Friday, October 11, 2013

A CANDLE LOSES NOTHING BY LIGHTING ANOTHER

Last week's walk on MSA (Multiple System Atrophy) DAY 3 October was truly a joyous and blessed occasion, made so by the people who took the time to come out to support us.  I don’t think it was my imagination that the love amongst the group was tangible.

My boys (men) walked down to the beach to join my friend Susan and the first group who did the longer walk, while Lilian helped me to get ready.  Johnny had taken the day off, so we soon followed them to meet the second group at the beach front.

For the first time another patient, Anne Marie Brass from Somerset West, accompanied me on our walk.  What a privilege it was to welcome her, her friends, and her doggy, Fabio, to our third walk.  My friend Laurette, also our official photographer (and my former dance teacher), brought 3 balloons along to celebrate our third year.  I hope we can add many more balloons in the years to come.

It was like a bee hive with everybody chatting happily with friends new and old, and taking photos while we awaited the return of the first group.  Laurette took the group photo before we set off to complete the second leg of our walk in glorious sunny weather.  My friends and family took turns pushing my chair, giving me the chance to chat to various people.

This time Karin not only persuaded Casa del Sol to open their doors early for us, but they also baked us a delicious cake.  Their kind and helpful staff also packed out our candles in the shape of two beautiful hearts.  We appreciate the gracious attitude with which Mike Rich and his staff once again opened their restaurant and their hearts to our cause.  Thank you to all who helped to run this occasion smoothly.

Because my left leg tends to out-perform me when I speak in public, I once again asked my friend Hugh Holtzhausen to read the following on my behalf;

“For the third year we are privileged to reach out and hold hands with others across the globe through this action on international MSA DAY, called; A MILE AND A CANDLE FOR MSA. This affords us an incredible sense of oneness with patients and their families all over the world. 

A warm welcome and thanks to all who came out to support us today.  Today, for the first time, I have the privilege to welcome another patient, Anne Marie Brass here.  She and her daughter, Andrea Ankers, recently made contact with me and paid me a visit. Thank you to her friends who accompanied and made this outing possible for her.  Welcome to Lionel McDonald and his daughter Linette. They represent our other local patient, Reinette McDonald.  Thank you to Paul Barnard and his group of clergyman for blessing us with their support.

With this project we hope to create awareness for this rare and largely unknown disease; MULTIPLE SYSTEM ATROPHY.  A question I am often asked is; “why create awareness for MSA?” In a nutshell;

  1. Ultimately we hope that awareness will lead to funding for research to find a cure for the disease.

  1. I can testify to the lack of knowledge of this disease in the medical and care professions. Awareness and dissemination of information can lead to better service to patients and better understanding and treatment of their unique problems.

  1. As patients we feel less hopeless and helpless when we are actively involved and contributing towards a more positive outcome for the disease.

  1. We also hope that our awareness campaigns will draw the attention of South African patients to join us.  These bonds with other patients and their families strengthen us and enable us to form a more united front. I pray that we will one day be strong enough to form an organisation for the support so desperately needed by MSA patients and their families.

I am very happy to announce that another walk is taking place in Pretoria today.  This was organised by Liebet Jooste, who lost her mom to MSA earlier this year.  Another candle has been lit to help us in our quest to create awareness.

Thank you to Emilene Ferreira, who once again created awareness for us on the Camino in Spain, where she acted as a tour guide for a group.  She only returned yesterday, and is here to support us today.

Without the unfailing support of my family and friends nothing would be possible.  I owe a big thank you to my Sissi Karin who did an excellent job of organising this event.  All the men in my life are here to support me today; thank you Johnny, Loubser, Chris, and Lukasz for making this a very special day for me. Thank you to Susan, Ermanno, and Laurette for their continual support. Thank you to Hugh for reading my speech.

Finally I thank the Lord for giving me all that I have. By His grace I am what I am (1 Cor 15:10), and I do what I do.”

Hugh then introduced my friend, Prof Nola Dippenaar, for a talk.  I am often asked the following questions;

1. Is MSA the same as MS (Multiple Sclerosis)?

2. How does MSA differ from MND? (Motor Neuron Disease – a famous ex rugby player in SA, Joost van der Westhuizen, has this disease).

3.  Why can’t I walk even though I’m not paralyzed?

Nola lost her friend MariĆ©, (Liebet’s mom) to MSA earlier this year.  Through her journey with MariĆ© she witnessed the degeneration caused by the disease first hand.  Professor Nola also has a CV and a list of degrees the length of my arm.  She has been voted lecturer of the year by the medical and dental students of University Pretoria on two occasions, and has delivered many local and overseas papers at various conferences.  She is a personal and corporate health coach, running branches of her business, HEALTH INSIGHT, in Pretoria and Cape Town

She explained the different diseases; MS, MND, and MSA, and my loss of balance and inability to coordinate movement.   I am very thankful for privilege of having her there to share her knowledge with us.

Thereafter Karin and I took the lead in the lighting of the candles, followed by Anne Marie and the rest.  Coffee and cake was enjoyed, and lots of chatting with friends followed. 

That, however, was not yet the end of my MSA day.  Whilst I rested, my sons, Lukasz and Loubser, busied themselves in the kitchen, cooking a delicious dinner. Our friends arrived later, adding their dishes to ours.  

It had become our custom to round up all the candles in our home to light them on the coffee table in our living room.  We remembered all those lost to MSA, as well as those currently battling the disease, in the peaceful ambience of the burning candles.

It was the perfect ending to a perfect day.

Note - the photo's are not necessarily in the ideal order because blogspot is not being very co-operative.  Suitable captions should explain.


Various moments of a special
day captured in a collage
Group 1 getting ready for the 'long' walk
Karin captured Group 1, indluding the dedicated
photographer Laurette carrying 3 red balloons
Group 2 getting ready for the shorter walk
Sonja chatting to the four clergymen from the
Helderberg Congreation -  they joined us for the walk 

Group 1 arrived, catching their breath before
joining us for leg 2 of the walk

Our youngest participant,
Emilene's granddaughter in stroller

Susan's bright purple T shirt says it all

We had coffee and cake


Casa del Sol arranged the candles for our ceremony
in a heart shape

Patricia MacNaught Davis from Helderberg Hospice
with Sonja

Part of the dream

Badged for the occasion

It was such a privilege to have Anne Marie,
also a local MSA patient with us

Anne Marie and her beloved Fabio

Group 2 gathering - waiting for Group 1


Lots of red again!

Marie Anne and her friends joined group 1 for part of the way
and completed the second half with Group 2

Yay! the finishing line for Group 1

Sonja's boys leading the tribe - all smiles

The rest of Group 1 at the 'finishing pole'

Loved this red hat
  
ooo - this could look good in Sissi Karin's hair!

Sonja with Susan, Lionel and Reinette

Chris wheeling his mum with Reinette and Lionel behind
Sonja and Rian Leith
Loubser at the wheel now with Sonja and flanked by Johnny and Karin.  Nobody looked too tired did they?


Nola explained MSA







Listen to our voice!
Watching the Parade with interest

It was a joyful day
Nola Dippenaar and Sonja 
A touching moment - MSA friends
Sonja lighting the first candle



A touching moment - Anne Marie being assisted to light a candle
In Gauteng another walk took place, led by Liebet Jooste
who lost her mum to MSA earlier this year

And so a successful event finished with much chatter and laughter at Casa del Sol 
Until next year - we'll continue to pass on the light



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