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 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.


About bobharmon49

Parkinson’s Cure Research Funding, Inc. (“PCRF”) was founded in November, 2010 as a non-profit corporation dedicated to raising money for Parkinson’s disease research and patient support. The corporation’s main fundraising event is an annual golf tournament held in April at the Lake Ashton community in Winter Haven and Lake Wales, Florida. Proceeds from the event have been donated to the Michael J Fox Foundation. Prior to forming PCRF the first golf tournament was held in April 2009 and we raised $12,000. The second tournament in April 2010 raised $27,000. Our next tournament will be held on April 7, 2012. At each of the first two golf outings, 215 players filled the two 18 hole golf courses at Lake Ashton. PCRF was founded by Bob and Cecily Harmon. Bob was diagnosed with Parkinson’s in 2006 and is still very active playing golf and working to help find a cure for PD through fund-raising. He has recently been named to the Southwest Florida Regional Council of the Michael J Fox Foundation. Their mission is to drive ideas about local engagement opportunities to increase Parkinson’s Disease awareness, enhance education efforts and connect with untapped resources to develop the overall expansion of the Fox Foundation in Florida. The Harmon’s facilitate the Lake Ashton Parkinson’s Outreach Group which supports local Parkinson’s patients and their care partners. The group meets on the first Friday of every month at 10am at Lake Ashton and is open to the Parkinson’s community in the general public.

One thought on “You Want To Do What? Join a Parkinson’s trial

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s