Saturday, February 11, 2012

THE DIAGNOSIS (Part 5 of my story)

For the sake of new readers, I want to point out that on the blog  'My MSA Story' (no 1 – 5) appear in reverse order (no 5 – 1) and are interspersed by other posts of current events. In the right margin under 'labels' click on 'My MSA Story' (from 1st symptoms to diagnosis) to gain access to all 5 of them.

The year 2010 started off with us looking forward to our eldest son and his life partner's visit. I also had to endure another batch of MRI scans and visits to specialists that disappointingly, yet again, led nowhere.  The neurologist told me that I was a difficult case and that he had never struggled like that to make a diagnosis.  He then referred me to the professor heading the neurology department at the medical school.

So off we went on our short trip to Herold’s Bay and Oudtshoorn with Loubser and Lukasz.  I was shocked by how bad my balance was when during a walk on the beach the illusion of movement cause by the water under my feet resulted in me toppling over.  Besides that incident, we spent a blissful couple of days lazing around and then went on to game farm outside Oudtshoorn,  where we enjoyed fun-filled visits to the Congo caves, an ostrich farm, an early morning game drive and superb food at Jemima’s.

Back at home we started another renovation project on our home; re-plastering the outside, which was damaged by damp, and painting the exterior as well as the interior.

By the time I got around to consulting the professor in May I was falling more often.  I left our home carefully climbing over building rubble with hubby's help.  After a thorough examination the kind Professor concluded that “it was too soon to tell, but whatever it was would be progressive”.  

Back home I had to deal with a building crew and the chaos that is an inevitable part of living on a work site.  There was also dinner to be cooked...and, and.  

It was only when I went to bed that the full impact of what the professor said hit me.  Whatever it was, it wasn't Parkinson's and my worst what-if nightmares was about to come true.  Fearful of this yet unknown disease that was busy taking over my body, I spent most of the night crying my heart out with Johnny trying to console me.  Life however goes on and I was on my post in the morning to open up for the building/painting crew, albeit tired and with puffy eyes.

On our outings I usually hooked my arm through Johnny's for assistance, but by the middle of 2010 I starting using a walking stick as well.  It also marked the start of very rapid deterioration in my balance and movement.  By the end of June I was fearful of leaving the security of the stair rails in the gym to walk across the open space unassisted towards the apparatus.  I left there one morning knowing that I would never return; the risk of falling there had become too big.

I was told that exercise was the only tool to ward off the weakening  of my muscles, so once home I immediately phoned the biokineticist and organised two assisted sessions per week at their gym.  During the two months there I learned a valuable lesson; to work with what I have rather than what I had.  I needed to be more patient with my changing body.  They also checked my blood pressure before every session and expressed concern because the readings were always extremely low*.  Another concern was that most of the sessions started with discussions of my last fall, where I was experiencing pain and bruising, and how to avoid aggravating the damage.   Nothing however seemed to stop the progression; by the end of July I was falling daily.

During July Johnny had a visit from a Swiss business associate and it was during a supper date with him that I experienced a traumatic event; fainting in the restaurant and having to be carried out*.

I made many desperate calls to the neurologist and he desperately adjusted my medication often, but the falls still increased to sometimes three times a day.  I could not even be trusted to brush my teeth on my own.  When straightening up from the wash basin, I would fall backwards hitting my head against the door frame.  If the phone rang while I was walking I would get such a fright* that I'd fall over.  All this falling left me in such a stressed state that every time I fell asleep I would get a nightmare of falling and would wake up with a jerk.  

By the end of August I was a bruised bundle of nerves, lacking in sleep and appetite. But I can testify that exercise gives you strong bones, for despite the many falls, I never broke anything. For my safety and everybody’s peace of mind, we decided not to tempt fate any further and bought a walker.

On Monday 6th of September 2010 Johnny accompanied me to an appointment with the neurologist expecting no more than the usual; it's to soon to tell.  He however looked me straight in the eyes and told us his final diagnosis was: MULTIPLE SYSTEM ATROPHY.  Johnny and I glanced nervously at each other; we had never heard of this disease.  He continued to explain and answer our questions about this disease.  My eyes brimmed with tears when I told me I was going to lose the use of my legs.  He recommended that we make use of all the help we can get.  We left there in a dazed state with referrals to the occupational therapist and the psychologist.  

Our lives was about to change drastically and I needed to get equipped for life in a wheelchair.  I was too shocked to even cry, and I actually never again cried like after that visit to the professor (there were, and are of course moments of sadness when I shed a tear or two).  Perhaps I instinctively sensed that how react to this news will have an effect on those around me.  This was the moment when I needed to be a big girl and start living what I read in Viktor Frankl's book, 'Man's search for meaning', many years ago;

“Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” 

* Low blood pressure (orthostatic hypotension), I soon discovered, was another MSA symptom.  This often causes fainting. 

* It was only much later that I discovered that this 'exaggerated startle reflex' was a MSA symptom experienced by many other patients.


  1. I don't know what to say ... my heart goes out to you ... my mom was misdiagnosed with Parkinson 18 years ago ... we did not know ... we did not understand ... thank you for giving me an insight on what she was going through ... though painful ... I feel for you ... I thank you and I wish you health and happiness ...

  2. Cara Semplicemente, thanks for reading my story. Sorry to hear about your mom - at that time there was so little knowledge about this disease, but that is why I write - to help others to understand better. Ciao Cipollina (nickname given to me by Italian friend!)

  3. Dearest Sonja, I know only to well how you felt for I am at this stage of life with MSA now. It is very scary! I am still using a walker but have so many frequent falls I feel the MSA cathing me. As morbid as it is, it is still comforting to know someones knows how you feel!
    Hugs, Brenda

  4. I feel for you all. I lost my Dad to MSA 10 years ago now. He was an extremely fit and active man and MSA robbed him of both pride and dignity. On a positive note, I see there seems to have been a burst of activity in the scientific world on Motor Neurone Disease here, a related condition to MSA: (They are making it a key performance indicator to have a new drug treatment within five years.) One can only hope.

  5. Thank you for your comment Martin. Sorry to hear about your Dad. I'll have a look at that website, maybe there is hope! Sonja

  6. Such a frightening story, but when meeting Sonja, all that radiates is positive energy, despite the wheel chair. Amazing Lady

    1. Francine, thank you for your comment and the compliment. Love, Sonja

  7. I can't even begin to imagine the frustration you endured. Your courage encourages others - with our without MSA. Hugs my Sissi. Your light will shine forever. X


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