ALS victim relies on family, friends as disease progresses
By DAWN ZERA Times Leader Correspondent
MOSCOW - Years ago, baseball fan Mike Dutko read a book about Lou Gehrig - the kind-hearted Columbia engineering major who left college to play for the New York Yankees in 1925. In 1939, Gehrig was diagnosed with amyotrophic lateral sclerosis. He died in 1941, about two weeks before what would have been his 38th birthday.
Today the illness is known as Lou Gehrig's disease. And while people have heard of it, most have no idea what it really means.
After he read about Gehrig and the disease, Dutko remarked to his wife Christy that he thought that ALS was the worst disease anyone could have.
``It's a living death,'' Dutko said. ``One researcher called it one of the worst diseases known to man. Your mental function is unimpaired, but you have a ringside seat as the body falls apart.''
Dutko was a pretty good pitcher when young, but he hadn't thrown a ball around for several years before one memorable day in April 2005. That's when he and his brother grabbed their gloves and a hardball and started tossing. The grip did not feel right, but Dutko paid little attention - he was 35, and out of practice.
He woke up one morning that June with severe hand weakness. He grabbed the television remote to turn on the television for his then 4-year-old son Zachary, but could not. He thought little about the random incident.
The next month, his arms started twitching. By Labor Day, the formerly athletic Dutko found he could not play a game of Nerf football. His arms would extend slowly when he tried to make a catch.
While worried, he did not say anything. His wife was pregnant with their second child and he didn't want to worry her. The couple also was excited about purchasing a home in an idyllic country setting.
When they moved to the home that fall, it became more apparent that something was seriously wrong. Dutko dropped heavy items during the move. When he tried to grab boxes, his hands would seem to involuntarily curl up. A doctor told him he might have a pinched nerve.
Once in the house, Mike was the one who got Zachary ready for day care. One morning, the routine became torturous. He worked up a sweat trying to button his own pants. Then, he could not put his son's socks on, or zipper his coat.
At that point, Mike shared his concerns with his wife and parents. He showed them the twitching in his arms, which now took on the appearance of worms crawling under his skin.
The family doctor set up a series of tests. A neurologist who was observing the testing contacted the family doctor and told him his suspicions: ALS.
When the diagnosis finally came in November, Mike - knowing each day was numbered and his functionality was going to be affected - quit his job as a quality assurance manager for a company in Moosic.
Widespread effects
Mike and Christy Dutko have spent most of their lives as a couple. They were high school sweethearts who met at the freshman dance. They graduated from Seton Catholic High School, and Mike earned an engineering degree from Wilkes University. They were married 13 years ago and now have two sons, Zachary, 5, and Michael, five months.
Over the past year, Christy has witnessed the gradual decline in her husband's health. Mike, who always had strong shoulders, has lost 20 pounds - all upper-body muscle. The disease has claimed those muscles; it affects nerve cells in the brain and spinal cord, which eventually leads to nerve death. That in turn renders the muscle useless.
Within months of being diagnosed, Mike could not be left alone. Aside from Christy, Mike's parents, who are in their 50s, are able to provide some care. Other family members have made themselves available.
Mike needs assistance doing almost everything. He can barely move his arms and hands. He has trouble walking and - because his reflexes are slow - sometimes falls. He cannot brace himself with his arms to break the falls. In July, he lost the ability to drive.
The disease is progressive, yet unpredictably so. One person with ALS may first have problems with the legs, others like Mike may see it in the arms.
All parts of the body can be impaired. Mike must speak slowly because his breathing and swallowing have been affected. A cold becomes a nightmare - he can't pull up a blanket, can't clear his throat, can't swallow and feels as if he is choking. Many people with ALS eventually succumb to respiratory failure, because of weakening in the muscles that allow a person to breathe.
ALS is known as a diagnosis of exclusion, which means there is no conclusive test for it. The diagnosis is all done by a process of elimination. This prompts Christy to hold out hope that perhaps it is something else. Perhaps Lyme disease, caught when the couple used to backpack through the woods for days at a time.
``People refuse to believe. They don't want anything bad to happen,'' Mike said.
One fact about ALS is that it is linked to an excess of glutamate. Mike is participating in a clinical trial of an antibiotic that flushes glutamate out of his system, but it is hard to tell if it's helping. He stands to demonstrate how slowly he must walk in order not to fall.
``If the house was on fire, this would be the fastest I could go,'' Mike said, as he moved at a snail's pace.
Help and heartache
ALS devastates the nervous system but it has less effect on its victims' outward appearance. Mike offers an analogy for those who cannot understand why he does not appear ill: ``If you went into a television and took the back off, pulled out the wires, then put the back on, the TV looks fine but does not work. I'm literally being de-wired.''
There are other less-visible effects.
For months while Christy was pregnant, and needed to sleep, Mike sat alone in front of the television flipping channels, afraid to go anywhere alone. He is horrified in winter, because cold temperatures make him frigid. When Christy gave birth, he could not make it to the hospital. He has not been able to hold his new child, but he can make him smile.
As Mike talks, the baby - sitting on Christy's lap - stares intently at his father. Mike turns to his son, smiles, and in an instant the two sets of eyes light up. Both father and son grin as if sharing a secret. Christy's eyes brim with tears.
``This is the worst thing I've had to go through - as my son's muscles and nerves grow, my husband is losing his. I cry all the time,'' Christy said.
Dealing with the disease while having a new baby in the house has been humbling. Christy has had to ask strangers for help. She called new neighbors and asked if they could plow her driveway. She asked someone else to mow the lawn.
Sometimes help arrives unannounced, as with the teenage son of a co-worker who built a handicap-accessible ramp off the house.
``You get tired of asking for help. It's best when someone says `I'll be here, what do you need?' '' Mike said.
He offers advice on how to respond when friends are going through rough times. ``When people get really bad news, they want to talk about it, but don't want to bring it up on their own like a big dark cloud. They want you to bring it up.''
Both Christy and Mike have found it difficult when faced with people who do not understand the seriousness of the disease and what it means for the family.
``I do not want to go through this alone. I want to talk to friends now,'' Mike said. ``This may be it; I live with this sense of urgency.''
That includes a desire to travel. While a trip to visit friends in Seattle is now impossible, the family has visited New York City, where Mike acquiesced to being pushed in a wheelchair for the first time.
A trip to the beach was more problematic as flies - sensing a victim who could not swat them away - were all over Mike. His sensory perception is intact, but he can't slap at feeding mosquitoes or get at a nagging itch on the back of his neck.
The Dutkos are preparing for an uncertain future. They are looking into wheelchair options, and a van to carry one. They have installed voice recognition software on the computer. Christy wants Mike to make a videotape for his children. They talk about writing a living will.
On its Web site, the national ALS Association reports that while no cure or treatment halts or reverses the disease, there are medically documented cases in which the disease has stopped progressing or slowed dramatically.
``You never know,'' Mike said, when asked about the prospects of his ALS no longer progressing. ``You prepare for the worst, but hope for the best.''
* Amyotrophic lateral sclerosis is a progressive disease that attacks nerve cells in the brain and spinal cord, resulting in muscle weakness and atrophy.
* It is not contagious.
* Most people who develop ALS are between the ages of 40 and 70, with 55 the average age at diagnosis.
* About 5,600 people in the United States are diagnosed each year, and about 30,000 in the U.S. have the disease at any time.
* About 50 percent of those with ALS live three or more years after diagnosis; about 20 percent live five years or more; up to 10 percent survive more than ten years, and 5 percent will live 20 years.
* In 1993, a research team identified a defective gene as responsible for many cases of familial ALS, which accounts for up to 10 percent of cases and occurs more than once in a family lineage. However, the most common form of ALS is termed sporadic - with no known genetic link.
Source: ALS Association
-------------------- Some day, this mamma's gonna dance! Posts: 199 | From here | Registered: Apr 2005
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trails
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they have a positive diagnosis of lyme from the past and have been suffering this long without linking the two???
any way to reach them and tell them about the ALS/lyme link?
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