A great cane …

I must comment on the Pilot Rolling Cane pictured in the November-December Quest (“Canes, Crutches and Walkers”). I got one a few months ago and hesitated to use it because I didn’t want everyone to know that I have a problem walking. One day I had to walk a long way, so I took “Pilot” with me. It was so easy to walk those long corridors of our local hospital! So easy to walk the half-mile to where I parked my car! So easy to go to my favorite restaurant, keeping my balance with the rolling cane, while I waited on line for lunch. I now use “Pilot” everywhere I go and the comments usually are, “I love it, where did you get it?” Where? Check the Internet! It’s the best thing for me; I have CMT. It’s not expensive and you’ll find that it’s the best $70-plus you ever spent!

 

Diane Jones Hurt, Va.

… and walker

In reading about walkers in the November-December Quest, there is one walker you missed. A year ago this past

 

Looking ahead

in Quest ...

Watch upcoming issues for articles about sleep studies, noninvasive ventilation masks, a history of wheelchairs, getting schools to provide assistive technology and more.

To see what articles we’re working on and volunteer to share your experiences, go to “You Could Be in Quest,” www. mda.org/publica-tions, or call your local office (800- 572-1717) and ask

to be mailed a printout of this feature from the MDA Web site.

August, I received a U-Step Walking Stabilizer by In-Step Mobility Products. Dr. George Kraft showed me the U-Step at the MDA Clinic at the University of Washington Medical Center in Seattle. The U-Step has two large wheels and five casters. When you let go of the levers (which are the brakes on other walkers), the walker automatically stops, with no continued rolling like other walkers. The U-Step walker comes with a seat and basket and folds to fit into the trunk or backseat of a vehicle.

The U-Step turns so easily that I can turn in a circle with the walker. It also gets into small spaces easier.

Medical supply stores here in the Northwest did not carry U-Step walkers at the time I received mine, so it was delivered from Illinois. It was prescribed through my medical team and Medicare covered the cost.

Dorothy Harrel Seattle, Wash.

Loves digital Quest

I just wanted to write and say how absolutely thrilled I am at your digital edition of Quest magazine. Please let the staff know how much it is appreciated and that the entire interface is so well thought out and easy to use — I couldn’t be happier. If everything on the Internet was designed like this it would be incredible.

Being I am unable to turn pages these days, I will be reading Quest online from now on.

 

Alan Adams

Lake Ariel, Pa.

[Editor’s note: If you haven’t seen it yet, check out digital Quest at www.mda.org/ publications/quest]

Living with SMA

I’m 31, a writer, and have spinal muscular atrophy. I frequently read Quest to check on research updates and to remember what summer camp was like. Going to camp every summer was the most normal I ever felt.

I consider myself lucky because I
have a wonderful family who wants me
to be here for a long time. What people
don’t see, or are scared to admit, is how
lonely and scary living with this disease

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 subscription 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.

 

is. Everything about life that I love I may never get to experience.

I love acting, dancing and gymnastics, and I may never get to try these things. I love all things film; there is almost nothing I can’t answer. When I apply for jobs, I admit my condition on my resume. I can’t even get a job as a gofer.

I want to get married and share my love of film and literature with a wonderful man and children. My biggest fear is that I will die young and alone, never having experienced or achieved one thing I love.

MDA does so much for those of us with this disease, and I know this is selfish, but I hope you will share these thoughts so that people will understand what we few adults fear and face in life. Maybe, just maybe, they will donate a little more money and time so that one day I may get a chance to try what I love.

 

Erica Blinkhorn Atlanta, Ga.

Glad to see
McArdle disease

Thank you for including McArdle disease in an article (“What Not to Eat,” November-December). I have that disease, and I can never find information about it. It also helps to show my family so they don’t think I made up the disease!

 

Laura L. Dean Patient advocate Hartford Hospital, Conn.