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We provide you with articles on brain science, timely topics, and healthy living for those affected by neurologic challenges or seeking better brain health.  

Letters to the Editor: May/June 2008

Cover of March/April 2008 issue

Kids Talk

Thanks for the great article, "Kids Talk" in Mar/Apr 2008. My mom had multiple sclerosis (MS) from the time I was one. Mom passed away in 1995 after 38 years of MS. I created a way to honor her in 1997 by establishing a scholarship program in her name. The program has grown tremendously and now includes all Michigan high schools. This fall I will offer a scholarship to the senior from all 50 states who raises the most funds for MS research. Your readers can find out more at msscholarship.org. - Rick Szczepanski

Patched Up

Researchers had touted the long-awaited rotigotine (Neupro) skin patch for its consistent delivery of a once-daily dose directly into the blood stream. The patch was supposed to be particularly beneficial for early-stage Parkinson's disease. Impatiently awaiting FDA approval, I was about ready to go overseas to get it when my neurologist announced free samples had arrived. I was optimistic that my chronic symptoms would stabilize or abate.

The insert's disclaimers were the usual: may cause hallucinations, sleepiness, edema, etc. Nothing new. To mitigate sensitivity to the adhesive, one-inch square, patients are advised to rotate the location of the patch daily and avoid creases in the skin's surface.

But as I titrated to the next stages, the size of the patch increased to two- and then three-inch squares, which became impossible to camouflage. Because this "applique" broadcasts your Parkinson's disease diagnosis, it would be great if the manufacturer could spruce it up by offering a choice of skin tones, colors, or motifs. - Cheryl Kingston

THE EDITOR RESPONDS: Thank you, Cheryl. This patch is actually being recalled.

Cervical Dystonia

There need to be a few clarifications regarding "Rem Murray: Home on Ice," in the Jan/Feb 2008 issue of Neurology Now. It is well known that the "Reaching Your Goals" campaign is funded by Allergan. There is another botulinum toxin—Type B (Myobloc)—that is FDA-approved for cervical dystonia (myobloc.com). They provide financial assistance to those who are immune to botulinum toxin Type A. In addition, many experts feel that deep brain stimulation surgery is becoming the primary treatment for movement disorders. Finally, there are several other dystonia-focused organizations that should be listed as resources:

- Beka Serdans, RN, MS, NP, Founder, Care4Dystonia, Inc

THE EDITOR RESPONDS: Thank you for your letter, Beka. We chose to interview Rem because his story is inspiring and because he speaks out publicly about cervical dystonia. We did not mean to give unfair preference to any particular treatment or source of assistance and appreciate these additional resources.

Music Therapy

Thank you for the article on Dr. Oliver Sacks in your Jan/Feb 2008 issue. Here in Spokane, WA, we enjoy and benefit from singing sessions with our chapter of the Tremble Clefs. Started in Scottsdale, AZ, Tremble Clefs groups across the country help to retain and improve the voices of people with Parkinson's disease. While studies show that singing is physically therapeutic, as Dr. Sacks mentioned, we find that the friendship and support within the group is even more powerful, lifting our spirits and filling our hearts with hope.

We recently began using rhythm instruments, which add a dimension of lighthearted fun to our gatherings. We don't strive for a lot of polish, but we do have a great time leading sing-a-longs at local care centers. - Ruth Palnick, song leader and person with Parkinson's (8 years); and Sara Nielsen, speech therapist

The Jan/Feb 2008 issue contains a wonderful message from Dr. Robin Brey that refers to the article "Unchained by Melody," based on an interview with Dr. Oliver Sacks. As a board-certified, neurologic music therapist, I am thrilled with the exposure and accuracy of your coverage on music therapy. ["Unchained by Melody," Jan/Feb 2008] However, Resource Central did not give any contact information regarding music therapy. Please refer your readers to: The American Music Therapy Association, Inc. (301) 589-3300, musictherapy.org. - Becky Engen, Ph.D., N.M.T., MT-BC, Associate Professor of Music Therapy, Queens University of Charlotte, Charlotte, NC

I am 56 and have been deeply affected by recreational music throughout my life. Over the past year, I developed a new percussion instrument and activity program specifically for the elderly. Called "tap dancing rhythm for your hands," it was birthed out of a very painful time of my life. I share it with people in nursing homes and with the disabled. - Laurie Lunsford

Spastic Paraplegia

I have a rare upper motor neuron disorder called hereditary spastic paraplegia (HSP). For the past six years I have been involved with the Spastic Paraplegia Foundation (SPF), the only organization dedicated to two groups of neurodegenerative disorders: spastic paraplegia (hereditary and apparently sporadic); and primary lateral sclerosis (PLS). These spinal cord disorders cause progressive weakness and spasticity in the muscles of the lower body. People generally go from difficulty walking to needing a cane to eventually a wheelchair. In PLS, the disease also affects muscles in the upper body, causing problems with the arms, voice, and swallowing.

The impetus for forming the SPF was the accelerating pace of research. Dramatic breakthroughs have been made in the past decade, catapulting these conditions from being poorly understood to being on the threshold of significant treatment and cures. As both of these disorders are very rare, I would appreciate it if you would add our organization to your Resource Central section. - Annette M. Lockwood, President, SPF, sp-foundation.org

THE EDITOR RESPONDS: Thank you, Annette. We are happy to add SPF to our list of patient organizations.