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

 

In each issue, space allowing, 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 publications@mdausa.org.
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 sub-
scription and are registered with MDA, contact
your 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.

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.