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.

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.

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