Huntington's disease taking life from family
Couple holds on to what they have, had
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William R. Webster
PO Box 423
Port Lavaca, Texas, 77979
PORT LAVACA - William Webster and Lynda Kominczak have a lot to be thankful for - especially this Thanksgiving.
That's because it very well may be the young couple's last.
"I'm just happy to have time with her," said Webster, 44, as he fought back tears early Wednesday.
Kominczak, 31, has been in a nursing home for two years and has a limited time left because of Huntington's chorea, a degenerative, inherited disease that slowly deteriorates the nerve cells in the brain.
For two years, life has been put on hold, Webster said.
He resigned from his job as a top-seller of manufactured homes at Palm Harbor and two of their children were adopted, Cheyanne, who is now 7, by Kominczak's mother and the other, Daniel, who is 2, by a man in Houston.
His parents care for Webster's twin girls from another marriage. He lives with his parents, he said.
"That's the one thing I miss the most is having a family together," said Webster, as the 50-degree wind chill dried his tears.
Despite the tears, Webster tries hard not to cry, he said.
He's found peace in his faith as well as the time he does have left to spend with her.
A typical day involves an hour trip to the Yoakum Nursing and Rehab Center and an hour trip back to Port Lavaca.
"She's definitely a fighter, and has more faith than anyone I know," he said.
Andy Joiner, the administrator at the facility, said he and the staff see Webster almost every day.
"He tries to come every day," he said. "That's what's she waiting on, is him."
The staff has taken notice of how touching Webster is in taking care of Kominczak, Joiner added.
With only a $1,400 unemployment check a month, times are definitely hard, Webster said.
Webster expects his unemployment benefits to run out in January, he said.
Kominczak has gone from teaching, feeding and raising their children, to having Webster raise and change her.
Two years ago, Kominczak went to the doctor because she was having mood changes. She was diagnosed with bipolar disorder.
Soon after, doctors found the change in her brain activity was actually because of Huntington's.
Now, she's wheelchair bound, has trouble communicating and controlling purposeless and involuntary motor movements, Webster said.
"She's accepted her demise, she's scared to die, but she's prepared," he said.
The nursing home had a Thanksgiving dinner late last week and Webster and his twins attended.
"She enjoyed having the girls there with her," he said. "We got to have dinner as a family."
That's the closest they will get to celebrating a real Thanksgiving because Kominczak's condition won't allow her to travel long distances because of the amount of care she needs, he said.
It's out of his hands and in the hands' of God now, Webster said.
"What I'm scared of is I have a purpose now in life," he said. "When she's gone and when her light turns out, I don't know what I'm going to do. I'm going to have to find another purpose."
Webster said he is thankful for people who have helped him along the way.
His co-workers at Palm Harbor, U.S. Congressman Ron Paul, State Rep. Geanie Morrison and State Rep. Todd Hunter's offices have helped him understand the financial and medical situation, he said.
Before heading to see Kominczak for the day, Webster flipped through a water-stained and rusted photo album filled with few, but very memorable pictures he holds close to his heart.
"It's the little things in life that matter. Don't take them for granted, because they can be gone like that," Webster said snapping his fingers.
Comments
Call Dr. Harch......
http://www.hbot.com/Harch-Hyperbaric-...
November 27, 2009 at 11:09 a.m.