By Sharron Mills
Amy was the MSA Coalition’s 20,000th Facebook fan! When we reached out to her to thank her for helping us reach this milestone, she sent us her warm greetings from Australia and told us about her friend Sharron, who has MSA. Amy helped Sharron write her personal story and share some great advice for people with MSA.
Pre-Diagnosis
I’m now in my mid-sixties, but a few years ago I made two significant changes in my life. Firstly, in my mid-fifties, I began a part-time university undergraduate degree, a Bachelor of Arts with a double major in writing and Australian history. Secondly, in my early sixties, I took up Irish dancing. Dancing is where I met Amy, my talented and very patient dance teacher who just happens to be a speech pathologist.
After a couple of years, dancing became harder, not easier, but the ever-patient Amy and her fellow teachers kept encouraging me. At the same time, my typing and handwriting were becoming slower and riddled with mistakes. As unexpected as these challenges were, I thought they – and a few other unexplained symptoms – must be due to my age since I’d never been a sexagenarian before.
A New Normal
However, in October of 2019, I was diagnosed with MSA. By that time, it was no great surprise due to the huge amount of research I’d been doing about my symptoms. Having my suspicions confirmed by a neurologist was still a source of grief because I knew straight away what a catastrophic prognosis I was facing.
When my troubling voice issues and potential swallowing issues made me realize that I would need speech pathology, who else would I go to for recommendations and advice but my friend Amy? As luck would have it, I was referred to palliative care and through them to Speech Pathology and other allied health specialists at the local hospital at around the same time. This didn’t make Amy’s help superfluous, just an additional bonus.
By early 2020, my handwriting and typing had also deteriorated to the point that I couldn’t continue my studies, and my mobility to the point that I couldn’t continue dancing. So now, ironically, I was a writer who couldn’t write and a dancer who couldn’t dance. Because I had come so close to finishing my degree, I did get awarded an Associate Diploma, so my university studies were by no means wasted. Another advantage university gave me was access to the online resources at the university’s library where I did hundreds of hours of research on MSA. You could say this was a case of ‘know your enemy.’
Family and Friends
You might wonder how my family felt about all this. I am close to my three children and eight grandchildren as well as three of my siblings, and it has not been easy for any of them or my husband, Bruce, to come to terms with my diagnosis or my rapid deterioration. In the words of Kath, my eldest daughter, “I never thought I’d be wishing you had Parkinson’s Disease.” Before I was diagnosed, I had been sharing with them little by little, some of my symptoms and doctors appointments without telling them my own suspicions, partly hoping I was wrong and partly preparing them for the bad news that was to come. By the time I told them of my diagnosis it was clear that some of them were already putting two and two together. For instance, my son, Robin, surprised me by already knowing more than my GP did about MSA. Not bad when we are talking about a very rare disease.
Friends have also been affected by my illness. My bestie from high school days recently flew up from Brisbane to Townsville to spend time with me, as did my younger brother and sister-in-law and younger sister who brought our elderly mum with her. They all made me feel very grateful and very loved. On top of that, we live in a village-like semi-rural community, but are fortunate to still have an excellent little medical center within a two minute drive from home. Thus, we have the advantages of a cohesive little isolated village where everyone looks out for each other with the advantages of town health care. There is much to be grateful for.
Coping
It is not unusual to hear people say that they don’t know how I stay so cheerful or that they know they wouldn’t be as happy if they were in my shoes. Initially, I was never sure how to respond because I know that I am fortunate that I am not prone to depression or anxiety and, so far, have not included these among my many symptoms. Sometimes, especially after a long wakeful night, my response was, “You should have seen me at 2am.”
Then I started thinking a bit more deeply about what I actually do to cope and surprised myself with my simple answer, “I just think of something else that makes me happy.” Often that will involve my grandchildren, but, paradoxically, they are also a source of sadness for me because they are saddened by my clear deterioration, and I know there is worse to come.
So I also dwell on the goodness of people – the medical people who do their best for me, family and friends who care about me, total strangers who open doors or pick up things I drop or stop to ask if I need help and social media support pages, like those of the MSA Coalition, where someone is always awake somewhere in the world and ready to listen. There are so many helpers. None of these can cure the pain and discomfort of this disease but they do make it worth staying alive in spite of the pain and discomfort.
