Translated video transcript
Finding out after 2 years of treatment for deep depression that I was in fact a Young PWP was a slap in the face but at the same time a relief. Knowing that one has a chronic, progressive and incurable disease is obviously hard, but at least I knew WHAT I had.
To begin with the most difficult thing was accepting the diagnosis. Months and months went by when crying had become the norm and I constantly asked “Why me?”, but once I overcame this I began to look for quality of life. For me it was as important that I adapt to my new situation as it was to adapt everything around me to meet my needs. I started by buying an electric tooth-brush, then substituting clothes with buttons for T-shirts and jumpers, and I introduced other changes in my home. But instead of installing banisters I put strategic supports so as to respect the decor of my house and avoid it feeling like an old people's home.
I don't deny my disease or feel ashamed and I've learned to ask for help, although the feeling of being dependent is terrible. The fact that I live on my own means I get tired but at the same time there's no opportunity for negligence or carelessness to set in.
It's sad, but those who should be closer just aren't. I suppose that comes from a mixture of rejecting any kind of responsibility and not knowing how to handle seeing the person they love suffering and feeling unable to help. Fortunately I can count on help from my neighbours, and although some of the people I knew have disappeared, I've not lost a single one of my really good friends. I'm on my own quite a lot but I don't know what boredom means. Nevertheless it's important not to neglect one's social life and to stay in touch with reality. I have found that for me the best thing is to spend equal amounts of time with PWPs and non PWPs.
I think that it is as important to know how to handle emotional issues as it is to take the medications, for example fighting depression, knowing how to manage stressful situations or finding an activity to give life meaning if you have to give up work. I was interested in art long before Parkinson's came along, so I tried to improve, and I'm still doing so. This is the positive side of our extreme sensitivity, whilst the negative side manifests itself as sadness, crying or irascibility and being quick to anger. I've observed that when I try to explain this phenomenon, people look at me with scepticism but when I say that it is a bit like having a period every day of the month, their faces light up.
I would like society to be more informed about this disease as people generally don't know much more than its tremor, which if we consider the whole catalogue of symptoms, is a mere detail. If they knew more about our balance problems, dyskinesia and rigidity, then situations in which we are mistaken as a being a drunk or a drug addict could be avoided.
I try to be prepared as much as possible. I don't make big plans or think too far ahead, which doesn't mean that I don't have illusions. When I see photos of being ON and OFF it's easy to feel horrified at how Parkinson's wreaks havoc with our bodies but what I'm really afraid of, much more than the physical part, is our “hard disk” - the brain. With so much medication and being a Young PWP, I worry that obsessions, hallucinations, gambling and/or dementia may appear over the years.
I found out that it is complicated to get people to understand what Parkinson's really means as the first impression is that we fluctuate between being ill and sane, which may make people think we are fraudsters or that we are mentally disturbed.
But one thing is sure, that once HE decides to enter your life (without having been invited), you will never get rid of HIM. Medication may make symptoms disappear or improve for a while but even if you scrub with a bath mitt of horse hair, have 20 showers a day or even use an enema, HE will still be there. Inside and out, day and night, in summer as in winter. ALWAYS.
Then one day somebody very kindly wishes you “Get well soon” and you have a tough time explaining that it is a progressive disease. Nobody knows, not even those with the disease, which way it will progress and just as you get to grips with one or other new challenge and manage to cope well, the next one is already waiting.
I've observed that consciousness is changing. While PC's, notebooks and iPods become more and more sophisticated, we who live with this neurological disease know that when it comes to our brain, there is still a lot of research to be done. Every "OFF" makes it very clear that the minutes and hours of feeling good are limited and I suppose that when facing the infinite, we have a nearly obsessive attitude towards time. I commit myself clearly to quality instead of quantity and I'm not willing to waste time with silly little things. That doesn't mean that I'm walking around all day long philosophising like an ancient Greek. Each and everyone has his/her own criteria for what is important to them. The question is to be conscious of the moment you are living. Be authentic.
It's a long time since I stopped asking “why me?”. I see and live each day with Parkinson's as a challenge, an opportunity in life to show that I fought and gave sense to my short stay on this planet. And I hope that when the day of reckoning comes, when I have to face the final curtain, I can say:
I've loved, I've laughed and cried.
I've had my fill; my share of losing.
And now, as tears subside,
I find it all so amusing.
To think I did all that;
And may I say - not in a shy way,
" Oh no, oh no not me,
I did it my way".
For what is a man, what has he got?
If not himself, then he has naught.
To say the things he truly feels;
And not the words of one who kneels.
The record shows I took the blows -
And did it my way!
“My Way” - Frank Sinatra
