MSA - FLUFF THIS PRIMPING BLOG AND PLEASE LET ME HOLLER

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 
disappear;
unseen
.

So 
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
For…"

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