Copyright 2004 Dayton Newspapers, Inc.
Dayton Daily News (Ohio)
July 4, 2004 Sunday CITY EDITION
SECTION: LIFE; Pg. E3
LENGTH: 827 words
BYLINE: Kevin Lamb
HIGHLIGHT: LIFE'S CHALLENGES
CLAYTON - It's been two years this month since the limp in Shirley Post's left leg became too bad for her to play golf. She had always played in two or three leagues, said her husband Keith. 'She was getting to where she could beat me.'
She didn't know then that her limp was an early symptom of amyotrophic lateral sclerosis, the progressive and fatal neurological disease also named for baseball great Lou Gehrig. Instead of working the kinks out of her golf swing, Shirley now works on the technique for getting off her motorized scooter from the hallway to the bedroom or bathroom.
'We have a little dance we do,' Keith said. 'The scooter won't turn the corner, so she steps with one leg and drags the other one so we can move her about two steps.'
Shirley was always the active one who suggested going for walks. She was her bowling league's secretary for about 25 years.
'For somebody to have been so active and be cut down like that, I think it's quite a shock,' Keith said.
It is, she said in her slow and halting voice. The couple stopped working at Irongate Realtors about a year ago when talking became too difficult, but Keith jokes that she still has enough words to give him orders. When he said she's not able to do much of anything, Shirley said, 'I eat.'
'We couldn't get along without the scooter,' said Keith. It's on loan from the Dayton Area ALS Support Group while Shirley's more nimble, motorized wheelchair is on order. Besides lending supplies large and small, the support group has given the Posts advice on the features a wheelchair should have, Medicare-covered home care they'd have missed and 'little tricks of the trade,' Keith said, to make getting from here to there a little less cumbersome.
'People who are diagnosed aren't usually aware there's a support system for them,' said Karen Wellbaum, who works with the support group because her daughter is a California nurse with several ALS patients. 'It's such a hardship on families. They see a loved one who was alive and vibrant becoming so dependent.'
Shirley, 70, first noticed a problem in March of 2001 when she couldn't wiggle the toes of her left foot, but nobody presumed ALS at first. She had a chiropractor treat her for a pinched nerve. As the weakness lingered, she thought it might have been from the strain of caring for Keith after open-heart surgery, maybe even a small stroke.
By the following March, her foot would flop loosely when she picked up her leg. That was when she started seeing a neurologist. 'Many, many tests' later, she said, she was diagnosed in November 2002.
'We knew about Lou Gehrig, but we didn't know much else,' Keith said, so the couple's three children gathered information from the Internet. ALS strikes about 5,000 Americans a year, paralyzing different parts of the body when the brain and spinal nerve cells controlling voluntary movement degenerate. Without those motor neurons, the muscles they control waste away.
It doesn't affect the mind or five senses, but ALS patients eventually lose all voluntary control of their bodies. There's no cure or even a therapy to contain the disease, although some physical rehabilitation can extend the time a person can function. Most die within five years.
'My husband and I were devastated, and I denied and cried for a month,' Shirley said by
e-mail. 'My family was very supportive, and my husband said, 'We'll deal with it."
The family all lives nearby - daughters Kathi a few blocks away, Sherri in Trotwood, son Steve and the four grandkids in Potsdam. Sherri's getting married next month, and her invitations asked for contributions to the ALS Association of Western Ohio instead of gifts.
'I've learned to live with my condition,' Shirley wrote, 'but get way too emotional when I have to talk about it. My doctor in Columbus has never seen me without tears.'