EVERYBODY LOVES A WINNER...

These words from the song ‘Maybe this time’, sang by Liza Minnelli in ‘Cabaret’, made me think of the recent Paralympic Games in London and the many heroes of this glorious event.  All of them competed despite great physical challenges.  Some of them, like Oscar Pistorius, won medals and became world famous, and loved by millions.   

If you’ve been an internet user for a while, you would no doubt have seen video clips of the brave Nic Vujicic, who happily and joyously lives his life without limbs, and inspires others with his talks and books.  He has most certainly earned his place in many hearts all over the world.  

Here in South Africa we also have a much admired Afrikaans speaking radio presenter on radio RSG, Martelize Brink, who, after a viral disease in her teens, lost the use of her legs.  She also acts as inspirational speaker and travels the world despite her physical challenges.  This special lady daily takes her place in our households and our hearts.

I too admire all these challenged athletes and people and spent hours and days watching these winners perform at the Paralympics.  

It would however be unfair to compare Multiple System Atrophy (MSA) patients with these people and have similar expectations of them.  To compete in the different classes at the Paralympic Games, these athletes all had to be assessed, and therefore their conditions had to be stable.  They have had time to adapt to their disabilities, some of them a lifetime, and although it’s challenging, they can progress from there.  MSA is a degenerative disease that continually causes changes in one’s condition as it progresses.  

Another big difference is that these people are all, besides their disabilities, clinically healthy.  MSA is a complicated disease which not only disables the patients, but also leaves them ill.  Patients often need to be hospitalized with bladder and kidney infections, constipation, breathing problems and respiratory infections etc.  For this reason there is no class for athletes with degenerative diseases, like Parkinson’s or MSA, to compete in the Paralympics.

MSA patients daily have to face the devastation caused by the disease.  We continually have to adjust to the loss of ever more of our abilities, like bladder and bowel control, severe problems with swallowing and complete loss of speech, backache, neuralgic pain caused by peripheral neuropathy, and fainting episodes caused by severe drops in blood pressure.

Dear friends I hope you understand that the nature of the beast we are fighting doesn’t always allow us to live up to your expectations, however much we’d like to.

We are facing a fight we cannot win.  There are no medals. 

The MSA community all over the world are filled with supportive people who strive towards a common goal. We stand united in this fight; to create awareness and understanding for the disease and to raise funds for research. 

“God, who foresaw your tribulation, has specially armed you to go through it, not without pain but without stain”. C.S. Lewis

The only real failure is the failure not to try and the measure of success is how we cope with disappointment.  We get up in the morning, we do our best, nothing else matters. From ‘Best Exotic Marigold Hotel’

THE LONG AND THE SHORT OF MSA DAY 2012

This time of the year the weather is unpredictable and, like last year, a close eye was kept on weather reports the week before the walk.  Although the sky was filled with dark clouds on Wednesday morning, Helderberg was clear of clouds, and according to local belief, it would not rain.  I'm happy to report that the locals were right; it didn't rain until much later that day.  

I knew that the hikers who walked the Camino would not be happy to walk 2 kilometres on MSA Day, therefore we had two walks this year; a 6 km as well as a 2 km walk.  My friend, Susan, awaited the arrival of the first group and they departed at 9.30 to walk along the beach-front in the direction of Gordon’s Bay.   

Me and Johnny

My husband, Johnny, took a day’s leave from work to accompany me. On our arrival some friends were already having coffee in the foyer of the Hibernian Towers, and we huddled there for a while to keep out of the wind.  

As I didn’t want to miss the return of the first group, we went out to wait for them.  When they arrived we posed for a group photo before we set off along the beach front towards the water-slide.  I enjoyed chatting to the all the different ‘drivers’ of my wheelchair and the turning point came much too soon. 

Karin, who has the ability to organise an army, had little trouble to persuade Casa del Sol to open their doors earlier than normal to accommodate us. My thanks to Mike Rich and his kind and competent staff who, like last year, were excellent hosts and kept coffees and cappuccino's coming.  When we walked in Susan and her helpers had already lit the 100 candles to create the ambience for a morning filled with love.

When I attempted to make a speech last year, I was out-performed by the tremors in my left leg. This year I wrote the speech, but decided to skip the stress and asked a friend to deliver it for me.  Hugh Holtzhausen did a most excellent job of conveying the following;

“Welcome to the second year of this awareness campaign for MSA.  We are part of the worldwide project ‘WALK A MILE BURN A CANDLE' that is happening around the globe on 3 October.  The campaign is the brainchild of a brave Belgian lady, Ritje Schouppe-Moons, who lost her husband to the disease. This year’s aim is to get enough miles to cover the distance around the globe.

Ritje’s favourite quote is these words by John F Kennedy; “One person can make a difference, and everyone should try.” So my sincerest thanks to all of you who came out today to help us make a difference and achieve our goals. I am aware that some of you have travelled some distance to be here today, I welcome all the newcomers, and I appreciate the loyal support of those who are here for the second time.

Over the past year I have met many other patients through facebook.  I’ve also had the privilege to meet a couple here in South Africa, some of them in person.  One of these patients and her family lives here in the Strand.  Thank you to her husband, Lionel, who joined us today to represent the McDonald family.  We wish you, Reinette and your family strength in your battle with MSA.

This year I have been blessed to be a small part of a great project when my friends walked the Camino in Spain for MSA.  Between the five of them they hiked the total of 3200 km – a huge contribution towards achieving our goal this year.  Three of them came out to do some more walking with us today.  Thank you to Susan Albertyn, Emilene Ferreira and Eddie Waring.  Eddie only recently returned from his extended holiday and this is the first opportunity I have to thank him with a gift. Thank you to my friend, Frans Albertyn, who kindly sponsored this gift for Eddie.

Behind every woman there is a man…as well as a couple of women!  Thank you to my dear husband, Johnny, for his loyal and patient support.  I am happy that he could spend the day with me.

Thank you to my loyal and dedicated friends, Karin and Susan, without whose help I would be lost. They helped me to organise this event, and behind the scenes they also smooth over many of the rough edges in my life.  And believe me, with MSA there’s plenty of rough edges!  Everything I do is made possible for me by the framework of supportive love formed by my husband, family and friends.

Ermanno, Elize, Karin Susan, Annemarie

Laurette I greatly appreciate your willingness to always photograph all the happenings in my life.  I am very proud of the professional appearance your beautiful photos lend to my blog and facebook pages.

Me and Laurette (photo Bev Simpson Hurst)

I’m excited to tell you about the first fundraising for MSA research next year.  Amanda Erlank, the daughter of MSA patient, Magda Erlank, is organising a group of cyclist to participate in the Argus cycle tour in March.  Please share this news with your cycling friends and have them contact us for the details.

Meeting other patients also made me more aware of their daily battle with the disease.  For their sakes, and with your help, I have to persevere in creating awareness and raising funds until a cure is found. 

My thanks to the Lord for the strength and courage he gives me daily, and for blessing me with all of you who support me in this dream…to find a cure for MSA.

One last request; please take one of our flyers, share it with a friend in the coming week, tell somebody about MSA, so we can double the amount of people reached by this awareness campaign.” 

After Hugh’s speech Karin Holtzhausen took it upon herself to convey the realities of dealing with MSA in my life, by reading her written explanation to someone else.  My dear friend needed a couple of tissues to get her through that speech, and her words deeply touched others as well.  One such person afterwards commented that she had no idea that this was what life is like for me now.  I find it difficult to tell people about the exact impact of MSA without letting it sound like a pity party and thus I'm thankful to her for handling this with such sensitivity.  Not having the necessary knowledge of my capabilities, often leads to others having expectations that I can no longer fulfil.

Coffee was served while we chatted away and strengthened the bonds of friendships. 

Early evening Johnny lit the fire for a braai (South African barbecue) and my friends joined us for the ‘lighting of the candles’ ceremony.  I could never resist candles and candle holders, and through the years have acquired quite a collection.  When Karin and Susan gathered them from all over my house, even I was amazed.  Several attempts to count them resulted in different totals (too much wine?!), but in the end we agreed that it was somewhere between 50 – 60 candles.

‘A candle loses none of its brightness when lighting another candle’

That amount of candles, when lit, created a sacred ambience and I spent a quiet moment thinking of my friends who are battling this disease, as well as those families who have lost their loved ones to MSA.

MSA Day was busy, and, although it left me physically tired, I was filled with hope by the supportive love of family, friends, and now also friends of friends.  May the little fire, started by us last year, be blessed and continue to grow in the years to come.

Thank you to Laurette van der Merwe and Bev Simpson Hurst for the photography