After thoughts about Parkinson's MJF and us

It is a shame what Parkinson's does to .people, famous or not. Watching Michael j Fox show was a bit of a disappointment, but it was great to see him on tv again. That said we all feel sorry for celebrities and what they have lost. Michael is lucky to get his life back, Linda can't sing, Mohammed Ali can't do much of anything. The thing is we have all lost every bit as much tthey have. Everyone I have met in this community is every bit as much a hero as any of them. I lost my career flying for the airline, so many have lost their dreams and hopes for retirement. In the end Parkinson's is so insidious it doesn't care who or why, it just takes and takes. MJF is the face of a foundation every morning we see the face of Parkinson's in the mirror. When we hold celebrities up as the face of this disease we sell our selves short. Every time we interact with people we are the face of Parkinson's, we do it without fanfare or hype. Looking for a sitcom to tell our story is not the way to inform, just telling people what is does more. When we set up at farmers markets we always have information about Parkinson's there. We do.it to.inform and to let pwp know about our support group. Television can give a tiny glimpse into our world, we are the reality.

Sleep Attack

Something new has joined the multitude of problems associated with Parkinson's, sleep attacks. Kind of funny for a guy with insomnia, it could be a side effect of the Ropinerol(Requip), which can cause fatigue and drowsiness, or Parkinson's related narcolepsy. This is a very scary one for me. It has caused me to all but quit driving, and make working in the shop a bit uncomfortable.

It comes on very fast and it doesn't matter if I'm tired or not. As far as I can make  out it has nothing to do with fatigue. All of a sudden my muscles just go limp and I drop. It has happened at the table, just sitting there and bam, I start to collapse. So far it seems to startle me and Icatch myself, but that is just the start and I need to lay down quickly because it continues for a while. This morning i was in my shop, doing some wood carving, just sitting on my shop stool and I felt myself going limp. Just a brief feeling, I caught myself but that was it, I had to quit. Headed up stairs to lay down, my son called we were talking and.I was laying down. I had a very hard time following the conversation, next thing I know the phone is ringing and.he's calling me back. He thought we were disconnected. I guess I went to sleep.

The sleep doesn't last long normally, and it isn't restful at all, everything just goes black. Needless to say it is scary. What if the next time it's stronger and I'm at a power tool, or on the steps. What if I were driving, so many what If's. I called my neurologist, he said after I get my cpap machine and sleep better I'll ok. But be careful driving. I have never slept well and this is not caused by being tired, it may be caused by meds but I don't believe it is. I hope he's right because this may be th most debilitating thing to happen yet.

tips for Caregivers

This is a post from the Patients Like Me website by "Droppsie" that I thought was worth sharing:



There are some good tips and tricks in the archives of this forum that give sound advice in things like socks before pants, but here, I'll go for a few general points that I personally find worthy of mention . . .* Be prepared for anything and assume nothing.Good and bad days are unpredictable. One day a spoon may be needed to eat scramble eggs, but don't assume a spoon is always needed.* Don't coddle. To maintain physical and mental momentum, as well as self-esteem, we must keep trying to do everything we can for ourselves. Sometimes it's just reassuring to know that someone else is there when we attempt to do the things we struggle with.* Be a friend, not a boss. Ask if we need help getting up, don't just grab and pull. Pulling on someone in a freeze can be dangerous. Be patient when non-mandatory plans are postponed with little notice, and help with the mandatory ones by allowing plenty of time. Capabilities can change from hour to hour.* Remind, don't nag. Yep, we forget sometimes and we procrastinate at times, but we also reprioritize what is important. Sure the electric bill on the counter may need to be paid, but is it such a big deal that new mulch hasn't been ordered yet?* Remember . . . Dystonia is a cramping sensation, but "cramp" isn't a true and complete description. Fatigue is more than being tired. Tremors don't have to be seen to be real. Walking can be difficult and painful. Writing the simplest things can be slow and frustrating. Everything works slow and without our full control, body and mind. Tears, anger, laughter, and fear often come without justifiable or known cause. We don't necessarily hear what is said, or say what we think we say. So we're back to Be prepared for anything and assume nothing.That's certainly what we soon learn.

A great and wonderful event

Four generations my daughter, granddaughter, Audrey, and me.

Today's events were nothing if  not miraculous. I at 61 became a great   grandfather she isb beautiful. ,7 pounds  8 ounces of Lovely. It is exciting to be here for this and be watching the family grow. I will get meet her tomorrow.

She was so quiet today as she was passed around like a football. Her name Iis Audrey Renee and she is perfect.

Being a grandpa with a woodworkers heart I made this for her mother and hopefully to be handed down to her for her first child. It is a way for me to be remembered and wondered about.

This woodworking is good for the soul, to bad it took Parkinson's to get me started.

Woodworking part 2

Parkinson's and wood woodworking part 2

It seems I learn about more and more parkies who like to woodwork. At a flea market talked with a fellow at great length about woodworking and the dangers especially for the movement impaired. We had a great time sharing stories from the shop and techniques, and safety ideas we have and special tools we have made just to keep all of our fingers. He had three finger tips lost from a table saw accident. Some ideas were a little late. But you live and learn.

I normally go to a local farmers market on Saturday and Sunday, but this week we tried something else, a flea market, we thought, great a lot more people, surely a lot more sales, sadly it doesn't work out that way. In fact today for the first time in a long time nothing sold. It seems that flea markets are just bargain hunters, and people looking for really strange junk from others. I guess one problem is in the last couple of weeks we have done very well and I haven't had time to rebuild all of the most popular items, breadboxes (especially roll top, and veggie bins for the counter top,and other small cabinets.

These have been great sellers, but it takes time and it is just me. Also a big on that caught me by surprise was the chess sets. I went to my primary care doctor last week and we were talking a bit about what I was doing and pain and all that I pulled out my phone and showed a couple picture off my wood work and he ordered a chess set right then .

I hand carved the chessmen myself, my first try at that and people seem to love them. I bring this all up because So many people with Parkinson's do woodworking that it is good to show others what we can do. Ourselves as well as the rest of the world.

I am proud of the work I do, after a couple of years not even wanting to get out of bed, between fatigue and depression I just couldn't get moving. Then I started to work with wood. It gave me a tremendous lift seeing that I could still create something worth while with this disease little by little consuming my body and my brain. I have besides the chessboards and chessmen found I really love designing and building furniture, cabinets, tables, night stands what ever, and they look pretty good if I do say so my self.

And a project for my grand daughter who is about to give birth to my first great grand child, a little girl named Riley. I am very proud of the young woman she is becoming. I will post pictures of it after she see's it, when I give it to her next week, she should be the first to see it.

I think it is so important to see that there is life after a diagnosis of Parkinson's disease, your life is forever changed, your old dreams are completely shattered but there is life after wards. Your dreams change, your hopes become more basic, but you can still be creative, and be productive. This is just one way, there are as many ways as there are people with Parkinson's

Sleep study, to cpap or not to cpap

Last night I did my second sleep study in the last 4 or 5 years. The results were about the same, this time my neuro wants me to do a fallow up with a cpap sleep study, Oh Joy, The sleep study team last night said I didn't stop breathing enough to do the cpap last night, what does a guy to do. I drove there in a bit of a fog, I haven't driven in the dark for quite some time so I had a little fear of driving, but that went fine, the drive home in the dark also went fine.

Sleep is becoming a big issue with me, 3 - 4 hours a night really isn't cutting it. I know it is hard especially hard on the heart so I'll give the cpap a try, would love to get a good nights sleep though. With many folks with pd sleep is just a fond memory, so many things happen when we sleep. The brain shuts down movement so normally you don't move with your dreams, people with pd however do move and react to dreams I have in fact hit my wife during dreams at night, I have also had sleep paralysis. That is a very scary experience in deed.

Well a few hours agot the word from my neurologists, turns out its cpap after all. I go for another sleep study on the 30th of September to get the settings to adjust my new breathing machine. I have more than a few reservations about this whole thing. One of the things that bothers me most about being stuffed up with a cold is trying to breathe out through my nose. Breathing against the pressurized airflow doesn't sound very appealing to me.

On the bright side, my primary care physician ordered a chessboard and men from me for a Christmas gift. Those are turning into a great item. Woodworking is turning into a great new career. Got ane-mail from someone I talked to at the farmers market about some book shelves. He wanted pictures of other work. I am almost as busy as I alone can handle.

pass times and hobbies

One of the things I found I had to do after the three or four years of feeling like hell and just laying around was to do something, so I started woodworking. I have no real idea why but it seemed like the thing to do. I've seen several posts on various sites where it seems that I am not the only pwp who has taken that up. The last time I took a class on woodworking was in the 8th grade in school, nearly 50 years ago. Didn't care for it all that much then either. Now I can't stop.

The three things here are just a tiny bit of what I have made this last year since I started, The first picture is of a buffet, or side board, depending on I guess where you live. The second is a change table/cabinet for my grand daughter who is about to give birth to my first grand child, I believe it is a little girl. The third is a chess table/set. I carved the chessmen, my first time carving any thing too.

At this point this is my physical therapy, I work at it everyday. Since I started last summer I don't think I have gone a full day not working. We go to farmers markets and craft fairs to sell what we can, and we sell a fair amount, right now we are short of some of our best selling things because I am trying to catch up, and make our special orders, and stay on time with that. I have as much to do as I can handle right now, and it feels great. We certainly wont get rich but the money helps. I found a rather inexpensive source for wood so the margin there is good.

I'm I guess I have Parkinson's with out a tremor, or at least a visible tremor. Mine are internal, sometimes pretty intense, it feels like I should be shaking the house but my wife can rarely feel anything. I do have problems with balance, and walking, and stiffness. I can't believe how stiff I get. I do well during the day, if I keep working it seems I can work through the pain but when I quit, it all catches up with me and I am miserable. I also have dystonia, my feet and calves have cramping issues. As soon as I take off my shoes that starts. But it is all worth it to be able to continue doing my woodwork. For years I was an airline pilot, and did a lot of artwork then, painting, pencil, and pastel drawings. Since Parkinson's I can't write well enough for anyone to read much less draw, so I guess the need to be creative found another outlet.

I think we all have a need to "do" something to express the inner self some how. This thing takes so much from us, our strength, our ability to do so many things, our voices, and our sight. It stops the things that we feel from being expressed, that finding a way to let that out is a real blessing. I am proud when we are at markets and fairs to hear people say how beautiful things look, how smooth the wood feels, but I would be doing the even if no one saw, or felt the wood because it gives me a reason to get up in the morning, to fight the stiffness, the aching, the moving slow that begins everyday. I plan to do this till it is just to dangerous, or until I can't just do it anymore. I have lost the ability to do many things but I will fight to do whatever I can still do for as long as I can  do it.

my Parkinson's and my wife's hearing problems

it's a funny thing a longer I have Parkinson's the worse my wife hearing getting.it's getting so nearly every time I say something she says what, I end up repeating myself several times a day.I know it can't possibly be me when I talk to me I am just as loud as I ever was.

In one of our support group meetings we had a gal from physical therapy at the clinic where we have our meetings come in and talk about the LSVT program.shortly after that one of the people in the group went through the program.the change in the ability to hear her talk was amazing.the program is pretty intense I think it takes about 6 weeks, but from what I'm told it's well worth the time and effort.a we were allvery surprised to hear such a strong voice coming out of her.

it is strange when your voice is going and you don't realize it.even the voice identification part of my telephone doesn't recognize me anymore, I have had to re enter all the voice prompt using my new voice, and I assume this will not be the last time. I guess it's just part of what adds to the isolation of people with Parkinson's. after years of being around jet airplanes I have a pretty substantial hearing loss so going out in social occasions to bars restaurants is not nearly as enjoyable as it used to be.with all the background noise sometimes I might as well not even be there as far as trying to communicate with anybody.nobody can hear or understand me, and I can't hear or understand I'm so conversation is a bust.

I was doing some research about chocolate

I have since being diagnosed with Parkinson's have been eating more chocolate than ever before, I found a few articles on the subject and here is one.  I know I'm hooked on it.



REGULATION & SAFETY

Chocolate over-consumption may be linked to Parkinson’s Disease – review

11-Apr-2013 - By Oliver N

Indian researchers have urged consumers to limit the chocolate they eat because it is the food richest in a component linked to Parkinson’s Disease.

The review published in the Neuroscience Bulletin by Borah et al. at the Assam University in India said that β-phenethylamine (β-PEA), a naturally occurring component found in cocoa beans and its by products, may be a cause of Parkinson’s Disease.“As consumption of some β-PEA-enriched food items has become an addiction in modern life, our proposed mechanism is of enormous significance and impact,” said the researchers.They added: "Limited consumption of these foods is recommended.”However, their findings are based mainly on rodent studies and they acknowledge the effect on humans needs further investigation.Levels in chocolateThe research said that a person eating 100g of chocolate per day, the standard size for most chocolate tablets, would have a β-PEA intake of between 0.36-0.83 mg/day depending on the type of chocolate.An earlier study by Sengupta et al.found that β-PEA at doses of 0.63 and 1.25 mg/day could cause Parkinson’s symptoms in adult mice.“These results suggest that the amount of chocolate that a person takes normally might be toxic to dopaminergic neurons,” said Borah et al. in their review.Polyphenols may negate effectsHowever, they added that various antioxidants such as polyphenols could negate the effects as many studies have said polyphenols like cathechins may be protective against Parkinson’s Disease.β-phenethylamine is a naturally-occurring plant derived biogenic anime that is also found in wine and cheese. But the highest trace amounts have been reported in chocolate.Borah et al. said Parkinson’s Disease was not yet fully understood, but excessive production of reactive oxygen species and the resulting mitochondrial complex-l dysfunction were widely regarded as the underlying cause.They said β-PEA could lead to the production of hydroxyl radical (.OH) and the generation of oxidative stress in dopaminergic areas of the brain, possibly leading to Parkison’s Disease. However, more research on the human effect is needed.PD sufferers eat more chocolateScientists had previously pondered whether chocolate had beneficial effects for Parkinson’s sufferers, who tend to consume more than the general population.In May last year, we reported on a study that said there was no evidence that chocolate improved motor function in Parkinson’s Disease sufferers and concluded the reason for increased chocolate consumption was “largely enigmatic”.Source:Neurosci Bull, March, 2013.DOI: 10.1007/s12264-013-1330-2 1 ‘Contribution of β-phenethylamine, a component of chocolate and wine, to dopaminergic neurodegeneration: implications for the pathogenesis of Parkinson’s disease’Authors: Anupom Borah, Rajib Paul, Muhammed Khairujjaman Mazumder, Nivedita BhattacharjeeRelated topics: Health & Functionality, Regulation & Safety, ChocolateCopyright - Unless otherwise stated all contents of this web site are © 2013 - William Reed Business Media SAS - All Rights Reserved

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