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Sunday, September 15, 2013

YOU AND YOUR FRIENDS ARE INVITED…

3 October is World MSA (Multiple System Atrophy) Day.  This is the third time we'll be gathering and walking for this cause. Once again we'll accompany Sonja for a walk at Strand Beach from Casa del Sol. (More about MSA further down).  (If you are Facebook - you can indicate on our Event Page if you can join us.  


This is an annual worldwide project to create awareness for MSA. Every kilometre walked for this cause will be accumulated, added to a grand total which will be monitored in Belgium. The goal is to walk around the earth (40,075 kilometres). 



Part of this annual event is to light candles at 8.00 pm until 9.00 pm local time. As candles are lit around the globe, a virtual light wave will be created as it moves from time zone to time zone. We aim to light a candle for everyone who has MSA, as well as for those who have lost their battle in the past. We'll appreciate it if you would participate with that as well and light candles wherever you may be in the evening. Remember to send us photos of your lit candles.



Why are we doing this? Sonja, my dear friend, has Multiple System Atrophy, an incurable and rare disease. What is Multiple System Atrophy?


Karin & Sonja


Multiple System Atrophy (MSA)* is a progressive brain disorder caused by loss of nerve cells in specific areas of the brain. This loss causes problems with movement, balance and autonomic functions of the body. (Autonomic functions are body functions that occur automatically, such as bladder control.)

Detailed Description here:





DETAILS:

There will be two walking categories / groups; a longer as well as a shorter walk. Both groups will gather at the beach front in front of Casa del Sol, Hibernian Towers, Corner of Beach Road & Kruger Street, Strand.


Times:
Group 1: 9.15 - Walk will start promptly at 9.30 – this group will depart from Casa del Sol and walk towards Greenways and back, where they will join Group 2 and walk to the super tube and back. Susan Albertyn will be waiting there to guide you in the right direction for this 6 km walk.



Group 2: 10.00 - walk will start promptly 10.15 – this group (with Karin & Sonja) will wait for group 1 at Casa del Sol, and join them to walk to the super tube and back to cover a distance of 2.2 km.


On our return we will have coffee and light candles at Casa del Sol until 12.00 pm.

Please come. Bring a friend. PLEASE LET US KNOW HOW MANY WILL BE ATTENDING AND INDICATE WHETHER YOU WILL BE DOING THE SHORT WALK (GROUP 2), OR THE LONG WALK (GROUP 1)




Tuesday, September 3, 2013

AN ATTITUDE OF GRATITUDE - LIVING WITH MSA


Another rainy day ahead, the little bit of sky visible from my bed a grim grey, the wind howling dismally around the corners of our home.  August was at the best of times challenge for me - my batteries run on sun power.  It was no longer the best of times and I wondered how I would stay positive in this weather.

As the rain pelted down causing rivers to flood their banks and homes, a facebook friend asked if someone knows the dimensions of the ark - she apparently has a handy husband.  This made me think of how I would stay 'afloat' on this grim day.  No one was likely to come out in this weather for a visit to cheer me up.  I needed to dig deep and change my attitude. 

Our thinking can be so powerful and negative thoughts would defeat me. An attitude of gratitude had to be foremost in my mind. Everyone without exception has something to be grateful for. Although everything in my life is not perfect and I daily battle with the pains and degeneration of MSA, I too have much to be thankful for.  When I started thinking of the things and people I could be thankful for the list grew very long. Here are just a few of them;

Thank you for the many happy days spent with my Sissi Karin on outings to beautiful places.  On sunny days I would often get an unexpected message from her asking if I’d like to go out.  When she gets here we’d have no idea where we would be going.  We’d simply get into the car and allow the magic to happen.






Thank you for all my supportive friends.  Every single one has a special place in my life and heart.  One recently took care of me, while her husband took Johnny on a much needed break. Some sweep in to brighten up my days, leaving yummy surprises in my freezer, and others cook meals for us.  I am very grateful for the friend who relieved me of the stressful burden of filling out tax returns, and the ever willing and handy friend who comes up with solutions for all our practical problems.  Some friends give me spiritual guidance, another offers her photography talents to our awareness campaigns and our family.  A very special lady shares her sound knowledge and advises me on health matters.  There are those very special friends who dedicated their pilgrimage on the Camino de Santiago to me and MSA, and the loyal friends and family who join our walk on MSA day every year.  Some have been with me for a life time, and other friends have come into my life recently.  I cherish my MSA Buddies on facebook, and hold my fellow patients and their families whom I've had the privilege to meet close to my heart.  Friendship is indeed a very precious gift.  

Thank for the beauty therapist, hairdresser, and dental hygienist who come out to my home to groom and treat me here.  I appreciate this privilege.

Thank you for friends and family who celebrated my birthday with me, making the day a joyous and memorable occasion.  Thank you for Karin who did most of the organising and spent the day here to keep me and everyone happy.



I am always grateful for my supportive husband and sons.  They are the centre of my earthly life.

My ark is build by my heavenly Father and stays afloat on gratitude.  With His help I will make it through this day, and all the other difficult days to come.

The bad weather ended with spectacular results; a sprinkling of snow on our beautiful mountains! 




"In the depth of winter I finally learned
that there was in me an invincible summer"
Albert Camus

James 1:17

 Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.