Hello,
 
My name is Niels Thae Boeske and i am a 28 year old male living in
Amsterdam the Netherlands and working as an engineer at IBM Amsterdam.
 
My mother has been diagnosed as a Parkinson Patient approx 12 years ago.
She is currently 61 years old. Diagnosis was late. She went for a
contrast fluid x-ray in the hospital. This was a bad experience for her
her left arm started to schake heavily when the fluid was injected.
Diagnosis was stress and medication prescription antidepresent. These
where the days that anti depresents where not fashionable so my mother
didn't take them. A year later a friend of the family came up with the
parkinson idea. Two doctors later the diagnosis was confirmed.
She had a terrible time coming to terms with the disease wich got worse
fast.
Four years ago she broke her hip. The operation was done under full
anaestatic. Big mistake the parkinson got worse. Two months later my
father died suddenly of cancer. Since then i am taking care of my mother
with help from my sister. My sister had a relationship with somebody in
spain so she moved two years ago to Barcelona. She resently broke up so
now she is living again with me at my mothers house.
My mother is totally debillitated.I wash, cloth, give her food and drink
She can walk with me although the contractures are getting worse.
I am amazed she still can walk because she sits a lot during the day.
I think it is because she was always into sports, and she had a good
condition.
She can't communicate anymore (at least verbally) I still seem to find
out what she wants. She can't read or watch tv. So she moved mentally in
the twilight show, likes to sleep, still loves opera music humms to the
music. When she has an on period she moves jerkilly and loves to cross
her legs with her arms between. And then ofcourse i have to get her out
of this "knot" 30min later.
She goes to a "day-care center" three times a week. Weekends and tuesday
and thursday she is home. On the week days she is home we have  a nurse
that takes care of here. So this way me and my sister are still able to
work.(and get a carreer going, duuuuuh)
She uses madopar 4 times a day 125mg and two half akineton tablets.
We reduced the medication drastically about two years ago because she
hadvision. Was seeing things and it scared the hell out of here.
 
Last check-up at a specialist in the AMC hostpital here in Amsterdam
was a year ago. I disliked the doctor who is more a researcher and no
bedside manners. During the conversation he mentioned that my mother
didn't have parkinson's but parkinson's like syndrome.
I always suggested to the doctor's i have been with that there must be
different kind of parkinson's because my mother lacked so much of the
"normal" symptoms. She hardly if any had tremors for instance. Mentally
she got worse fast (memory loss, seeing things) wich i hardly read about
in the books in the past.
We haven't been to the specialist since but we do have a good what we
call in the netherlands house doctor a sort of family doctor.
 
 
 
 
 
 
 
Worst thing sofar: the evening she dind't know who i was, i totally
freaked out.
Best things: the nights when i turn her on her other side and she get's
mad a me for waking her up and even mutters some understandable words.
My motto: It hasn't changed my life, this is my life.
Things that help: Wonderfull friends that truly help.And humor.
Things i don't understand: My mothers friends that never come around
anymore. I don't judge them just totally don't understand it.
 
Generally my mother is happy as i see it. Sometimes she cries but don't
we all. Most of the time she is ok. She loves sweets and laughs when you
tickle her feet or when she heres a dirty joke.
 
I hope this mailing list will give me tips and tricks with nursing my
mother and keep in touch with the latest developments and just a general
feeling of not being alone with this.
 
Okay maybe a little bit on the long side this introduction but oh well
ik makes me feel good.
 
Bye Niels Thae Boeske
[log in to unmask]