. Occasionally punching my wife in my sleep. I started having problems doing things I had been doing for years, learning a new airplane was pretty much the final straw when I almost couldn't do it. Not long before that I was diagnosed with depression, was being treated for that, but at the time airline pilots were not allowed to be depressed so I ended up having to retire early. It was shortly after that that things really started to deteriorate.

I had to work so I started driving truck over the road, had I not been depressed that would have done it.Anyway, later that year actually it was Christmas morning 2007, about 1:30 am, I got up to get something in the kitchen and collapsed. I had a syncopy event, I passed out, got up and passed out again. After a few minutes I was better but my wife made me go to the emergency room, bringing on a tremendous battery of tests. Ctscans, blood tests, stress ekgs, all ok. Not heart or stroke related. Neuro physyc tests, all good. After all that I was given an MRI, finally found something, a cervical spinal stenosis, the c4-6 vertabre were completely closed off, no spinal fluid was flowing from my spine to my brain. I was told one good fall could make me a quadraplegic. I needed and got surgery. It fixed the stenosis but none of the problems. During the testing process a strange name kept popping up, Parkinson's. Usually in the words,”that doesn't nessicarily mean you have Parkinson's”. After a while of being told that doesn't mean you have it I began to think maybe I had it. Two or three more years of tests all negative until my neuro gave me sinemet, a levadopa drug used to treat Parkinson's, it it helped, that meant I had it. It worked, I did, now after all the reasearch by us, we were pretty sure what it was, this just confirmed it.

I will continue with my story soon, living with Pd.

getting ready for the market

Look like a dreary start to the day, think we may have some storms coming.
Getting the finishing work done on the new pieces for tomorrow market, we have a special order clear top jewelry box ready  to deliver. It's going to be a hot one, I may have to get  out there in my with my knobby knees on display.

We frequently bring things to sell that are to expensive for the market, but I think of it as adversitising. Need to be known, and I think word is getting around. Anyway should be a good day.

this is a very confusing site

I'm not sure this blog thing is worth the bull, maybe.I'll have to just keep pissing people off.

Good day, a lot done, getting ready for the farmers markets Saturday. Several new pieces, doing the finishing next couple of days. Always feels good to accomplish the projects and have new items each week. This is a form of occupational therapy, staying active is so Important to people with Parkinson's. Need  fewer meds during the day which is always a plus.

Going to be too hot to do the bricking this week end. Heat will prolong the project this summer.

The culture of hate in this country needs to change, where this bullshit comes from is obvious, the lunatic fringe on the right. Blame everything on the poor, sick, and.elderly. No one is trying to steel your precious tax dollars. My hope is you never need help from the government. Oh wait,you drive on roads, you use the internet, you eat safe food. God damn government, get those people out of your life. Time to get a grip on reality.