Sunday, December 30, 2018

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

Thursday, August 16, 2018

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

“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.” 

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

Tuesday, March 21, 2017


Dear Sissi Sonja

In the early hours of 14 March 2017
You were released into the Heavenly Realm
Where you will forever dance and be free

Rest in Peace
I will miss you

You will be gone
but you will forever dwell in my heart
In the morning, evening and noon
From north to south
east to west
and a few times around the moon

Trough all the seasons
summer, winter spring and fall
you will be there
through them all.

Your Sissi.

Tuesday, February 21, 2017

Sissi, Tell Me, Where Is It That You Go?

Should this be your first visit to our blog - please head over here for a brief summary.

Dear Sissi Sonja,

'Oh, hello Dolly, well, hello Dolly
It's so nice to have you back where you belong
You're lookin' swell, Dolly, I can tell, Dolly
You're still glowin', you're still crowin', you're still goin' strong'

You twitch your little twitch when you hear my voice
And you mutter your muttering little mutter
You open your eyes a little
I crank up the volume when I holler
'you're looking swell Dolly, I can tell Dolly'
 swinging my arms wide
when I do a really inelegant twirl
for my mostly sleeping beauty girl.

For a moment I know that you know that I am there
You wait for my smudgy red kisses - I swear
I tell you I missed you so and love you
Your eyes tell me you do too
For a little while we briefly connect
Sometimes for a minute
Sometimes maybe five
before you drift off again
into that mysterious space.

I miss you
         I miss you
                 I miss you so
although you are still  here
You are not
 my Sissi, my dearest dear
Tell  me, where is it that you go
when you keep drifting to that distant place.

There is still so much I want to say
Each and every single day.

Don't you think its bloody marvelous
that friends bring you a cooked meal - every day?
I think its simply fabulous.
Do you like the curtains we put up for you?
And all the pictures on your walls where you spend your days?
Did you see the Impatience flowering near the door?

I've become a Farmor - to the sweetest liten flicka
You stared so long at that darling little picture
And grinned a muttering grin
at my gaudy bright pink earrings.

My Sissi - my dearest dear
If only you could tell me - let me hear
There must be something
something else
that I can still do?

I love you,
Sissi Karin.

Dat ik je mis - Maaike Ouboter

Monday, January 9, 2017


New Profile on the Facebook MSA Page
With a record of almost 10 000 visitors in the past month  - I reckoned that it was time to fluff and primp up the Blog as well as our Facebook Page  as a thank you to everyone who has paid us a visit.  It's taken days to tweak and figure how to make everything fit well into the new fluffed up design but it's been quite a lot of fun.  I hope you like it. :)

A side column was added to the left as well as various images.  Each picture takes you to a link when you click on it.  Most of the videos on this blog,as well as one of South Africa are also included in the left side bar 

If this is your first visit to MSA in South Africa with Sonja - please head over here for a brief summary.

Multiple System Atrophy is a conniving and devious illness with curve balls when you least expect it. The amount of visitors here is an indication of how many people are out there grasping for something - something to try make sense of its wicked ways.  

We've befriended (especially Sonja when she was stronger) a number of patients and their families over the years - some of them since left us.  Its heartwarming to see patients and families draw strength from each other and encouraging one another.  Perhaps this is one of the reasons that people visit here - and hopefully find some comfort in reading Sonja's journey with Multiple System Atrophy. I hope so.  It has been and still is the most extraordinary journey.    

There are a multitude of factual platforms for MSA - each one dedicated to their cause. Their relentless research is observed hawk-eyed - in the hope of the magical cure.  We share the research and their findings on our Facebook Page and have built quite a  number of informative links under the heading What is MSA

In South Africa Multiple System Atrophy is still a bit of an alien and hardly heard of.  If you are a newly diagnosed patient, please read this article written by Sonja in 2013   Looking back there is such profound advice with amazing insight.  I quote an extract:

"Being a fiercely independent person before, accepting the help from others was very difficult initially.  I have since learnt the valuable lesson that in accepting help you give a gift to the giver.  Don’t underestimate the value this can add to the lives of others, and the new depth in friendships/relationships this can lead to.  In turn, reaching out to fellow patients in their darkest hours has added value to my life"

There has been such a touching response to my 'letters' that I write to Sonja on Facebook, that I will post the latest one here.  Thank you to all of you who have left encouraging messages  I've read them all to Sonja.


Hej Sissi Sonja
It's been a few days since my last visit
And I know;
        that you know; 
 that I've written another blogpost again.
(2016 The Year MSA came like a Thief in the Night)

 And I know,
that you know,
 that I know,
 that you're waiting for me 
to come read it to you

Because lately, 
you cannot read it yourself anymore
the words swim all over the screen before they simply just 
I'll glue on my armor of inner strength
fluff up my uncontrolled hair
Put on some red red lipstick
And soon I'll be there.

I'll be all cheerful 
And genuinely happy to see you 
I'll start singing Hallo Dolly as always
the moment I enter the hallway.

But just this once
let me tell you,
there are some moments these days
That I feel a bit like 
hollering and screaming.

"And I scream from the top of my lungs
What's going on?
And I say, hey yeah yeah, hey yeah yeah
I said hey, what's going on"
"Twenty-five years and my life is still
Trying to get that great big hill of hope
For a destination
I realized quickly when I knew I should
That the world was made up of this brotherhood of man
For whatever that means
And so I cry sometimes
When I'm lying in bed Just to get it all out
What's in my head
And I, I am feeling a little peculiar
And so I wake in the morning
And I step outside
And I take a deep breath and I get real high
And I scream from the top of my lungs
What's going on?
And I say, hey yeah yeah, hey yeah yeah
I said hey, what's going on?
And I say, hey yeah yeah, hey yeah yeah
I said hey, what's going on?
oh, oh oh
oh, oh oh
And I try, oh my god do I try
I try all the time, in this institution
And I pray, oh my god do I pray
I pray every single day

Well I went to visit my Sissi and I read her the latest blog (the one just before this one) and then I read her what I wrote here above - on Facebook.  Then in conclusion I wrote the piece below:

 "Its a stunning song especially through earphones. Well I've just got back from another longish visit and I read her the blog and told her how many people had read from all over the world. And then I read her what I wrote here and played the song as loud as my little Samsung's speakers would allow and squeezed her hands as I yelled along ... yeah yeah yeah... I said hey, what's going on?"

Thanks for visiting -may I encourage you to leave us a comment before leaving.

ps by sharing this blog you will become part of creating awareness for MSA and play a roll in sharing our dream - to find a cure for Multiple System Atrophy.

Written by Karin Holtzhausen

Tuesday, January 3, 2017

2016 - The Year MSA Came Like a Thief in the Night

Should this be your first visit to our blog - please go to this link for a brief summary.

"Sometimes I wish I was a genie
and could hold time in a bottle
The road's getting bumpy and dark
But I'll keep looking and finding moments of spark

Last night I visited again
and sat next to you for quite a while 
Held your hand
Touched up your lipstick, powdered the shine your face
And wiped the red smudge I left on your forehead

You muttering your non-stop little mutters
I tease you about stupid stuff as if nothing else matters
Your hooded gaze drifts from the crap on the tv to me and then lingers on something on the ceiling that only you can see

We listen to the Duet Mornet and Chris recorded on your samsung
Over and over again 
I press the play button again because your fingers won't anymore
I see the delight in your face as you hear it again and then once more.

Johnny's learnt not to interrupt when I'm focused on you
sits there quietly and watches us two
fills my glass with chardonnay
a small whiskey in your sip cup.

Later he tells me 
Who has been to visit you over the last few days
Who has popped in briefly and then fled
Who stayed briefly longer and then also left and wept.

Then Johnny and I reminisce about old favorite movies you've watched
long ago 
Tea with Musselini; 
Driving Miss Daisy, Dinner for One; Life is Beautiful, 
You try so hard to make yourself understood 
probably remembering every one as usual
but the words get trapped in the muttering 
and slide back down your throat in to the abyss of forever lost words.

I try to ignore your eyes with a few trapped tears
ask to watch Dinner for One again with you like I have done the last couple of years
We all laugh yet again at the stupid antics of the clumsy clot James
and the prim and proper delightful Miss Sophi 
as if we've seen it for the very first time.

We watch it twice 

and I take a little video clip of this moment and whatsapp it to your Chris and Loubi.

I overstay as usual till you've had your dinner 
patiently offered to you by Ursula bite for bite
Time to go and I leave some more lipstick smudges on your forehead 
for her to clean later when she puts you to bed.

Driving home I ponder 
as I so often do 
after leaving you
and wonder
how come I don't also end up weeping at your side?
Am I in denial or become  blasè ... 
What's become of  my usually soppy heart?

The conclusion I've come to is none of the above
and think for now I will simply cling and embrace
to this thing I've finally figured
it's called Grace."

For those that are regular followers of our blog and our Facebook Page and personal friends of Sonja, you are most likely aware that her condition has deteriorated.  It is hard to imagine how difficult and frustrating it must be now that she can no longer use her hands at all as well as the ability to speak.  I sometimes find solace in writing her letters - often on her facebook wall.  Then I read it to her later on as well as the responses.  I know it brings her comfort to know that there are still people out there that care.  

In the beginning, we read umpteen blogs written by patients and carers - sometimes very graphic and depressing, Sonja and I agreed a long time ago that we will keep this blog positive as much as possible.   Forgive me if I falter now and then - it has become a challenge as her condition is deteriorating.  Despite things looking pretty bleak at the moment, we still manage to laugh about something silly every time I visit.  Normally I just sit by her for a while and hold her hand, stroke her and talk about this and that.  I still sing Hallo Dolly to her every time I walk in the door and I know it pleases her judging by her body language.  She can't sing with me anymore but her eyes do.  

I'll share a few photos and thoughts of the past year here - just like I would if I was still writing to her, the intention being a record of random events as well as keeping those interested up to date. Although a challenge - I'll try hard to refrain from turning it into a depressing blogpost.   I ask that you rather see it as a diary of two girls and their friendship.  

Dear Sissi,

I put up your Christmas tree again 

Can you believe another Christmas has come and gone?  The past year has taken its biggest toll health-wise on you.  I'm trying my best to write politely when in actual fact MSA is a bastard of an illness and stole so much of you. Your voluntary mobility has decreased drastically and you are no longer able to use your hands at all.  The biggest loss is of course your speech that has taken a hike - and so fast - without giving us sufficient warning.  I do miss your lovely voice so much.  Along with that your eyes struggle to keep a long enough gaze - sometimes closing as if they are tired and you drift off into little snoozes quite often.  

Despite various attempts of all kinds, we have not managed to find a way for you to say even yes or no - making it very difficult for us all to figure out just about anything.  Your carers probably understand you the best and take care of all your physical  needs.  They are truly amazing and the bond that has formed between you is very good.  I know that you have made it your business from the very start to be a 'good patient' - making caring for you easier but by no means a walk in the park.  

Let's reflect on some of the things that happened this year.  Hopefully it will soothe some of the anguish that I sometimes see in your eyes these days.

Glowing Sissi's.  The two of us draped in Christmas lights
 the night I put up your Christmas tree.

The arrival of Topsy on 21 February 2016.  What an amazing
bundle of joy and energy in such a little body.  He has been
such a blessing in your household.  He was a gift from an
anonymous friend :)

You needed a wider and taller table next to your chair.  I found this one
and had fun painting it for you.  

For March MSA Awareness we had a photo-shoot with a few close friends. We all dressed in white with purple trimmings.It was such a fun day and you loved all the fuss and attention and you looked so beautiful.  Link to that wonderful day here.(viewed 1449 times)

Early in March, with a bit of persuasion from your awful Sissi, an appoint-ment was set up with Hospice, in preparation for you to go there for a few days at the end of March so as to give the carers and Johnny a short break.  Johnny went camping with a friend.  We agreed that the Hospice experience was not the best and if at all possible we will avoid a repeated visit.  On a positive note, I think you liked the constant stream of visits from caring friends. 

On 25 May we braved the streets again with the Sissi  Bissi.I took you to the beach.  Here Lillian dries your hair before we go out.  It was a fabulous morning.  We even ended up at a coffeeshop for a cuppacino.  It almost felt like the old days.

You so enjoyed watching Vincent the sand sculptor

June 2016 - Catholic Priest Father Francesco came to meet you and
sang a few songs.  We were both
a bit smitten by the handsome priest
who was so sweet to you and we were both
silently amused when he asked you to remember
him in your prayers - especially for his lack of patience.
Video clip included in the blog The Room - (3013 views to date)

Artwork as a gift to you from Father Francesco

I think I could have opened a florist already with all the flowers I've brought you :)29 June 2016 

Sometimes when I go away I leave your name in the sand

I left your name on the beach at Robberg

Other times I look for heart stones on my  little jaunts.  The small ones I bring to you - the big ones I leave there - for you.

This big one left for you at L'Agulhas 

Also at L'Agulhas

Left for you at the rustic wooden cross at Rasperspunt - also at L'Agulhas

Picked up in the Kleinkaroo and brought home for you 

In September Lara and Mornet came to play a duet.  The subsequent blog
 got surprisingly good reviews. Magic in the Little ThingsIt was quite a thing to quickly reorganise Chris' bedroom where the piano
lives.  We moved the bed around to accommodate your enormous wheelchair.
Add a few bits of foliage, a standing lamp for ambiance and a few candles
dotted all over and voila we had a bit of magic going on. :) 

3 October 2016 used to be a big event - the highlight for you
regarding MSA Awareness.  Sadly this year it had to be cancelled
as Johnny was recovering from a stroke and the family situation
was fragile.  We decided on a very small personal gathering with
only a few friends.  It might  not have been big in numbers but
it was a perfect day.  Blog post
 (Photo by Laurette van der Merwe)
 So, there's it -  a few things about 2016 - wrapped up in a few pics and words.
I'll end with my favorite comment in our TV Debut - 'I'm not going to be miserable'.  We'll both cling on to that.

(Written by Karin Holtzhausen)

Saturday, October 8, 2016


Should this be the first time you visit this blog - go to this link for a brief background.

(The words / phrases in italics are from a song by Angelina Jordan - What a Difference a Day Makes.  The song will be posted at the bottom of this blog).

What a difference a day makes
Twenty-four little hours
Brought the sun and the flowers
Where there used to be rain

Due to various reasons, there was no MSA Walk by us this year. Apart from Sonja's condition, Johnny has also been ill the last couple of weeks. Their children are concerned and stressed as both their parents are not well and were supportive of this decision. The family situation has been fragile and it would have been unfair to expose them to any additional stress. 

It was decided to have a small get together to show support for Sonja and Johnny and a few close friends popped in for a brief and intimate visit. The many kind messages of love and support towards Sonja and Johnny are appreciated.  

Although the gathering was small compared to other years, The Room lived up to its expectations and was filled with its usual Little Magic.   The few friends sat in The Room - all comfortable with each other, having snacks and tea; chatting about little things and simple things - each one sensitive and loving towards the family.  Later on we lit candles and thought of all MSA patients and their families.  Silently we also reflected on the affects that Multiple System Atrophy has on the loved ones of patients.  

Not planning and rushing around to organize our usual walk at Strand Beach, although not without its fare share of stress, left a feeling of guilt as well as a feeling of relief - if that makes any sense.  It was always this mad cocktail of stress, including elements of anticipation, excitement, fun, satisfaction and complete exhaustion.  With guilt and disappointment set aside - I am happy to say that this day, was a really really good day.

It was a simple morning of friendship love and fellowship - yet it was no simple morning.  

It was twenty four little hours.  It brought the sun and the flowers. It was just another day - yet was no ordinary day. It was rather a perfect day.


 My yesterday was blue, dear
Today I'm a part of you, dear
My lonely nights are through, dear
Since you said you were mine

It's heaven when you find romance on your menu
What a difference a day made
And the difference is you

PS - If you've followed this blog - you will know that Sonja and I call each other Sissi.  We sing Hallo Dolly to each other when I visit her.  Sonja specifically requested for this clip to be shared in this blog.  Yes, it shows her fragility.  But most important - it shows a lady of courage and substance. Your dedication to MSA Awareness is appreciated and recognized by more people than we probably realize and your light will shine forever.

I love you Sissi. 

Thank you to Laurette for photographs and video.

Written by Karin Holtzhausen

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