MDA Mailbag Winter 2013

by Quest Staff on January 7, 2013 - 9:03am

Quest Vol. 20, No. 1

From Where I Sit
Thanks so much for the article by Kristal Hardin [Going Out: ‘Is It Really Worth It?’, July-September 2012]. I have read it over many times. I could have written this article from experience. I am a 77-year-old woman and was diagnosed with limb-girdle muscular dystrophy in 1972. The MD has progressed very slowly. First a cane, walker, then a wheelchair. Sometimes I have to say, “Is it really worth it?” — but sometimes it breaks your heart. Recently, I had to miss my grandson’s wedding and my granddaughter’s nursing graduation because of unknown questions (bathrooms, steps, etc.), and weakness of arms and legs. Do I go or do I stay? I really do understand. But, by the grace of God, I am still here today!

Mary R. Blan
Antlers, Okla.

 

Merchandise too costly
In regard to Tonita Sanchez’s letter in the October-December 2012 MDA Mailbag [Disability products too expensive], I too find handicapped merchandise very costly. I have a Go-Go Elite scooter. The wire mesh basket got damaged, and I had to buy a replacement through the dealer. The plastic basket was smaller than a desk trash can and was installed by the dealer for $65. The armrests tore, and the replacements were 2 inches longer, but I could not just replace the pads. A seat lock lever cost me $155. [Dealers] know Medicare pays for some of these supplies — seems they’re ripping off Medicare.

Francis Lawrence
Limb-girdle muscular dystrophy
Baton Rouge, La.

 

IVIG therapy experiences
I just read Diane Crispell’s letter in the October–December 2012 issue and am also writing in regard to the article about IVIG [Guidelines released for intravenous immunoglobulins, July-September 2012]. I was diagnosed with dermatomyositis in late 2005. I also was barely able to walk, climb stairs, stand up, lift my arms, turn over in bed, or get in or out of bed or a car without using my hands to lift my legs. I received weekly IVIG treatments for several years. Unfortunately, I may as well have been drinking water for all the good it did. The enormous waste of time and money was unbelievable. I am here to attest to the veracity of the article. I believe it said that IVIG was, for the most part, not helpful for myositis sufferers. Ms. Crispell is extremely lucky to be one of those who does not fit into the category of the unfortunate majority of people that IVIG does not help.

Lucy A. Dawson
Urbana, Ohio

I noticed the letter from a woman in Levittown, N.Y., who has polymyositis (PM) and is concerned with the latest regarding IVIG. I too have been diagnosed with PM. I have been treated with IVIG on various schedules since then and am VERY happy with the results. After being on disability four years ago, I returned to my job as a paramedic after beginning the IVIG treatments. Since then, I have received my RN certification and work 36 hours a week both as a paramedic and an RN. I too believe that my doctor and IVIG have been lifesavers for me, and if I had not received the treatment, I would be on disability and relegated to a wheelchair. I believe this retrospective study will prove detrimental to those of us who benefit from the treatment, especially with the way the health care system is going.

Donna Miller
Pemberton, N.J.

 

High costs; standing transfer lifts
I have two separate suggestions, based on the contents of the Fall 2012 issue. One of the letters [discussed] the high cost of disability products. The problem is the bureaucracy associated with the regulation of the industry. While some regulation is certainly needed, the bureaucratic overhead is where the excessive cost lies. We cannot eliminate all of the bureaucracy; however, we should be pressuring our legislators to reduce that totally excessive cost.

Also, the portable lifts article [Portable Lifts: A Real Pick-Me-Up for Caregivers] failed to mention rolling standing transfer lifts such as the Sara 3000 by ArjoHuntleigh. For a person with any arm and leg strength, these are much more convenient for the caregiver and affected person than a sling lift. The EasyPivot patient lift by Rand-Scot mentioned in the article performs a similar function, but the Sara 3000 (or equivalent) is much more comfortable for the patient.

David Sweetman
Inclusion-body myositis
Dyer, Nev.

 

Pen Pals
I've been reading comments by individuals who are disappointed that the Pen Pals section of Quest has been eliminated. I wrote to an individual who wanted a pen pal. He was from the city where I was born, so his request interested me, and I wrote to him. The letter I received back from him was rambling, and some of his comments were frightening; therefore I didn't respond. He wrote me a second letter; again I didn't respond and never heard from him again.

I want to do no more than to make you aware of my experience.

Name and location withheld by request

 

Letters to the Editor

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