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johnny

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johnny last won the day on June 29

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About johnny

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  1. johnny

    advocating for other parkies

    Ive been visiting fellow parkinson patients for many years.Since dropping my clIve become a lot more assertive Ithink c/l tends to dull or minds to much maybe a major component with our apathy. Getting back on topic.In my history of care over six years now it seems we need a better system.This hurry up does little to provide a good care plan.The there is HIPPA that blocks others from helping. I know many patients who really should not be in long term care but because of a lack of a good advocate there is no escape It is so sad to see this incompetent care given on a daily basis and be unable to stop it.I'm talking to sincere friends i have in government to address this. Another big problem is the lack of support from Parkinson organizations including the NPF.I have asked them to help both national and our area and was turned down.So Where do you go when family or patient organizations won.t advocate for you?Maybe we should remember this the next fundraiser comes around.Last time I called the hotline here said they would get back with me.I said do you know who I am.No they said what is your contact info,lol Never got a followup. For me i guess what Dr.Low taught me has done the most good fighting PD keeping myself healthy soI can also help others Im sure many of you also know of others who are struggling today.They need our support and we need a better system who really lives up to there words of providing the best of care. Have a nice day and help a friend.
  2. There is no better antidote to PD then keeping active in worthwhile causes. I've been busy with a primary lately.Our candidate while low on funds finished way ahead and won.She had a lot of support from little people. Goes to show money can't buy our democracy.such a revitalizing experience. Maybe that's what brings on this switch,revitalizing tenseness. Dr.Low calls it when you are struck with joy,empathy,fellowship,embrace them as they will straighten your nervous system(brain ?) I don't know many things only how I feel.Stay as active with good causes and the healthier you will be Don;t forget to spend lots of time with your grandkids also. john
  3. johnny

    Is DBS being oversold?

    Awhile ago there was a DBS presentation at a local PD support group. It sort of reminded me of a nfo commercial. They didn't even mention rytary or entacapone. Quick to downplay risks and play up benefits. Personally with the poor care many here receive the last thing would ever do is trust in a bran operation The doctors like the idea we can somehow be programed a lot easier than listening to another human being. On a bright side Fathers day turned out great with a visit from my son and family.
  4. johnny

    Does this seem normal? Sleep attacks?

    mirapix causes sleep attacks,it also can cuase most of what your mother problems,PD isusally a very slow process and needs mostly a strong will and very little meds.Goodluck with your mother.Keep her out of geri psych wards a very bad place for anyone to be.
  5. Doctor My jerking respite is following last year.I think it might have something to do with more sunlight,maybe calcium def, Ive cut c/ to a third two years ago.doesnt seem to matter on that end I was dxin 2011 been on cl since 2012. At the time I developed myoclonus I was on 3 times my present dose
  6. johnny

    Strange "electrical nerve" sensations

    Hello Well good to hear we all have company with this problem.My jerking sessions almost always start after the sensations.While this is a complicated problem there are simple solutions.. First concentration seems to work well.I never get them till my mind or body relaxes ,so keep busy,lol Another simple help for me was ibuprofen .It does help.Alcohol stops for awhile but I avoid it now due to taking comtan.Ive cut my c/l down to 3 pills a day now with 1 comtan,pretty low but it has benefits mentally seems my multitasking has returned but don't over due.lol laughter therapy keeps me breaking the temperamental cycle along with my friendly advice from Dr.Low,always there to keep me going.Good sleep helps .Jerks and pain went away lassummer after I changed brands ,activis (r539inprint) to MYlan cl2.But why they came back now even on Mylan is a mystery. Big help for me is to keep my mind off my self as much as possible..There is so much going on today.Poverty,inequality,poor wages,no pensions to look forward to.helping improve a life for others is very rewarding. Lots of things to keep my mind busy and keep the jerks away.lol Has anyone got a good answer form a doctor on this problem??????Mine seems to think it's stress.lol Happy Memorial Day
  7. johnny

    insomnia

    Dr.Low founder of recovery Inc.famous phrase on sleep.You only need to rest your muscles and your relax your attention for health in regards to sleep.He also states many sleep in light sleep and in small intervals which accumulate to give us that rest.While a fitful night might be distressing it is not a serious condition. I have found a good antidote to stress is humor ,We all forget our sense of humor at times ,but that to is average for all. Sweet dreams,lol
  8. Some people report depression and anxiety long before their dx.I my self went through my worst nervous setback 2 years before the physical signs showed. My PD anxiety comes at night when I wake up early.The answer for me is a 1/2 25/100 . One thing were you depressed before any of the meds especially celexa? So sorry you were one of the few young onset.
  9. johnny

    sleep apnea and cognative decline in pd

    Hi Bill,Your electric shock sounds familiar,I get it also before the jerking starts.I use to get it at night also when I was taking requip 8 mg.Now I hardly ever get it in bed.I also get it more late in the day and when im resting.I've cut down my sineemt(on my own)to 2 pills a day stopped the cr 50/200 If I wake up early I can take a half 25/100 and sleep till 800am.I've had the jerking since fall 2114,it went away for 5 months when I switched c/l brands,unsure now if it was the cause.I have it now only when Im idle after movement.Cutting back severely on sinemet has helped jerks and I hardly miss it for the other PD problems.Things that bring it on left hand pill rolling,talking,moving around then stopping.I can also feel its presence before it starts,i think that's a form of askinsia (drug side effect).You do sound pretty good cognitively.I also think my jerking is a form of dystonia as now with a low dose c/l the jerking resembles dystonia more. My doctors have done nothing to help this problem since I got them except to see a shrink.lol best to you Bill john I have been on a cpac for 7 years now,Im now looking into alternatives.I always think about what did others do long before the CPAC came around.
  10. http://auburnpub.com/opinion/letters/letter-system-fails-parkinson-s-sufferers/article_83c7f291-e00c-57ee-90e4-145f41997413.html
  11. johnny

    sleep apnea and cognative decline in pd

    hi my apnea was about 25 ahi beforethe cpac went down to 5 with it.It went back up to 15 for some unknown cause.Last night i used a large pillow behind me so I couldnt roll over and it went down to 6.Hope it stays that way also no jerks yet today,lol Awhile ago i posted a video of my myoclonuson dr.Okum ask the doctor I wish I could find others with this problem,lol
  12. johnny

    sleep apnea and cognative decline in pd

    I have been on a cpac for 7 years now,Im now looking into alternatives.I always think about what did others do long before the CPAC came around.
  13. Lately my sleep apnea has gotten worse.The myoclonus also has worsened .I also seem to have more memory lapses. I had a change is pressure on the machinewhich resulted in better sleep and it resulted in a improvement in my problems. Time will tell . https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4963611/
  14. johnny

    I think I have parkinsons

    Hi Lad i had to add ,MD spec.are not so spec.I have seen many who show little knowledge of PD. It's just my experience so far over 8 years.
  15. johnny

    I think I have parkinsons

    Hi Brandon the easy way to see if its PD is to take sinemet as a trial.Another hallmark of PD is loss of smell. Stabbing headaches can be a sinus problem sometimes using a simple nose spray can help alot. My blood pressure was high like yours,mine was a white coat variety and resolved with regular long walks to get in shape. I'm so sorry you are having such trouble at a young age.Difficult neurological problems get very little attention in today's ,everything is all about money medicine. Just stay as calm with your symptoms and find a smart young doctor who hasnt been contaminated with greed. best of luck john
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