MDA Mailbag January-February 2008

by Quest Staff on January 1, 2008 - 10:11am

QUEST Vol. 15, No. 1

In this issue: A great cane ... and walker ** Loves digital Quest ** Living with SMA ** Glad to see McArdle disease.

A great cane …

I must comment on the Pilot Rolling Cane pictured in the November-December [2007] 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 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.

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 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 2007). 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.

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