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.


  1. Dear Sonja,
    I am very honoured that you would dedicate this page to me. Thank you!
    I also know how very hard it is to write of these times, but I think it important to tell our story, so thank you for sharing. We never know why we cross paths with others along journey of life, but I am glad that you crossed mine. If it was not for MSA we never would have had a reason to find each other. For sure, I wish it were not the case but I am very happy to know you are out there. Keep te story and pics coming, they are beautiful!
    Your friend, Brenda

  2. Hi Sonja my name is Bertha,I am Brenda Paquet's sister. I have read you story, you and Brenda are remarkable women to have the courage to put your MSA journey out there for people like me to read. I never even heard of MSA before my sister
    got the horrible disease.At least you can educate people about MSA and maybe that will in turn bring attention and research so a cure can be found. I have sent a prayer your way. Take Care Bertha

  3. Dear Sonja, thanks for sharing your journey with us with all the insights, memories and details - you write beautifully - one gets the feeling that this is only a taste of the anguish, turmoil and sheer hardship experienced as this devastating pathology silently invades your body. You and my friend, Marie, are amazing and it was wonderful meeting you! Love, Nola

  4. Thank you Brenda, Bertha and Nola, for your kind words and your encouragement!

  5. Hi Sonja. My name is Amy and I am 45. I have been sick since 2004. My problems began with heart and bp issues, and I was dx with a form of dysautonomia called POTS and IST, which are related to the heart and bp.Within two years I was having issues with incontienence and muscle rigidity in my low back.That progressed to balance problems and I am now losing weight rapidly.the muscle rigidity has progressed to my legs and I have problems with my fine motor skills. These are just a few of my symptoms.I still walk unassisted, but am always exhausted.Im so happy to find your blog.It makes me feel less alone on this journey that no one else can really understand.Glad to be your facebook friend. Hope you have a good day today.

    1. Hi Amy, going through comments on my blogs I see that yours slipped through the radar and I failed to respond. Sorry about that - I would like to correspond with you. Are you on facebook. Regards, Sonja

  6. I Agree with Nola. You write beautifully. I am privileged knowing you.

  7. Hi Amy, at first I had doubts about writing my story, wondering whether anyone would be interested in reading it. Thank you for your comment. If my story can help just one person, it is worth writing. If it provides some insight into, and understanding of MSA and other similar diseases,it will be a triumph.

  8. Hi there Sonja,
    I am a blogging friend of Emilene's...and decided to pay you a visit. I am so happy to meet you. I visited your own blog, but have difficulty with the Afrikaans, so felt that I'd leave my comment here:
    What a heartfelt, honest and beautiful post you have writte. Congratulations! It is through sharing, caring and uplifting that we all learn from each other(here in cyber-space). It is the honesty of bloggers like yourself that make the world a better place and help others to 'understand'.
    Thank you for sharing your story. I have been enlightened - not even being aware of such a condition.
    As they step at a time! And good luck with creating awareness of this debilitating condition. You are an inspiration.
    Sending lotsaluv to you and wishing you strength and health in the days ahead.

  9. Thank you Maxmom - that is exactly what I'm aiming for; better understanding of this condition :)

  10. would you still like to get healthier ? do not try to understand the condition because you will magnify the problem from another angle. focus on health. see yourself as a shining light. just remember, energy follow thoughts. positive or negative



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