Thomas from Hesse

Hi, I’m Thomas and I’ve been a member of ZNM -Zusammen Stark! e.V. since 2019. I have two adorable daughters aged 20 and 23.

My development: As a child and teenager, I was unremarkable, even though I certainly wasn’t the best at sport. At the age of 20, I decided to become a firefighter and had to take the German sports badge as part of my training. I came last, but I managed it. To maintain my fitness, I even trained for the half marathon in 2007. However, in 2009 I noticed a clear strength deficit, which was also noticeable at work.

So I had a doctor look at it and after 23 months I got my diagnosis: ZNM/ DNM2.

I have problems running, walking and climbing stairs as a result. I get exhausted quickly and am often tired. I haven’t been able to jump since 2013. From 2013 to 2015, I received retraining from the pension fund to become a technical product designer. I’m delighted with my choice of employer, as I was offered a job straight after finishing my fire department career. That took a lot of pressure off me.

In 2018, I noticed a significant deficit in my walking and have had my wheelchair since 2020.

I have always loved cycling and have been riding a pedelec since 2013. I also have a motorcycle that I like to travel on.

I am also involved in the volunteer fire department as a driver/radio operator and play saxophone in the Seeheim fire department band. For ZNM, I am involved in the Research Advisory Board, in the PR and Marketing working group and sometimes also in the Mastering Everyday Life working group.

I now know who I am, what I can’t do and I’m learning to deal with it better every day. Of course, there are also days when I feel a bit worthless. But then I see my two children and I’m proud of myself!

Status 2023