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PARTNERS IN RESEARCH: CNDR || IOA || UDALL || Penn ADC
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Sharing My Lumbar Puncture Experience

Lori K, patient and research participant at the Penn Udall Center for Parkinson's ResearchLori K., age 59, has been a patient of the Parkinson's Disease Movement Disorders Clinic since shortly after she was diagnosed in 2005. She has been a participant in several research studies through the Penn Udall Center and also was trained as a Research Advocate. She is a leader in Parkinson's patient support programs in the region. She wrote the following after experiencing an LP or lumbar puncture (or spinal tap) as part of research for the Penn Udall Center at the end of January, 2013.

How Preconceived Ideas About the Old “Spinal Tap” Can Affect Your Willingness to Help Research

Growing up, I was often called a scaredy cat or crybaby so, if this was true, why would I ever consider having a lumbar puncture? Ignoring misplaced thoughts of the game, “Operation” (nope, no spinal tap there) and the movie, “This Is Spinal Tap” (not there, either, though some scenes were painful), being scared and a crier and having no medical need would not make me a candidate to volunteer for a lumbar puncture for research. So, where are did my preconceived notions of this experience come from? No specifics, but every depiction and message out there was that it HURT! In reality, though, because so many times I’ve talked about the importance of participating in PD research, I went ahead and did it, and my experience with a lumbar puncture was nothing at all like what I expected.

Previously, I have been participating in a study with the Penn Udall Center, one involving noninvasive or minimally invasive procedures (testing, blood tests). In the fall, I received a phone call from Jacqui Rick, project manager for the Penn Udall Center, telling me that the study needed subjects willing move into a more intense level to yield additional clinical information. When I asked, she told me that I would have an MRI, more in-depth neuropsychological testing, as well as (wait for it...) a lumbar puncture. A spinal tap. Oh my. Jacqui went over in great detail what it entailed and assured me it was no worse than going to the dentist's office. I next contacted the husband of a friend of mine who is involved in the Michael J. Fox Foundation trial involving biomarkers. He has had two lumbar punctures already and assured me that if I followed the directions pre- and post-testing, it would be fine. Lastly, I spoke to Dr. Akhtar, the doctor at HUP who would do the procedure and again was assured that it would not be greatly painful, and I would quickly be back to myself. I ended up saying yes.

Last week I found myself bent over an examining table having cerebrospinal fluid removed from my spine. Much to my surprise, it really was quite easy to get through, with minimal discomfort, even for a scaredy cat/crybaby. The old style needle used - the one roughly the size of a drinking straw, or so it seemed - has been replaced by a very thin needle. My local anesthesia meant that I honestly did not feel anything and was only mildly uncomfortable due to the position for the procedure. The only side effect was a very mild headache for a few hours, easily relieved with Tylenol.

So, why do I participate in this clinical research study?

It is only through clinical research participation that disease treatments and medications are made available.

Did you know that only 1% of people with PD participate in clinical studies?

This difficulty in finding enough volunteers for research causes significant delays in completing the clinical study and gaining new knowledge about and new therapies for Parkinson's. There are an estimated 7 to 10 million people worldwide living with Parkinson's and as many as 1 million individuals in the United States more than the combined numbers of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig's disease.

Participate in Research

Parkinson's disease studies at Penn To learn more about participating in Parkinson's research at Penn, click here or click on the graphic at right.