Listen to your body

It's been a while since I wrote anything, but lately things have been pretty quiet. Luckily meds have been balanced and keeping things on an even keel . Even sleep is beginning to come, the CPAP machine is making a big difference. I never thought it would make much of a change, but I will be the first to say I was mistaken.

Something that has come up in discussion has been people who don't believe you can have Parkinson's with out a tremor. People with Parkinson's being told by others in the medical field that “you can't have Parkinson's, you don't shake”. This is one of the things that make this disease so difficult to get a diagnosis. Many physicians don't have an understanding of what it is. About one third of the people with Parkinson's do not have visible tremors. I told my primary care physician a couple of years ago that I sometimes walked like I was drinking, but hadn't had a drop. He said he never heard of that as a symptom of Parkinson's. I carry a wallet card that states “I am not intoxicated, I have Parkinson's disease” and then provides the necessary information. The card was provided by the National Parkinson”s Foundation, so it must be a part of it.

As part of my journey to get a diagnosis I had a sleep study that said I had mild sleep apnea, and something called Limb Movement Disorder, the Dr. who told me that added that doesn't necessarily mean you have Parkinson's, both of which are none movement symptoms of the disease. I had balance problems that I had no idea that it meant much , but it was another symptom. I used to get sweats anytime I did anything physical, I would be drenched with any physical activity, another symptom. I went to a Dr. who was at the time my primary care Dr. and he said after I told him what was going on”I'll be sure to note your multitude of symptoms,” That was my last visit with him. Trying not to beat a dead horse, but that is one of the problems with the MJF show, he is the face of Parkinson's disease, and his portrayal of a man with pd and his family life. He just continues the lack of information, and misinformation about Parkinson's.

It is important for people to understand what pd is and how to notice it, on reason for that is if you have a family member with it, it may hit in the family again. Another big reason is that the cause of Parkinson's, and Alzhimers and other degenerative brain disorders are unknown, in many instances they may be enviromental. If you have been exsposed to certain pesticides, or solvents you may be at risk. I just read, and posted an article about sleep, and that if you don't get enough there are toxins that build up in the brain that can possible contribute to your chances of developing on of these diseases. If you don't know what to look for you wont know when it may be a problem. Most people with Parkinson's just start out years before knowing something is wrong, not knowing what, but just not right. By the time most people are diagnosed have already lost 80% of the dopamine cells in the brain. Knowledge is so important, pay attention to your body it is trying to tell you something.

interesting article on sleep

This is an article from  NBC news on their website.. This is one reason sleep is so important. Can't wait for my CPAP MACHINE.



good night's sleep scrubs your brain clean, researchers find

Barbara Mantel NBC News contributorOct. 17, 2013 at 2:18 PM ETGetty Images stockNew research finds that a newly discovered system that flushes waste from your brain is mostly active during sleep.It’s no secret that too little shut-eye can drain your brain, but scientists haven’t fully understood why.Now, a new study suggests that a good night’s sleep leaves you feeling sharp and refreshed because a newly discovered system that scrubs away neural waste is mostly active when you’re at rest.It’s a revelation that could not only transform scientists’ fundamental understanding of sleep, but also point to new ways to treat disorders such as Alzheimer’s disease, which are linked to the accumulation of toxins in the brain.“We have a cleaning system that almost stops when we are awake and starts when we sleep. It’s almost like opening and closing a faucet -- it’s that dramatic,” says Dr. Maiken Nedergaard, co-director of the Center for Translational Neuromedicine at the University of Rochester Medical Center.Nedergaard is the lead author of the study published Thursday in the journal Science. She and her colleagues first reported last year their discovery of the brain’s unique waste removal system, dubbed the glymphatic system. It works like a neural trash truck, clearing away toxic by-products that build up when you’re awake.The scientists had used two-photon microscopy — a new imaging technology that allows scientists to see deep inside living tissue — to peer into the brains of mice, which are remarkably similar to human brains.They found that the glymphatic system pumps cerebral spinal fluid, CSF, through the spaces around the brain cells, flushing waste into the circulatory system, where it eventually makes its way to the liver.Their latest research, also in mice, used the same technology to focus on the timing of the glymphatic system. The researchers discovered that during sleep brain cells contract, increasing the space between the cells by as much as 60 percent and allowing the spinal fluid to wash more freely through the brain tissue.“This study shows that the brain has different functional states when asleep and when awake,” Nedergaard says. “In fact, the restorative nature of sleep appears to be the result of the active clearance of the by-products of neural activity that accumulate during wakefulness.”The scientists found that the glymphatic system was almost 10 times more active during sleep than when awake.“The brain has only limited energy at its disposal and it appears that it must choose between two different functional states — awake and aware or asleep and cleaning up,” Nedergaard said. “You can think of it like having a house party. You can either entertain guests or clean up the house, but you can’t really do both at the same time.”One of the waste products of the brain is the protein amyloid-beta, which accumulates and forms plaques in the brains of Alzheimer’s patients. Researchers at Washington University in St. Louis had previously shown that levels of amyloid-beta in mice brains dropped during sleep because of a decrease in production of the protein.“That was an observation that inspired our work,” says Nedergaard, “and we decided to look at clearance.”Both lower production of amyloid-beta and faster clearance are likely key to lower levels of amyloid-beta during sleep, says Nedergaard. Her view is echoed by Dr. Yo-El Ju, a professor of neurology and a member of Washington University’s research team.“Possibly there are both mechanisms working that produce the large variations between wake and sleep that we see,” says Ju.Patients with diseases that cause progressive brain decline — Alzheimer’s, Parkinson’s and Lewy Body dementia — often sleep poorly. The diseases are also associated with the abnormal buildup of protein in the brain.While researchers don’t yet know if these plaques are a cause or a result of neurodegenerative disease, the new insights about the way sleep clears waste from the brain could lead to new treatment approaches, according to both Ju and Nedergaard.“In addition to trying to decrease the amount of amyloid-beta production, perhaps we can also try to increase the amount of clearance,” says Ju.Nedergaard and colleagues are testing possible drugs in mice that could do that.“Understanding how and when the brain activates the glymphatic system and clears waste is a critical first step in efforts to potentially modulate the system and make it work more efficiently,” Nedergaard says. Research in humans has shown that levels of amyloid-beta decline during sleep, as it does in mice, but it’s not yet known if the mechanisms are the same as in mice. “Those experiments in humans to measure both production and clearance during wake and sleep are ongoing. We don’t have the results yet,” says Ju.

My journey to olpilot

Earlier I was asked about my desire to fly and if it was deeply ingrained. Some of my friends know the answer to that. From my very first memories I have dreamed of flying. When.I was in kindergarten where we lived there was a lilac bush with an open area inside, I would go in there and.pretend I was piloting a rocket. That was in 1957 must have been from watching Jet Jackson, or Buck Rodgers or something. I would play with a tricycle putting it on the side and using the back wheel as a control wheel. Even then I knew pull back to go up, push forward to go down. At 13 in 1965 I stole an airplane, a cessna 150. I flew for about 15 minutes, landed in a corn field, across.the rows, broke off the nose wheel and flipped over. But at 13 never having touched the controls of an airplane I took off, flew and landed. If I can I will include a picture of the newspaper article. I later learned to fly legal from the owner of the airplane, got my ratings,including my flight instructor rating and went to work for the man whose airplane I stole. I then went on to fly for a airline for 27 years.

The reason I bring this up is people make so much of celebrities and how terrible it is that they can't act, or can't sing any more after Parkinson's. The thing is they are not the only ones who lost a dream. Many many people like me have also lost a dream. Many will no longer see or hear Linda Ronstat sing live, many will no longer have a safe ride on my airplane.

I think it is so important to remember that millions of people suffer from Parkinson's who also had a dream, also made a difference in the lives of people. There are so many families that have been hurt by this disease, that won't end up on a sitcom. That no one will ever have anyone but family and a few close friends morn the loss of their dreams. This isn't the MJF disease, or the poor Linda Ronstat disease. It is a terrible, debilitating disease that effects millions.

When I was first diagnosed and told people a common response was,"oh Michael J Fox has that, there are pills for it, it's not like cancer or anything". No it's not, for this there is no chance of a cure, no such thing as a remission. It is a steady physical, and possibly a mental decline. It robs.you of most of the.functions of the body most take.for granted. On one website someone talked of t-shirts for parkies thst said " I pooped today", a big deal for a parkie. I know TMI, unfortunately there is so much more. None of which you will ever see or hear about on a sitcom. I wonder how many will ever have a good laugh to a show where someone has breast cancer, or.have s good chuckle over grandma's Alzheimer's. There are not so many things I find funny with this that I could make anyone laugh about. Yes there are funny things that happen because of this, but for the most part they are the same things that happen between most couples that can not be shared because they are so personal you would not share them outside of your relationship.

This is my rant for awhile. I'm sure there will be more.

answer to a question on another site

This started a discussion after I read it, I asked my wife what she thought and the answer surprised me. She said she was pretty much always scared. She works an hour away and is afraid of leaving, is worried about my working in my shop all day, about me being alone.

She has never been shy about saying what she thinks or feels, not always a good thing. Years agto we were headed home to Colorado from our boat in Door co Wisconsin, long story there too. We decided to take the long way and went through Rapid City and by Devils Tower in Wyoming. At the time the motor cycle rally In Sturgis was going on, we pulled into a gas station and sat behind a couple of bikers in their club jackets, big patches on the back and all. They filled up and walked in to pay, she started to yell at them to move!!! I stopped her and asked if she was trying to get us killed, us in a little red Nissan, filled with sailing gear and two cats. She just never seemed to be all that afraid of things. So I never gave it much thought.

But she has said things since my diagnosis, sometimes thinking back I guess she was scared that I was doing something I probably shouldn't have been, trying to prove to her or myself I could still do this or that. Sometimes I will get upset because I feel like I'm being treated like a child, sometimes I act like one, but she does it because she is afraid. She I think sees my limits better than I do and tells me so. I can take pretty good care of myself, but I do things that with a little thought, like a child, I wouldn't do. More and more that happens, more and more I give her reason to be worried.

She has taken me to the emergency room more than once against my objections, she was right to do it. I get upset, but there has to be an adult in the house sometimes. Not to say that I'm always that way, but sometimes I hate to admit I can't do something. I'm glad that she speaks out when she's scared, I hate the fact that she has to. I do take it personal, I do get mad and I do get over it.

Living with Parkinson's sucks,I think loving someone with Parkinson's is hell. It's hard being in this body,with this brain that are both going bad, but I am not the one watching it, unable to do anything but worry and be scared. We are both powerless, helpless, but it's a little like driving a car going out of control, if you're the driver you still have the illusion of being in control, if you're the passenger your just scared and watching a crash. The truth is.you're both scared.

Parkinson's pain management

Yesterday I had a doctor's appointment with my primary care doctor, it was to adjust my pain meds. Some go up, some went down. My pills for night pain went up, my day time went down. I think this is one of the things I dislike the most, but it is one of the things that rule my life the most. Most think of Parkinson's as strictly a tremor problem, but it is only.a part of the.disease. The nonmotor symptoms are to me more debilitating than the tremor. They range from cognitive problems to depression, sexual dysfunction(although not on the MJF show), severe constipation, blood pressure, sweating, I guess you name it. If the brain controls it, with Parkinson's it can fail.

Most people never see the real disease unless you live with it day in and day out. When meds are working most of us don't believe  we have it.  On.an off day we and every one around us knows we have it. Most people don't know there is pain withpParkinson's, the ridigiity, something called dystonia is.one.of the worst. It is cramping and your muscles trying to contort your body into shapes it was never ment to be. In my  caseit feels ad though my feet are trying to fold between my big toe and the next one for the lengthof my foot. That happens during the night into.early morning when most of the meds have warn off.

My point in all this is a couplee of things, I have found so many sceptical of people who don't shake like an Aspen leaf Iin the fall, although 30%  of folkswith Parkinson's have no tremors, and when meds work even we find it.hard to.believe we have it but we do. MICHAEL J FOX ,is a great fundraiser for Parkinson's, and is.probably the most visible face of the diseas, but.he Is not typical of the disease.  Many with it have equally great attitudes most can't pick and choose how our day goes. We either have to keep going, or we.just have to stop.

So what does this have to do with pain management? Every bit of Parkinson's is a pain. From the time you  get up until thetime.you get upyou are in pain. I ttake morphine to sleep,.and.hydro codon when awake, lyrica for neuropathy   and a muscle relaxer for.cramps and an antiviral that helps with uncontrolled movement. If I.appear to.be ok it just means that all of these are working, if not, well who knows...

Laughter, I miss it

I was talking with a parkie friend about this and just wonder if it is just us. Do you laugh like you did before Parkinson's? Before this disease I had a great sense of humor, I played practical jokes, I told jokes. There were times when I would laugh so much my eyes teared up and I could barely see. My stomach would hurt from laughter, sometimes I could barely get through a joke with out laughing. I haven't laughed like that in years. Even as the depression began creeping in, I still could find things that made me laugh. I don't remember the last time I laughed, and my friend was the same way. Is it the Parkinson's, the drugs, or something else?  I don't feel depressed any more, I'm not on antidepressants, things make me smile, but I don't laugh, maybe a chuckle or two, but never a good ol belly laugh I miss that.....

Sleeping with a CPAP

Last night I had my first experience with a CPAP. I thought it would be a waste of time, I was wrong. I had the best sleep I have had in a very long time. I can't believe that with all the wire's attached to me and the mask staped on I was able to sleep at all.

I don't know if I have Obstructive sleep apnea, or the Parkinson's kind where brain just doesn't tell you to breathe, I guess it makes no difference, I slept.

I was very sceptical of the CPAP machine, I know many said it was great and worked well for them. Now I believe, it won't change the pain at night, the cramping in my legs and feel, but every obstacle removed is a giant step forward. If you snore, wake yourself up with a snort, ask your doctor about a sleep study, from what I hear it could save your life.