Monday, February 16, 2015


I had to cancel the June appointment with the neurologist because it was no longer possible to transfer from the wheelchair to a car seat. Thankfully we had been able to acquire another vehicle and had it modified by local engineering company, Easy Drive, for direct access with for a wheelchair via ramp. With some branding, the "SISSI BISSI" now also acts as a tool to create awareness for MSA. My new wheelchair can tilt to put me in a more comfortable position when Pisa syndrome causes me to lean like the famous tower. As I now flop forward as well, the name Twin Towers syndrome come to mind.

It was the 12th of December, more than a year since my last appointment, when I was wheeled into the neurologist consulting rooms. Despite the constant degeneration, I had seen the GP only once in 2014 and that for a flu vaccination. I wonder if it's just luck, or due to the expert advice from my health consultant and dear friend, Prof Nola Dippenaar from Health Insight. She  gave me some sound health advice and recommended some supplements, which I take daily without fail. 

When we recently went to the bank to give Johnny power of attorney over my accounts, two bank officials came out to car to check if I was compos mentis, and wanted me to sign the document.  I gave it my best shot, but the result looked like the effort of an inept pre-schooler. I can't write any longer, but thankfully there is technology to help with some of my short comings.

 When my old technology cell phone broke, we replaced it this double duty tablet which I use in a reclined position to write.

It had been two years since I've lost the ability to walk, the cause being cellebelar ataxia. This ataxia has been slowly claiming the use of my hands during the past year. The left hand curls inwards in a spasm like a broken wing, and is practically unusable.  The right hand is still okay. I need more help with everything I do.  Some menial tasks, for example, taking the lid off a lipstick and turning it out, have become impossible, so when you see me dressed up sitting in my chair, know that it takes the best part of two hours and the help of my devoted carers to get me there. A second carer joined the team in December since Johnny has hurt his back. 

I had increasing trouble with constipation, which always results in urinary retention.  The neurologist recommend using gliserine suppositories twice weekly as a regular regime, but a tip from a friend had me try another option; a cocktail of Fybogel and Movicol twice weekly takes care of the problem currently.  For the rest of the week I take Fybogel only.  This solution came by experimenting, and I suspect we'll have to be adjusted the recipe in the future. I wonder at what stage this lack of bowel movement can be called gastroparesis?

I complained about my deteriorating eyesight and dry eyes, and asked for a referral to an opthalmologist. He thought it was time to see a urologist. So off I went with referals to both, but determined to enjoy the holidays with my family first. My son Loubi had taken me to consultation, and my other sonChris and Lukasz were expected soon. 

From left back;Chris,Loubser,Lukasz,and Lilian,with Johnny and me

It was with some trepidation Johnny and I left for the appointment with the urologist, wondering if he would expect me to transfer to his table to be scanned, or expect me to produce a urine sample impromtu. But the most difficult part of that appointment was negotiating wheelchair around the tight corners into his rooms. Because the wheelchair can tilt, he was able to scan both the bladder and the kidneys in the chair. He was happy with both. After questioning on my medications, he suggested I change two; he declared the antidepressant, prescribed by the pain specialist the previous year, unsuitable as it interferes with the working of the smooth bladder muscles. He changed me back to the one I previously used, the one that gives me the appetite of a race horse and makes me sleep like a dog, unfortunately the little movement I have left is that of a sloth.

He was concerned that the medication I take to alleviate incontinence was worsening urinary retention, but with my promise that I'll inform him if it worsens, he prescribed another more suitable medication for incontinence. Frankly at this point I prefer dealing with the retention problem rather than the incontinence one.  Taking ample fluids seem to help. My last fear was dispelled when he handed me a sample jar, saying that patients sometimes have urinary tract infections without any symptoms. The sample was taken to his rooms and test results were negative.

At the opthalmologist Johnny had to help me transfer to his chair with all the opthalmic paraphernalia. I'm sure Bach's music playing in his rooms must have had calming effect on me. Besides needing new spectacles, he said that MSA had affected my eyelids (more ataxia), causing them to wink less often and incomplete, resulting in dry eyes. The layer of tears act as a lens, and without it, not only vision is comprised, but ulcers form on the cornea. He prescribed drops to use 4x per day, and a 'thicker' drop (higher viscosity) for use at bedtime. 

Two weeks later I woke up with a headache and cold fever. After struggling with urinary retention the previous evening, I immediately suspected it was a urinary tract infection. As it was Sunday, I sent Johnny to GP's rooms with a urine sample and my suspicion was confirmed; my first UTÌ since my diagnosis in September 2010.

The maintenance of the temporary vehicle of my soul seem to be a full time job, the dentist is next on my list.

2 Cor 5:1 

For we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. 

Thank you to my dear friend Laurette van der Merwe for capturing the most precious memories in my life. All my love.

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