Life on wheels – an SMA patient perspective on life and treatment

In the opening keynote presentation at Lis-n & Ler-n 2022 meeting that was hosted by Biogen, Simon Toftgaard Jespersen, chairman of the Danish patient support organization Muskelsvindfonden (Muscular Dystrophy Foundation) stated that although he was fortunate to have grown up in a supportive family who helped him make the best of the situation and live as normal a life as possible.

 

Simon Toftgaard Jespersen is 33 years old and lives in Århus on the east coast of Jutland together with his partner and daughter. He has a master’s degree in Media Science, but admits that the job as chairman of Muskelsvindfonden takes up most of his time. “Most of my life is devoted to embracing diversity and supporting projects to help disabled people and promote our agenda,” he says. In addition to the administrative work as chairman, Simon also acts as master of ceremonies at Muskelsvindfonden’s annual Grøn Koncert (Green Concert) music festival events. But whenever Simon introduces himself to a new audience, there is one thing that often gets left out: “A lot of the time I don’t mention I have SMA type 2,” he says. “I don’t leave it out intentionally – I simply forget!”

 

“A lot of the time I don’t mention I have SMA type 2. I don’t leave it out intentionally – I simply forget!”

When Simon was born in 1989, as the first of three children, he was a perfectly normal and healthy baby at first. When at the age of two he was diagnosed with SMA, his parents were told he would probably not survive another year. After the initial sense of shock and profound loneliness as parents of a child with a rare, deadly disease, his parents joined Muskelsvindfonden, which became an important source of support. Simon describes how his parents decided not to allow SMA to stand in their way of having a happy and functioning family. Thanks to their determination, Simon was able to grow up and enjoy a comparatively normal childhood in his hometown. His parents made a concerted effort to raise Simon normally and rejected the suggestion by the local council that he should go to a special school for disabled children. Instead, they insisted that he should attend the local school, where he was the only one in a wheelchair out of a total of 800 students. “That was probably the best investment they could have made in my life! I had to do what all the other children did – no allowances were made because of my disability,” says Simon.

 

Back in the early 1990s when Simon was first diagnosed with SMA, and all through his school years, there was no prospect of a treatment for SMA – instead, Simon and his family were encouraged to make the best of the situation and focus on the things that Simon could do, rather than his limitations. Simon is grateful to his parents for choosing the path of the “good life” for him. “From an early age, I chose not to focus on my disability,” he says.

“From an early age, I chose not to focus on my disability – my disability is not who I am and it doesn’t define me.”

“Even though I am usually the odd one out in company, and I am constantly having to adapt and make compromises, my disability is not who I am, and it doesn’t define me.” Thanks to his parents’ efforts, Simon feels he has been able to shape his life in a way that is not too different from most able-bodied people, despite starting out in life with a death sentence hanging over his head. As Simon puts it: “I may have been diagnosed with SMA type 2, but I don’t feel sick!” However, that does not mean the realities of the diagnosis and disease do not affect his life. Despite feeling well, Simon has had to spend his adult life juggling the SMA accoutrements of physiotherapy sessions and regular medical check-ups, orthoses, and corsets, operations, mobility aids, breathing machines, and the extensive need for assistance on a daily basis. “It is not always easy,” he says. “I am constantly dependent on other people, and as I grow older, I can feel myself decline, becoming less able to do things on my own and more dependent on people and equipment.” Simon says that having a family of his own has made him realize that his limitations and physical decline is not just affecting him but also his family. “The best way I can describe my experience of living with SMA type 2 is that I am feeling strong, but at the same time I am feeling weak.” For Simon, a key element in making the best of life with SMA has been to focus on what is important in life. “For a time, I believed that the way to a good life for me was becoming the best version of myself, by doing a lot of exercise and physiotherapy every day and sticking to a healthy lifestyle,” he says. “During the first year of the corona pandemic I lost 15 kg – but then I realized this wasn’t actually making me feel any better!” Instead, Simon decided that although he would like to feel stronger, the most important this in his life is how he feels, and how his family is doing.

“The best way I can describe my experience of living with SMA type 2 is that I am feeling strong, but at the same time I am feeling weak.”

 

Text: Medicinsk skribent till Biogen
Bild: Biogen

Biogen-227482 November 2023
Senast uppdaterad: 2024-03-12

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