“What you give attention grows” a statement used by many coaches. And most parents know this too. If a child falls and you focus all attention on the pain, a child will be sadder than in the situation that, after the initial shock, you shift the attention to something else (something nice). In my experience this also apllies to coping with parkinson’s. There are days when someone asks me “how are you?” I’ll say “Good. I’m doing lots of fun things. Just given a workshop and at home most things go smooth.” And strangely enough, there are days the same question leads to a parkinson-answer: “My medication is increased and I am struggling with the question what feels better: a tremor or an arm that moves of its own will.” You can imagine that this will have consequences for the rest of the conversation.
I don’t get my joy in life in being the perfect parkinson patient. My pleasure is in my family, my work as a coach, trainer and consultant, friends, family, sports and more, and parkinson is not on this list. I have to watch out for a healthy balance in my activities. There are weeks that I’m working with parkinson’s more than half of my time: As a volunteer for the Parkinson’s Association and as a coach. And to avoid misunderstandings: That’s usually fun to do with fun people to work with. And it’s important for me to do other things too.
Koen and I did some data mining on the internet regarding the issues that people with pd, their partners and caregivers are struggling with. All the issues we found in our study (over 40!) can be classified into three areas. Could it be that the quality of life for people with pd (and his/her partner and other people who care) is largely dependant on how well he / she handles these three areas:
- the symptoms of the disease and limitations
- their own feelings around being (visibly) ill
- the reactions of people around them
It might, and I think that it is more important what you think or do outside parkinson. Or if you prefer, outside the box there is much more room than inside. Be a father, a mother, a husband, a friend. Enjoy your work or your hobbies.
The title of this site should therefore actually be: ‘Live With parkinson’s!’
Note: You might say it is not parkinson, it is Parkinson’s. And I prefer parkinson’s as small as possible. I don’t see parkinson’s as part of my being and to me it feels different when I say I HAVE parkinson’s than when I say I DO parkinson’s. And therefore ‘parkinson’s’ and no ‘Parkinson’. Language is such a beautiful medium and there is at least one person who hears and considers everything you say. Be kind to him/her.
Enjoy the summer!
Kees