From walking stick to powered wheelchair: not an easy road
“NO, I DON’T NEED IT, I DON’T WANT IT, I’M NOT GETTING IT, I’M WAY TOO YOUNG!”
It all began a few years ago. I suddenly fell when walking my dog, bruising a couple of ribs. A few weeks later, it happened again. Gradually it became worse, I started to fall more often and eventually I was given the advice to use a walking stick.
“NO, I DON’T NEED IT, I DON’T WANT IT, I’M NOT GETTING IT, I’M WAY TOO YOUNG!”
I felt powerless; I didn’t want this at all! A walking stick, that’s for “old people”. Eventually I tried one, and I was pleasantly surprised. The extra support felt great. And so the walking stick entered my life...
Everything was fine for a while, I fell less often, but things didn’t stay that way. One day I was walking with my husband and son, and I just slipped in between them and hit the ground hard. It was so bad that they needed to call an ambulance. When the paramedics grabbed hold of me, I slipped out of their arms again and I realised the situation had become worse. My attending physician at the hospital was of the same opinion and advised me to wear compression stockings and use a walking frame.
“NO, I DON’T NEED IT, I DON’T WANT IT, I’M NOT GETTING IT, I’M WAY TOO YOUNG!”
A walking frame? I could just about tolerate a walking stick, but a walking frame? Then I’m definitely “old”! No, no way I’m using a walking frame. Eventually, I didn’t have a choice. At the hospital, they gave me compression stockings and the physiotherapist gave me a walking frame and said: “We’re going for a walk. No grumbling, just walking.” And honestly? It felt more stable and pleasant again to walk. So I ordered one, the walking stick disappeared and the walking frame entered my life...
Things were fine again for a while, and I was able to do the groceries again. That is, when I wasn’t feeling too tired, that tiredness was really getting to me. On October 17th, I was given the diagnosis of ALS and the advice to start looking for a wheelchair.
“NO, I DON’T NEED IT, I DON’T WANT IT, I’M NOT GETTING IT, I’M WAY TOO YOUNG!”
A wheelchair ... no. Please. Not yet.
My family took me to the ALS League to get some more information. I was worn out, it was too far and too exhausting for me. They gave me a wheelchair, just to give it a try. And again, I had to admit it made things easier and less tiring. And so the walking frame disappeared and the wheelchair entered my life...
I had to swallow another bitter pill, when, during my visit at the ALS League, I was advised to buy a powered wheelchair next. It is impossible to know when you’ll need one since the progression of ALS is different for everyone. And again I replied:
“NO, I DON’T NEED IT, I DON’T WANT IT, I’M NOT GETTING IT, I’M WAY TOO YOUNG!”
I was still getting used to the idea of a regular wheelchair, and now I already had to make the decision of a powered wheelchair? That was too much.
The ALS League persuaded me to at least gather the necessary information on how to obtain a powered wheelchair. I gave in and chose a powered wheelchair for future use, but NOT FOR NOW. For a very distant future. They then told me the application process and delivery could take months. If your condition progresses more quickly than anticipated, you’re stuck. Eventually, we went to the supplier to try out a couple of wheelchairs. The wheelchair I had previously chosen turned out to be perfect for me. The feeling I had when sitting in that wheelchair was indescribable!
“YES, I NEED THIS! I WANT THIS, THE SOONER THE BETTER. WHAT A FREEDOM!”
What a change of heart! It felt like having my legs back, and I could go out again without being a burden on my husband! I was now impatiently waiting for MY CHAIR, because the amount of red tape was taking forever. I now know I’ll never again say: “No, I don’t need it”.
(Interview by Daphne Talboom)
Translation: Katia Ombelets
