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September 2012. Exactly 2 years ago I
was diagnosed with Multiple System Atrophy. Over the last two years we have been forced to
adapt to a life very different from the one we previously lived. A life that excludes us from visiting most of
the homes of our friends and family, allows very little of our previous passions like
travelling, cooking a meal for my family, entertaining friends, pottering in
the garden, working out at the gym, theatre…and the list goes on.
I try to handle all of this with grace, encouraging my friends and family to go on trips, celebrate occasions and attend concerts. They are entitled to live life to its fullest and need not feel guilty because when we are unable to participate. Fortunately we were privileged to travel a lot before MSA struck, and now I love going through our photo library, reminiscing about the many happy trips and sharing my photos with my facebook friends.
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| Happy memories: August 2007, a good year for flowers in the Biedouw valley and Nieuwoudtville |
It
is in my nature to always show my positive side and hide the negative side from
most of those who share my life.
Sometimes this contributes to a false image of me and my abilities. This is my entirely own doing and I confess
that reporting honestly about the ugliness of MSA is hard for me to do. Some brutal honesty is needed to
enable others to truly understand how I live now, and what it takes to get to
that state where I’m dressed, coiffed, with lipstick and a smile, and sitting
opposite them in a coffee shop ready for a chat.
Sometimes
I unexpectedly yearn for the freedom of those days when I went about
unencumbered by the wheelchair. One such
occasion was when I recently saw a photo of foot prints in the sand of our
beach. I didn’t expect the tears that
came when I realised that I, who often walked kilometres in the early morning
on this beach, would never feel the soft sand under my feet again. I’ll have to be content with the beautiful
photo album of our beach made by an acquaintance. That is exactly what I did, for happiness can
not be found anywhere but inside ourselves.
This attitude enabled me to enjoy the rest of her album and appreciate
the fact that she brought the beach to me through her photos.
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| Foot prints in the sand (photo Douwleen Briedenhann) |
When
a MSA friend recently asked me how I cope with the many losses that come with
the disease, I answered that I try to concentrate on what I can do instead of
what I can’t do. That enables me to feel
like a winner instead of a loser.
I’ll always try to be positive, to dig deep for my inherent happiness. But being positive is a transient state not always achievable. I am only human and sometimes things happen that make me forget my own
philosophies. It is not easy to hear friends
planning weekends away and I always feel guilty that my husband is excluded
because of me. I spent days going over the many obstacles of long journeys to destinations not geared for my disabilities, but fail to come up with the
necessary solutions so we can join them. At such times I do feel like a loser.
Last week I once again experienced a sudden, dramatic drop in blood
pressure. I was in the recliner when
images and sounds started fading out and I started fainting. Despite the current cold weather my back was
wet with perspiration and I felt nauseas.
Johnny panicked and rushed off to fetch a damp face cloth to wipe my
face. Once everything came back into
focus, he helped me out of my jacket and attached the blood pressure monitor. The reading was 67/43. Although this sometimes happened in summer,
this was the first time it occurred in winter.
After some thought of what could’ve brought this on, I realised this was
the ugly monster, MSA, showing its fangs:
“Low blood pressure due to
nervous system damage (multiple system atrophy with orthostatic hypotension). This
rare disorder causes progressive damage to the autonomic nervous system, which
controls involuntary functions such as blood pressure, heart rate, breathing
and digestion. Although this condition can be associated with muscle tremors,
slowed movement, problems with coordination and speech, and incontinence, its
main characteristic is severe orthostatic hypotension in combination with very
high blood pressure when lying down.”
To
try and fix every symptom with a pill is not always possible, as medication
always come at a price, not only in monetary value, but most importantly, in
side effects. Finding the
right balance is important. Last year I
was taking so much dopamine that it caused a facial tic (dyskinesia). When the dopamine was reduced that problem
was solved, and as a bonus I now sleep better.
On the other side my movement and the tremors worsened because of this
reduction, and I’m as stiff as a plank during the night. Overall I cope better with things as
they are now. I disregarded the
neurologist suggestion to take halve a tablet of dopamine during the night for
the stiffness, as doing so would awake me completely and I would most probably
not fall asleep again.
When
I recently had the flu and a secondary respiratory track infection, the doctor
firstly prescribed anti-inflammatory painkillers for the fever and aches, and
later cortisone for the persistent cough.
Both of these medications helped for my chronic back pain. As a short term solution these drugs work
wonders, but on the long term I know the side effects would be severe. So for now I have to be satisfied with lying
down when sitting gets to painful, and not to push my body past the point where
I can think of nothing else but the pain.
During
a recent consultation with the neurologist who attends to me, he stressed the
importance of creating awareness for Multiple System Atrophy in South Africa. There are less than 70 neurologists in this
country, all of them booked months ahead, and over worked. Others in the medical and caring profession often
have little or no knowledge of this rare disease. Awareness here can lead to earlier diagnosis,
better treatment, care and understanding of the disease and the patients.
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| Sunset in the Strand (Douwleen Briedenhann) |
Although
we haven’t planned exactly how we are going to do things on 3 October this
year, I am hoping that more people will join us for our walk on MSA DAY. Don’t underestimate the hope you bring by showing
that you care. I am looking forward to you joining me on 3 October, when you can leave your foot prints in the sand of our beach.
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