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Melissab

Frustrated by lack of young onset services

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I live in a pretty large city just a few hours south of Chicago. We have several large hospitals and a neurological institute. From the very beginning of this journey I have found that young onset PD is just not the same in terms of access to services. First, I had to go to Chicago to actually get a MDS to diagnose me correctly. I want to do all I can to slow this process down and would love to do Rock Steady Boxing, but it’s only offered during the days and I work. I need to do LSVT Loud, but again...no way with a working schedule. As if this disease isn’t isolating enough, I feel like because I’m not in the older group of people there is not any support for treatments I need. I really am just venting. Anyone else finding this to be the case?

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I looked into Tai Chi, and RSB, and some other things and found that what was actually offered in the area (even, e.g. Tai Chi, if not specific to PWP's) was during the work day.  And a lot simply was not offered at all.  Granted I live in a somewhat rural area, and young vs old onset aside there just aren't enough PWP's around to justify a business offering some of those services.  And with YOPD being 5-10% of PWP's it is even harder to have a business justify targeting us.

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Yes I have had the same difficulty.  The only thing I found was RSB over an hour away and only one location offers a Saturday class.  I have no problem driving that hour but it is much more expensive than I thought.  It's a monthly rate for all the classes you want to attend but because I could only make the Saturday class it just makes the cost unreasonable for me. 

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I live in an area similar to what you have described and have had the same issues. Because I am a candidate for DBS, I was hoping to meet some people locally that have had DBS surgery. So, I decided to go to our local Parkinson's Support Group meeting at the hospital. Long story short, I was the only person who showed up. I confirmed that I was at the right spot at the right time with two different sources. I even tried some other online support groups, but found that 90% of the members hadn't been online in over 6 months. I have tried some other things as well, but have finally given up. This forum is the best thing that I have found.

Kevin

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