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About johnny

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  1. Big News?

    Same old dog,lolSome glinch has prevented me using Johnny.
  2. 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
  3. 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
  4. 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
  5. 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
  6. Everybody who gets medicare sure likes it so why not medicare for all,lol There are some people who think being they have it all ,if you don't well that's your problem Today it's All for one,one for all vs Everyone for himself Ill always be in the All for one ,one for all group
  7. What people say that p... me off

    Hi PD I gave up paying attention to what others care to say.Often I have heard other parkies relate with the same thoughts so havng PD doesn't always equate that you are different from the normal crowd .Virtues like empathy and understanding come from a lot of self practice I have found that getting involved in making a better world seems to make my PD a very small part of my life. maybe it was a good thing Trump was elected,it shows what being indifferent in our world can cause disastrous results. If he was smart it would be terrible,thank God he,s not lol
  8. Bad mornings

    the more we ignore our temporary discomfort the better for us.I use to feel lousy in the evening and want to just retire,now I have learned the discomfort is usally fleeting.Its amazing how the mind can tame PD.