Sunday, November 20, 2011


The year 2009 will always be remembered as the ‘year of the weddings’, and we had no less than four to look forward to.  First up was an intimate family wedding at the beginning of March, followed by those of the daughter of our friends at the end of March, a work colleague of Johnny in April, and a very good friend of our eldest son in May.  

Listening to all these vows made me realise how lucky I’ve been to get a loving and supportive husband like Johnny.  We celebrated our 35th anniversary in April 2009 and experience has taught me that it takes two committed partners, giving it all they have, all of the time, to make a marriage work. But, with a smile, I remembered that impulsive 19-year-old girl, who was ill-equipped for the serious vows she undertook, and I couldn’t help but think that luck, hardworking angels, God’s blessings, and a lot of patience from Johnny played a roll as well!

By then I had established a good relationship with the neurologist, whom I got to know as a caring, supportive, and dedicated doctor. I could count on him to always return my many calls to report new symptoms, sometimes long after normal working hours.  I also knew him well enough to know that everything he said had to be taken seriously.  By August my muscles were twitching randomly, I had coordination problems and bladder problems, and I was moving slower. There was also a slight loss of feeling in my left leg and I was seeing the physiotherapist regularly for back ache.  Some of these symptoms were not consistent with the suspected Parkinson’s disease and I was sent for more spinal MRI’s, a consultation with a neurosurgeon, as well as with a urologist.  After being cleared by them, he looked me straight in the eyes and said that he hoped that this was not one of those untreatable, incurable conditions, like a Parkinson’s syndrome.  He explained the difference between the two, after which I fled his rooms, for the first time praying for a Parkinson’s disease diagnosis.  A quick browse on the internet revealed a selection of awful diseases that I’ve never heard of and left me wondering if one of them could possibly be the cause of my symptoms.

But there were lots of things to organise and I was kept busy by two projects: holiday planning, at which my friends will tell you I excel, and home renovating.  My loving husband is not exactly known as ‘Mr Fix-it’, so the task of dealing with builders has always fallen on me, and although I thoroughly enjoyed it, I fortunately have friends who excel at this.  So with their help, I planned and got quotations for the remodelling of our kitchen and we set the date for the builder to coincide with the return from our holiday. As an afterthought I got a wheelchair and my friend and I wheel it around to see if this planned kitchen would be wheelchair friendly if necessary. The only problem area would be the small scullery and we decide that if I should be so unlucky to end up in a wheelchair, I should be exempted from washing dishes for the rest of my life!

By then my physical condition no longer allowed our usual 4 x 4, bundu- bashing-camping type of holiday, and we opted for self-catering chalets in the Kgalagadi Park in the arid, but beautiful Kalahari.  As always, we enjoyed our stay in this more intimate park, but during our time there I started getting tremors on the left side of my body.  On our return I consulted the neurologist, who concluded that I now had enough symptoms for a Parkinson’s disease diagnosis.  If it is PD, the prescribed dopamine medication should have a dramatic effect on my symptoms.  I should be able to climb my beloved mountain again. Normal movement and ending the uncertainty of not knowing what the cause of my symptoms were, was an appealing prospect.

I started taking the medication on the same day that the builders moved in with the jackhammers to break out the old kitchen.  During the following chaotic weeks, the neurologist gradually increased the dose, whilst I tried to coordinate the different stages of the renovations and delivery of supplies from the make-do kitchen in the lounge.  I was desperately praying that at some stage the dopamine would reach sufficient levels to allow the promised dramatic improvement to happen.

At the last consultation of the year in November the neurologist was still hopeful that this would happen and he sent me to a neuro-physiotherapist for exercises to improve my balance.  Besides the strengthening exercises, she also recommended walking on the beach with an iPod, hoping that this would improve my uneven gait. 

2009 ended on a disappointing note; except for a beautiful new kitchen, I had achieved nothing but a stiff and aching left hip.


  1. Dearest Sonja,
    Let me say how brave you are reliving all of this, my heart goes out to you. Even though we are on separate continents the similarities are uncanny. I to married a guy 26 years ago that is my soulmate, thank goodness. I to will be going to the fourth wedding at the end of year, we remodeled our kitchen as well and now like you  I have been having a lot of twitching. I wake up daily and think a mistake was made in the diagnosis and then I try to get out of bed and realize that all I read would happen with disease is happening to my body. Unfortunately it gives me some comfort to know there is someone who knows how I feel! Hugs,, Brenda 

  2. My wife was diagnosed with MSA in early 2007 after almost eighteen months of doctors and tests. We were hoping for MS or Parkinsons after reading our options.
    I chronicled our journey at www,

    I wish you well. Stay strong and enjoy all you can.

    Scott Poole

  3. Brenda I often thought that it's all a big mistake (and occasionally still do), but in the end you have to face the facts.

    Scott thanks for sharing, especially MAYBE THIS WILL HELP tips - will file for future use

  4. Popped over at the suggestion of Emilene. She said you are one who both encourages and inspires. So nice to meet you...

  5. Thanks for popping in Amy. Hope to see you here again


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