Thursday, October 20, 2011


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.

Thursday, October 6, 2011


As the 3rd of October and MSA AWARENESS DAY drew nearer, Susan (my loyal friend who is caring for me whilst Johnny is away on his travels) and I kept a close eye on the weather forecasts.  This time of the year in the Cape we often have all four seasons within a week, leaving us ladies staring desperately at our wardrobes, wondering what season to dress for.

So the moment we woke up Susan went out to get the newspaper and came back with the good news of clear skies and no wind.  A beautiful morning for our walk!

When we arrived at the starting point, there were already a few people waiting and soon after the numbers increased to a small crowd.  My friend, Laurette, was ready with her camera to record this event and off we went along the beautiful beach of my hometown, Strand.  My friends took turns to push my wheelchair and much too quickly we completed the first half of the walk.

Thanks to Karin’s organisational skills (is there anything she can’t do?), Casa Del Sol opened their doors early for us and we arrived at a well- organised venue for coffee and a chat.  We spent some time there getting to know each other, posing and taking more photos and lighting lots of candles.  I also, very shakily (stress increases my tremors), attempted to read my speech of welcoming and thanking everybody.

Some of the people there have been part of my life for a long time, but I also met a couple of new friends.  My friend, Ed Lunnon and his wife Pera, from Port Elizabeth, also came to support us.  Ed is fighting his own battle with an even rarer neurological disease, CBD (Cortical Basal Degeneration) and I have learnt many lessons from the way he handles his disease.

Karin and Ed 

As I looked around at the faces around me, I realised that during the past year I have gained as much as I have lost.  I saw this group of amazing and caring people around me and I felt surrounded by their love.  Some of them had taken leave from their jobs to be there.  Others have travelled some distance to be there.  All of them cared enough to come and honour me and MSA with their support in this awareness campaign.

My friends and my family you take my breath away and you give me strength.  Thank you for this priceless gift.  I will nurture the memories of this beautiful day forever and will carry it with me through the difficult times ahead.  I am proud of you and privileged to have your support.  This event was organised on short notice, but it gave me great joy to add our, and Namibia’s miles and candles, to those of the world wide campaign.  With your help the first seeds have been sown and who knows what can grow from this by this time next year!

“Thank you Lord for blessing met with so many special people in my life”.
PS:  Thank you to my friends and family who were unable to attend the walk, but supported us walking on their own and/or lighting candles.
Thank you Laurette for the beautiful photos!

Life is not measured by the number of breaths we take but by the moments that take our breath away. 
Hilary Cooper


Saturday, October 1, 2011

2 Days to Walking with Sonja and Karin

Karin blogging here ... 2 days to World MSA Day and I can't wait for Walking a mile with Sonja and friends on Monday.

A few of us will walk from the Putt-Putt course in the Strand to Casa del Sol, where we will have coffee, light a candle and then stroll back.  Distance is 1.2 km and just perfect for a stroll with my friend.  

Friends can take turns to wheel Sonja and no doubt she will be entertained all the way.

Vasbyt Sissi - ons gaan lekker stap. xx

map walk



Gesina Spangenberg, my dear friend in Swakopmund, Namibia, organised a walk there.  Because of work on Monday, they went ahead and at 7.30 this morning they walked 5 km along the beach in the rain.


You are now leading this race, but we are planning to catch up on Monday!


My liewe vriendin, Gesina Spangenberg van Swakopmund, het ‘n stap vir MSA gereël, wat weens almal se werkverpligtinge reeds vanoggend plaas gevind het.

Hulle het vanoggend 7.30 in ‘n motreëntjie 5 km langs die pragtige kus van Swakopmund gestap.


Julle is ons nou voor, maar Maandag gaan ons probeer inhaal!

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