White Rat Registry

[Arsippe]

Originally Posted by Nan Cyclist

As long as you're not taking any meds yet, would you consider signing up for the Michael J Fox PPMI study? If so, just go to the MJFF website and follow the prompts.

Nan, I am considering it and find one thing that keeps me from it so far: I wouldnt mind the expense of getting to the nearest facility (Houston) or having to use up personal leave from work or donating blood or going into mri tubes. What I would mind is giving spinal fluid--even for the team. The thought of a needle in my spine is very off-putting. I may yet change my mind, but each time I visit the PPMI part of the website and feel ready to do it (heck, they might not even want me), that needle in the back makes me think twice. If anyone else has a different view on this or has gone through spinall fluid collection and finds it not that bad----please let me know---I have never had it done and am probably speaking more out of ignorance than reason.

[Nan Cyclist]

Personal experience coming your way! I've had the spinal tap and my husband, as a control, has had two or three now. One of the women in our cycling group had one just last week. None of us had had any reaction at all. Ann commented that getting a blood draw was more painful than the tap. I'd say they are about the same. The fluid is taken below the area where the spinal nerves are so there is no risk of paralysis. I'm told that the worst outcome can be experienced if you don't follow directions. I was told to lie quietly for a half hour or so after the tap and then not do heavy lifting or hard labor for the next 24 hours. No problem. My doctor has done over 1,200 of them without incident.

So sign up with a happy heart and no fear. Thanks for asking.