MSA Glimpses and Highlights of 2018

Sonja and Karin - our outings were the best - even the simplest ones

As 2018 draws to a close
I linger on untold memories of those
Who are no longer here and who dwell in that illusive space
That space that separates the all-consuming present hère
from the mysterious invisible thére.

Sometimes I catch a glimpse of a loving smile
Sometimes a familiar smell wafts around me for a while
Now and then I recognise a laugh in the summer breeze
See a silhouette on a sunbeam amongst the trees.

As 2018 draws to a close
I linger also on the best memories of this year
In Sweden lives the cutest little girl
And a part of me lives in a cheeky red curl.

* In Sweden lives the cutest little girl, and a part of me lives in a cheeky red curl *

To have three great kids is quite bloomin' marvellous,
As teenagers there were times when they just brought out the absolute gremlin in me
And now? I'm just a proud Mom and they often manage to bring out the absolute soppy in me.


My journey with my friend Sonja, (RIPmy Sissi) has left me vulnerable - at times very close to broken
During her illness with MSA, a lót was shared and a lot was said
Yet, a lot still needs to digest, a lót has been placed on a shelf, a lot remains unsaid
Possibly for selfish selfpreservation,
For now, my thoughts and words will stay on a vacation.

Yet, as MSA is never far from my thoughts
Connecting and meeting other patients and their partners was a privilege this year brought
Thank you to each and everyone of you
For reaching out to others despite what you are going through
It helps knowing you're not the only one
You matter, your purpose is still not done
I continue to share your dream to find a cure for MSA too.

It's a privilege to stay in touch with MSA patients / families in South Africa - and really special when I've had the opportunity to meet some of them.  The MSA Awareness Shoe visited me for a while and was taken around to the few of them.  Although it is really a pleasure and a privilege to have done so - at times it can be rather difficult for me to keep a brave face, knowing of the challenges they might also have to face or already endured.  When the families tell me how much a visit or a letter had meant - I just know that it was worth every second, every chosen letter and every single kilometer.

A recent journey to Nelson Mandela Bay (Port Elizabeth) was the furthest trip I've made (706 km) to meet a patient - this time with my husband and willing driver.  How uncanny that one of the patients, Neill Deane, is an old friend who we have lost touch with over the years.  Rather sad that we had to reconnect under such circumstances, but we were so happy to see both him and Karel again, and to meet the other two MSA families.  This was the first time that these families also met each other, and despite the grim subject - it was a really good gathering. Liz has initiated a whatsapp group to which they have added me, and it's so touching to see how they support one another.

Here are just a few images of the year's meetings with MSA patients / families.  (I have many photos of the MSA shoe's journey while it was with me and at some point I'll document it into a reasonable article.)

Meeting MSA friends in Port Elizabeth (Nelson Mandela Bay) - Eastern Cape
fltr Lorraine Lewis (carer to husband Alan who has MSA - he couldn't attend unfortunately)
Liz Horne (has MSA - with husband / carer Emlyn behind her)
and Neill Deane (has MSA) with carer / partner behind him

I have  met Lionel McDonald on a number of occasions.  His wife Reinette died a few weeks prior to this photo.  Reinette was also the first MSA patient that Sonja and I met a few years ago.
  Lionel and daughter Linette supported and attended our annual MSA walks on 3 October
Lionel is pictured here with the MSA Awareness Shoe. Taken in Strand - Western Cape

Peet Keyser (MSA patient) - Hermanus, Western Cape
I've met Peet and his wife and carer Anita now on two occasions.
Here Peet is holding the MSA Awareness shoe

Geraldine Ellwood has MSA and lives in Sir Lowry's Pass with husband Max who has Parkinsons. 

On 3 October a few friends gathered for the annual MSA Walk in the Strand.  Here Karin is pictured with
two very special ladies - Reinette McDonald and Liebet Jooste.
Both girls lost their mums to MSA.  This was the first time they met.

The MSA Shoe and Karin visited Liebet Jooste in Betty's Bay.  The two of us
went to her mom's favorite beach for a bit of reflection and fresh air.

Johnny (Sonja van Rhyn's husband) sold the family home and has moved into a
smaller place.  Their two sons came to help their Dad with the arduous task of
packing up house and memories.  We celebrated new beginnings with a BBQ
at our house and a picture with the shoe.  flr Chris, Loubser and Johnny

Jacqui Deane came for a quick visit when she heard I was going to PE to see
her brother Neill, bringing a few gifts to take along.  

I captured this image at 6.41 pm a little while ago - as the sun was setting.
Protea Cyneroides is the national flower of South Africa - also known as the King Protea
* Courage *
I dedicate this image to those facing the daily challenges of MSA -  I wish you courage for every day

May you have a happy 2019. May the bright moments outshine the dark ones. May each kiss linger and each hug last just that little bit longer. Have more ice cream, and if you can, add a dash of whiskey.

With love
Karin