María Luisa, 65, was diagnosed with Parkinson’s disease when she was
52. She remembers her first symptoms as a long series of visits to the
doctor, prescribed medication for the menopause, such as infiltrations,
until 13 years ago the cause for the stiffness in her arm, the pain in
her neck and her difficulty in moving was confirmed.
I
have always led an active life. I enjoy dancing, going to the gym,
being out and about, but I had to stop doing all of these because of
the pain. It started with an intense tension in my hand and then
gradually, first my hand and then my whole arm became twisted.
For the three years that she spent visiting one doctor and then the next, María Luisa never had tremors.
When
I was finally diagnosed as having Parkinson’s I cried day and night for
five whole months. I couldn’t face up to it. The doctors wanted to put
me on tranquilisers for my depression but I wouldn’t take them.
María Luisa began her drug treatment and remembers the first year of this new stage in her illness as a good one.
I
used to take the pills I had been prescribed and I felt fine. But after
a year I started getting the same symptoms in my left foot. It twisted
until it was completely bent. It was very painful. I spent two long
years like that and then it spread to my other hand, my mouth and my
eyes.
Born in Melilla, she now lives in Zaragoza, where
her husband is posted. She has found the support she needed to cope
with the distress of living with Parkinson’s in those around her.
The
disease and the pain made me bad tempered and I lost my quality of
life. I am thankful for having the support of my husband and three
children; and my own will, of course. I believe women are
much braver than men. I never lost courage; I have always retained as
much autonomy as the disease has allowed me and I have never let myself
go. I made a point of looking good even on the days when it
was my husband who had to take care of washing me because I wasn’t able
to.
The Zaragoza Parkinson’s Disease Association has been the other key element that has helped her to live with Parkinson’s.
I
didn’t want to go in the beginning because I couldn’t accept that I
have the disease, but a close friend convinced me that I should, so I
joined the group. It has helped me a great deal ever since. I visit the
association daily for my various therapies and I am a member of the
managing board. My husband comes with me every day. He never
leaves me on my own; he waits for me, chats to other people, reads the
newspaper, lends a hand with the taxis and does whatever else needs
doing.
Following 10 years of treatment, the medication
took a long time to take effect, so María Luisa was offered the
possibility of a new treatment method.
My doctor
prescribed an apomorphine pump, but during the two months that I used
it I I didn’t notice any relief. After that, I was given the option of
brain stimulation and I went for it without hesitation. The operation
lasted eight hours and a week later I had the “gadget” fitted. Since
then it has been like being reborn. It hasn’t cured the disease but now
I don’t stumble when I walk. My arm still hurts but this is due to
chronic tendonitis, a result of all the past years and will be eased by
rehabilitation.
María Luisa is very positive about her last year since having the brain stimulation device implanted.
My
life has changed completely. During the four months before I had the
operation I couldn’t even go out of the house. My body was as stiff as
a board and I couldn’t stand being in bed because of the tension which
kept me from turning over. Since the operation I can turn over in bed
as much as I used to, and I have no problem sleeping; it had been years
since I’d last slept the whole night through. Now my feet don’t freeze
at all, I walk like a dream. My handwriting is much improved and I can
sew and cook again. The surgery has allowed me to reduce a lot of the
medication and the stiffness has diminished, although I still have some.
The
worst thing is losing my voice. To me it is a real curse because
talking is something I enjoy immensely and now I find it difficult. I
can make myself understood but I have to make a real effort. My husband
teases me by asking if I’m going to take a vow of silence.
María
Luisa’s joy can be felt through the telephone line. I sense her
intentionally avoiding talking about the many years of living with
Parkinson’s and the difficulties and pain she experienced. Like her
daughter’s wedding, which she attendedbecause “it was my daughter getting married and I couldn’t let her down, but I felt terrible.”Or
living day in and day out with excruciating pain and uncontrolled
movements that sometimes lasted for one week at a time.. If it were up
to her, she would like her death to precede her husband’s, although
these days she hardly thinks about death anymore. María Luisa has a new
horizon.
The doctors tell me that I’ll be as well as I
am now for the next five years, and after that they don’t know which
direction the disease will take. I am aware I am not cured, I have been
“patched up”, but just having a break from the disease, however long or
short, is certainly worth it.
