To 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.