Don’t act 🇬🇧

Today has a different light. An angry day, something I never felt since I am sick. So, I would like to talk about it in order to face my tricky Fils de Park’s. Don’t act, don’t be sad, tomorrow will be OK, for sure!

A week Day, at Home, 11 AM

A standard day, same pills, same day-to-day life. But suddenly my Fils de Park’s became a tsunami! And I am under house arrest, sad and helpless. My body is an enemy, my feet are painfully twisted, my right arm is useless and sorrow is undertaken my brain. I already experienced it, it is just for a few hours. My best shelter is the waiting room.

That is why I’m angry today! OK, this is not a normal day but it happens! And if I don’t talk about it, I give a distorted picture of my illness. Sadly, we are a lot to do the same!

 Why are we not telling the truth?

Why do we let neurologists explain to us that surpassing ourselves is the best way to face it? When can I surpass myself when taking three hours with a crutch to go from my kitchen to my living room?

Everybody is talking about the advantages of sports activities for us, courage… But here, now, I’m in survival mode on the raft’s Medusa! And yes, I am damn angry, because even if some people no longer want to hear about it, this is my reality. A fight against a weird enemy.

I don’t want to complain, I just want to put the Parkinson’s disease into words.

This chronic disease which could turn my life into a living hell in a few minutes. The most difficult to bear is more the tiring toggle switch between «On»  and «Off» periods than pains.

The Shadow’fighters are living with a dysfunctional battery. One that could switch off at any time. Our constant worry is to have neither charger battery nor guidelines.

Hopefully, for most of us, these crises are not our day-to-day life. But that is the core issue! We get an internal disability! And everybody is free to refuse to take this reality into account.

Yes, we are disabled!

Today, I am 44 years old, alone at home and unable to go to the toilet, to cook, and so on. How would you define it? Not to recognise it is criminal!

Being in the denial implies that we feel guilty. However, now I will refuse it! I will fight against the systematic link between disability and wheelchair! And our society has to evolve on this point.

Today, I am angry, not because it is a bad day but because I have the strange feeling that I should not have to talk about it. Far from a lively society which just ignores us.

Today, I am screaming from the rooftops that we are also a lively part of this society and that our disability makes us stronger and stronger.

And finally, this strength will help us to fight against popular belief, to communicate more about early-onset Parkinson’s disease and about chronic diseases.

A telluric strength, full of humanity and humility, and believe it or not, more optimistic and joyful than your boring speeches!

So a word to the wise.