Multiple Sclerosis
I am a new subscriber to your magazine and just read your latest issue. The most inspirational item for me was "Accepting Multiple Sclerosis" (Speak Up, Nov./Dec. 2008) by Ruth Just. What a wonderful attitude she expressed. I am sure it will help and inspire many sufferers of different afflictions. - Uta M. Behrens, Phoenix, AZ
I want to thank you for "Accepting Multiple Sclerosis" by Ruth Just. I feel like she was writing that to me, personally. I was diagnosed with multiple sclerosis (MS) in April 2008. At first, I was so happy to finally get a diagnosis, after years of hearing "We don't know what's wrong with you." Once it settled in, I went through the anger, bitterness, and sadness of having MS.
It's been more than eight months, and I'm still going through the same emotions, wondering if I'll ever feel happy again. So, acceptance is very difficult for me right now. The article says that the first thing you have to do is accept MS, and you must accept it over and over again. I cut out the article, and have it posted on my desk at work. Hopefully with the positive advice from this article, I will soon be able to accept MS and move on to a happier life. - Deborah Schoenberger, Bethel Park, PA
Thank you for writing "The Seizures No One Wants to Talk About" (Nov./Dec. 2008). I believe you did a good job stressing that people who have been diagnosed with psychogenic non-epileptic seizures are not faking them. As someone who has been diagnosed with both post-traumatic stress disorder (PTSD) and psychogenic non-epileptic seizures, I have been accused of "faking" many times, both by relatives and the medical professionals who should have known better. Hopefully, this article will help educate.
It is my hope that neurologists will not be satisfied with the simplistic explanation that these episodes are the body's way of dealing with psychological stress. I'm hoping that they will continue to examine the PTSD connection and in doing so keep in mind the latest trauma research, which shows that trauma causes significant dysfunction to the autonomic and endocrine systems. - Michele Grimsley, Stoughton, MA
Myasthenia Gravis
Words cannot begin to express my deepest appreciation for publishing an article in your Nov./Dec. 2008 magazine regarding myasthenia gravis (MG). At the age of 53 my husband Terry was diagnosed with MG in June 2007. Six months prior, he had all the symptoms of MG, including the drooping eyes. He went into our bank one day and was told to leave—the bank accused him of being intoxicated. Once I had to call 911 because he couldn't swallow. The ER physician said he had laryngitis and wanted to discharge him, but an ENT diagnosed him with MG.
A CT scan of Terry's chest showed a tumor on his thymus, and although they wanted to do a thymectomy immediately, he was too ill for them to do so. A year and half later, my husband has regained the over 30 pounds he lost during this nightmare. He has chosen not to have the surgery, only taking minimal prednisone and mestinon when necessary. His neurologist disagrees with him, even though he couldn't guarantee that Terry would make it through the operation or see any improvement in the MG.
To look at my husband now, you would never know he was so ill. We live very happy, fulfilling lives, knowing what we're dealing with, and not letting it control us. - Georgene Burgess, Tampa, FL
Epilepsy
I have a 27-year-old daughter who has several types of epilepsy, which remain poorly controlled despite our having tried most of the anti-seizure drugs both alone and in combination. I recently viewed a TV program that featured an epilepsy patient who had a German shepherd dog that accompanied the patient publicly. When a seizure was imminent, the dog would press any key on the cell phone that was programmed to direct all such calls to 911.
Where is it possible to procure such a dog, and what kind of training is required? - John Trefil, M.D. (retired), Albion, CA
THE EDITOR RESPONDS: We published a story on seizure-response dogs, "Helping Paws," in the July/Aug. 2006 issue of Neurology Now. One organization that trains seizure response dogs is Canine Assistants (canineassistants.org; or call 1-800-771-7221).
Parkinson's and Pesticides
Sitting in the waiting room of my neurologist, I had an opportunity to look over the Sept./Oct. 2008 issue of Neurology Now. Appropriately, I turned to the "Waiting Room" section and read the article entitled "New Study Links Parkinson's and Pesticides."
Having recently celebrated 42 years in the pest-control industry (half with a national pest control firm, and the other half as the owner/operator of a regional pest control company), I can say that I have had hundreds of people working under me who handled pesticides on a daily basis. I cannot recall one single instance where any of our technicians developed Parkinson's, or had any other type of neurological problem. With worker's compensation insurance readily available, I probably would have been the first to know of any incident. Your article specifically mentioned chlorpyrifos, diazinon, and malathion, all common pesticides used by the pest control industry.
It seems to me that if Duke University Medical Center and the University Of Miami Miller School Of Medicine had wanted to do a more thorough study they would have included people who work with pesticides on a daily basis, rather than singling out people with Parkinson's and their relatives and asking about their pesticide exposure. Could there be a tie between Parkinson's and the laundry detergents used by the subjects? - Joe R. Wilson, CEO of PermaTreat Pest Control, Inc., Fredericksburg, VA
Hydrocephalus
Your article "Hidden Pressure" (Sept./Oct. 2008) will be of immense importance to patients and their families. Copies of your magazine in waiting rooms of neurologists will prompt them to overcome dismissals of NPH symptoms as just a sign of old age. It may also allow the liberation of thousands of misdiagnosed Parkinson's and Alzheimer's patients from their premature nursing home captivity. Thank you on their behalf. - T.W. Weston, Fayetteville, Texas