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johnny last won the day on December 31 2017

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About johnny

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  1. 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
  2. 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
  3. DAT

    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
  4. 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
  5. 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
  6. Help With A Symptom

    Hi Bill, How long have you been dx with LBD?I know a few who had it. Thanks john
  7. Duopa Pump Users-

    com Comtan makes sinemet last a lot longer by blocking a enzyme that breaks down sinemet. You go to the clinic.For some reason few who go there ever heard of comtan I was taking 4 doses a day now 2 .yes food can be a problem I cant eat after 7 or I mess it up
  8. Duopa Pump Users-

    Hi Noah Have you ever tried entacapone(comtan)with your sinemet.The next step up would be to try rytary. Ive had good luck with comtan.Now on only 2 doses a day.
  9. I gave up progression checks.amazingly my PD has been pretty good with little problems except the random jerks I still get. Im getting to believe more what John Pepper told me.he told me he never looks for sysmptoms. Ive heard others mention VitD supplements help us in the dark days of winter. Best thing for mood is ,keep your sense of humor handy. Spring is coming early this year
  10. Will the situation ever stabilize?

    Big thing to watch is sense of smell decline.If she responds to sinemet well you can bet on PD and not the rare pd plus.My sense of smell disapperead about a year before physical problems.
  11. care article

  12. Parkinson's Disease & Dementia

    Hi Tom My wife is ambivalent of my PD.Another case of outer environment we cant control.People don't know the reason who other people lack empathy or any other positive emotion is they don't take the time to practice it.I myself never experienced it much till I made a habit of visiting others at our VA hosptial.
  13. I've come to realize going to the doctor so far is a no win .Well the doctor does get paid but not much benefit for the patient.As far as center of excellence labels dont be fooled.In all my appointments with them never did they read my patient questionnaire . My personal solution to our poor care is to have patients band together and form a true patient organization and hire our own physicians to advise us.
  14. news article

  15. Space is your best friend

    Hawaii air has extra leg room seat very affordable i didnt have any problem on our flights