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wilsons66604

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wilsons66604 last won the day on October 13 2016

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About wilsons66604

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  • Birthday 02/16/1955

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  1. 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
  2. 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.
  3. 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
  4. 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
  5. 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!
  6. 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!
  7. Day 2 I had a pretty good day 2 also. I wasn't nearly as active due to the NCAA basketball tournament being on TV. Still no nap was required and my jerky has pretty much stayed away. Looking forward to week 2!
  8. I was having a lot of OFF/ON times. The patch should at least keep the agnostic at a stable level. I expect to have an interesting time the next few months until we get this all adjusted. I know there will be side effects but I am hoping it is all worth it. I still take Sinemet every 4 hours. My next question for doc is why do I use the Sinemet CR at night every 4 hours. The CR flavor doesn't seem to last any longer than regular. Can't I just do the regular all day long?? I did get very sleepy at times. I'm really not sure what drug was causing it, but beginning to suspect Mirapex After my second visit with the excellent MDS at KU Med, I decided to fire my local Nuero. He was stuck in the '70s and prescribing stuff just because. I had no confidence in him. I am giving the new doc a long leash and am open to any treatment the experts at KU see fit for me.
  9. I think the 2 mirapex at bed time was an experiment to see how I would react to more agnostic. Doc had me quite mirapex cold turkey yesterday when I started the patch. The patch is a 24hr patch. It needs to be stuck to a body part with no hair so I've had to shave several areas (upper arm, thighs, belly...) yesterday's patch started coming off late in day so I was more careful about location & pressing it on for a longer time to give it time to adhere.
  10. I ain't afraid of no cops.
  11. DAY 1 on the patch I am impressed! I felt great yesterday. I got off my ass and did some strenuous yard work in the morning. Without realizing that it was time for my after lunch nap, I decided to go shopping the many aisles of Walmart. Whaaaat ??? In the past, napping was the only option! Later in the day, I prepared a dinner of tacos with a side of CCQ. It was exhausting (and tasty) but I did it! Boy was I ready for bed when the time came. I only got 4 hrs of sleep but they were quality hours. I think this patch may be "just what the doctor ordered". ...and to think, the past few weeks I had been considering life without driving. I think I will put those thoughts away.
  12. Well today is the day to start! I'm sitting here ...wide awake at 3am .... just waiting for first 5am patch. I really had not given agnostics much credit. My first neurologist just prescribed a list of drugs to me (1 year ago). I had no idea what they were supposed to do or how they worked together. Well, when my MDS reduced my mirapex, I really noticed the difference. ... no sleep and severe pain and just felt like crap. We added 2mg of mirapex at bedtime and wow! I noticed big improvement. That's when doc decided to put me on neupro patch. Its really comforting to know my doc is well versed in all options AND knows when to use them
  13. My current insurance did me pretty good $30 for 60 2mg patches. I wonder if I will stay at 6mg or move up to 8mg
  14. Well I had hope for my state of Kansas. There was a bill in congress "Canabis Compassionate Care Act" This bill would legalize medical marijuana. Last week it got watered down to what is now called..Eliminating criminal and professional penalties for non-intoxicating cannabinoid medicine" What does that mean?? While CBD is great, I think there is something to be said for "intoxication" (THC) I wrote my representatives and let them know my disappointment. Kansas has these back woods reps making totally uneducated decisions and sponsoring bills that are totally lame. At least it is a step in the right direction.
  15. FYI: I just discovered the "My Parkinson's Story" videos produced by the VA. I thought they were great.