Dear friends,
DO you experience what I would call "Fear of Freezing"...either mental or
physical freezing up??
Yesterday I went to our new young-onset group in Maine. 4 of us made it.
All of us started battling Parkinson's before 40, and all of us are
seasoned "veterans" of the ordeal..
If iget an appointment with the Clintons NEXT WEEK, this is what I will
describe to them--or to whoever--how 4 young lives are being torn to
pieces...........
A TRAGIC TALE OF FOUR YOUNG MAINERS: FIGHTING THE PD MONSTER
One person is almost in a continuous mental freeze. Vacant stare,
clutches a teddy bear after anxiety attack. Then has short soft bursts of
one-sentence talk. Cannot respond to your questions without great effort
and then is exhausted and eyes shut after a few words. Yet he was a
music teacher!!
At the same time that he tries to talk, his body remains nearly frozen,
like in "Awakenings." I wonder if he's WAY out in space because he's
wrongly medicated, or if the pallidotomies were the cause of his mental
spaciness. He has had 2 pallidotomies. He needs contiinuous care, but
only has neighbors and one friend, it seems. Why has family deserted
him? What is going on?
Second person has horrible continuous dyskinesia. Shoulders wiggle, head
jerks, overmedicates himself because of the Fear of Freezing up ....he
live alone and is trying heroically to keep working.
He is post-pallidotomy. HE hardly sleeps and seems to be unable to
relax.
ME, I drop into deep offs including clenching painful toes, twisting
ankles, but get back up, mercifully, and sometimes function in a
"heavenly" state for several hours.. Wish I could be WARNED of my
sudden, no-warning freeze-ups. Includes mental exhaustion, and i have to
isolate myself. This is VERY upsetting and very scary, especially in the
dark of night.
Also, my eardrums are dystonic, and so sound is VERY painful at times.
Must be the stapedius muscles in the middle ear.
And my eye's irises respond to light too slowly. RIding in a car can be
almost blinding when my eyes "freeze up" and let WAY too much light in.
Need new glasses but Medicaid doesn't cover this! AM i goingto be
blinded???
In my humble opinion, 4th person is doing the best of us all. She has a
loving husband and that makes a HUGE difference. And yet, she has facial
expression on right side of face that worries me...is much more frozen
than her left side of the face. I wonder if this is facial nerve problem
or Parkinson's or what is it? SHe is also bravely still working, despite
it all.
WE all seem to be surrendering, surrendering, then we fight one, then the
MONSTER chews us up.
5th and 6th persons are two women who don't seem to want to go to a
support group--fear rears its ugly head--so they hide themselves.
WHY??????
I cried when I got home-cat had just caught and killed a baby blue-jay.
It was still hot in my palms, butthe poor little bird then went into
rigor mortis and I had to ask a caregiver to help me bury it.
THen I found out from messages on the answering machine that 2 of my
brand-new, part-time caregivers had phoned to QUIT> I went into 4 hours
of crying and toe curls and muscle crmaps-then collapsed into sleep at
830 PM.
THey are both scared of the emotional intensity of being too near to
PD. Makes me just want to hide for a while. BUt then I get anxious and
have to find care--but Medicaid only pays $6.25 per hour,
So I'm continuingly being traumatized..
My partner meanhile is also exhausted-caregiver BURNOUT. He went home to
NEw Jersey to rest with his sister and his dad for ten weeks-til August
15. So the floor has fallen out from under me. And I need inguinal
hernia surgery. Jesus what next??
The support group was a celebration, but it was also very
UNSETTLING...no wonder I can't attend support groups continuously. THEY
are so scary-but if we're not VISIBLE we'll be forgotten.
Financial ruin, caregivers can't care for free, exhaustion, mental
freezeups and total paralysis.
Well the WAR I am fighting is the war on disease. I don't have time for
nuclear wars, and Clinton-bashing.
So Hilary and BIll, can you join us??? PLEASE hurry and unleash the Udall
money and give us a jump-start?????????? WE CAN'T WAIT!!!!!!!!!!
And all of this horrible mess is caused by the PD Monster.
Ivan 48/11
P.S. about the support group....
ALL 4 had very positive attitude--but I was still VERY scared. Hope to
get over it by watering the flowers-Cosmos, African daisies and
California poppies planted. Also need to smell the yellow day-lilies and
fill two birdfeeders.
