What's on your mind?

100-YEAR-OLD DISEASE

I have Tuberous Sclerosis and epilepsy. This is an inherited disease and has many problems. It affects all ages, both sexes and all races. It is over 100 years old. Some of the problems are epilepsy, mental retardation, psychiatric, behavioral problems, autism, attention deficit disorder, hyperactivity, brain lesions, tumors in kidneys, heart, eyes, lungs, liver. Does anyone have any information?

Rose Chadzinski

Indiana

HELP FOR SYRINGLOMYELIAS

To D.L. Keller (Winter, '99, p. 20), there is plenty of information on syringlomyelias. What did your doctor tell you? If you have access to the WWW start at www.newmobility.com. or try www.sci.rehabm.uab.edu/ frames/sitecontents.html.

If all else fails, including having a discussion with your physician, start building your medical library.

They think the cause of this is a small nodule that forms at the time of injury during the ionic cascade (positive calcium ions and negative sodium ions). As the syringlomyelia -- a sack of spinal cord fluid, increases in size, pressure is placed on the nerves and you begin to lose function and sensation. If it's going downward and you're complete, it may not matter. In all other cases, it matters. Mine runs from C3-7, and I'm an incomplete C5-6.

To treat, it can be drained with a shunt. Make sure the shunt contains NO latex whatsoever. Use silicone. The more progressive treatment, and a better one in my opinion, is to use a laser on it. Check at a regional rehab facility or get a name from Barth Greene at the Miami Project. He may still be doing them.

If you have been diagnosed with a syringlomyelia, get more information. This is nothing to mess with, for it can effect breathing and the function of the autonomic nervous system.

C.S. Perel

Kansas

For information on syringomyelia contact the support group American Syringomyelia Alliance Project (ASAP), at P.O. Box 1586, Longview, TX 75606-1586, 800-272-7282, e-mail, [email protected] or website www.asap4sm.com. Many in this group would be happy to correspond with you. There is a List Serve if you have computer access. An information packet will be sent to you upon request, including sources for the latest research.

J. Brown

Kansas

EDITOR'S NOTE: We had several responses to this request and most referred D.L. Keller to the above source.

SLEEKER SHOCK ABSORBERS

In response to Peter Young's letter (F'99, p. 15) that he was having trouble with his shock absorbing casters hitting walls and leaving marks. Frog Legs has a redesigned a shock absorbing caster fork that has a more compact and sleek design call the MC5. This new caster fork does not protrude as much and is much easier to maneuver in tight places. Frog Legs is redesigning its full line of manual caster forks with this more compact and sleek design to address this issue for 2000.

David Kaufman

Frog Legs, Inc.

HORMONE REPLACEMENT

To Silvina Casey (W'99, p. 22), you will need a bone scan and probably a 24-hour calcium urine test as well.

If you are not allergic to latex, you can use Miacalcin. It's a nasal spray obtained by prescription. If you are allergic, a parathyroid hormone, called PPH, will be hitting the market soon.

I am allergic to latex, so no miacalcin. My regimen is: 1500 mg Calcium-Oratate at bedtime; 400 iu vitamin D at bedtime; and 750 mg Chelated Magnesium at bedtime.

I don't see an OB/GYN for this, but a nephrologist.

C.S.Perel

Kansas

CAUSE A SCENE

To Maurice J. Capp and Robert H. Hawkins (W'99, p. 14), a short cut to the Department of Justice is to cause a small scene. If ever you arrive at a hotel or motel to find that your reservation for an accessible room has been dropped, the key is to cause a small scene.

Whenever this has happened to me, the first thing I do is to say, "You mean the reservations that I made weeks ago are not valid?" And, each time I receive an answer that indicates that I have been discriminated against, I raise my voice a little more. Ask to see the manager! Threaten them with the DOJ. Soon, they will give you whatever you want just to shut you up. However, on the same token, when they accommodate you, be sure that you thank them.

Keith Rexroat

Tennessee

CELLULAR PHONE SERVICE

Regarding your article on cellular phone service (W'99, p. 80), I called Cellular One's customer service to inquire about the Cellular Accessiblity and was told they do not have this deal. I also went to my local Cellular One and asked to speak to the manager who also said if such a program exists she would know about it.

Ida Swallow

Pennsylvania

EDITOR'S NOTE: Please see the article on page 54 for clarification of cellular phone discounts for the disabled.

ACCESSIBLE HOMES

To Carole Lee (W'99, pg. 22) contact Quality Accessible Homes, Inc., 437 Highland Ave., Westville, NJ 08093. They specialize in designing and building accessible homes.

Stanford Jones

Maine

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COPYRIGHT 2001 Gale Group