Originally Posted by indigogo

I think what you are missing is that, for many including me, it's so much easier to sit in one spot and watch life go by. I live alone. By choice. Divorce was the first thing I did post-dx 13 years ago. I am not in the market for another marriage or even a relationship. My hands are full taking care of myself on a budget that consists of my monthly social security checks. I live in a small town, at least a half hour drive from any place that has a YMCA or organized exercise program for the disabled or seniors; no money or space for a trainer at home. Just living my life is challenge enough. I wash every dish, vacuum every floor, change every light bulb, clean the bathroom, do the shopping, fix meals, launder my clothes, walk the dog, clean the litter box, pay the bills all by myself.

I've never accomplished anything grand in the name of PD, or contributed a lot of money. I've never been in a clinical trial, although I'd like to if one were within reach.

I'm fortunate that I have been able to contribute my voice, and that people have listened. What I hope they have learned from me is that, for the sake of research and progress, it is important to include the patient in the conversation. Because it's not until they did (within the last 10 years) has any progress been made on truly understanding the complicated nature of this disease.

What they have not learned is that socio-economics play a huge part in patient involvement in all of the activities for which they seek our participation. I don't think this is because I haven't laid bare my own precarious financial situation when we meet around big conference tables, ten floors above Park Avenue or Broadway in NYC (trips for which they generously pay - and I enthusiastically accept!). I've become weepy more than once, and forceful even more.

And I don't for a minute believe the lesson has not been learned due to indifference. I know they care. But I think the problem is so big and so systemically pervasive that it's easier to look away and try to fix problems that are more easily fixable - like what to do about the blood-brain barrier.

This week I had to make the decision to fill up my gas tank for $50 or buy groceries. I chose the gas. Why? Because last night I got to drive round trip 100 miles to treat myself, my daughter and her boyfriend to an MJFF event in Seattle that was absolutely wonderful. I got to hang out with my favorite MJFF staffers, be queried by Todd Sherer on what I am thinking about these days, exchange hugs and conversation with Debi Brooks, introduce my kids to Michael J Fox, and spend two hours talking to people about the importance of clinical trials and PD research. I felt like I mattered. It meant the world to me!

But it also meant that I woke up today with just enough milk, bread and peanut butter to get through the week, and a half tank of gas to get me
wherever I need to go (or not) for the next two.

Don't get me wrong - I love my life! But it's hard, and I have to make choices that have real consequences. And I make them by myself. I think there are a lot of PwP who are like me, living on limited resources - whatever they may be. Lack of money; lack of everyday support; lack of access.

Is it a problem that is too big for us to solve?