Hi, I'm Ruth & new to this list as of today.  I'll try to be concise
about my involvement.  My dad was diagnosed with PD in March of 1991.
In the mid-80's, after many doctor's & research, he was diagnosed
with Charcot-Marie Tooth Disease.  Since he was adopted, there was no
family medical history to trace.

Anyway, he went many years & got the PD diagnosis when we saw the
tremors.  He probably had it longer & may have been caught with his
other disease if they had MRI's more readily used.

PD, plus the CMT took it's toll rather quickly.  He didn't have the
best of doctors, but that's a whole other matter.  He retired on disabi-
lity in June of 1993 at the age of 55.  He was just old enough for the
benefit.  By then, he was shuffling along at an almost 90 degree angle
with a cane.

Mid-1994 started several stays in the hospital.  This one was mainly
dehydration.  He had been on so many medicines plus a diueretic (from
years past).  That was when I saw the hallucinations for myself.  I
didn't live with my folks, so I didn't have the daily witnessing.

He was in & out of the hospital.  He was put on an experimental drug
for hallucinating.  That was Clozaril.  Things got way worse after that.
He had reactions to things, but we weren't totally sure of the causes.
But, he started having almost seizure type things.  However, the
doctors did not believe my mother (even though she saw him 24 hours
a day).

Eventually, he was switched to Risperdone, & the hallucinations went
away overnight.  But, these mysterious seizures remained & were
scary.  One happened while I was taking care of him.  Still the doctors
would not listen.  Then, one day, he was in the hosp. for an EEG.  He
had one & almost died from it.  They had him on Dilantin for awhile
before the EEG.  Finally, they put him on Depakene syrup, & he was fine.

I don't remember the actual order of things, my mother knows more.  Dad
was bedridden since the end of 1995, I think.  That's when his stomach
tube was put in.  This was before the switch in seizure medicine.  He
would get so tight, stiff, & unresponsive that we knew a seizure would
be coming.  Then, he'd be relaxed until the cycle started again.  We
were afraid we coudn't give him the medicine, so in went the tube.

He didn't use it fully until Feb., 1996.  That was the last time he
could talk to us, too.  June, 1996, he went on hospice homecare.
He had several infections, but he made it.  By Aug., 1997, his stomach
tube had to be replaced.  He had that almost two years.

By early Sept., his system finally had had enough & started to shut
down.  On Sept 14th, it was over.  We had several days warning from
the nurse.  So, we spent extra time with him.  He had a fever, &
his BP was really low.  On Sept. 14th, he had started to stop breathing.
We were there all afternoon.  Then, we left him for a little bit, &
that was it.  Very peaceful & serene.

So, that's my connection.  Gave my mother info about this list, because
she would have more input from caring for him for so long.


Sincerely,

Ruth Ross  ([log in to unmask])

PS. I'm on digest.  He may have gotten his disease from chemical
exposure.  Worked as a lab tech for 33 years, & in the early days,
they weren't as careful like today.