Ida was diagnosed with ALS on the day her father died: “A big sadness”

Ida Ahlnér was an outdoors person through and through. She climbed mountains, hiked in mountains, skied and ran. But in 2022, her body suddenly started behaving in a way she didn’t recognize. But she thought the symptoms were due to stress.

– I started to experience muscle loss and had difficulty doing everyday things, such as going out for a run. Pretty quickly I suspected it was ALS.

After she read an article about Börje Salming, and that his illness started with muscle twitching, she sought treatment. On April 19, 2023, she learned that she had ALS, on the day six years after her father died of the same disease.

– When I got the news, I wasn’t surprised, but of course very shocked.

Ida plans her funeral

Now life has changed drastically, and the hardest thing is not being able to live as active a life as before, Ida Ahlnér thinks. She has assistance around the clock and can walk a few steps at a time, but always needs someone’s help.

– It is difficult. It’s not like I think about being sick every day. I try, in order not to get totally depressed, to have something fun planned in front of me. Something I can still do. But some days it is a great sadness. But I try to look at the positives and do the things I can still do.

For example, Ida skis with assistance. Continuing with the adventures is important to her, it is something she and her husband Petter have always done before.

– Life has become high peaks and deep valleys. But I’m also depressed and sad that I can’t do what I could do before.

Now Ida is planning her own funeral, which has become a form of therapy and preparation for her.

– For me it is important. It’s sad that I can’t be there, because I have a great plan. It has been therapy to think about death and influence what I can.

Ida says she chooses to tell her story to raise more money for research. Her fundraising goal was 50,000, but has already raised over 700,000 kroner.

– It has gone beyond expectations and I have an incredible network around me that helps.

“Incredibly important to raise money”

When the father was ill with ALS, the family never checked which variant the father had and whether it was hereditary. She wishes they had, as it might have helped her get the diagnosis faster. Now researchers are trying to find a way to safely make diagnoses faster.

– If you have a hereditary variant, you carry the condition, then you get the disease. But it is difficult to diagnose. From the first symptoms to diagnosis, it is often a year. It is far too long and stressful for the family, says Caroline Ingre, senior physician and researcher, in Nyhetsmorgon.

Caroline Ingre wants to raise awareness that there is a hereditary variant of ALS. She also hopes that in the future researchers will develop medicine that can stop the disease before it has time to develop.

But the research being done now will not have time to help Ida Ahlnér.

– It won’t save me in any way, but if you carry a genetic variant like I do, it feels important when family and relatives can suffer from the same disease as me. Then it’s incredibly important to raise money to solve this enigma that ALS still is.