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Everything posted by johnny

  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


    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. 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/
  10. 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.
  11. http://auburnpub.com/opinion/letters/letter-system-fails-parkinson-s-sufferers/article_83c7f291-e00c-57ee-90e4-145f41997413.html
  12. 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
  13. 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.
  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
  16. johnny

    Antidepressants and Rasagiline and Pramipexola

    When I get up that usally does 90% of getting going and saying good buy to PD blues.Its my 9th year about same dose c/l.The only thing that bothers me is the pesky jerks.What a conversation starter.lol .One big thing I do is visited those in homes and try and encourage.personally I feel no one with PD should need one Number one cause is over medicated and lack of good information.if they play their cards wellI think some doctors frighten patients into moving into NH far to often.There is no way I would ever consider them. PD is advancing but my will is steading the course.lol Laughter therapy a great help. haha,hehe hohoho
  17. There have been many mentions of organizations being devoted to better care for PD.Here where I live you would think being close to a Center Of Excellence and many Movement Specialists there wouldn't be a problem.The priority here is the group not the patient The myoclonus I have been struggling with for over three years has never been taken seriously and now the only advice is to seek counseling..LOLIve tried changing doctors so I don't have to go out of town with little avail.I also have tried patient advocates with little success The flip side of this problem is my self management and listening to other patients has given great rewards.many people have helped me and they also had good doctors who cared for them.Unfortunately not everyone has made this effort and some have paid a dear price for it.I feel for those people and do what I can but not everyone is going to listen .What I have found is the less medication you can get by with the better you are going to be along with a healthy lifestyle.For what we pay for healthcare insurance you would think we would get a decent product,lol Organizations who talk better care for us should act on it Happy Holidays
  18. johnny

    Are you happy with your PD healthcare

    I spent the other day getting petitions for a candidate here.It was a good day , A great tonic for the nerves.Dr.Low's favorite,Do the thing we fear and hate to do.lol Life will get better,if complacency is replaced with action.Well I'm getting to think our wills are our greatest asset.Fear is only a belief. Spring is coming back tomorrow.Flowers should be out soon. John
  19. johnny

    Are you happy with your PD healthcare

    Hi Gardner, I was told comtan would make dyskinesia worse but being I don't have dyskinesia it relevant.You'll never know how it works till you try.In my area doctors avoid it maybe because it's easier for them to stick to one It bothers me how inept many doctors are that they won't help with this problem Ive been having for over three years..Most likely because it takes more time they don't want to give.Someday maybe they will get the same treatment. I tried to get a insurance company find a suitable physician.All they said was we cant change poor care.It's the way it is today .I'm next going to my senators and congresswoman I'm working for a let them know how poor care is unacceptable. Did you ever find a suitable doctor? john
  20. johnny

    Are you happy with your PD healthcare

    Hi Gardner i was going over a old post and saw your entry.I to have problems with ridgity.If I dont add the comtan with my sinemet it is much worse.Have you tried comtan or stalevo yet? For those who can afford rytary it is supose to also work well. Hope you rewell John
  21. johnny

    myoclonus help

    i Doctor I ve written you before about this problem I have been having since 2014.It seemed to finally go away during last summer.I thought it might have been a change in brand in c/l. It came back in september after I had sleep apnea return for awhile due to CPAC problems.Lately it has gotten worse especially in evening while Im sitting around. Ive cut down for some time to 3 to 4 25/100 with little effect on predicting the jerks.It seems the big trigger is disturbed sleep Drugs like clonazepam have limited effect and seem to make the PD worse. Many times the jerks come after I have shock type pain in my body mostly feet My doctors have not taken up on this so I'm trying to find someone who can help.Last January I made a trip to the NIH on this but got the same quick answer of stress. Many who have myoclonus have PD.But few people who have PD are bothered by it. I have talked with others who also have this problem ,few have told me much has been done to help understand what causes this. Do you know of any doctors studying this problem ? Thanks john PS i did post a video of this on youtube myoclonic jerks with PD
  22. johnny

    myoclonus help

    Hi Doctor, These movements were diagnosis myoclonus through a EEG taken at a local hospital.I looked it up there are many possible other causes besides PD yet my doctors did not pursue any of them. I saw Dr.Hallett for a brief exam after a resident gave me a through exam.I believe the final answer there was not a objective diagnosis since no testing was done.They could have done better. Have you ever seen movements of this nature and what was your recommendations.? Thanks so much for your help here best john
  23. johnny


    The test has risks and few benefit sand it costs a lot of money hospitals love..A radioactive dye is given to help show results which can damage your thyroid.Why these tests are forced on us when a simple Sinemet challenge puzzles me?MJF foundation doesn't recommend it should be enough to stay away. Maybe things would improve for many here is we were more looked on as patients instead of customers. best john
  24. johnny

    Questions for next Neuro visit

    hI cLAIRE SO SORRY YOUR HAVING SO MUCH ON TOP OF RAISING A YOUNG FAMILY.iF YOU ARE CONSIDERING pd.The big thing with PD that is almost universal in loss of smell as a early sign. As far as doctors writing you off with anxiety this is also very common ,young doctors are actually taught to do this which a difficult case is presented.I would get a good primary who can help you sortout your problems. best john
  25. johnny

    Help With A Symptom

    Hi Bill what has progressed the most since you were diagnosed lbd ?One thing about lbd is sinemet is hardly used except in small doses..Your cognitive skills seem pretty good with your writing.Even with me I have to go over what I write a few times to check for errors.lol Have a pleasant weekend john