Battling ALS

ALS, Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's disease,  is a motor neuron disease which currently has no known treatment and no known cure. More research is needed to find a way to combat this devastating disease, which leaves the patient completely mentally alert but unable to move, and in later stages, usually unable to talk. Because of the degeneration of all the muscles, ultimately ALS patients need help even with breathing. Despite this physical deterioration, the intellectual and perceptive abilities of the patient remain intact.

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Hawking.gif (9539 bytes) In 1999 Russ met the most famous ALS patient in the world, Stephen Hawking. Professor Hawking was giving a speech at the Arie Crown Theatre in Chicago to benefit the Adler Planetarium in April of 1999. Their meeting was photographed for the Les Turner Foundation newsletter.
Hawking speaks via a voice computer, into which he laboriously types the words he wishes to say by clicking a hand-held device. His tracheotomy in the mid-1980s enabled Hawking to breathe during a bout with pneumonia, but it left his vocal chords useless. Despite the long duration of his disease, which the doctors characterize as "a variant of ALS," Hawking is not dependent upon a breathing ventilator.

Ways for us to help fight ALS:

  1. Donating money for research
  2. Volunteering time for fundraising
  3. Helping individual patients and their families.

Money donations can be made by contacting your local ALS Association. Locally in Chicago, the Les Turner ALS Foundation serves as the fundraising arm for ALS research. This office can also give information for volunteers to help the organization and to help individual families.

If your company has a deduction from your regular payroll for the United Way, you can write in "Les Turner ALS Foundation" to specify that your contribution will benefit ALS research.

Adaptive Equipment

If there is a need for it, it can be invented--and perhaps is available right now. In addition to the familiar devices such as wheelchairs and lifts, a variety of alternative equipment is on the market for people who cannot use their hands or legs.

Air switches, for example, turn off and on almost anything you can name -- computers, lights, TV, chairs -- using the power of your blowing breath into a tube. Because Russ' breathing is compromised, he chooses to use a head pointer to work his computer. This device consists of a box which beams an infrared light, which in turn tracks the cursor across the computer screen. The light is reflected back by a small dot that is adhered to the forehead. Russ has this dot attached to his breathing apparatus, which covers the middle of his face.

Russ invented a lifting device for himself that worked better for him than the familiar Hoyer lift. With this apparatus, built from marine hardware and using a hydraulic lift, he was able to still use a regular bed instead of a hospital bed.

More information on adaptive equipment can also be obtained from the Les Turner ALS Foundation web site, or you can search the Web using the keywords "Adaptive Equipment."

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