MDA Mailbag Fall 2013

by Quest Staff on October 3, 2013 - 8:59am

Quest Vol. 20, No. 4

OPMD Yahoo group

As I have OPMD [oculopharyngeal MD], I receive and much appreciate Quest magazine! I note that there have been letters to the editor in the past two issues asking to be able to communicate with others who have OPMD. [I am] the owner/moderator of an OPMD Yahoo email list with around 300 people on it, and I would suggest they join our OPMD group, as I would also suggest to any others out there who may also be suffering with OPMD, or who have a family member with OPMD. Simply go to and click on “Join This Group.” Our group has many wonderful people who have much experience with all aspects of OPMD and willingly share it with other group members.

Philip L. White
Marquette, Mich.


Vans for multiple power chairs

I write to share a lesson learned after we purchased, for the first time, power chairs for my wife and adult son, both of whom have MMD1 [type 1 myotonic MD], and [then bought] an accessible vehicle. 

For the vehicle, we invested three months picking the brains of experts, reading, test driving, and thinking. We decided on a converted mini-van. We acquired two power chairs at the same time. Upon delivery of the vehicle, we read the manuals and discovered that we and two power chairs probably weighed more than the vehicle’s maximum safe carrying capacity (“the Safety Max”). Using a scale, it was determined that we, the power chairs, and lock down equipment exceeded the Safety Max by 26.85 percent, exclusive of any luggage. Substituting our manual chair for one power chair, we would be just over the Safety Max, exclusive of any luggage.

The Safety Max issue had not come up during our three months of research. The vehicle had to be returned. Whether one is looking to buy or already owns an accessible vehicle, you should compare the Safety Max of the vehicle and the total weight of all occupants and everything else the vehicle will be carrying. If that total weight equals or exceeds the Safety Max, that means the vehicle cannot safely and reliably carry the weight. Some adjustment has to be made, at a minimum, to bring that total weight below the Safety Max. 

Gerald L. Lynch Jr.
Schenectady, N.Y.


Beware snake oil salesmen

I have OPMD [oculopharyngeal MD] with severe pain. My letter in Quest [Pain and exercise in OPMD] has been followed by emails to us from patients and one dishonest thief offering to sell us worthless [junk] quoting the name of Harvard. There is no herbal or homeopathy product that is used by any hospital in this country. Keep that in mind. There is a reason. They don’t work. In time they are all shown to be worthless and the buyers have thrown away all money spent — given to these thieves. Bad people are taking advantage of your weak position, i.e., needing something to help you. Do research and remember that anyone that quotes the name Harvard or any other reputable medical institution, stay away from them. They are good for nothing other than trying to steal your money from you.

Debra Diamond
Simi Valley, Calif. 


Accessible Amtrak

We enjoyed reading To Boldly Go — All Aboard Accessible Amtrak. For the person with mobility constraints, train travel is definitely more pleasant than flying.

Last year, we would have written just as glowing an account after we traveled overnight from Lorton, Va., to Sanford, Fla., in an accessible bedroom in the Auto Train. My husband has limb-girdle MD and must be lifted from his wheelchair onto a seat. We brought our manual Hoyer lift to transfer him. At Lorton, the attendant picked him up from his chair and placed him on the seat; when we arrived in Sanford, the attendant helped as I used the Hoyer to transfer him from the seat to his chair. The seats are very narrow with no armrests or seat belts. My husband could not use the bed. I did use the upper bunk.

However, on the return trip it was totally different, even though when I booked the passage I advised them of the Hoyer lift. After I had used the lift to place my husband on the seat, we were visited by two train officials and advised that we could not have a Hoyer lift on board. Within an hour of reaching home, we received a telephone call from an Amtrak representative advising us that we could not bring a lift in the future. Needless to say, we will not be traveling again on Amtrak since my husband could never sit in his wheelchair locked to the wall. The train rocked back and forth severely when traveling at top speed through the Carolinas. He actually was very nervous about the shallowness of his seat without an armrest and seat belt. 

Mary Loren
Manassas, Va.


Response to ‘Fight Back Against Isolation and Loneliness

I enjoyed the From Where I Sit article about loneliness. I agree with the article. I have FSH [facioscapulohumeral] MD; it has taken my shoulders, hamstrings and lower back muscles. I use a scooter. After my family died, everything I owned was sold, and I was forced to move into a nursing home. I had no pain until I was injured in these “homes.” I have a displaced hip, which hurts, so I stay in bed. I write, paint and read. I have no computer. I need the company of real people to chat and play Scrabble and cards with.

I am surrounded by sick people and few volunteers come here. Whenever someone does come, it perks me up so much, and my isolation is briefly forgotten. Living here is so stressful; I fear it is making me sick. I enjoy life, and I don’t want to be injured anymore. I pray every day, but I still feel alone. 

Mary Morgan
Columbus, Tenn.


Response to ‘Fight Back Against Isolation and Loneliness’

The tips for beating loneliness is a good and practical article that may help some people to reduce their loneliness. To the list of ideas I’d add:

  • Prayer and/or meditation. It’s been helpful for me to do this three times a day, shortly after I get up, around noon and just before bed. For those who believe in God, it’s very comforting to pray.
  • Exercise the areas and joints of our body that still have motion associated with them, no matter how few.
  • Pick up a hobby, for example, something as simple as drawing with pencil on paper.

Said Shakerin
Stockton, Calif.


Response to ‘Fight Back Against Isolation and Loneliness’

I really enjoyed reading Barbara and Jim Twardowski’s excellent article about loneliness in the latest Quest magazine.

I have CMT [Charcot-Marie-Tooth disease] and use a power chair full time and it seems that every year I lose something out of my life — some person, some ability — until often I feel terribly alone, especially in the middle of the night when I am frequently awake. 

My husband died three years ago. We had been married 66 years. I live in Pennsylvania. My son and daughter-in-law live in Florida and have no children, and my daughter, who has two children, lives in Massachusetts. The last I saw any family was last Thanksgiving [although] my son phones every day.

Luckily, I am involved with other poets from Pennsylvania and in other states and we are in touch by email. I am part of a CMT support group, which also helps.

I have written my feelings out in lyrics which could be put to music by a country singer:

There is nothing more lonely than living alone,
when your heart is still beating, but feels like a stone;
when the face in the mirror does not seem your own,
and each tock of the clock seems a year.

There is nothing more lonely than living alone,
nights sleepless and endless, pain deep to the bone;
only sound in the silence, a groan or a moan,
and each tock of the clock seems a year.

Somewhere there are bright lights and laughter and song,
somewhere there are friendly faces;
but somehow your life has gone terribly wrong,
you no longer fit in those places.

There is nothing more lonely than living alone,
the ice cream is melted, you're left with the cone;
your happiness wishes, your candles all blown,
and each tock of the clock seems a year.

Oh, there's nothing more lonely than living alone,
when rainbows have faded, the bluebirds have flown;
you never hear voices except on the phone,
and each tock of the clock seems a year.

Ann Gasser
West Reading, Pa.


Response to ‘Fight Back Against Isolation and Loneliness’

I could really identify with [the loneliness] column. I’m also a social person and in my 50s, my CMT [Charcot-Marie-Tooth disease] caused me to be home alone much more, what with my husband working and, at the same time, I was experiencing an “empty nest.” It’s gotten worse because sciatica pain limits the length of time I can sit in my mobility scooter. Our damp cold environment makes it unpleasant to go out and affects the use of my hands. I even gave up volunteering at my art co-op.

But I did take action a few years ago [when I] heard that some art friends’ critique group fell apart and I invited them to come to my house monthly — they loved the idea. I also exhibited my vulnerability and said I missed seeing them all. We’ve been meeting together for about six years. Not only does it help me, but they are all over 65 and it helps keep them connected, too, and producing art. I occasionally invite friends over for lunch, too, and use a delivery service for a treat. Loneliness is a terrible thing, and I think a lot of people just don’t understand that, especially when they’re younger and are busy with their own family. 

Melody Cleary
Beaverton, Ore.

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