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swva

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Everything posted by swva

  1. 18 while on meds. 3 worse from my 15 score from 3 years ago. Not bad I guess. My dosage has more than doubled since then. I can still physically do everything that I could before PD. I just get tired easier and have a tremor. Without C/L, my score would probably be more than doubled, but I don't want to even try to see what no meds feels like.
  2. swva

    See an MDS or continue to monitor as per my neurologist?

    My tremor was not the typical pill rolling tremor, but it progressed from a small tremor that I could barely see in my middle finger to a full blown hand tremor in a couple of months. With no progression in three or four years, it sure doesn't sound like PD. Trust your Dr. and don't worry about PD unless it gets a lot worse or if other classic PD symptoms appear and don't go away.
  3. swva

    Diagnosed with PD on 46th birthday

    Welcome to the club that no one wants to be in. Feel free to ask any questions about meds, exercise or any of the other fun stuff that we get to deal with. Keep up the lifting and maybe throw in some biking or walking or running if the joints can take it.
  4. swva

    Trying Sinemet

    C/L reduces my tremor, relaxes my muscles, eliminates my anxiety, keeps me from chocking on my saliva when I nap. Pretty much makes me feel better.
  5. swva

    Got my 23andme results

    I used the site below to get additional information based on my 23 and Me data. It doesn't cost much and you get your reports back in minutes. https://promethease.com/
  6. I see a neurologist every 12 months and any time in between visits if there is a problem with my meds.
  7. swva

    Early Symptoms

    I never really noticed any slowness prior to my diagnosis. Tremor, stiffness, foot spasms, swallowing issues, and a little shuffling of the feet were my symptoms.
  8. swva

    Tremors only -- could it be YOPD?

    Early tremors in both hands and legs do not sound like PD or MS to me. I have PD and my wife has MS and neither of us have experienced those symptoms before.
  9. swva

    What drugs? supplements like inisine?

    Your doctor may have wanted to try you on an agonist rather than Azilect. Those do have warnings for sudden sleep issues.
  10. swva

    maybe PD?

    I am not aware of any recent studies that show that you end up worse after taking meds. The meds stay the same, but those of us with PD continue to loose dopamine cells. It would be great if you don't need meds, but don't be afraid to take them. They are life changing for many.
  11. http://www.pjstar.com/news/20171226/nick-in-am-golf-channel-features-richwoods-graduates-battle-vs-parkinsons
  12. swva

    alcohol and tremors

    My tremor usually really calms down after about 3 beers.
  13. swva

    Great Club

    You don't have to quit all protein when taking levadopa. Just don't eat a burger an hour before taking your meds. Take your Levodopa, wait at least 30 minutes and then eat the protein. It is also better to eat smaller meals. Big meals (and I mean the big holiday meals) don't seem to clear enough before the next dose.
  14. swva

    Coffee, tea or alcohol?

    I drink about 4 cups of strong coffee every day and have an occasional beer or mixed drink. Never have any problem unless the drink turns into 7 or 8. Then the next day is a little rough.
  15. swva

    Welcome to the club

    I second adams' comments.
  16. swva

    Promising trial from Down Under

    Bad news from the clinical trial. This one failed. https://stockhead.com.au/columnists/whats-next-living-cell-failed-clinical-trial/ Chairman’s Address to the 2017 Annual General Meeting We are all extremely disappointed that the outcome of the Phase IIb trial of NTCELL® for Parkinson’s disease has not shown a statistically significant difference between the patients who received NTCELL and those who had sham surgery. I will talk about what those results mean for the future of the company in more depth shortly, but to set those in context, first I’d like to highlight some of the activities from the past 12 months. http://www.lctglobal.com/news/asx-announcements
  17. There are a few links related to this in the Nutritionist forum and the Spanish forum. http://www.businesswire.com/news/home/20160126006784/en/NTCELL%C2%AE-Continues-Reverse-Progression-Parkinson%E2%80%99s-Disease-%E2%80%93
  18. swva

    Summer adventure season starting

    Stump started this thread discussing fishing, kayaking, and hunting. Here's a thought! How about at the first inkling that you see something you don't like, stop reading and move on to the next post. What is wrong with people in today's society that thinks that everyone else should change to suit them? People post stuff online every day that I don't agree with. If I don't like it, I don't read it. Stump, keep on posting. I don't hunt much anymore, but I love eating game that my sister and niece bring home. They both got 8 point whitetails this weekend.
  19. swva

    Timing of Sinemet vs increased dose

    I had to increase me Sinemet dosage a few months ago to one 25/100 Sinemet ER and half of a regular 25/100 Sinemet every four hours. This worked for a while, but I had to go back to my neurologist this week to increase my dosage to one regular Sinemet and one Sinemet per dose every four hours. I am somewhat concerned that I am increasing my meds too quickly. I realize that everyone progresses and responds to meds differently, but I would like to know if there have been any studies that show the average daily levadopa dosage versus the time since diagnosis. Are you aware of any such studies? Thanks for your help.
  20. swva

    23 and Me update

    https://www.wired.com/story/23andme-is-digging-through-your-data-for-a-parkinsons-cure/
  21. swva

    Insomnia

    I get the 3 am wake up most nights, but I can usually fall asleep again until I get up at 5:30. Some nights are tougher than others depending on the tremors. Some nights I have to lay on my affected side to reduce the tremors. CPAP. Has helped some. I normally get 7 hours of sleep now. I don't function well on less than that.
  22. Diagnosed 2.5 years ago at 45. My finger tremor had progressed to my entire hand in the two months before I was diagnosed. Never stopped taking Sinemet after my Sinemet trial for diagnosis. I have had to increase my meds to 6 - 25/100's per day. Never really tried to keep my diagnosis a secret or had any regrets starting meds. I really can't concentrate on my work when the tremors and stiffness kick in.
  23. swva

    STEMCELL TREATMENT

    Because none of the treatments have been proven to help PD. Any that claim to help are snake oil salesmen and are only out to get your money.
  24. I uploaded my results to https://promethease.com/ It had a lot more information than 23& me and from what I remember, it was fairly cheap and I got my reports within minutes.
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