Can you tell us a bit more about yourself?
I am 63 years old and was diagnosed (with Parkinson’s disease) 10 years ago. I had an exciting but very stressful job. We are married, have three daughters and a year ago our grandson was born. My wife is my caregiver and supports me in every way.
When did you learn that you had Parkinson’s disease, and how were you told?
Ten years ago. My neurologist was wonderful at telling me the terrible news in a straightforward way. Even now, I smile when I recall what was said.
What was your first reaction? And to what extent has this changed over time?
We’re not going to let it get us down. It’s still true.
What impact has the disease had on your life?
Everything changed and I had to do a lot of grieving. I have banished the words “normal, normality, future…” from my vocabulary and above all I am more aware of my happiness than before.
What is a symptom of the disease that you have discovered that you did not know before?
It’s not a symptom (… but rather a fact, that ..) Parkinson’s also attacks young people and not just the elderly.
What is the biggest challenge/difficulty with Parkinson’s disease?
Without hesitation: the loss of autonomy.
What do you miss the most since you got the disease?
Sleeping through the night without having to get up.
How have your relationships with others changed since the diagnosis?
I have become intolerant of those who complain for no real reason.
How do/should others support you?
It is a challenge because I am always torn between my need for autonomy and my need for assistance. This dichotomy manifests itself especially with regard to my family who have to put up with these paradoxical reactions. But, above all, I don’t want to be pitied.
What is a ‘trick’ that helps you to relieve one of the symptoms of the disease?
I don’t have any tips but rather a reflection: We are not supermen/superwomen and we are allowed to break down so long as we can get back on track.
What, if anything, has Parkinson’s disease taught you?
You have to take advantage of every opportunity that comes your way. I used to work a lot and didn’t enjoy my family enough. With Parkinson’s I am with them all the time and this is especially important now that I have a lovely little grandson. I discovered boxing which is a fantastic sport.
What gives you energy? Hope?
What advice would you give to someone who has just been diagnosed with Parkinson’s disease?
Parkinson’s is not a death sentence. On the contrary, it is a life sentence. It is up to us to make the most of it. Parkinson’s is a disease of the epicurean “carpe diem”.
What is a motto that you particularly appreciate and that you try to live by?
Resignation is a daily suicide. (Honoré de Balzac)