Fibromyalgia—Keeping It Real
Thank you for the article about fibromyalgia in the September/October 2009 issue ("Is Fibromyalgia Real?"). I was diagnosed with fibromyalgia in 2000 but have always been reluctant to admit it. Why? Because of the misconception that we fibromyalgia sufferers are just depressed, overweight, middle-aged women. The article was well written and informative. I'm excited about the new neurological theories being researched and hope to see follow-up articles on fibromyalgia as the information becomes available. - Margaret Queen, Parkersburg, WV Neuralgia
Neuralgia
I am an avid reader of your magazine but must express a little disappointment: I have rarely if ever seen any articles concerning neuralgia. I have been diagnosed with glossopharyngeal neuralgia bilaterally and had microvascular decompression surgery 12 years ago on one side only. After having the surgery I developed partial complex seizures. I understand that trigeminal neuralgia is finally gaining recognition within the neurological community. Is there any hope on the horizon for patients like me? I am fortunate to work full-time and maintain a household by myself. I hope to continue as long as my body will allow and would love to hear of any new treatments available to assist in keeping my independence. - Michelle Myers, Durham, NC
THE EDITOR RESPONDS: Thank you for your letter, Michelle. We did an article on trigeminal neuralgia in the July/August 2007 issue. Keep your eye out for more in 2010.
Facing Down Stigma
Why is there such stigma attached to the use of medical marijuana? I am a 41-year-old mother of three children, ages 14, 16, and 21. My daughter, the eldest child, has multiple sclerosis (MS). I'm far from a hippie, and my parents, both in their late 60s, are very conservative. But even they have changed their views about medical marijuana. I went on the website PatientsLikeMe.com and could not believe how many other MS patients use marijuana for pain relief.
Pennsylvania is trying to implement House Bill 1393 to legalize the use of marijuana for medical purposes with a doctor's recommendation. Too many people who use marijuana are buying it off the streets and really have no idea if it contains dangerous additives. Wouldn't it be safer if it was controlled and prescribed? - Sandra Crue
Discovering Art
I enjoyed the Speak Up essay "Discovering Art," by Daniel C. Potts, M.D. (March/April 2009). My mother died of Alzheimer's disease about six years ago. I am also a "child of the Great Depression" (born 1934). I am hoping to learn icon painting but am concerned that my continuing work as a full-time faculty neurologist will blunt my ability to paint the concepts (compassion, love, humility) that one tries to create in the faces of the saints and other religious figures. - Leon Prockop, M.D.
DR. POTTS RESPONDS: Thank you so much for your comments. I agree with your concerns about maintaining a practice and still being able to be an artist...but I applaud you for trying. I think more and more of us will turn to various art forms and means of expressing our humanity, both in our work and leisure. It certainly has helped me hang onto my sanity! Thanks again. And I am sorry about your mother.
Wandering With Alzheimer's
I'm writing in regard to a recent article highlighting the issue of wandering with neurological disease ("Terra Incognita," November/December 2009). This is an important article for patients and caregivers coping with Alzheimer's. As a neurologist in practice, I deal with this issue with patients and caregivers. In Athens, our town's emergency services (911/EMS/police) and others have partnered with Project Lifesaver (projectlifesaver.org, 877-580-5433) to help deal with the problem of wandering. The Project Lifesaver bracelet is maintained by our local Pilot Club, and the equipment is with the first responders. In fact, my daughter (who suffers from autism and is also at high wandering risk) utilizes this service, and it is an added peace of mind for our family. - Jon S. Poling, M.D., Ph.D., Athens, GA
Quick Tip—Avoid the Post Office?
I was a bit surprised that Shelley Peterman Schwarz—who shared some really great holiday tips and is clearly computer savvy—missed one bit of advice. The U.S. Postal Service now provides convenient ways to use their services without going to the post office. At usps.com you can print a shipping label and pay for postage (and you get a discount on postage when you use Priority Mail). If you print an electronic shipping label and use Priority Mail, you get Delivery Confirmation at no charge. You can even order stamps or schedule a carrier pickup online. - Anita Rutt-Guerriere, Bethlehem, PA
Lewy Body Dementia
My brother was recently diagnosed with Lewy body dementia. He is 58 years old and I am very concerned for him. I understand that there is no cure for this progressive disease. For the sake of my children and grandchildren, I want to know if Lewy body dementia is hereditary. - Ruth Baker
THE EDITOR RESPONDS: According to the National Institute of Neurological Disorders and Stroke, the cause of Lewy body dementia remains unknown. Some speculate that genetics plays a role, and studies are underway to investigate this possibility. Please see "The Other Dementias" on page 26 of the November/December 2009 issue for more information on Lewy body dementia, frontotemporal dementia, and vascular dementia. You might also contact the Association for Frontal Temporal Dementias online at FTD-Picks.org or by phone at 267-514-7221 or 866-507-7222.
Seizure-Alert Dogs
My name is Mary Black and I am the CEO of Canine Services, which specializes in seizure-alert dogs. The company, which is a 501.3c non-profit organization, has been in business since November 1992. I am also a seizure patient myself—here is a picture of me and Maedchen, my seizure-alert dog.
I had a vagus nerve stimulator implanted in October of 2001 and have been seizure-free for three years, on no anticonvulsants. - Mary Black, canineservices@yahoo.com
CORRECTION: The article "Multiple System Atrophy" (September/October 2009) mistakenly identifies Sylvia Summers as Don Summer's wife who passed away from multiple system atrophy (MSA). It was Don Summer's first wife, Gwen Summers, who suffered from MSA and passed away.