Here's an article about the Parkinsonian wife of the president of our
local PD support group (Sun Cities Area Parkinsonians and Partners).
He is a retired metalurgist, she a retired teacher. Our group
is the largest in Arizona (110+ families). We meet twice a week,
9 months a year, first in a large general meeting with a guest speaker,
and the following week in two support groups -- Parkinsonians and
care Partners. The paper circulates in Sun City (pop. 40,000
and the newer Sun City West (pop. 20,000) which also has a small
support group for those who can't travel 3 miles to attend our meetings.
We are about 15 miles north-west of downtown Phoenix.
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Paper:   Daily News-Sun
Page:    A3
Issue:   Sat., March 23 and Sun., March 24., 1996
Header:  Disease steals life's spontaneity
Subhead: Retired music teacher modifies environment to cope with
         affliction.
By:      J.J. McCormack, Senior staff writer
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It's not hard to identify the favorite spot in most homes -- an
overstuffed easy chair with telling depressions and newspapers,
magazines and the television remote-control within easy reach.
    Unless you're in Jean Hack's Sun City home.
    Comfort is assigned to an ordinary folding chair adjacent to a
card table piled with reading material.
    Comfort is sitting within arm's reach of an upright piano where,
when her muscles cooperate, Jean plays her favorite tunes.
    Comfort is knowing that a typewriter and desk are a couple of
scoots away.
    Jean calls her environment a station, but such a cold reference
belies the warmth emitted by the paintings and other items reminiscent
of the retired music teacher's hometown of Redford, Ohio.
    She has smaller stations in the living room and in the kitchen. She
goes to them willingly to meditate, write poetry and prose or talk on
the portable phone.
    Sometimes she's stuck in a station for hours, unable to move.
    The stations are places where the 75-year-old Jean, who was
diagnosed with Parkinson's disease 14 years ago, can spend time when
she's "off" of "on" -- when she's frozen of unfrozen.
    "I hate to just sit, but if you have to, you have to," she said.
    Like the more familiar muscle tremors, freezing or "akinasia"
(sic) is a complication of Parkinson's that medication can't  conquer
and Jean can't control. She can control her environment, however.
    Since she never know when a freezing or "off" episode will occur,
Jean gravitates to her in-home stations where she can get stuck without
getting hurt or getting bored.
    "If I get stuck in the kitchen for two or three hours, I can sit
there looking out the window," she said.
    Sometimes during a freeze, Jean uses a walker to navigate to her
bedroom. She lies down to ease the intense feeling of being pulled
down, of weight on her back -- another Parkinson's complication.
    Sometimes, she moves the typewriter to the kitchen window in
anticipation of a freezing episode. The birds and other wildlife
she observes on the other side of the glass become the subjects
of whimsical poems.
    Jean had done a lot of writing in her life, but never for recreation
or as a vehicle for venting frustrations or casting off the blues.
    "I try to look for things to do," she said.
    Writing is something Jean can do frozen of unfrozen. She composes
poems in her head while laying in bed, jotting down notes when a pen
and paper are within reach.
    Writing, said Jean's husband, Ted, has become Jean's "pleasure
pursuit.
    It' something she can do and enjoy."
    When a freeze subsides and Jean is "on" again, she can do anything
a healthy person can. She cooks, does chores and runs errands at a
furious pace, hoping to finish before the next freeze set in.
    A freeze abruptly ended a recent shopping trip.
    "We only had one thing done before we had to come home," Jean said.
    The freezing episodes have greatly curtailed Jean's and Ted's
activities. They still dine out occasionally and attend regular
Parkinson's support group meetings. Sometimes Ted goes out alone, to
a meeting or on a bike ride, leaving Jean in one of her stations.
    "So far, I am able to function alone," she said.
    The Hacks aren't able to plan for daily activities. Spontaneity
rules in the homes of Parkinson's victims.
    Neither to they worry about what the day will bring.
    For her part, Jean doesn't wake up wondering how many freezes
she'll have and how long they'll last.
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Sidebar poem:
                This is a tale of a Sun City Parkinsonian,
                   Unique as is each one who had that affliction.
                She lives with her  husband of years fifty-two,
                   At least once a day, they say "I love you."
                This unique Parkinsonian's newest delight
                   is a spinet piano which she plays every night.
                She had no piano since the move to the West,
                   but having one now makes her feel truly blessed.
                Memories come back with the songs of the past,
                   though the fingers no longer can play very fast.
                The "Minute Waltz" now takes more than a minute,
                   Parkinson's dictates the speed on the spinet.
                                                -- Jean Hack
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Photo caption: Jean and Ted Hack sit in their Sun City home.
Jean suffers from Parkinson's and has found that modifying her
environment helps her deal with the disease.
------------------------------------------------------------------
Sun City, Arizona, is the largest retirement planned community
in the world. It's 7 recreationtal centers is also the largest
in the world. I also claim that there are more services conveniently
and locally available in this community for disabled people than any
other in the country.
    Specifically for PD we have:
     * a 100+ family support group,
     * free transportation for the disabled and caregivers
       via Red Cross vans,
     * 7 rec centers, most with gyms and hot tubs,
     * Handi-Capables, 200 disabled who meet in an large indoor
       heated pool for supervised exercise on Tues and Thurs, and
       outdoor in the summer on Mon, Wed, and Fri.
     * hot lunches at the senior center
     * a branch of InterFaith Services providing social services to
       families and particularly those living alone (home care,
       wake-up tuck-in, counseling, friendly visitor)
     * 30+ support groups including several for caregivers.
     * Many art, sport, and social clubs.
     * Year-round intertianment, much of it free of for rec center
       membership ($100/yr).
     * Food Bank, Food Share, and food salvage.
     * Sunshine Services who lend without charge medical equipment,
       from them we have a wheelchair, hospital bed, bedside commode,
       walker, door pulley exerciser, ...

    Do I sound like the city council?  Well, as a primary caregiver for
my aunt who had PSP -- progressive supranuclear palsy (sort of like
end-stage PD), I have appreciated these facilities and people.
    We use an electric golf cart to get to most activities. Within one
block of us are a supermarket, drug store, bank, post office station,
rec center with library, senior center, thrift shops, beauty shop.
    In the summer she gets daily supervised pool workouts. And we
go to the gym almost daily. Without this town, I would not have been
able to survive as a PCG for almost 3 years now, and she would have
been in a NH years ago.
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Pass this article on to your support groups, etc.


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