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About wearwear

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  • Birthday 08/08/1951

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    Norwalk, CT

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  1. Sorry to hear the VA doesn't have provide the care you need in your area. I live in Norwalk, CT (45 miles east of NYC) and go to the West Haven VA medical center. I see a MDS every 3 months and get excellent care. I know the VA has a program that will allow you to get care from an outside provider if you live more than 40 miles from a VA medical center, it's call "Veterans Choice" https://www.blogs.va.gov/VAntage/39882/10-things-know-veterans-choice-program/ . Check it out they may be able to help.
  2. I've had 2 daTscans as part of the PPMI observational study and have not had any side effects.
  3. I've been a photographer for most of my 66 years and find it to be great therapy as it has morphed into digital art. There are a couple of camera brands Olympus and Sony that have fantastic image stabilization for people with Parkinson's which has enabled me to continue shooting without a tripod. You can see my work here: www.wearwear.com
  4. I'm curious as to the monthly cost to participate in Rock Steady Boxing in different areas? I live in Norwalk, CT and we finally have a certified Rock Steady gym, it's $100 to join and $79 per month.
  5. Thank you Dr. Okun, you provide a valuable service for those of us searching for answers. Your time and dedication are truly appreciated.
  6. Hi Dr. Okun I was diagnosed with mild PD in October of 2015 by a regular neurologist. Upon hearing the news I stated that I’d like to participate in clinical studies. My neurologist forwarded the dx to the Institute for Neurodegenerative Disorders (IND) at Yale New Haven. I also signed up for the PPMI study through the Fox trial finder. Several weeks later I was evaluated by a MDS at the IND who confirmed the dx. In January the I received the DNA results from the PPMI study, which showed that I have the GBA mutation. The IND scheduled me for a full 2 days testing and once again it was confirmed by a MDS that I have mild PD. They also did a DaTscan, several weeks later I was told the DaTscan was negative. I haven’t had a chance to discuss in detail with the MDS and my next appointment is in August. My question is, dose the negative DaTscan mean I don’t have PD?
  7. I don't intend to keep my pd dx a secret but also I'm not going to announce it on social media. There are people that would want to know about it, but I'm not sure how to tell them without it sounding like self pity.
  8. As long as I'm consciously thinking about stopping them, then they ultimately start again.
  9. I've learned so much from this forum, it's really been my most valuable resource and support group. One of the questions I have is with regard to my tremors and the ability to stop them once I realize they're happening. When you have tremors are they uncontrollable or can you stop them temporarily? Is this because I'm in the very early stages of PD?
  10. I do appreciate all the comments, the last 2 months have a real wake up call. For the first time in my life I've gotten religious about working out every day, next week I'm adding a Tia Chi class to the schedule. I'd like to hold off on med's for as long as possible, PD isn't interfering with my quality of life at this point. They're giving me the DaTscan along with taking biopsies from all regions of my body and drawing some spinal fluid because I volunteered to participate in a study to help diagnose PD. It's all being funded by the Michael J Fox Foundation, I there's no way I could afford to pay for it myself.
  11. I’ve been lurking and learning on this forum for a little over 2 months. After having had mild resting tremors in my right foot and hand for a little over a year my wife insisted that I go see a neurologist, we had suspected that I might have PD. I was lucky to get an appointment a few days later and after a 30 minute examination, I was diagnosed with PD, that was on October 30th 2015. It really bothered me that I could get such a life changing diagnosis in such a short amount of time. For the following month my anxiety level was very high and my tremors seemed to increase overnight, I kept thinking that it was all in my head and that I was making the symptoms happen voluntarily, in part because I was able to stop the tremors whenever I realized they were happening. I had told my neurologist that I’d like participate in any upcoming trials and she said, she would send the paper work to The Institute for Neurodegenerative Disorders at Yale University, which is only 35 miles from where I live. They called me the day before Thanks Giving and we setup an appointment for the following week. I was so relieved that I was getting a second opinion from a MDS. It was so different being examined at a research facility, the neurologist spent 2+ hours with me and my wife confirming my dx and talking to us about PD. I was actually relived to get the confirmation. It’s now January 1st. and I’m still having doubts while I await my DaTscan, which should happen in the next couple of weeks.
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