Hi Barb Mallut, Don McKinley, Doug McCorkle Bill Heitman, and all,
Barb M, you are right - my PD battle is everyone's - and I'm ready
to have my story told on Oprah, 20 - 20, or Nightly News.
The tide has turned here at the Battlefront. I have been able to
break up the long and trying daily coverage gap from 11 AM to 4PM,
when I have "free" time (as if PD ever lets go ). My NEIGHBOR, Rita, will
help me every day for an hour , at about 2:00, after her son gets home
from work, and even better,
Rita will ALSO cover 5 NIGHTS per week, from 9 - midnight, even in
Maine's WORST, sub-arctic winter gales! Plus, we're already buddies,
because with her diabetes, and my longtime interest in the fascinating
coincidence of Parkinson's in the relatives of individuals with diabetes,
she and I talk all the time about each other's medical conditions.
Anyway, I just got back from HIRING Rita for the State-funded job of
"Personal Care Attendant." She is short on spending money for the gifts
she makes for Christmas (Martha Stewart, look out!). Rita also needs
extra money so that she can hopefully move into the "mother-in-law"
apartment above the garage attached to her son and daughter-in-law's
house.
Don McKinley talked about a decision that would DEVASTATE me, to go to
an "assisted living" facility. Don, it looks like it's all coming
together right here at my little house on Range Street. And this means I
DO NOT HAVE TO GIVE UP MY PD-ADAPTED HOME. God is being so good to me!
And, there's icing on the cake. I walked back across the street,
checked my answering machine, and, lo and behold, my newly elected State
Representative, Democrat Bill Norbert, had called for the 3rd time since
last night. He's the one who wants to make Parkinson's policy a PRIORITY
in the Maine State Legislative session that opens in January. He
provided me with the name and phone number of another potential
caregiver, Cathy, who is interested in helping me.
Next, I need to work on back-up caregivers .I also need to get ready
to interview, and hopefully to attract Deirdre, the student who wants
Saturday work, and some nights, on a regular basis. Saturday is the one
daytime gaping hole in my weekly coverage plan.
Despite the hard work and scary times, like last night when I woke up
with dyskinesia and noone present at 9:10 PM, I am unbelievably better.
The anxiety has vanished, melted away.
Laundry, housecleaning and shopping, and gutters and fallen leaf
clean-up all are behind schedule, but nonetheless, I am confident that I
am on the way to a more normal life again.
The only answer to long-term AT HOME coverage for those of us who are
1) single and 2) well into the stages of PD which require full-scale
battle readiness, is to dig into the trenches and get ready for the a
prolonged counterattack.
Today is Veteran's Day in the USA. Somehow I feel like I just endured
a life and death battle-with PD. Thank goodness, I'll be a survivor of
Battleground Maine! I might need TOOTHPICKS to keep my eyelids open
through supper, but then again, Jennifer Lunden has just arrived for
the evening, and I can finally just sink softly into the couch and dream
of the future again.
IVAN cyberhug for the whoe list i<<<<<<<<<<PDlistmembers>>>>>>>>s
^^^^^^WARM GREETINGS FROM^^^^^^^^^^^^^^^^^
Ivan Suzman 48/12/9.5 [log in to unmask]
Portland, Maine Land of lighthouses 53 deg. F
********************************************************************
On Thu, 12 Nov 1998 00:03:10 -0800 Barbara Mallut
<[log in to unmask]> writes:
>I've been following with awe our List-sib, Ivan, in his struggle to
>get the caregiver assistance he needs in order to maintain his
>independence and continue to remain in his own home while disabled by
>PD.
>
>I'm also awed by the overwhelming virtual world-wide response (30-odd
>nations are represented here on the List) across the miles in order
>to share suggestions, ideas, and loving support to Ivan - if not in
>person, at least via email, Listmail, and telephone. AMAZING!
(SNIPPED)
>
>I'm SO happy to see that there's SOME relief, if not the total relief...
(SNIPPED)
