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Showing most liked content on 04/26/2017 in all areas

  1. 6 likes
    Hello, Gulfvet -- Here is my contribution. It was when I was playing the piano that I first suspected I had a neurological problem. By the time I got my diagnosis, I could barely play at all because of my lack of manual coordination. Having studied classical piano for more than ten years, I was sad to lose that beautiful and rewarding pastime. With medication started and some improvement observable, I tried practicing again. It was pretty discouraging at first. But as the medications grew more and more effective in fighting symptoms, I practiced more often. Today I could never play on a concert stage, to be sure, but I can enjoy playing pieces of music that I never expected to play again! (A few examples are Chopin's "Fantaisie Impromptu in C# minor," two Rachmaninov preludes, Mendelssohn's "Rondo Capriccioso," and Chopin's "Berceuse.")
  2. 1 like
    The biggest project I accomplished is remodeling our bathroom. It took a while, but it is done! The includes new flooring, wall tile, new counter, some plumbing, etc..
  3. 1 like
    I guess I am fortunate to be doing well on my meds and my MDS started me on small doses of everything. But I am a firm believer in the exercise part of things. I probably had PD for 2 years before my DX but exercise held it at bay. Exercise is medicine for PD. LAD
  4. 1 like
    I'm doing great on Sinemet with absolutely no side effects - I usually take two a day, sometimes 3. My naturopath, who treats only Parkinsons and works with the MJF foundation, is convinced you can avoid dyskinesia with taking it with fish oil. She has also found that her patients on Sinemet have slower progression and recommends starting it right away. I do take multiple other supplements which are extremely helpful to me and I exercise daily. I actually feel like I have the best health I have had in the past 20 years. My health gets better every month and my PD symptoms decrease, a little at a time. At this point all I have is mild motor issues. I did start with azilect prescribed by my neurologist and it made me much, much worse. You can definitely have good quality of life:-)
  5. 1 like
    Everything in life involves trade offs. Meds for PD are no exception. Ive been taking carbidopa/levodopa since my Dx 19 months ago. Only side effect since then was daytime sleepiness. So I switched from the regular instant release (often called Sinemet) to an extended release version (Rytary). Same medication, just different rate of release. I feel like I did 5 years ago as a result. However I know that the trade off is a high probability of dyskenisia (bad movements) at some point in the future. However, the latest research shows that you probably aren't saving yourself much if anything by delaying those meds. It is the total dose of levodopa that causes that side effect more so than duration of taking it. There are other meds you can try too. Primarily the dopamine agonists like Requip and Mirapex. However those have their own risks, including impulse control disorders, and sleep attacks (suddenly falling asleep when that is inappropriate like while at work or driving). Some on here choose to not medicate at first. For them exercise is a key part of fighting the disease, as it really should be even if you are taking meds. It will boil down to whether the symptoms are more bothersome for you than the risks of the side effects. But the meds are not something to fear, just something to consider with deliberation.
  6. 1 like
    Peace, my trick is going out to dinner and almost passing out, squad called, ER, the whole nine yards! So embarrassing! Both times is was an unknown UTI and once low hemoglobin. You can't make this stuff up. My friends don't want to go to dinner with me anymore! Joke! 😜🤢
  7. 1 like
    Hi everyone! As an Ambassador of the Michael J Fox Foundation, I recently spoke at a Partners in Parkinsons event which you can see a short clip here - https://youtu.be/AI-tUZs-qjU Here I share my thoughts on how to stay positive and make life easier with Parkinsons Disease. SMILE! S - Simplify your life and have Support M - Manage and Maintain I - Interact with other PD patients L - Live and LOVE life E - Exercise Follow our group on Facebook to discuss experiences and tips on how to deal with Parkinson's - https://www.facebook.com/groups/1608850446035163/ or follow me at - https://www.facebook.com/pages/John-Pascal-van-Houden/788621737917039?ref=hl I will be posting tips I have learned the past 16 years of ways to best deal with Parkinsons. Hope to chat with many of you! John-Pascal