Letters: September 2012

Love Affair with Vegas
I loved Mark E. Smith’s “Freewheeling in Las Vegas” [July 2012]. I retired here two years ago and love everything here. I noted in his article that he mentioned that the “seat on his power wheelchair elevates him to bar height.” I’ve been looking for a wheelchair that would elevate me a little higher, too, but haven’t found it. Presently I own two manual chairs and two electric scooters, but have always wanted to be higher so I could cook in my kitchen at a more comfortable height.
Samantha Theobald
Las Vegas, Nevada

EDITOR: Mark Smith says this about elevating seats: “Virtually every complex rehab power chair manufacturer offers an 8-inch to 10-inch seat lift that elevates the seated user. The difficulty is that most insurers don’t fund seat lifts, so they must be paid for by Voc Rehab or other funding sources, or out of pocket. I hope this helps.”

Recipe for Regularity
Women need to avoid unwanted bowel movements because they can lead to urinary infections which necessitate taking antibiotics [“Tao of Poo,” July 2012]. The fewer of those the better. I like the Magic Bullet, mannose powder, unsweetened cranberry juice (yucky) and 2 tablespoons of cinnamon plus 1 teaspoon of honey in one cup warm water as needed. I like to eat light in general, but especially around trips. I feel better not feeling stuffed.
Judy Finelli
San Francisco, California

Cut Out the Booze
I’m a C6-7 quad for 33 years. Cutting out alcohol like beer and rum reduces the chances of bowel accidents significantly [“Tao of Poo”]. When I drank I was always nervous about making it to the next program, and thankfully my wife didn’t leave me. Since quitting alcohol and eating a well-rounded diet, “accidents” are a thing of the past. Use Depends or Chux the morning after or day of a program. There always seems to be a curtain call even after the most successful of scheduled colon blows.
Dave Velguth
Appleton, Wisconsin

My Program Works
I’m a 77-year-old female, T6 para since an ischemic stroke five years ago. Because of arthritic shoulders, I cannot transfer and so I use a four-point sling with cutout on a Hoyer lift. For my morning bowel program, an aide pumps me up over my bed, places a bedpan under me and while seated comfortably during the next 15-20 minutes I pull on the sling to do ab crunches and periodically massage my abdomen. I have a successful bowel movement every morning with no suppositories or manual stimulation whatsoever and take Miralax every two or three nights with dinner. I hope this info will help rehab staffs to suggest alternatives; I devised this myself since none of the help sites had systems that would work for me.
Barbara Rausin
Austin, Texas

Carry On, Be Smart
Kudos, Patrick! [People in the News: Patrick Ivison, August 2012]. My hat’s off to you! Not many folks — walkies or rollers — have what it takes to achieve what you have. Keep it up!

Not to detract from your story, but a couple years ago, NM published a story called “The Myth of Walking” [March 2010]. Good stuff. The article’s essential message was that our culture mistakenly defines humanness by walking. Without that particular attribute, a person just isn’t quite up-to-snuff.

I have run into too many people who insist that one day, they’ll walk. And toward that end they consume huge amounts of time, energy and money. Often, with little or no results. It’s not pretty to see someone busting their butt … and refusing to acknowledge reality.

So, quit trying? Hell, no! Bang on the door until you’re blue in the face. But if there are no results, stop. You’ll be better off and so will the poor souls around who have been watching you go through hell.

Disclaimer: We all know the jury’s still out on SCI. Amazing stuff happens all the time. Still, we have to be smart. It’s a fine line between pursuing a seemingly impossible goal and accepting what is. Tough to pull off when the world we live in makes it pretty clear that using a wheelchair just doesn’t get it.

So, Patrick and others of you like him — carry on! Those who can’t, don’t beat yourself up for not doing the uncanny.
Lynn Murray
Placerville, California

Squawk Now!
Do not stay quiet about this! [“HMO Takeovers Threaten Independence,” Everyday Advocacy, July 2012]. We were recently cut off from all IHSS services due to a clerical error. We squawked the next day by phone, saying we were sure there was a misunderstanding. The error was corrected by that night! The State of California mandates that anyone with 24-hour need be interviewed by a doctor or a nurse each year for their annual interview. If you were told about cuts at that interview, you should have appealed immediately. Anyone should be able to see you need that help. All you need is a loud voice and a firm stand and a little jumping through hoops and you should get it. We not only get 24-hour IHSS, we get 35 hours a month housekeeping and 10 hours a night of nursing care from a different agency. Not because we have “pull” from a politician, but because there is bare, naked need.

For privacy’s sake, please withhold my name.
California Resident

A Step Backward
This happened in South Carolina, and I now do not have the access to care I need [“HMO Takeovers Threaten Independence”]. Even my “gatekeeper physician” does not understand what my unique needs are related to my disability, customized wheelchair use, rehabilitation therapy, etc. It is a step backward for those of us who know what complications can occur without preventive interventions!
Dr. Linda Lake
Columbia, South Carolina

Doc Dumped Me
Here in Arizona my caregivers have had their pay cut twice in the last few years. One of my docs dumped me because he said he could not continue to receive such low reimbursement. It is becoming a huge problem for me.
Kirk Sketchley
Tucson, Arizona

Upside Down Medicine
Upon reading the last line of Tim Gilmer’s Bully Pulpit [“Doctor In The House?” July 2012], I let go with an audible “No shit!” It seems to me that he was by far the most qualified person in the room. Medical costs are through the roof as it is; having to self-diagnose and prescribe in a hospital environment is ridiculous. I’m saddened to know that those of us in similar situations have no means of compensation when we must be our own best advocates in a world where our medical professionals seem to know less than their patients.
Steve Lockard
Clovis, California

Don’t Judge ‘Push Girls’
Dear Mr. Presley, don’t ever judge a television show, especially an ongoing reality series like “Push Girls,” if all you’ve seen is the first episode [Letters, July 2012]. The show has gone much further than you think. One episode had a mother refusing to acknowledge that her daughter’s life could even be worth it with a disability (the mother’s attitude was disgusting until she finally saw the light), and the latest episode showed the disabled women debating and discussing the use of stem cells to help them walk. To me, these are worthwhile topics, and much more than the fluff you make “Push Girls’ out to be.
Albert Sanchez Moreno
Atlanta, Georgia

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