Skip to comments.Man from Medina leaves for treatment in China in his battle with Lou Gehrig's disease
Posted on 12/20/2004 7:42:08 AM PST by Born Conservative
John Winchester is running out of time.
The simplest of tasks -- like taking a breath -- is becoming more and more difficult.
The Medina man is literally dying a little more every day.
Amyotrophic lateral sclerosis -- or Lou Gehrig's disease as it is more commonly known -- has already robbed the 36-year-old, once-active former college football player of the use of his legs.
Winchester uses a wheelchair; his arms are heavy and now rest at his side most of the time.
He is forced to rely on others, like his wife, Megan, for help.
When he tries to use his hands -- with his knuckles curved backward and his slender fingers turned inward -- it is difficult for him to even lift a cup to his lips.
= [100.0]So John Winchester is taking a leap of faith today as he boards an airplane at Cleveland Hopkins International Airport to catch a connecting flight for a long trek to China in search of some hope.
There is no known cure for ALS -- an insidious disease that slowly attacks motor neurons in the brain and spinal cord -- but Winchester is joining a growing number of Americans flocking to Beijing for a controversial treatment offered only there using cells from an aborted fetus.
He has to gasp before attempting to string together short staccato words to form the simplest of sentences, explaining that he is not going to China in search of a miracle cure.
He has no illusions of rising from his wheelchair once the fetal cells are inserted through a long needle after a small hole is drilled in his forehead.
Instead he is hopeful the injection of millions of olfactory cells harvested from the nose of an aborted fetus will somehow help his own body regain control of weakened muscles or at least slow the disease.
``We know I can't wait,'' he said. ``I know this is not a sure thing. But I have to try it.
``If I come back halfway better, it will be the best Christmas present I could ever have.''
The decision to embark on the monthlong venture brought with it some family dilemmas -- not the least of which was being away from their two children over the holidays.
Kevin, 10, and Erin, 8, will stay in Medina with their maternal grandparents through late January.
``I just tell the children, `We might have more Christmases together if we have this done,' '' their mother said.
And then there was the ethical conundrum of participating in a procedure that uses cells harvested from a fetus aborted in the second trimester.
There was a time when these devout Catholics would have bristled at such a procedure, but that was before the reality of his illness became clear.
Having been reared in Cleveland-area Catholic schools, Winchester still believes abortion is wrong.
But given that the Chinese government encourages abortion, he says, the fetal cells necessary for this particular procedure are readily available there.
So, he reasons: ``Something good can come from something bad.''
After months of researching ALS and potential treatments on the Internet, his wife said, they came across some remarkable testimonials around June from other sufferers of the disease as well as paraplegics who turned to a Chinese surgeon experimenting with the insertion of fetal cells into his patients to spur the redevelopment of muscles.
Megan Winchester said they were moved by the accounts of ALS sufferers -- some saying they had dramatic improvements in their speech, breathing and movement after receiving injections of the fetal cells.
Seeing no success with treatments offered in the United States, she said, they figure they have nothing to lose.
``Making the decision itself wasn't hard,'' she said.
The couple turned to a retired art dealer from Dodgeville, Wis., who has become the arranger of such trips for the Chinese doctor, neurosurgeon Huang Hongyun.
Stephen Byer -- who says his adult son underwent the treatment and has seen his ALS stabilize -- helps schedule Huang's foreign patients and collects a fee for the $20,000 procedure.
Some medical experts in this country remain skeptical of the treatment because the Rutgers-trained Huang has never conducted clinical studies.
But that said, Byer noted, there are still more than enough people willing to give it a try. He said there are currently 1,200 patients lined up to travel to China through February 2006.
``I'm not saying people should be guinea pigs, but you can only experiment on mice and rats for so long,'' he said. ``There are no guarantees with this. It (success) depends on God or nature.''
There have been instances where some ALS patients have died during the procedure or shortly after in recovery.
But Winchester says he's fully aware of the risks, and is willing to take a chance if it might improve his quality of life.
Since Huang's patients are only given local anesthesia for the procedure, Winchester said he is a bit nervous about being awake in the operating room.
``My biggest worry during surgery is that I will sneeze or laugh,'' he said. ``They are drilling into my head.''
It wasn't that long ago they didn't have many worries.
The two met at Canisius College -- a Jesuit school in Buffalo -- and married a few years after graduation.
They lived first in Denver and later in Kansas City before settling in Medina in 2001 after he worked his way up the management ladder for Yellow Transportation.
It was shortly before their move to Medina that he began noticing symptoms that were later diagnosed as ALS.
He remembers pain in his right hip as he was playing basketball one day and eventually he was tired all the time.
Stairs soon became difficult.
His wife said they used to kid him that he was ``becoming an old man'' who needed exercise.
The last real physical activity he had before they moved from Kansas City to Medina County, she said, was a charity run. His top 10 finish for his age group turned out to be his last great athletic moment. Oddly, he was raising money for sufferers of ALS -- a disease he had never heard of until then.
``How's that for irony?'' she asked.
It was not until April 2001 that a diagnosis confirmed the couple's worst fears.
By March 2002, he walked with a pronounced limp and had to go on disability, leaving his dream job.
``It took everything out of me just to get dressed in the morning and take a shower,'' he said.
Within four months -- in the summer of 2002 -- he began using a cane and switched to a walker by Christmas.
By this past March he was in a wheelchair and now has virtually no motor skills.
Chewing and swallowing has become more difficult; his nightly leg cramps deprive him of sleep, and breathing is so hard that he uses oxygen overnight.
``This last year has been the hardest,'' he said.
As the ailment continues to ravage his body, his wife says they've tried everything from lotions to acupuncture, to experimental drugs.
They've found no cure, he said, but faith has sustained him.
He can no longer attend Mass daily as he could when he still drove, but he said his faith in God has been a constant.
It was about a year ago that he -- along with some of his family and friends -- made a pilgrimage to Medjugorje, a hillside in Bosnia-Herzegovina where daily apparitions of the Virgin Mary are said to occur.
Unlike today's trip to China where he hopes for physical healing, he said the earlier trip was for inner strength.
``It was just something to find peace and build on the faith I already have,'' he said. ``And it did that.''
The trip was also meaningful for those who went along.
Jim Flynn, of Mayfield Heights -- a friend since kindergarten -- made the pilgrimage and helped carry his friend up the rocky hillside to where the apparitions are said to appear.
``John's a tough guy,'' Flynn said. ``He definitely has a strong faith -- I don't know too many people who could have endured some of the stuff he's been through.''
Winchester, the oldest of six siblings, said much of his strength comes from the support of his family.
His father, also named John, along with his youngest sister, Meg, are accompanying the Winchesters on the trip to China -- a trip made possible by fund-raising efforts of family and friends.
Some relatives pooled their frequent flier miles so the couple could upgrade their seats to business class, allowing him more leg room in the airplane.
To help out around the house, two college friends have footed the bill for regular visits by a cleaning service. Others -- including Megan's co-workers at Smythe Cramer where she sells real estate -- have brought meals to the home.
Such assistance, Winchester said, has helped them try to keep life as normal as possible -- particularly for their children,
``I have not let ALS ruin my life,'' he said. ``I have coped the best I can.
``I don't dwell on it or let it affect who I am,'' he said.
But as time passes, he admits that's getting harder to do.
The wheelchair is a daily reminder of his condition.
If this treatment doesn't work, he said, he has already decided not to be hooked up to a ventilator if his breathing becomes more labored.
He explained: ``I just couldn't live like that -- trapped inside my own body.''
I had a friend who died of this disease. It is certainly one of the worst possible things to happen to anyone. It began with weakness in his hands and spread to all of his limbs. It seems to afflict more men than women as MS affects more women than men, although neither is deemed to be sex related. Life expectancy is about 2-5 years and one eventually dies when they are unable to breath. They suffocate. Terrible disease.
One of our dearest friends died of ALS. It's a terrible way to die. She finally choked to death because she couldn't swallow. It is the most debilitating disease I've ever heard of. Everything fails. Her husband had to do everything for her. But she never lost her faith in God and her eyes shone with a brilliant light. She encouraged US when we went to see her.
I'm not sure of embryonic stem cells being good for anything but there is promise with adult stem cells. I hope he makes it.
Does anyone see the image of Christopher Reeve sucking the stem cells out of aborted babies ala South Park?
"They're killing the babies anyway, so why not do something with 'em". God help us.
j/k! I read your about page! ;>)
Well at least he's got the 30% placebo effect going for him. Hope he makes it, but this "treatment" is witch doctoring 101.
I would not go to China for medicine. I have a dear friend here who was a doctor in China. While I think that traditional medicine can be helpful, I find that she places more of her trust in it than western medicine. She is now working in a pharmacy here. She has commented on how many more safeguards the US has in place to prevent errors than China has. And when you consider the difference in our work ethic to theirs, that would give me concern. I too knew of someone with this and I wish him well. I still don't understand though if he doesn't believe in abortion how he could go the country with a state mandate that makes abortion necessary to get what he needs.
Your post deserves a LOL!
The formatting was easier to read than most. Lots of hard returns in there giving the rest of us some space so we don't skip lines.
Check out Born Conservative's about page, esp the part re; the posting nazis. ;>)
1 sentence, 1 paragraph. Oh wait, I think I saw a paragraph that actually had 2 sentences!!!!! :)
He has a pretty commanding picture of George Patton as well.
Damn this water's cold. It's deep, too.....
I find it quite amazing how many former football/baseball players come down with this illness. Looks like a cluster to me; need to look into the pesticides used...some players more susceptible to the toxins of these pesticides...a heavy detox program would be in order here.
To John Winchester
" Good luck and God bless"