Friday, November 11, 2011


When I started writing my story I thought it would be easy, and I didn’t anticipate that in the process of digging up the facts I would also relive the emotions of fear and anxiety that I felt at the time.  I have always found it difficult to write about the difficult times, and have always tried to project a positive attitude by balancing the grim truth with pretty photos of happy times or funny clipart pictures.  It took me longer than usual to write this part of my story, and I hacked my brain and my photo files to add some happiness and glamour to the events that took place from April to December 2008.  I simply couldn’t find much.  I hope that this insight into my journey will lead to a better understanding of MSA, other neurodegenerative diseases and the people who battle with these diseases every day.

April 2008.  After the hiking experience (read 'Encounters with lions'), we spent another week in different camps in the Kruger National Park, enjoying early morning game viewing trips, afternoon siestas and relaxing evenings next to the campfire.  Johnny, however, experienced chest pains on more than one occasion whilst unloading our luggage from the car.

Back home I was determined to beat these silly symptoms, and with steely determination I attempted to improve my balance by developing my stabilizer muscles.  Some of my attempts on the bosu probably made me look like a circus lady in training and resulted in me ending up bruised on the studio floor.  Although I was forced to drop some of the more advanced and dangerous activities, I continued to exercise on the treadmill, stepper, cycle and circuit equipment.  I also continued doing pilates and yoga.  However, the stairs up to the gym had become an increasing challenge - I had started holding on tight, concentrating on every step.

June 2008.  After several more incidents of chest pains, Johnny consulted the cardiologist.  He decided to do an angiogram to see whether there were any blocked arteries, and if necessary, to insert stents.  Subsequently, two stents were inserted in what the cardiologist called ‘severely diseased arteries’.  At that time I encouraged him to adopt a healthier lifestyle and we changed our diet to low GI, low fat and high fibre.  This diet helped him to lose weight, but no matter how much of this healthy food I ate, I lost more weight as well.    

My next consultation with the neurologist was in August 2008.  By then I had a slight ‘dead’ sensation in my left foot and lower leg, as well as an ‘inner tremor’ (it feels like you are shaking inside, but it can’t be seen on the outside).  The doctor also noticed reduced arm swing when I walked, which could be another indication of Parkinson’s disease.  He also sent me for neck scans, but the neurosurgeon ruled out the possibility that my symptoms were caused by an old neck injury.  When I voiced my fear of a Parkinson’s diagnosis to the neurologist, he gently assured me that PD is a very treatable disease and nothing to fear nowadays, but to me it remained an unacceptable threat.

By October 2008 the neurologists insisted that we get a second opinion, but before we did that, a lumber punch had to be done to rule out diseases of the spinal column.  The lumber punch is a pain-free procedure nowadays and all went well, but to prevent the dreaded post-lumber punch headache, I had to remain flat on my back for as long as possible after the procedure.  I was discharged from hospital the next morning, only to be re-admitted two days later when I woke up with a scull-splitting headache.  This time I had to stay there for another two days.  The test results came back negative and I had to endure the remark of a friend who said that ‘I should be thankful that there is nothing wrong with me’.

I saw the second neurologist in November and his verdict was that ‘it is most probably a type of disease like Parkinson’s’, and he recommended that I started taking Parkinson’s medication.  The insensitive manner in which he discussed a Parkinson’s patient with dementia with another doctor, whilst drawing pictures of nerves and explaining the workings of neurotransmitters, proved to be too much for me to handle and I cried all the way home.  My neurologist, however, was not yet convinced that is was Parkinson’s disease and disagreed with him.  He felt that medication at that stage would have masked the symptoms, making it more difficult to make a diagnosis.

The year ended with the death of my much-loved mother-in-law, after a short sickbed.  Despite her failing health and Alzheimer’s, her cheerful and loving personality made her very popular with the staff in frail care, as well as with family and friends.  It was a sad Christmas, dominated by funeral arrangements, leaving us with little time to recover after a stressful year, and feeling apprehensive of what might lie ahead.


  1. Sometimes I have no words of encouragement for my friend, like now. Then I can do nothing, but hold your hand. xx

  2. Sometimes all I need is a friend to sit with me and hold my hand. Thank you friend

  3. Thank you for sharing this devastating journey with us in such an open and honest way - Heath is so precious and I so wish we could give it all back to U and Marie, dearest Sonja.

  4. Sonja,

    Each time I read your story it is as if I am reading my own story. It is very heartfelt! I know how hard it is to visit these days but it important to get down on paper. Even though I am far away I am holding your hand as well.
    Hugs, Brenda

  5. Thanks Brenda. Sharing your experience also reassures me that the feelings and emotions I experience are 'normal' for the situation I'm in. Hugs.


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