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

MSA - Regrettably Alive (and not well) in South Africa

MSA - regrettably alive (and not well) in South Africa

There is a castle on a cloud I like to go there in my sleep Aren't any floors for me to sweep Not in my castle on a cloud

Dear MSA
Others may not be so aware
But you and I both know of the journey you dragged me on
the battlefield of your war I became an ill-equipped part of.
 

Dear MSA
Others may not be so aware
We got to know you in stormy seas on a sinking dinghy;
Hovered too many times in deepest valleys of despair,
Squinted our eyes into the darkest of dark skies
Looking farther than the farthest of far
Always searching for the glimmer of that single lonely star
Despite your debilitating incarcerated demeanor
We conquered a few high mountain peaks to where hope stands taller than tall
And you couldn't stop us from watching the magnificent sunrise.


Dear MSA,
Others may not be so aware
and quite honestly, why should they even care?
Attempting to return here to this blog since you took her away have failed abominably
Time after time after each miserable time
The scars you left behind are jagged, revealing too many wounds
leaving memories deeply entombed
The temptation has been great to write just two words
Yes, only two - before pressing 'send'
It was simply
'The End'


Dear MSA
Others may not be so aware
We both also know
That there will be no end
For I've come to know
There's just too many hearts to mend
Your ruthless claim
To selfish fame
filling your victims with ignorance, anger, hate, fear, suffering and pain
and thát is that need to end.

(Copy to Sissi in Heaven)

The Les Miserables classic

Castle on a Cloud sung by 3-year-old Claire Ryann

There is a castle on a cloud I like to go there in my sleep Aren't any floors for me to sweep Not in my castle on a cloud There is a room that's full of toys There are a hundred boys and girls Nobody shouts or talks too loud Not in my castle on a cloud There is a lady all in white Holds me and sings a lullaby She's nice to see and she's soft to touch She says, "Cosette, I love you very much" I know a place where no one's lost I know a place where no one cries Crying at all is not allowed Not in my castle on a cloud

Although I've been absent from this Blog in writing, I am still on a few MSA platforms, the Facebook MSA South Africa page and a few other relevant places.  It is with mixed feelings that I can report that a few more South African MSA Patients and / or caring family members have been in touch with me.  When I hear of the difficulties and challenges that they face on a daily, sometimes hourly basis, I am reminded of the frustration and agony (physically and mentally) that are endured.

On a personal note,  I've been rather at a loss since Sonja died, and have become more withdrawn than I'd like to admit.  Social media can be deceiving and when you post one or two happy pictures, people think 'ag she's fine'.    Grief and mourning is such a complex subject, one which is extremely personal.  In my own experience, I have found that her death has revealed and triggered some other losses I have not yet allowed myself to mourn.

I'm deeply touched at this need of others wanting to interact with me and will continue to engage with MSA Patients and those affected by it.  I've often referred to the good, the bad and the ugly of MSA - I consider this interaction as a really good  one. :)

I'll quote just a few of the notes received from South African patients (or family).


"I'm rambling now because I'm so excited to make contact with you"
"Sorry let me rewind completely and say how sorry I am about losing your sissi last year and thank you for your brave fight against msa xxx"
"I've read your blog all day today as I get the opportunity... Thank you for all the hard work you guys put into it."
"I am feeling so much more calm since making contact with you and reading the blogs "

"Hi Karin how are you , she's not well but i need to ask you have you heard about Oxy treatment regards"
" she started falling a lot this is terrible i am so tired allready.
"She just started with the fits again ,this is now going on for 1 hour"
"The stress is so enormous - I'm constantly getting nose bleeds"
"I'm frightened. Thank you that you are listening
"Is it normal to cry so much".


" There are good days and bad days but as you know it's a case of being constantly aware of changes so that adjustments can be made to make life easier. Thank you for your time and concern"
"Thank you for the support we really appreciate it "

"Deteriorating slowly but still able to cycle on a power assisted mountain bike and swim some lengths in a pool. Both are my answer to depression and feeling sorry for my self."
"Hope you find someone to guide you in compiling a book of Sonja's blog"
"a toss up between MSA and PSP. Diagnosis is such a long process. Slowly loosing walking , balancing ability"
"My greatest pleasure is swimming lengths in a pool. Sorry I am going on a bit but I don't have a " Karin " of my own"

"Dear Karin, My name is ...I found your name after a friend sent me a link to MSA. Thank you for all the information. I received confirmation today that I have MSA."
"All people are special. This THING has made me realise again the value of people. You know, many of my friends don't know how to handle IT, not because they don't care, they just don't know how. I try to make it easier for them by trying to remain positive."
"This thing is bringing me closer to people and if the purpose is for me to make a difference, then I am blessed".
"I'm fine - struggling a bit with my hands but there are people without hands"
"I would like to dedicate my art exhibition to you and Sonja. Sonja as MSA patient and you as a true friend".
"It's been ten years"

"I am in the middle of the Indian Ocean at the moment. I really appreciate your time spent keeping the MSA page alive, it really does help. Unfortunately my wife is not up to meeting you yet"
"It's actually really nice to have someone to talk to who understands."

"I wanted to ask if maybe you found any assistance within South Africa for treatment of the symptoms that are still to come? I work at a private hospital and only one of our Physicians have ever studied further into the condition, so its clear that reaching out to others who have suffered or are sufering is the best support that we can hope for. Thank you so much for reading my message and for all that you are doing to create awareness and eduction around MSA"

"I watched Sonja's page she seemed like a wonderful woman and I would like to say thank you to you and her for helping me deal with my dad's illness
I am so sorry for you loss, just know than you and her helped myself and my sister deal with something that we had no Idea about so thank you for that and sharing it with us, thinking of you and Sonja's family"

To conclude, thank you to all those that are still reading the blog. According to the statistics, the most popular posts on record are:

Neurologist appointment - written by Sonja van Rhyn

Dear Newly Diagnosed Patient - written by Sonja van Rhyn.

The Room of Multiple System Atrophy - written by Karin Holtzhausen

MSA - The Magic in the Little Things - written by Karin Holtzhausen

MSA - The Courage in the face of My Dolly's Fragility - written by Karin Holtzhausen

“Love goes very far beyond the physical person of the beloved. It finds its deepest meaning in his spiritual being, his inner self. Whether or not he is actually present, whether or not he is still alive at all, ceases somehow to be of importance.” 

― Viktor E. Frankl, Man's Search for Meaning

NEXT :  The MSA Shoe alias Tim's Shoe and its visits to South Africa.  

I know a place where no one's lost I know a place where no one cries Crying at all is not allowed Not in my castle on a cloud

 (If this is your first visit to this Blog - welcome - please click here for a bit of background.


by Karin Holtzhausen