Concha’s mother had Parkinson’s. She was diagnosed at the age of 30 and
underwent psychiatric treatment because Parkinson’s disease was still
unknown at that time and considered to be a mental illness. Concha Vara
was 9 years old at that time and became very familiar with the disease
from childhood. When, at age 44, she began having problems with her
joints and stiffness in her left arm she knew that the symptoms were
similar to those her mother had had. A genetic test confirmed it.
I didn’t have tremors but I did have a lot of stiffness in the
left side of my body. I spent the first three years without being
diagnosed and they were uncertain as to whether it was a brain tumour
or Parkinson's. Finally, in 1994 they told me I was in the first stages
of Parkinson’s. It was Ash Wednesday and I thought I’d rather have a
brain tumour than the same disease my mother had suffered.
Concha
wanted to avoid arousing pity, so she concealed her symptoms for as
long as she could. Her family and friends did not find out for some
time and neither did the people she worked with. Concha had lived in
Madrid for many years, working for a German multinational and in all
her working life she had never once taken sick leave. But as
Parkinson’s developed, so her difficulties at work began to increase.
At
the beginning, I was able to work without any problems because the
disease went unnoticed. I didn’t have tremors and, in general, people
associated Parkinson's with trembling, not with stiffness. Because of
this the head of human resources started objecting to my visiting the
neurologist, because he wouldn't believe I had it. When my condition
worsened I finally had to take sick leave, nine years after the initial
diagnosis. Two years later, having also suffered a stroke, a medical
tribunal granted me full disability status.
Parkinson’s
disease, an ordeal in itself, is aggravated when the person affected
lives alone. This was the case for Concha; her family live in
Cantabria, in Northern Spain, and when the symptoms prevented her from
carrying out her daily tasks, “patience was my ally”.
Parkinson’s
disease has meant a lot of changes in my life. I gave up travelling,
something I enjoyed so much and I gave up doing my hair and nails and
wearing high heels. In short, I stopped going out of the house.
The
side effects of the medication caused her to have involuntary hand
movements, twisting it at times and setting off intense pain and in
2004 her neurologist gave her the option of undergoing surgery for a
unilateral deep brain stimulation implant.
At first,
my family, brothers and sisters weren't happy about me having surgery.
They still remembered our mother’s symptoms and, because I didn’t have
tremors, they thought I was just acting out a fancy. They didn’t
believe I actually needed it. But, what the doctor told them made them
change their minds.
I was operated on in the month
of August and I remember feeling very cold. I was in the operating
theatre for four hours. I have a very positive memory of it because I
was in very high spirits when I was taken in. I knew another person who
had had the operation but it was the opinion of my neurologist, in whom
I have absolute trust that finally made me decide to have it.
Concha
is aware that the surgery does not slow down the progress of
Parkinson’s, and that she speaks in a lower tone of voice than she used
to. Still, she now feels a new woman.
I dress up, I wear makeup, I feel good again. Moving is easy. Every
day that goes by I feel happier about having had the operation. I have
taken up gold leafing and water-colour painting again. I know that were
it not for the operation, I wouldn’t be walking now. You don’t know
what it means to lose your mobility until it’s gone. In my last
check-up, the doctor disconnected the battery and I couldn’t walk. If
he recommends it, I’ll also have surgery on the right side.
Since her operation, her daily dose of pills has been reduced and optimism is on her side.
I
am much more autonomous. I live alone and I have to do everything for
myself every day. I used to have problems getting washed and dressed,
but now I manage much better. It still takes time but I do it by
myself. I would advise everyone who is a candidate for surgery to go
for it, to trust their doctors and have the operation.
She
also calls for more patience from society for people with Parkinson's.
Concha believes it is unfortunate that the disease is associated with
depression because “many people who do not suffer from Parkinson’s also
get depressed”. She has made her friends forget that she has
Parkinson’s and does not want them to be reminded. That way, from time
to time, she can also forget about it herself.
