MSA MONTH: SOUTH AFRICA’S FIRST FUND RAISING EVENT

Seweweekspoort; from the left, Mari, Charlotte and Gary

 It is most apt that our first fundraising event is happening in March; MSA Month.  My dear friend and fellow patient, Magda Erlank's daughter, Amanda Erlank, has taken the initiative to organise a group of cyclist to dedicate their ride in the annual ARGUS CYCLE TOUR to MSA.  This 109 km tour is the largest timed event of its kind in the world, attracts more than 35 000 cyclist from around the globe, and winds its way around our beautiful Cape Peninsula.  It takes place on the 10^th of March.

Training for a mega event like this requires the discipline to spend many arduous hours in all kinds of weather conditions on their iron horses.  They do this because they can, for us who no longer do it.

Magda, on the right on her recent visit to me, left, with Karin in the middle

Amanda writes that she started cycling 5 years ago for health reasons.  Training for the Argus has transformed her into a healthier and fitter person, physically as well as mentally, and helps her to unwind from daily stress.  Struggling through training is often unpleasant but has taught her much about herself and her inner strength. 

Amanda training on the Dirtopia blue route

When faced with what seem like impossible hills to conquer, thinking of her mother’s impossible journey with MSA gives her the strength to carry on.  When an isolated mountain bike trail takes her to beautiful vistas, she is reminded that her mom can no longer share this with her because of this terrible disease.  Every breathless and torturous step is for her mom, a dynamic woman whom she reckons would have easily beat her in this race ten years ago.

Adri van der Merwe is a contestant from Upington in the beautiful Northern Cape, where hills for training is scarce in the mostly flat landscape.  This seasoned athlete participated in the Ironman race in 2012, swam the Midmar Mile in February, and won a 78 km road race in her hometown last weekend.

Adri on a early morning training session

Adri knows Magda, prays for her daily, so when asked to participate in this race, agreed immediately.  When recently reminded of her pledge she started training more seriously and rises at 5 am to do so in the company of other cyclists from her town.  A lot of sweat and the occasional fall have gone into training for what she regards as a worth while cause.  With her first Argus little more than a week away she is excited and hopes that her training was enough to make it an easy ride.   She is thankful for the privilege of being able to cycle and prays her effort helps our cause.

My therapist, Audrey Mallett, who has done the race many times before, is part of this group as well.  When she popped in today she told me she hasn't had any time to train and intends to wing it on a prayer.  This petite lady is a whole lot tougher than she looks (I have often suffered under her supervision!) and I'm sure she’s quite capable of finishing the race.

Gary and Charlotte taking a break on a recent training session

Zarier Behardien

I hope to bring you more news on these brave cyclists soon:

Amanda Erlank, Abdul Atta, Adri vd Merwe, Anton Titus, Audrey Mallett, Charlotte Kriel, Gary Evans, Maahir Berhardien, Margaretha Steyn, Mari vd Merwe, Michelle van Rooyen, Zarier Behardien.

Thank you Amanda for all the hard work you put in to make this possible. The best of luck and perfect weather on race day to all of you!  Although I can’t be there, I’ll be glued to the TV to cheer for you.  Hopefully those orange shirts will be easy to spot.

Because no research is being done locally, the funds raised were donated to the MSA Trust in UK.

NEUROLOGIST APPOINTMENT

A visit to the neurologist is always an important event for patients with MSA.  In my case this happens once in eight months  For a couple of weeks before the consultation I start getting my questions together, gather information of research and  possible treatments and update my report to him.  What used to be little notes of what I wanted to discuss in the past, has now turned into a little report of  my degeneration since our last consultation and then we discuss what can be done to  help me. 

Firstly the good news; my speech and swallowing abilities remain unaffected and I haven't had any bladder infections so far.  Despite the current hot weather, it’s been months since I've last experienced a fainting episode caused by a drop in blood pressure.

My main area of degeneration has been in my balance, movement and co-ordination.  I tried every possible solution to keep walking, even when it was just a couple of steps with the walker and Johnny holding onto me.  I also tried taking the dopamine earlier to accommodate our early morning walking attempt, but it made no difference.  My feet freeze, I'm unable to control the placement of my left foot, and I have no balance whatsoever.  I can’t be left holding onto the walker for even a couple of seconds.  After a fall in December I realised the risks of trying to walk had become bigger than the benefits.  

I was shocked to observe the deterioration of the co-ordination and speed in my hands when the neurologist did his tests.  This explains why I've been struggling to keep up with things here on the internet.  It takes forever to write the simplest paragraph and being a perfectionist doesn't help. I try to correct every silly little mistake.

Over the last couple of months a new symptom had reared its ugly head; uncontrolled contractures of my left leg, called dystonia. My left shin and foot is permanently bruised from kicking into things and those who help me have to give the kicking leg a wide berth!  Dystonia can be caused by high doses op dopamine.  Dopamine had been the cause of a facial dyskinesia in the past and it disappeared after lowering the dose.  With the dystonia and the fact that the dopamine didn't help me with the walking in mind, he suggested that we slowly start reducing the dose further while keeping a close watch on how this affects me.

The leaning tower of Pisa

No matter how hard I try to straighten up when I sit, I always slump to the one side.  This tilted trunk posture (pisa syndrome) has been the cause of severe and chronic back ache.  Over time I have tried to remedy this by physiotherapy, several types of pain and anti-inflammatory medications, I've tested solid back wheelchairs that can tilt, and the orthotic technician designed and made me special wheelchair cushion.  Lying down has proved to be  the only way to be relieved of this pain, but too much lying down has led to further loss in muscle strength.  The neurologist prescribed anti-inflammatory medication, but also suggested I should consider facet block injections, a procedure where cortisone is injected directly into the problem areas.  I would like to hear if other patients have had success with this treatment for this specific problem.  Getting rid of this pain could improve my quality of life greatly.

He increased the dose of Lyrica for the ever burning pain caused by peripheral neuropathy in my legs and feet.

We also discussed whether intravenous immunoglobulin would be an effective and suitable treatment for MSA.  Although this treatment is used for Guilian-Barré syndrome, it is not a recognised and registered treatment for MSA.  There are some serious risks when taken in high concentrations, like asepticmeningitis and thromboembolic events.  Doctors in S.A. could face serious consequences if they prescribed it for unregistered conditions and things go wrong. The cost of R40 000 plus hospitalisation for a single treatment would not be covered by medical insurance.

I recently read this statement made by a patient on facebook; “Sometimes I do not know how to take all that is going on with my body”.

To me my body is the temporary vehicle for my soul.  Because this is so I am able to look at it objectively, knowing that I will one day leave this rusty, leaky old vessel for something infinitely better.

2 Corinthians 4:16-18

¹⁶ Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. ¹⁷ For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. ¹⁸ So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.