“It is possible to live with ALS”

As told to: Fredrik Hedlund, first published in Swedish in the magazine Medicinsk Vetenskap No 2, 2019.
Spotlight on ALS

“It was my left hand that started acting strange. This was in 2013 and I was working in a restaurant. I thought it was carpal tunnel syndrome, since that is fairly common. When I went to the doctor in December of 2014, they told me that my symptoms were stemming from my neck. I had to undergo examinations and MRIs, but they couldn’t find anything. Finally, they sent me to a neurologist in June of 2015. After that, it only took them a month to diagnose me. But by then, I already knew what it was. I had googled my symptoms and suspected ALS.

I don’t feel sick, and I have a good deal of energy. Me and two other girls with ALS started a support group on Facebook in 2016, and today we have over 2,000 members. I am also the patient representative in Region Stockholm, and now I have been elected to represent Sweden in the European ALS association. I have always been very active, running companies and things like that. Being sick would drive me crazy.  I think this is my way of processing my illness.

It is really important to keep your spirits up. It is possible to live with ALS. As long as you are thinking, your body keeps fighting the disease. My ALS has not changed for a year now. That’s a really good thing, in my mind, so now I thought I would start walking again...

No, just kidding.

I hope that they will find an inhibitor so that the next generations don’t have to go through this. But I’m already long gone. I have a good life but I will never regain the muscle control I lost, and that’s okay, you just have to deal with it.

But I feel it’s a damn shame when all these young girls and boys suffer. It’s not fair.”