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johnny

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  1. Hi Mark Ive written you before about my difficulties with myoclonus.Last march I found changing brands of c/l helped alot.They went away for almost 5 months after 3 years of difficuly tthen I had my CPAC break down.they came backAfter it was repaired they went away.Same thing happened after a trip to Denver change is altitude I think.Came home east and went away.Then they slowly came back.I also cut out my sr50/200 as the jerking started after I started using it 3 years ago.It does seem to worsen with the sr so Im trying just a 25/100 before bed I've also been taking 100 mg comtan along with 1.5 25/100 3x a day.Ive also added vitamin d for less sunlight I wonderI heard manufacturers can subcontract the drugs out to smaller companies and wondered about quality So far no success almost 5 months wonder what you might have to say about it. thanks john
  2. Yes this approach works.Yesterday I went for a short walk with my dog.Well I got down to the pond and decided to keep going.Through the big orchard,up the hill and over the top.On the way up I always use a little laughter therapy to keep me going,lol,Down through the cut corn fields and back home i,About a 3 mile walk.felt pretty good no fatigue ,tight muscles or jerking.Then i realized i had not taken any pills since the night before,Now that is pretty good for going on seven years of PD. Have a nice day john
  3. VETERANS' DAY

    In behalf of all veterans thanks Linda.. Dr.Low was a WW1 veteran.he talked about his service during the war.he was a officer in the Austrian Army Good thing for me I stayed with him all these years. No veteran would suffer from nervous symptoms long if they had his wisdom and used it.
  4. How did you talk to others?

    Hi Melissab So sorry you have PD.Those young onset have my empathy.Im almost seventy now ,had it almost 8 years.Most are like myself whose life was spared. Dont be fearful of it as no one knows what we will experience of PD.I met a man almost 85 he had it 20 years and you would never know except for a slight tremor I myself had a coworker .never thought of him having PD till someone told me years later after he died.Dont let your boss drive you into disability. Enjoy your family and make sure your husband will fight for you if needed. Healthcare today has a lot to be desired. As far as stress surrounding it.It is fate so we didnt bring it on.others attitudes are also outside of us and our control. Worry is there but let it run its course by not making it a issue I have good luck by paying attention to what Im doing so I have little time to worry,one of my old habits people lack empathy only because they fail to practice it.When I was young I was no good example either Take care of yourself first best john
  5. latest news on healthcare cuts coming

    the budget cuts 1.5 trillion from medicaid and medicare and gives to the wealthiest who hardly need it.It also was a republican venture no democrats voted for it.. Say good bye to our healthcare maybe the wealthiest will take care of us.lol
  6. https://www.michaeljfox.org/foundation/news-detail.php?what-going-on-with-health-care-in-washington
  7. “On” when I should be “off”

    Hello I can miss my morning dose without much concern if I dont exercise to much. The brain is a complex organ.Two things that affect the entire brain are emotion and concentration It;s sort of like the locomotive and the rest of the train.PD being the caboose,lol Ill tell you this idea I have of looking at my PD as a little problem helps keep it under control. Sure I have anger and unrest come upon me but I know to resist it as a calm mind is major component in living with PD. Dr Abraham .low said we must move our muscles and change our thoughts. Nervous health is on a very parallel course with PD as they both affect the brain Of course we can.t tell our body to stop tremors or dystonia but I can always get out of my misery by getting going again Just a few observations for the day
  8. fixing and fumbling

    Bill Dont take dementia to seriously in PD.I have found task focusing has helped greatly.I am more organized then ever in my life.My only drawback is sometimes a little word debt;lol Sure we are slower but also better in quality of mind.I just back from our annual democratic dinner we have.Im up on all the latest politically. Being involved in our todays crisis in our nation gives me much energy and very little time to worry about PD and my future dont give up on the banjo and watch the effects the drugs have on you. They can help but also cause problems we dont need best jphn
  9. fixing and fumbling

    Lately I've noticed difficultly in some repair work of mine.Putting things back together seems more difficult.I think my vision is somewhat affected as I have problems lining up my hands and eye. Im always saying why is everything I do so difficult and clumsy. One thing that has improved is many old toolslike my chainsaw and trimmers and boat motors are running again.It just takes alot more time which I have in abundance nowOne A sense of humor has kept my frustration levels low.
  10. traveling with pd

    Last year we went to Hawaii and stopped in california for a few days. This year we went to Colorado for a week, Many people Ive met in the PD community seem to like to travel.My father was a good example.He was always on the go and didnt let PD sto My myoclonus seems to flare up on tripsSleep changes Ive found bring it on.,Airports can be embarrassing when your in those moves,lol I f i do have problems I usually tell the staff that I have PD which causes them,never been jerked off a plane,lol Whatever your trip plans are dont let PD stop you. DR.Low said we thrive on our hopes dreams and wishes. I do though seem refreshed more when Im visiting my grand kids and family
  11. Big News?

    Same old dog,lolSome glinch has prevented me using Johnny.
  12. Big News?

    My father had PD also.He worked tirelessly wth his Parkinson grop.he traveled tomany places seeking information on PD.This was before the internet and most Parkinson Organizatons we have today.I think there is alot more hope today then in 1991 when he passed. A doctor once spoke to our PD group once.her main thought was research is a very big pie.Unfortuantly she said to little is being spent where the cure might lie. One thing that will help many is a better standard of care for those who now have PD.The proper care would extend our lives and help reduce disability this disease can bring. Ive seen to often patients needlessly lacking proper exercise diet and drug savy. If I was the doctor believe me my patients would be so busy staying well.lol Dr.Low who found the cure for the nervous aliment many years ago had a great saying. We have to make life a business not a game Business is geared more for effort,games are geared for comfort. That sure is a great way of dealing with PD Of course his best.Humor is your best friend ,temper your worst enemy. My sister told me the other day I laugh alot.Once vertical why not chuckle Six years now,no honeymoon break yet.Still getting up and feeling good Hope you all are to. john
  13. Excessive Fragmentary Myoclonus

    Hi Fred I tried that drug but while it worked it made PD worse and when it came back it was worse. I also could control the jerking pretty much if my mind was focused and I was moving around so I hardly got bad jerks while driving. Another thing I usually get a shock like pain before they started. I've aso cut out my c/l sr before bedtime and only take 1 25/100before bedtime.I get some leg restless but after some am coffee Im ready t go. Im now a firm believer in the fewer drugs we rely on and the more we rely on our mind the better we will live. Glad to hear from you again. john
  14. Hello Everyone Ive had PD since 2009.I started having Myoclonic Jerks three years ago.My doctors till this day have been unwilling to help me much.They like to write it off as stress. I did find much relief with switching my carbolevadopa to a different generic but it did return when my CPAC machine failed.When I went back on it they died down. I went to Colorado(high allitude)caused it to malfunction and my apnea returned along with the jerking almost ruining my vacation.My AHI almost tripled to 12.The company said it should compensate but when I returned to NY my sleep got better and the jerking also I found the condition Excessive Fragmatory Myoclonus which linking sleep apnea,PD,And myoclonus.Preety self explanatory but why over six Movement Doctors didn"t know about it. I guess the next step is getting another sleep study to maybe further understand this problem. If any of you ever heard of this please respond Hope you all are well .It seems I cant use my old name Johnny Johnnny
  15. Fear is a belief,you can always drop or change a belief.People have only their indifference to blame,We must always do our civic duty and stop calling it Politics,lol
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