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;
- Ultimately we hope that awareness will
lead to funding for research to find a cure for the disease.
- 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.
- As patients we feel less hopeless and
helpless when we are actively involved and contributing towards a more
positive outcome for the disease.
- 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 Marié, (Liebet’s mom) to MSA earlier
this year. Through her journey with
Marié 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.
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Sonja, I so enjoyed being able to read about and see photos from the MSA awareness walk in South Africa. It is so impressive to me to see your spirit and the way you rally many individuals to have compassion and participate. Your leadership qualities continue to shine through in spite of the disabilities brought on by MSA. Thank you for your efforts to educated people, and also your desire to encourage fellow patients. I am in your debt! Dan in California, USA
ReplyDeleteDan, the memories of the love I felt on that glorious day will remain with me forever. When I received the diagnosis of this dreadful disease 3 years ago, I did not foresee that my journey would be blessed in so many ways by so many people, including you! Sonja
ReplyDeleteDear Sissi. It is 4 weeks since you've gone. You're gone but you're not you know. Your words and our MSA Walks and the memories will continue to touch people who read this. This blog will continue to bring comfort to patients and their loved ones. Your light will continue to shine. Love, Sissi.
ReplyDelete