MDA Mailbag Fall 2010

by Compiled by Quest Staff on October 1, 2010 - 11:27am

QUEST Vol. 17, No. 4

Letters to Quest: Understanding muscle disease * Positive outlook on disabilities * Justice denied due to MD * Feedback about Quest stories online

Thanks for CCD article

Thank you for the central core article (In Focus: Central Core Disease, April-June 2010, Vol. 17, No. 2). It has helped me to show my new physical therapist, who is from the Philippines, what I need. Many of my family members want to read the article. It helps [us] understand better why so little is known [about the disease].

I am 62, and was a floppy baby. My sister, who was 14 months younger than me, showed me what to do each step of the way. I wish I could find a way to become an e-friend to someone who has had my problem. I have a master’s degree in education and taught for 30 years. I do not let pain or the difficulty of everyday life hold me back.

Renée F. Richter
Opelousas, La.

Another ‘good cripple’

I just wanted to say how much I appreciated the article by Deshae Lott in the Summer 2010 Quest (Call Me a Good Cripple — If You Must). It is beautifully written and I can’t wait to read it to my son, or have him read it! What a positive outlook on disabilities. It resonates how I am trying to raise my son and daughter, with knowledge and compassion. I so love the Santa/Rudolph analogy. I will also encourage my son to “embrace his capacity for creative living, expressing his uniqueness in innovative, socially acceptable ways.” I guess he too is the “Good Cripple,” taking responsibility to educate others.

My son has Becker MD (very mild) and Tourette syndrome. He embraced his TS and finally found the courage to educate others. What a difference it has made in his 12-year-old life! Ms. Lott’s article will only encourage him to continue educating in a very positive and compassionate way. Thank you again.
Lisa Welsh
Lincoln University, Pa.

Justice denied due to MD

My wife has a rare form of OPMD (oculopharyngeal MD) with significant, recalcitrant pain. I want to relate a story that shows that genetic maladies can hurt you in unsuspecting ways.

[Several years ago] I was driving my wife back from a physician’s appointment and a large truck plowed into us from behind. This led to my wife’s new symptoms: hours each day of ringing in her ears, and severe chronic headaches with severe neck aches. She had experienced none of these in the 20 years prior to this terribly irresponsible act.

After nearly three years of medical care and rest, she was only getting worse, so our attorney suggested we settle our suit against the driver’s automobile insurance. Following several hours of negotiation, my wife received $13,000 — less 40 percent for our attorney. The offer was based on her having a pre-existing neuromuscular disease!

Even though we submitted a medical history and physician’s statement showing that these new symptoms [did not exist] before the accident, those deciding the case were ignorant and could not come up with a just decision for her. They did not know how to separate the pain from her MD and that which resulted from the crash. There is no way (yet) that pain can be measured with a lab test.

Now, months later, her side effects from the accident haven’t abated at all. Between the MD and her new sufferings, I cannot imagine how she has the will to go on. Perhaps it is my telling her that all neuromuscular conditions will be repairable in the next 30 years or so through genetic alteration.

I don’t want her to suffer anymore. I love her more today than when we married 27 years ago. My take-home message is that a pre-existing, neuromuscular condition also can prevent you from justice in unexpected ways.

Ron Diamond
Camas, Wash.

RE: Great Expectations: Pregnancy and Childbirth with Neuromuscular Disease, Quest Vol. 17, No. 3, Summer 2010

I am 43 years old, and have SMA (walked until I was seven, been using a power wheelchair since). Twenty years ago, I searched all over for the kind of information provided in this article. Unfortunately there was none to be found. Ultimately, I was very lucky; I gave birth (via C-section) to a healthy daughter 14 years ago. Most of the problems I had during the pregnancy were resolved after the delivery. It was a wonderful experience, and one that I am blessed to have had.

— Kelly B.

RE: “Call Me a Good Cripple&— If You Must, Quest, Vol. 17, No. 3, Summer 2010

The article … gave me insight into working with both persons with and without a disability as a Disability Program Navigator. Sometimes we tend to stereotype people without a disability and believe they do not want to aid in providing opportunities for people with disabilities to succeed.

— Bernie Coffee, Concho Valley Workforce Development Board, San Angelo, Texas

RE: New Grant for LGMD2D Gene Therapy, Quest News Online, December 23, 2009

Thanks for everything MDA is doing. I have been reading this website for more than six years, and every day I see progress and a new hope.

— Saad AlGhamdi, Saudi Arabia

RE: In Focus: OPMD — Stopping a Long Protein from Shortening a Life,” Quest Vol. 16, No. 4, Fall 2009

I am a 59-year-old Afro-American female with OPMD. The website was very informative, and I thank you for all the information you provided. It was worth reading, and now I understand more about OPMD. Thank you very much.

— Anonymous, United States

RE: The accessibility of Quest online

Excellent and easy to navigate. I found all the things I was searching for and some things I didn’t know about. Thank you for your support and keeping these pages updated!

— Anonymous, United States

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