Gait Training
In the box "Tips to Get You Moving" ("Walk This Way," May/June 2010) stroke survivor Michael Mitchell is quoted as saying, "There's no danger of falling and injuring yourself in the pool, and it's fun." I was in our pool trying to master the simple art of floating, which I was able to do before my diagnosis of Parkinson's disease. I went under the water and immediately became disoriented. Thankfully, my husband was sitting on our patio at the time, watching me. You can indeed be hurt in a swimming pool. - Marie Le Van, Nashville, TN
THE EDITOR RESPONDS: Thank you, Marie, for sharing your story and reminding us that certain safety precautions must be taken when exercising in a pool. The Web site of the Centers for Disease Control and Prevention (cdc.gov ) provides information on water safety. Exercising with a buddy and under the supervision of a lifeguard are two of the CDC's recommendations.
Volunteering for Research
As both my parents suffer from movement disorders—dad with Parkinson's disease (PD) and mom with benign essential tremor—I have managed their health care for more than 10 years and have wanted to do my part to spare other family members from suffering. In 2009 I volunteered for and was accepted in the Biomarkers of Risk of PD at the National Institutes of Health (NIH) in Bethesda, MD. My travel and lodging expenses were covered and I paid for meals. Unfortunately I was not accepted for the clinical laboratory testing, and I still don't know why.
Just this week I signed up for TrialsFlash through the Michael J Fox Foundation. I am excluded from current trials as I am a first degree relative of a PD patient and have not been diagnosed with PD.
Two of my younger siblings currently exhibit more PD symptoms than do I. Both have no sense of smell, and one has REM Sleep Behavior Disorder, which has been linked to PD. They lived with our parents longer than did I in the home where we had well water. Neither wants to participate in research, nor do they want to know if they are genetically predisposed to suffer from PD. That's OK; I do not push.
If you learn of any trials for which I might be suited, please let me know. Throw me in, coach, I'm ready to play! - Brenda B. Harris, Jacksonville, FL
Along with a few of my family members, I am enrolled in a clinical research study with the National Institutes of Health. The protocol is entitled "Clinical and Molecular Manifestations of Inherited Neurological Disorders."
We decided to participate for two reasons. First, our family has an autosomal dominant neurodegenerative disorder which seems to elude a diagnosis. It spans at least three generations, and family members have a 50/50 chance of inheriting the disorder, which means we have both affected and unaffected people in our bunch. We have been tested for many conditions (with a concentration on the testable spinocerebellar ataxia types and also for the more common types of hereditary spastic paraparesis), all to no avail.
The second reason for participating is that we would like to help advance medical research and education. It is my hope that future genetics classes in secondary schools will cover much more than the X and Y chromosomes, eye color, and the work of Gregor Mendel. - Christina Rakshys, Allentown, PA