My new friend,
Brenda Paquet, from Ottawa, Ontario, wrote to me recently asking about my
journey with MSA. When did I notice the
first signs? What was the transition like from being fully functional and
totally independent to the wheelchair?
Brenda was diagnosed at an early stage with MSA, at more or less the
same time as me in 2010. She was
formerly a marathon athlete and, like me, had a very active lifestyle.
This is for you
Brenda.
In August 2007 a
family member invited my friend, Susan, and me to join a group of 12 people on
a 5 day hiking trip, the Whale Trail, along the south western coast of the Cape . I
enthusiastically agreed and I had no doubts that I would be able to handle this
physical challenge. My daily fitness
regimen included regular short walks up Helderberg mountain in Somerset West, and
the beach of my hometown, Strand.
The first day of
the hike was mostly steep uphill and whilst everybody was huffing and puffing,
my fitness made this easy going for me.
However, the second day, being mostly downhill towards the coast, left
me with a sharp pain in my left knee and my big toes showing signs of bruising.
From the third day
the route follows the beautiful coastline in the pristine De Hoop nature
reserve and we saw plenty of whales, who visit our coast annually. It also meant constantly hiking up and down
dunes. At that stage I was the only
hiker looking forward and enjoying walking uphill, but dreading the downhill
hikes because of the torturous pain in my knee and toes. By the end of this day my bruised toes were
looking a lot worse and I wrapped them in plasters and vowed not to look at
them until I get home. I knew that if I
abandoned the hike, that at the very least, it would mean that my friend would
have to give it up as well, because we travelled there in her car, and I was
determined not to be the cause of such a disruption.
 |
| The diversity of plant growth in the De Hoop reserve |
My toes were in a
shocking condition when I unwrapped them two days later. A pulpy, purple, swollen mess with the toe
nails barely attached and I immediately went to the doctor, who took one look
at the toes and determined that the nails had to be removed for proper healing without infection, and diagnosed the ‘knee problem’ as iliotibial band
syndrome.
There was only one
problem though. We had the coming
weekend booked to go and see the annual display of spring flowers in the
Nieuwoudtville district and I had shopping and packing to do. The best solution the doctor and me could
come up with was that I finish what needs to be done with the toes in their
current state, and then return for the painful removal procedure. Our friends, Frans and Susan, had serious
doubts whether I would be in any condition to go on this trip the next morning,
but I did not disappoint them and we had a fabulous, flower filled weekend with
me shuffling along.
The ‘knee problem’
disappeared at the cessation of the hike, but a month later I was still
struggling with painful feet and thus, made an appointment with the
physiotherapist. I was hoping that a couple
of sessions with her would speed up my recovery, allowing me to get back to my
exercise program.
It was during one
of these sessions that the physiotherapist, who attends the same gym as me,
knows me well and has often seen me stepping and dancing, told me that she was
worried about me. Besides unexplained
weight loss during the past three years, something in the way I moved was amiss
and she suggested consulting a neurologist.
Although I was at that stage having problems with climbing stairs, I thought
it was her imagination and told her she was fussing over nothing. Once my feet were okay, everything would return to normal.
The feet healed and
I resumed all physical activities, but I started experiencing problems in the
advanced step class and dancing classes.
Balance problems, tripping over the step, the occasional fall,
coordination problems, difficulty with turns.
But I had more
serious problems demanding my immediate attention. My 92 year old mother had taken ill and died
within a week. Although weakened by age,
she was always, in Johnny’s words, “a tough cookie”, and her sudden death left
an unexpected gap in our lives.
When, by January
2008, I became too slow to finish choreography within the time limits of the
music, I had to admit to myself that something was wrong. I have to see a doctor before I fall and
break something. By now the toes on my
left foot were not lying like peas in a pod when I pointed them. At this stage
nobody else could actually see what I was fretting about and a friend said that
the physiotherapist suggestion that something was wrong, was playing tricks with my mind.
The GP was
sufficiently worried by my symptoms to refer me to a neurologist, whom I
consulted in March 2008. He concluded
that, although the symptoms were subtle and well masked by my strength and
fitness, I needed to go for brain and spinal MRI scans, as well as blood
pathology, to eliminate the possibility of tumours etc. All results came back negative and his
comment that it might be the start of something like Parkinson’s disease,
wasn’t taken seriously. We were on our
way to a hiking trip in the Kruger National Park (see my blog called
“Encounters with lions”), and nothing was going to rob me from this experience!
Only in retrospect do I see that there were subtle
signs even before 2007.
2004 – I started losing weight.
2005 – I started Latin solo classes, which went very
well, but I had balance problems when doing travelling turns.
2006 – The dance teacher keeps telling me that my left
leg is never completely stretched. By
the middle of the year I gave up dancing, feeling frustrated, but also because
of a huge growth under my right foot. In
December I take time out to have the growth surgically excised. Christmas saw me on crutches or hopping
along on the left foot, but falling more often than expected from someone who
normally had very good balance.
2007 – I take a long time to completely recover from
the foot operation and blamed struggling to climb stairs on this.
2007 - The underlying weakness in my body could not cope with the extra load of hiking for several hours a day. The arches of my feet are now collapsed and the toes splayed. At the time of the hike that probably caused my toes to slide more forward in my boots, resulting in bruising of the toes.
2007 - The underlying weakness in my body could not cope with the extra load of hiking for several hours a day. The arches of my feet are now collapsed and the toes splayed. At the time of the hike that probably caused my toes to slide more forward in my boots, resulting in bruising of the toes.
