• Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    


  • Content count

  • Joined

  • Last visited

  • Days Won


wilsons66604 last won the day on October 13 2016

wilsons66604 had the most liked content!

Community Reputation

35 Excellent

About wilsons66604

  • Rank
    Advanced Member
  • Birthday 02/16/1955

Profile Information

  • Gender

Recent Profile Visitors

168 profile views
  1. I have never had trouble going to sleep. My problem is that I wake up after 4 hrs. My first doc had me taking 2 CR sinemets a day as well as 4 regular. He never gave me times when I should take them so I guessed. The new doc has adjusted several things. I now take a CR at bedtime and the 2nd when I wake in the middle of the night. It seems to help. I believe it is my Parkinson's symptoms that wake me up. Meds wear off and I wake up.
  2. I have officially graduated to 1 6mg patch. It's bigger but it's easier to find a place to put 1 patch vs 3. I continue to feel much better! BTW: I printed off a coupon from the Neupro website. I am now getting the patches for $10 (instead of the $30 I was paying) a month for the 1st year.
  3. I picked up the supply of 6mg patches today. Now just one patch a day instead of 3 2mg patches! the first couple of days on 6mg was rough. I felt like crap. Feel real good now!!
  4. I recently had knee surgery and am recouping from it. Since knee was just scoped the pain was not bad at all. I had no need to take pain meds. After a painful dystonia episode one morning, I thought to myself... knee surgery pain is nothing compared to the cramping feet and legs I put up with. I've found that the best pain medicine for Parkinson's related pain is my Parkinson's meds. Not the usual opioids prescribed.
  5. 3 week update after reporting to my doc on the effects of 4mg, he has decided to have me try 6mg. Basically I told him I was feeling much better but noticed increased cramping in extremities. Just when I thought I was set.... goes another week of adjusting to another med change. its a good thing my body has a lot of surface area cuz I am now wearing 3 patches.
  6. Neupro is a dopimine agonist. I'm not familiar with Requio but it looks like it is also an agonist. Neupro says it has similar side effects but I didn't have any trouble converting to it.
  7. A few weeks ago I decided to check out this Tai Chi. It looked like would be a great help. My friend supplied a couple of DVDs and I started a coarse. It didn't take long for me to notice that my knee was not up for the challenge. Tuesday @8am I'm having the knee scoped to cleanup what is probably a tore meniscus. Looking forward to Tai Chi as soon as the knee let's me.
  8. Well, it's been a couple of weeks and feeling great pretty darn good! I have settled on 2 2mg patches every day (I will go to 1 4mg patch when new Rx is written) No more naps needed (but have been known to take one anyway) Sleeping better (7 hrs last night!) fewer OFF times.
  9. mPower is the name of the iPhone app.
  10. Day 3&4 on 4mg since I was having good results at 2mg, we decided I could try 2 patches. Yesterday started out pretty shaky and hyper but calmed down in the afternoon. I did a little testing with the mPower app. The tapping test were done just before a regular dose of sinemet and also a couple hours after. I could see where there is less fluctuations with tapping counts. The patches seem to keep me at more of an even keel. Here is a screenshot of the results
  11. Hang in there Luke. Dont worry to much about what they call it. Just treat your symptoms. My first doc would have never said I had Parkinson's based on my symptoms. He gave me sinemet and when it helped, he was perplexed. "I don't look like Parkinson's " so he scheduled the scan. the REAL determination of Parkinson's was realized when the sinemet worked for me. The scan was nice for a backup.
  12. Let me start by saying I am awaiting a call from a Neuro Optimologist to schedule my first visit. My eyes are never in focus. Lights Lights Lights! I am obsessed with lights. I told the dear wife the other day that I am sensitive to lights and need to keep them as low as possible. This was brought on by my complaints of her turn EVERY light on in the house (I lost count of recessed ceiling cans). I feel like I am in a basketball arena! I've purchased many of the automated lights so I can use my phone to dim as needed (simplified description) We can tell Amazon's "Alexa, turn on the living room" "Alexa dim the living room to 10%" So... Yes, I have sensitivity to light
  13. Tell your MDS to read up on DaTscans and how they should not rule out a diagnosis based solely on it Its interesting info to have but should not be the only reason for not diagnosing you with Parkinson's DaTscans come with a big disclaimer and most insurance will not cover cuz it's experimental. Good luck
  14. This sounds similar to the "safe response" I got from my docs. They would only caution me about the generic and broad misconceptions of cognition and paranoia side effects (the Reefer Madness mentality). Most doctors are clueless about marijuana so they provide the overly cautious answers. I would ask...what is causing the cognition and hallucinations problems now? Is it the medications? Could the marijuana help? Maybe. you never know till you try. There are so many options and strengths now. It's no where near as harmful as L-Dopa! I have used marijuana all my life. It did not effect my cognition nor given hallucinations. In fact as I sit here, I am struggling with the light headed floating feeling from my increase in dosage of Nupro patch. It's worse than marijauna side effects. EDIT: just to note that since I started on Parkinson's meds, my need to use Marijuana has declined probably 95%. There seems to be some correlation there. Marijuana does help me and others. good luck!
  15. my full body jerks (& dystonia) are what made me see a doc. I started mirapex & sinemet (both generic versions) a year ago and that helped a lot. Recently, it seemed like the jerks were increasing in frequency. Since changing from mirapex to Neupro patch (2 days ago) I have almost no jerking!