Regarding engaging people, particularly young onset. Are you familiar with the work of Mark Burek and the young onset group that is on Facebook? This is an invitation-only group and Mark invited me to be part of it, although at age 67, I don't see how I qualify. Nonetheless, it's an interesting active international group of people who have young onset for the most part, except for me.

I think that fear of failure is one of the most debilitating things that we face with PD or any other condition for that matter. Although we know that research shows that if we exercise, particularly by doing bicycling or tai chi or tango, we will mitigate some of our symptoms there's always the fear of "what if I try and it doesn't work for me?" If I don't try, at least there is something still waiting in the wings for me. But what if I try, and I fail? Then there truly is no light at the end of the tunnel and I might as well curl up and quit. That mindset, coupled with the natural increase in anxiety that happens with PD, probably keeps more people from exercising than anything else. It is also hard work, very hard work, to exercise at the level one needs in order to truly mitigate symptoms. And, it is a lifestyle change. You cannot just exercise for eight weeks and call it a day. It is something that you do for the rest of your life, like taking your medicine. I find it is a lot easier for people to increase the medication than it is for them to make that commitment to exercise.

I have had the same problems myself, so I am truly speaking from experience, not just theory. Interestingly enough, I find that when I speak to large audiences, many of the people come up to me afterwards and say that they are making the commitment to do the hard work to make the change. There must be something about seeing this older woman with white hair on a bike in front of an audience, showing slides about climbing Kilimanjaro, riding across Iowa, and climbing to Annapurna base camp that means something to them. I think I embody an image that says to them, "If she can do it, by golly, so can I!" How many people follow up with it, I don't actually know.

We are finding that the most difficult part of starting the YMCA programs is getting people to come in the first place. Once they come, most of them actually stay, in part for the camaraderie as well as for the healing that happens. If their doctors would tell them that they can do this, I expect many more would be likely to do so. So getting through to the medical community is huge. I have had marginal success in that so far. Any help you can offer would be greatly appreciated. The newly diagnosed community is the group that will benefit clearly the most. That said, many people with stage two and three are benefiting from the cycling program as well. I sure am open to more thoughts and suggestions!