MDA Mailbag Winter 2012

by Quest Staff on January 1, 2012 - 12:09pm

QUEST Vol. 19, No. 1

Pen Pals

I strongly disapprove of your decision to discontinue the Pen Pals section in Quest. I believe this is a hugely important and vital part of your magazine. Since I do not have a computer and would like to contact the MDA office for this information, this puts me and others at a major disadvantage.

It is always comforting to know there are others with muscle problems and it’s easy to drop a note to someone who is receptive to my situation. If there is only one ad in the Pen Pals section it serves a basic need for people to know they are not alone. I would much rather see other parts discontinued as they only relate to a select few. The Pen Pals section serves everyone.

Wayne Milewski
Streamwood, Ill.


Editor’s note: We sincerely appreciate the service that Pen Pals has provided for Quest readers through the years, and we’re also sad to see it go. Though we’re no longer able to offer this feature due to privacy concerns, as the writer notes, personal connections can be made through the local MDA office (800-572-1717). Those who are online can connect through MDA’s Facebook and Twitter pages or MDA’s online chats.


Fall 2011 Quest kudos

Wow! Thank you! This is a truly EXCELLENT issue!

I am recommending several articles (Caregivers: Teaching Independence and Paid Caregivers: The Good, The Bad and the Crazy, for example) to people in general, especially my fellow students.

I am currently working on my M.A. in Deaconess Studies at Concordia Theological Seminary, Fort Wayne, Ind. Since I have type 2 SMA (spinal muscular atrophy), am 53, and do not function well in the cold, I am doing it with the online option. It is such a pleasure to be able to combine my own physical realities with the simplicity and power of sound theology.

I do believe that the best article in this issue is the From Where I Sit by Debbie Button called Living Outside the Bubble. This article is a gift to all caregivers and parents, people with neuromuscular diseases and many other complex situations.

Again, thank you for this excellent set of articles and encouragements!

Lisa Stapp
Fort Wayne, Ind.


Tip for Kindle users

In your Fall 2011 Quest [Mobile Tech Tips for Weak Hands], referring to Kindle readers, [it’s stated] that “... hand mobility is required to turn pages.” That’s not quite true! 

My wife has ALS (amyotrophic lateral sclerosis), and she reads on her Kindle many hours a day by using the “text-to-speech” feature with the volume turned off! True, someone has to turn on the Kindle, select the book, and select text-to-speech, but then she needs no assistance at all. The pages turn by themselves when the (silent) voice gets to the end of each page, and a caregiver can speed up or slow down the page turning. Using this feature decreases the time between battery charging, but no other reader provides this solution for [such a] low price!

We have passed on this tip to many others, and they love it!
 
Dan Sigler
Renton, Wash.

 

Living Outside the Bubble (Quest October-December 2011)

It is good for the mother to let her son make his own decisions. She let him be an adult with a disease and not a child that is sick. I have to compliment her on that. Did he always make the right choices? Probably not. But they were his choices to make.

 

Accessibility Means Being Able to Get Out of Your Own Driveway (Quest July-September 2011)

Excellent story and what an encouragement to me. I have distal MD and have always prided myself on being independent. However, over the last year my ability to walk has been decreasing. As we do not live in a handicapped-accessible apartment, our complex was slow to respond to our needs when it came to parking and mobility getting in and out of the car. After much work on our own, we finally got things fixed. Bottom line ... perseverance is the key!

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