June is ALS Month, a chance to talk about a disease that affects some 4,000 Canadians and 200,000 people worldwide. ALS causes progressive paralysis, and the average life expectancy is two to five years. Despite numerous research efforts, there is no cure and few effective treatments.
The Neuro recently spoke to ALS patient Danièle Doucet about her illness, its effects on her life and how she's coping with this difficult disease.
Please describe for me the story of your illness?
In April 2019, having just returned from a trek in Nepal, I felt a strange sensation under my left foot. As the summer progressed, the sensation increased. After discussions with my doctor, we began to explore possible causes. During COVID, my condition worsened, eventually leading to a first diagnosis of neurological disease in June 2020. The final diagnosis was made the following August.
What are the symptoms? What is the impact on your quality of life?
Gradual loss of motor function in all voluntary muscles. The more the disease progresses, the greater the impact, and I have to adapt to new challenges every day. The main challenges are no longer being able to work and losing my autonomy, which means I need carers all the time. The presence of family and friends is essential if I'm to enjoy some happiness in coping with this new reality.
What was your experience like at The Neuro?
I was diagnosed at another facility and found that for such a dramatic illness, the support on offer was not adequate for me. So I decided to go to The Neuro to see if the treatments and support were adapted to my illness. The difference was incredible! The fact that the team is multidisciplinary changes everything. Everyone knows me by name and vice versa. It's a very human approach, very warm and extremely understanding. I was immediately offered solutions, support and proposals for clinical trials. In short, I was offered a glimmer of hope.
Are there any misconceptions about ALS that you'd like the world to know about?
It's a disease that can affect anyone, even the healthiest!
What could public authorities or society do to help ALS patients more?
Make cities more accessible and welcoming for people with reduced mobility.
Are you involved in any research? If so, why?
Yes, because it makes no sense that we don't know the causes of this disease, and that we don't yet know how to slow its progression.
