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JUNE / JULY 2020 • MONTANA SENIOR NEWS ALL ABOUT MONTANA PAGE 9
No Room in Montana for

Huntington’s Disease

been described as having ALS (Lou Gehrig’s led to episodes of anger and non-compli-
BY CHUCK PArrETT disease), Parkinson’s, and Alzheimer’s all at ance directed at Mary.
the same time. The average life span after Twice Mary had to bring him to a
I have a sad but true story about initial onset of HD is usually 10-20 years. hospital in Helena, because his non-com-
a wretched, incurable malady called Because it’s incurable, the grim prognosis pliance threatened the well-being of both
Huntington’s Disease (HD). Thankfully it of 10-20 additional years of a deteriorating Bill and Mary.
is a rare affliction affecting only about one physical and mental condition is particu- When Bill was admitted to the hospital
person in every 10 thousand in the United larly depressing. the second time, the medical staff made
States. So, if you’re like I was until a few So now let me tell you about a married clear to Mary that his stay at the hospital
years ago, and you have only a vague idea couple my wife and I have gotten to know was limited to the 20 days, paid by Medicare
about this disease, let me give you a brief over the past several years. For privacy’s for skilled nursing care. They also made
rundown on its pernicious behavior. Then sake, I’ll give them anonymous names of clear to Mary that, because of his outbursts
you’ll better understand my sad story about Bill and Mary, but everything else I say of anger, they would not release Bill to
a friend trying to find a place to get long- about them and their situation is factual. return home to Mary’s care.
term nursing care. Bill had HD when we met him, and The medical staff’s decision led to Mary’s
HD is an inherited neurological condi- Mary indicated that he was diagnosed with mad scramble, with some help from my wife
tion that causes a progressive breakdown the disease before they were married about and me, to find a nursing home that would
of nerve cells in the brain. Early symptoms 10 years ago. Bill was wheelchair-bound accept Bill on a long-term care basis.
include mood swings and forgetfulness, when we met him, and he had difficulty We found a few close to Helena that seemed
unsteady gait, jerky, involuntary body speaking coherently. agreeable to accepting Bill as a patient, until
movements (chorea), and difficulty in swal- Mary worked at home, so she could each received a medical assessment from the
lowing and speech. provide round-the-clock care for Bill. They hospital. Then each tentative “yes” became
The disease usually strikes in the prime received Social Security disability payments an unequivocal “no.”
of a person’s working life—30s to early for Bill, but Mary’s part-time work at home Finally, just before the 20 days were up,
50s—and its progression, especially with was limited, so total monthly income was a nursing home in Bill’s small home town
regard to chorea and speech difficulties, is always tight. in northeastern Montana agreed to take him
frequently rapid enough that the victim is For the first couple of years we knew in. His family was well known and liked in
totally disabled in just a few years. them, Mary was able to provide care for Bill the community. We later learned that, bless
Although the most striking physical and to manage her job at home, but it was their hearts, that was probably the only
characteristic of HD quite often is the a struggle with no additional at-home care reason this nursing home said yes.
chorea, brain changes also can result in available from any agency. Bill’s depression
dementia. Because of its symptoms, HD has and frustration at his situation eventually CONTINUED ON PAGE 10

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