MDA Mailbag Fall 2009

by Quest Staff on October 1, 2009 - 11:20am

QUEST Vol. 16, No. 4

Letters to Quest: A former MDA summer camper shares her memories ** Readers respond to articles about exercise, public transit, travel problems, caring touch ** Selfless fire fighters help a Virginia man ** A reader asks about overusing hand muscles while playing video games, and MDA Medical Director Valerie Cwik responds.

Camp is magical

I started going to the summer camp when I was 9. Camp was a magical place. I wasn’t the only kid with [muscular dystrophy]; I knew I had a place where I belonged.

We did arts and crafts, skits, fashion shows, movie nights, spa days and, best of all, Friday night dances. We also went fishing and swimming and had campfires. Every year we got a T-shirt. I have 13 of them, because I went for that many summers. 

All of us girls always spent Friday afternoon doing our nails, make-up and hair to look pretty for the dance. I usually took one or two cameras with me so I wouldn’t miss one single moment of fun. I don’t know what I’d think today about stuff like this if I hadn’t experienced it myself.

My life has been pretty blessed with the camp as my second family. I will remember everything always. Thank you MDA summer camp for your endless friendship.

Sarah Jefferson
Union, Ill.

Thanks for exercise edition!

I have to tell you how much your April-June 2009 issue of Quest meant to me. Never have I seen such important information all together on metabolic muscle diseases — especially the one I have, myoadenylate deaminase deficiency (MADD) — and the effects of exercise.

Little is known about [MADD] regarding exercise. I have had almost constant pain, fatigue and cramping with exertion and repetitive exercises. Over the years, many in the medical field have had differing opinions about physical therapy; some prescribed therapy that worsened my condition.

Your article helped me appreciate that “one size (exercise) does not fit all.” Pushing myself, listening to those unfamiliar with the disease and my physical ability, is not the way to go. I feel better knowing that I should listen to my own body and not get frustrated over the things I cannot do or over the ignorance of others. 

Bettye Fulton
Charlotte, N.C.

Love my scooter

Re: “Travel Scooters Offer an Easy Way to Go,” July-September 2009. I want to share my experience with others who love to travel and require a mobility scooter.

I was diagnosed with inclusion-body myositis in 1993. I’ve always been a very active individual and love to travel. In late 2005, I started researching lightweight portable scooters. I test-drove several but there were always problems. In 2006, while surfing the net, I met Elaine Latham of Electropedic Beds [who suggested] The Caddy by EV Rider.

I took a chance and ordered one. Best $1,400 investment I ever made. My Caddy has been from coast to coast and border to border, Hawaii, Mexico, Costa Rica. At home, shopping malls, concerts, rodeos, car shows, state fairs, doctor’s appointments, etc., are a breeze.

It takes less than a minute to unload, install the batteries, unfold it and go. Airline friendly — wow! I drive to my gate and down the jetway. It’s treated like a stroller; once I arrive, it’s right there waiting for me. It has logged over 35,000 frequent flyer miles and never once left me stranded. If you like to travel, I recommend it highly.

John Salazar
Española, N.M. 

Humans first

Re: “A Caring Touch Can Work Wonders,” July-September 2009. Kudos for recognizing and bringing to the forefront that we are humans first, then sick or disabled. We desire, crave and pray for the most normal of lives that our illness will allow. This includes being touched, having someone to touch and, yes, sex. Intimacy is one of our strongest desires, yet often it is the one that is pushed aside.

I unfortunately can relate to Carol’s perspective, and also believe in some respects that I have become “expendable.” Like Carol, I also worry that pushing the issue too far will jeopardize my security.

I remember a statement from a former ALS patient: Long before ALS robs us of our lives, it robs us of our masculinity or femininity. It robs us of what it means to be a whole person with ambitions, desires and needs. I attend an outstanding ALS clinic, yet this most basic of needs has never been addressed. Everyone is afraid to bring it up for fear of having to deal with it.

Bill Schmitt
Valparaiso, Ind. 

Amazing Dad

My father’s name is Duane Petrakis. He was diagnosed with facioscapulohumeral muscular dystrophy (FSHD) when he was 18. At that time, he was told he’d be in a wheelchair by the age of 21, and no longer with us by 25. My father is now 64 and has not slowed down. [Doctors say] that it is amazing he still walks.

He has always been one of those guys that put off their lives for everyone else. Over the past year, my father has started to get worse. He now has a really hard time getting out of bed, and when he falls, he is unable to get himself back up.

He is an outstanding man who has always helped so many others with disabilities; unfortunately, there really is not much help for him. It has been a very hard road for him, but he still thinks it was God’s will. 

Gina Prevette

Public transit pioneers

Re: “Public Transit in Boston & Phoenix,” July-September 2009. I have SMA3 (spinal muscular atrophy type 3). I remember how bad it was when public transit first started here in San Antonio. The bus drivers would refuse to kneel the bus when they lowered the ramp, which would have made it easier, as the ramp wouldn’t have been so steep.

Then, I would board the bus and other bus riders would say ugly things like how time-consuming it was to put me on the bus. Yes, we were the pioneers to pave the way for future riders so they would not have the problems we went through.

David R. Garcia
San Antonio, Texas  

Selfless fire fighters

I’m writing to share my gratitude for the professionalism and compassion of Greg Russell, president of International Association of Fire Fighters Local F121.  Quite simply, this selfless fire fighter changed my life.

For over 20 years, I’ve struggled with inclusion-body myositis. At age 41, my muscles have atrophied to the point that I rarely can walk under my own power. In order to continue living independently, I needed a ceiling lift from bedroom to bathroom. The only other option was a nursing home.

Even as I made arrangements for the lift, I couldn’t find a patient sling with the proper amount of body support. I had one last idea — a rescue harness. I thought of Greg, an old high school friend with whom I’d recently become reacquainted.

Within two weeks of calling Greg, I had a workable harness in my hands. Not only did Greg find the right harness, but he ordered it and personally altered it so I could use it without assistance. He wouldn’t allow me to reimburse him for the cost.

Greg didn’t do this out of a sense of obligation or pity. He simply did what he would do for anyone with a need. That is the selfless spirit of fire fighters which I’d only read about before. Now, I’ve lived it — and what a life-altering change that has made in my life.

Greg A. Harris
Norfolk, Va. 

Re: “Who Ya Gonna Call When Air Travel Goes Bad?” July-Sept. 2009

I am sorry Julianna Dombrowski had such a hard time flying. My wife has FSHD and we have flown with Delta. When she was using a walker, they would provide a wheelchair to get her onboard. When we arrived, they’d meet us at the gate and get us to our connecting flight.

Now, she is in a power chair. She rides it to the door of the plane and it’s loaded in the baggage compartment. When we arrive, it’s waiting for her. Delta and other airlines have always been very good to her. The only problem we have had is with restrooms, but we manage.

Robert M. Munn
Camden, S.C. 

I was interested in the article concerning disastrous air travel with Delta Airlines. I had several similar experiences with Northwest Airlines and the airport in Minneapolis. Reading the article brought back the nightmares of those trips.

But there is hope. I have just returned from a trip to Houston from Iowa. We have found that American Airlines goes all out to help people with disabilities. From the booking and all throughout the trip, I was treated with the finest care. This is my second trip in less than a year with them, and I have nothing but praise for their airline and personnel.

From being afraid to fly after many horrifying experiences, I can now travel alone, knowing I’m safe and cared for. I’m not even putting away my suitcase this time. I’m going again for Christmas!

Joyce Mott Johnson
Evansdale, La., and Glenville, Pa.

Overusing hands? 

I have myotonic dystrophy and recently turned 22. I have a lot of spare time on my hands and I enjoy playing video games – sometimes five to six hours a day. My grandmother feels very strongly against playing the games for hours at a time. She says if I overwork the muscles, I can lose them. She says my hands have signs of carpel tunnel, the result of overworking the hands. I have concerns, but still play my games. 

Also, I am going now to a gym to exercise and socialize. Again, my grandmother is telling me not to overwork my muscles too much. What is the correct amount of time for someone in my condition to exercise without hurting my muscles

Justin Baisden
Redding, Calif.

Editor’s Note: Valerie Cwik, MDA medical director and vice president for research, notes that people with neuromuscular diseases have a wide range of muscle strength, with some being extremely weak and others having minimal weakness. The effect of activity on muscles also is dependent on disease, with some individuals being more susceptible than others to injury or serious muscle breakdown.    

"That makes it difficult to comment on specific activities or suggest a generic exercise program, and means that any activity must be tailored to the individual's disease, their abilities and to their particular response to exertion," Cwik says. 

The concern, Cwik cautions, is that overwork may lead to muscle damage and breakdown, and even greater weakness. Stiffness, cramps, twitching, pain and fatigue are some of the signs you may have overdone it.    

Muscle breakdown may lead to leakage of muscle proteins, such as creatine kinase (CK) and myoglobin, into the bloodstream and urine, causing cola-colored urine.  Myoglobinuria, if severe, may cause the kidneys to shut down.    

There is no specific data about the effect of video games on muscle health for those with neuromuscular disorders. For most individuals, light stretching, active or passive range-of-motion exercises may help keep joints loose; if OK with your doctor, light resistance exercise may also help keep muscles in shape. Taking breaks in order to let muscles rest and recover is important as well. 

Your MDA clinic director can help you determine if exercise or a particular activity is right for you and come up with a program tailored to your individual needs. 

For more on this topic, see "Exercising with Muscle Disease," April-June 2009,  and Game to Get Away,” September-October 2008.

Grateful for MDA Community

Although I live in Los Angeles, one of the largest cities in the world, I have never met other people who "look" like me, walk like me, and understand my life experience.  

As a 30-year-old woman with an undiagnosed form of muscular dystrophy, your magazine continually brings me tears of joy and hope.  I laughed and empathized with Ms. Low-Dumond's all-too-familiar tales of son Zach's high school anxieties (“As If High School Weren’t Tough Enough,” July-September 2009), and wished I knew of your organization at that age.  

Thank you for continuing to remind me that I'm not alone and for building community.  My physician's latest potential diagnosis is Bethlem myopathy.  I'd love any information, or better yet, to hear from others with personal experience. 

Nicole Marie Perez
Los Angeles, Calif.

In each issue, Quest will run letters sent to MDA, National Chairman Jerry Lewis or to the magazine.

Write to: MDA Mailbag, Quest, MDA, 3300 E. Sunrise Drive, Tucson, AZ 85718-3299. Or e-mail letters to

Letters must be signed and contain a daytime phone number, city and state, and be no more than 250 words. Letters may be edited for space.

If you have questions about your Quest subscription and are registered with MDA, contact yhour local MDA office by calling (800) 572-1717. If you're not registered with MDA, direct subscription questions to the national office at (520) 529-2000.

No votes yet
MDA cannot respond to questions asked in the comments field. For help with questions, contact your local MDA office or clinic or email See comment policy