Tag Archives: PPMI

Let me tell you a little story about my Mom

1519599_698695746830758_1959666373_oA little while ago, The Michael J. Fox Foundation asked me to interview my Mom for a newsletter about the PPMI study that she’s involved in.

They wanted the personal touch of a mother and daughter talking about why my mother is so awesome and involved. (OK, so maybe the author is biased. Just a tad.)

In the end, I wrote a novel, so only a small part appeared in the newsletter. See the whole piece below.

Fall 2014 Newsletter
Continue reading Let me tell you a little story about my Mom


You Want To Do What? Join a Parkinson’s trial

By Cecily

BobcecTo be totally honest, I was pretty concerned about signing up to be a control in the Parkinson’s Progressive Markers Initiative (PPMI). I wanted to do it to show support for Bob in his journey with PD and do what I could to speed up the cure, but what if I didn’t pass the initial testing? How did I really feel about lumbar punctures to obtain spinal fluid? What if I chicken out and want to quit before the 5 years are over?

The first year was an appointment every 3 months and it turned out that the problem I had was that my veins are elusive, shy and hard to hit when obtaining blood samples. The nurses and I worked together to solve this problem and we shared many laughs about it. I also found out I am claustrophobic when placed in a tube for a brain MRI. After about 5 minutes I pressed the panic button when I felt my heart was racing and I thought it would explode only to find out we had to start all over. I was able to put mind over matter and get the job done.

The lumbar puncture turned out not to be so bad. The doctor is really good at this procedure, so my fears about it were relieved.

I am writing this as Bob and I are driving to Tampa for my 18 month visit. This one is easy, vital signs and blood collection. We plan to go to Cracker Barrel for a hearty breakfast afterwards. Bob has been with me for each visit supporting me as I support him.

This is where I will ask you to go to www.foxtrialfinder.org and see what you might be able to do in the fight to cure Parkinson’s disease. It’s completely confidential and you can pick and choose what trial you would like to join.

Some call me a hero but I don’t think I am. We all do what we can to help find a cure and we’re in it for the long run until PD is no longer incurable.

Update – The veins won again today — remaining elusive to both nurses.

Awareness is a powerful tool.

This week I had the opportunity to speak to the residents in our community. I have hosted three golf tournaments to raise money and facilitate a Parkinson’s support group. The activities coordinator asked me to talk about our support group and make a “plug” for our next tournament.

Since I have been really open about having PD, even though my symptoms are under control after seven years, everyone who lives here has been exposed to our family’s journey. They are aware. This awareness has been the driving force in our ability to reach people and help the PD community.

So I went to the meeting and spoke about our support group, the tournament, and a surprise topic.

I explained to the meeting that the support group has grown eight fold since it was started three years ago. I don’t know where the members come from. They hear about us from doctors, members of the group, and lastly from people who have been exposed to us telling our story: Awareness.

I shared with them that we’ve got a mantra that we share to all those with PD, who will listen, “YOU ARE NOT ALONE”. As part of walking the walk, our support group has access to us 24/7. Their awareness that they are never alone is very powerful. After our presentation Monday about our support group, that awareness of what we do has increased within the community.

So, when I began talking about the tournament, most people were aware that we had been successful, but not to the extent caused by the generosity of the Brin-Wojciki Challenge that matched funds raised for the Michael J Fox Foundation in 2012. Even without the matching funds, we were able to raise more money in 2012 than we did in the previous two years. How were we able to do this?

Everyone knew that we had fun and the money they donated went directly to finding a cure. They knew what that meant for me and their friends with PD.  They were aware that they were doing something important. That is powerful stuff. After the meeting people came to me to offer their assistance in our next tournament. I have come to the conclusion that people want to help, they just need to know where they are needed.

Then it was time for the surprise. I explained to them that I am a Fox Trial Finder ambassador. I shared the fact that I have been enrolled in a trial for over five years, my wife, Cecily, is a control in the Fox PPMI trial, and both of my daughters have enrolled in the Fox Trial Finder. I presented how easy it is to enroll in the program. Then, I asked them if they knew how they could contribute if they didn’t have PD. Of course they didn’t. I told them of the need for non-blood related volunteers for controls in various trials, including the Fox PPMI trial. About 25% of the audience took brochures. I don’t know how many will sign up, but I do know that there is a better chance now that they are aware of the program.

So, in 20 minutes, I was able to raise the awareness of 100 people of things that are important to me and my family. What effect will that have? I don’t know, but it will build relationships at some level. We build relationships, we make others aware of our journey, and suddenly the journey isn’t ours alone. Isn’t that what it is all about?