Monday, November 19, 2012


 Laurette's photography

The first year after being diagnosed with MSA I tried to avoid reading about the disease.  The symptoms I could expect in the future were too dreadful to deal with and I needed time to do that.

After the first year I slowly, tentatively made contact with other patients and got involved in awareness campaigns.  This mostly had a positive effect on me.  Seeing these patients and their families cope with the many and varied symptoms of MSA gave me hope that we would be able to do the same.

I now have contact with many patients who are at a more advanced stage than me.  In the ‘closed group’ discussions on facebook I get tips which will come in handy when I have speech and swallow problems etcetera in the future.  I also get to see and hear about the worst side of the disease; bladder and bowel incontinence, severe breathing problems and death.  Death, I’ve learnt, can happen anything from 1 to 12 years after diagnosis.  There is no common pattern of degeneration; unlike me, some patients can still walk, but unlike many of them, I can still talk.

Some of my friends here in South Africa are bedridden, some are in care facilities, some have permanent catheters and one has passed away.

It is easy to lose oneself in the quagmire of all these symptoms and become depressed.  The fear of losing my dignity in the future sometimes overwhelmed me, but now that I need help with functions like getting dressed etcetera, and have to deal with the loss of privacy, I realise that dignity isn't necessarily what I thought it to be. 

I have to aspire to a new kind of dignity; a spiritual dignity that transcends physical dignity.  As I slowly take leave of my once graceful body, I hope and pray to acquire an everlasting spiritual gracefulness.

A rose after the petals have dropped - Laurette's Photography

As the petals of the rose are dropping to bare the last remains of the flower, the rose hip, I’ve come realise the importance of the fruitfulness of this inner core for the survival and continuance of the plant as a whole.

Gal 5:22
But the Holy Spirit produces this kind of fruit in our lives: love, joy, peace, patience, kindness, goodness, faithfulness

My thanks to my dear friend Laurette for allowing me to use her beautiful photos.


  1. Very thoughtfully written Sonja. The illness certainly gives a unique view on life hey? Many things look different from this side of the 'fence'. I like where you wrote that dignity isn't necessarily what you thought it was. So true. Theres a lot of dignity in gracefully allowing people to help us, letting go of having to be in control, to have to do things myself. And new pride and closeness come with watching my girls make Thanksgiving dinner, and guiding hubby through the making of seven layer dip! Having a terminal illness has also made me bolder in some ways, less tolerant of people or things that are negative or waste my time, and willing to act on it!! xo thanks for sharing, ~Kathy

  2. Thank you for your comment Kathy. You put it so well...'there is dignity in gracefully allowing people to help us'. I was previously fiercely independent and needed to control everything. Allowing others to help me has brought me closer to them, made me more humble and I hope a little less controlling! MSA is a life changing experience that teaches many new lessons and values. Sonja

  3. My mom has lived with MSA for 18 years. I follow your blog as I find it touching and gives me insight to my mom's world. She was initially diagnosed with Parkinson's, and we did not know any better. This I will always regret. I wish that speech doesn't leave you and for your to have health and happiness at every single instant of your life.

    1. Hi, it's great to see you here again! On the website patientslikeme I've read a lot about patients struggles, sometimes for decades, to get the correct diagnosis. I suspect this is because the disease presents itself so differently in different patients. These late diagnosis understandably puts great strain on the patients and their families. Hugs for you and your mom!

  4. Hello Sonja...I read this with a heavy heart after learning that a friend from my support group, had passed away at the weekend. I have MSA & met Gordon almost a year ago, at my very first meeting. I remember seeing him in his wheelchair, unable to speak or hold a cup & it frightened me a great deal...the spectre of what was to come, personified.
    Like you, I have always been strong and, at times controlling, but now I am learning to relinquish that power and to ask for help from my husband of 46 years. Pete already does all the cooking, shopping and housework so I hated having to call him to put on my socks and shoes etc
    I now realise that he would rather do that, than see me struggle and cry tears of frustration or anger !
    It is strange that even at my age ...I still have lessons to learn.
    Kindest regards from Lin x

    1. Hello Lin, thank you for your comment! MSA is a roller coaster ride of fear, frustration and lots of love of those around me and it never stops teaching me new lessons! Take care, S x

  5. My dear Sonja, this too has been hard for me ~ giving up the control! Dignity is so very important and if we think it is more than the physical and that it is a state of mind it would be so much easier to make this transition. Thank you for helping me look at Dignity as a state of mind!

  6. Dear Brenda, you already have the respect of many for the dignified way with which you've handled the many losses you have suffered because the disease. With renewed spiritual grace and dignity I hope we can continue this difficult journey my friend. x

  7. Dear Sonja, how special this blog post still is. I am touched seeing Brenda's message, knowing she's no longer with us. Just like memories of her will fondly stay with us, so will these posts continue to touch the hearts of many long after they were written.



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