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Everything posted by Skiing

  1. Skiing

    Do any of you here sleep - I get little or none

    With ne i found the sleeplessness is caused to a large degree by the medication. So i try to avoid taking sinemet after 4 pm and i stopped neupro (agonist) and now i can sleep again
  2. Skiing

    New to Sinemet

    I have the same reaction to sinemet at night. I was unable to sleep for a year until i realized that it wasnt parkinsons that kept me from sleeping but sinemet. Now i try to avoid taking sinemet after 3 pm and i sleep much better
  3. Skiing


    Yes very much so. Pain fatigue and mobility get much worse .
  4. Afroney well done. I dont darecto dive down because i might not be able to get my head up again
  5. The thing is i cant get my legs lower in the water because they keep going up.
  6. J that sounds exactly the same. Interestingly for some legs float for others they sink. Weird. Afroney it happens with all kicks.
  7. Noticed this summer i have problems swimming. My legs dont drop but seem to float up all the time so half my stroke is above water. Hurts my neck and back. I cant get them down. Anyone else experience that??
  8. Skiing

    Pain in the leg

    Yes it can suck. Thanks for the vit d tip. I find going downhill very bad . Pain and rigidity worse.
  9. Skiing

    Pain in the leg

    I have the same issue. It comes and goes. But i am never painfree. It can last for weeks. Pain medication doesnt help. The only thing to make it better is hard leg exercise. Functional or weights. The harder the better. Also perhaps check for mercury. after a few years i got the same in arm ellbow and then other leg.
  10. I have been diagnosed 4 years ago. Ldopa has no positive effect on my pd symptoms. So i had a l dopa challenge again. Not only did my symptoms not improve but they actually got worse particularly my rigor and pain. Mds told me he has never seen such a reaction and is at a loss. My solution so far has been to go without medication. Unsure what to do now? Thanks.
  11. Skiing

    l dopa making symptoms worse

    No one seems to be questioning the pd diagnosis. All they said was that i would long be in a wheelchair if it were atypical pd
  12. Skiing

    l dopa making symptoms worse

    Thanks. Would absorption problems also intere with the soluble ldooa challenge test? It seems to me that it does get absorbed since stiffness and pain increase considerable with ldopa
  13. Skiing


    I once read a pathology paper from japan. They counted post mortem the neuronal postganglionic cells in the left heart wall. Pd people had a vast amount of fewer cells than age matched healthy ones. This shows that not only the central nervous system is affected but also the periphersl one. Year 2011 cant remember the author.
  14. Skiing

    Crashed, hard

    For me this is not dose or timing dependent. It can be triggered by food or not enough excercise. But usually it just happens.
  15. Skiing

    Crashed, hard

    I know these crashes pretty well. Sometimes it takes me 3 days to recover. I have learned to accept them. I sleep when i have to.
  16. None of the parkinsons medication have worked for me so far. My mds just kept saying up the dose of sinemet. I tried now 300 mg singular dose. 700 mg a day. No benefit. But dystonia and some diskynesia. Drives me nuts. Mds never suggested anything else but pd. Does anyone else have similar experiences? Thanks.
  17. Skiing

    medication not working. anyone else?

    Shera. Island woman. Thanks for sharing. It is such nuisance. I have never had a reaction in a positive way. Just side effects. Can skip doses however i like... just dont know what to do now really. Symptoms are getting really bothersome and i was hoping for some smoother walking and less pain. Ironically the only thing that considerably reduces tremor is ursidiol.
  18. Skiing

    medication not working. anyone else?

    Have been diagnosed for 4 years. Dosing schedule was 3 times 100 mg a day. Then slowly moving up to 600 mg a day in 3 doses a day. Also tried to split the 600 mg into 4 and 5 doses a day to see if this has an effect. Then went up to 700 mg in 3 doses. 300- 200- 200. Feel awful with this medication. Hoping to see my mds next week.
  19. Skiing

    question to the ladies

    Was wondering if anyone of you ladies also notices very abrupt symptom changes throughout the cycle. Within a week before menstruation my symptoms get much worse than usually, verry sudden, ldopa is not working. Then first day of mrnstruation and its like a switch has been turned. Symptoms better. Ldopa working ( it never works really well for me). Am curious
  20. Skiing

    For those of you working...

    In my experience disabled or injured people notice immediately because they are more fine tuned. Just like i notice people with parkinsons on the street.
  21. Skiing

    Music as a tremor trigger

    Dvorak seems to calm me. Mozart makes me shake.
  22. Skiing

    question to the ladies

    Thanks everyone. I am kind of curious whether any changes might be visible in bloodwork and hormone lrvels. So next time i plan to get them checked when everything is bad snd a few days later. Probably nothing but still interesting though
  23. Skiing

    question to the ladies

    Thanks feisty. Is it also a few days before or at a different point in cycle?
  24. Skiing

    question to the ladies

    Hm but its not only the response to ldopa. Even without ldopa medication i have these strong symptom changes. ( tested it out of curiosity)
  25. Skiing

    Knee pain when standing up

    i have the same. i avoid sitting for more than 10 min.