Dear Helen:
I have met so many people with PD that have told me they were hesitant
about telling family, often, their out of town grown children, about their
PD diagnosis.
In my own family, my mother was diagnosed 9 1/2 years ago. Within the year
or so prior to her diagnosis, she had noticed subtle changes, such as
handwriting changes and difficulty with the volume of her voice. I had been
out of state for about a year and a half as a traveling nurse and when I
came home, the changes were very apparent to me. I mentioned it to my
brother who said "Finally, someone else noticed!" When I saw my mother's
hand tremoring for a second day in a row, I mentioned it to her. She
actually sat on her hand to conceal the tremor! She told me she was sure
she had PD (she is a nurse and apparently hit the textbooks).
This was shortly before Christmas and she told me she wanted to get through
the holidays, then she would make an appointment with a neurologist. My
mother walked into that neurologists office and said "I have Parkinson's
disease". My mother's attitude was wonderful and as accepting as could be.
Even though she hadn't worked in nearly 20 years, she decided that part
time work as an RN in a nursing home would help keep her body active and to
her, more importantly, her mind sharp. She decided she did not want tell
her employer that she had PD.
Through all this, she did tell all my siblings, but for years, did not tell
her mother or her two sisters for fear they would "not be able to handle
it" (???) Just a guess, but I think maybe she was in fear of how SHE would
handle their reaction. When she did tell her sisters, they were upset, but
were able to handle it. When my grandmother was down for a winter a few
years ago, it was difficult for my mother to "hide" the symptoms any
longer, so she finally did tell her. As any mother would be upset that
their child had an illness, my grandmother wept and used a phrase I've
herad from her so often; "If it would help, I'd cut off my arm and give it
to you!" My mother, with her sense of humor intact as it's always been,
said "I have enough junk around here! Where would I put your arm?" It
eased an unpleasant moment and life went on!
About that same time, the administration at the ALF where my mother worked
told her that as a service to the community, they wanted to start a PD
support group and asked my mother, as an RN, to be the group coordinator.
It was then she told them she had PD and they were stunned! She was more
fortunate than most as her co-workers were very supportive of her. The
support group was started 5 years ago and goes on strong. My mother can no
longer work due to the progression of PD.
By the way, while I'm bragging about my wonderful and inspirational mother,
I ommitted a very important thing. For those years that my mother did not
"work", she was at home and a caregiver for my brother, who, due to a
spinal cord injury (high school football) 25 years ago, is a quadriplegic.
My brother is paralyzed from the neck down, and due to his easy going
nature he inherited from my mother and due to her loving care all those
years he's done very well. After many months in ICU and rehab hospitals,
my brother went on to college and law school. Even though he was
determined, I believe my mother's name should have been written next to his
on his law school diploma! My mother still is caregiver, but in a less
physical way. My 2 youngest brothers live at home to help with the heavy
physical aspects of his care. She calles herself the "supervsior".
The point of this long story (sorry about that!) is that I think very
often, someone with PD, or any chronic debilitating illness may just be
afraid of how others will react, especially those that are closest to them.
Usually, those that we love will be understanding and supportive of such
illnesses. I think it is important for the person with the illness to have
a say in who is told and who isn't. After all, that is something they can
keep in their control! In each person's own time, they will reveal the
illness to those they think need to know. Not every one feels the need to
keep quiet about PD, but that is a personal choice.
Best wishes,
Bonnie Cunningham
NPF
-------------------
Date: Thu, 29 Oct 1998 12:58:31 EST
From: Helen Jc <[log in to unmask]>
Subject: Re: <No subject given> Newly dx'd PD
To Bonnie and All,
Is it so unusual for a PWP to be reluctant to admit to family that
they
have Parkinson's? I know it was foolish but the only people I admitted it to
for years was my husband of course and a best friend many states away who
is very knowledgeable about neurology. I didn't tell the rest of the family
for
YEARS. Of course, they all knew there was something wrong but since my
mother-in-law had such a terrible time with PD in the mid 60's I felt I was
keeping
them from worrying. Wrong. I was not sleeping at the time and I tried to
convince them it was sleep-deprivation. It was that but of course, much more.
I had a wedding day after reception for both sides of the new
brides family
and the mother of the groom who is a nurse asked my two daughters "how long
has your mother had Parkinson's and what is she taking for it". She did not
know
I had not put that name on it, but I could no longer not give it it's proper
name.
Of course, I know I should have told the family a lot sooner and
saved them
a lot of worry, but that is hindsight. I guess my biggest fear was pity. Is
this
so unusual?
helenjc
