From: spielber
To: [log in to unmask]
Date: 01/23/97 20:48:36
Message-Id: <[log in to unmask]>
Subject: Living
X-Mailer: NETCOMplete v3.20, from NETCOM On-Line Communications, Inc.
Hi friends. I have been wanting to write, but since I am a
writer, it is very hard to just chat without trying to win the
Pulitzer prize. There are many times when I feel so isolated.
I'd love your support. I have learned so much from you.
My name is Ruth. I am 53. I was 45 when I was diagnosed. My
daughter was five and my husband was forty-one. I was
terrified. My biggest fear was that I would be a burden to my
husband and child. I was depressed. I read everything I could
about Parkinson. I tried to convince the Neuro that I didn't
have PD. I started on Sinemet. We were living in the
Netherlands. We traveled all over the world Russia, Italy,
France, Greece. I continued to play tennis. I was always
feeling sorry for myself but I realize now that the books I was
reading and the fear of the future were causing me problems. My
life was going just great. I wish I has smiled more.
I was sure that when we moved back to the states, the doctor in
America would find that this was a mistake. We moved to Houston.
Our daughter started kindergarten. We bought our dream house.
I had it all, a handsome husband and the life that I wanted. I
went to the best neurologist, expecting to hear that I did not
have Parkinson. He kept me waiting for two hours and then spent
only two minutes with me. He put me on Permax and charged me
three hundred dollars.
I became determined to not have PD. I took the medicine when I
had a tennis game, aerobics class, or activity with my family. I
tried healing meditations, I read many books. I was hyper. I
changed doctors many times. The worse thing I did was take
valium when the sinimet wore off. I was feeling great or
terrible or drugged.
One day I gave up. I was exhausted I let my husband take control.
He took me to another neurologist. I was given a schedule. My
husband set up a program on the computer. The alarm would go off
and the name of the medicine and the amount to take would be on
the screen. I was taken off valium, and was in bed for over two
months and still not doing well. I could not walk; I was in pain
and felt my life was over. I was afraid that I would have to go
to a nursing home.
One day I looked in the mirror and saw a frail woman with a
crippled body. I looked like the people that I had seen at the
Parkinson support groups. That day I accepted reality, that I
had been acting awful. My family was suffering because I was
being so selfish. My daughter was confused by my changing moods.
I had been protecting her instead of including her. We told her
everything about Parkinson. I began letting her help me by
bringing medicine and helping with chores. She became a
delightful companion. Her sense of humor, her positive attitude,
and the young ideas she brings to my life are my miracle drugs.
I started taking prozac which was an aid in acceptance but the
weight gain was terrible. I take one every other day, and I
exercise everyday with a senior citizen's group. Some of these
ladies are eighty. The exercises keep my muscles toned. I am
able to do everything.
I still worry a lot about my husband, especially when I read one
of those beautiful articles written by a caretaker whose mate has
completely changed. The article always talks about the poor soul
whose life will never be the same because of Parkinson. I feel
guilty enough; I am sorry this happened. But marriage is for
better or worse. These articles give suggestions such as take
time away from your spouse to protect your sanity. It is hard to
have a normal relationship with a person that no longer takes
you seriously, blaming any behavior that is not pleasing to him
on drugs or disease. The truth is we have both changed a great
deal and would be adjusting to mid life problems anyway.
I no longer feel sorry for myself. My housekeeping is sloppy,
but it always was. It is great to have an excuse. My cooking is
only for special occasions. I live one day at a time and when I
look back I am amazed that I have very few bad days.
Ruth
