Advice for living well

A psychological journey with Parkinson’s

For me, Parkinson’s has been a strange journey which has generated some major highs and some quite extraordinary lows. Oddly, most of the lows were in my early years with the condition, even though this was a time when my symptoms were at their least incapacitating and did not really impact heavily on my lifestyle.
A few years ago, I considered the reasons for this and also reflected on what other people had told me about their experiences of how Parkinson’s had affected their mind-set.
Armed with these insights, I cobbled together the pyramid below which for me demonstrates a reasonably common pathway for those of us who live with this condition. See what you think.

Diagnosis
The pyramid (below) shows the starting point as being the diagnosis, although of course many of the symptoms will have been apparent before this. I think, however, that diagnosis is when the psychological journey starts because there is a name for your condition and you have some concept of what you have in store.

Shock, anger, denial
This stage is one I think everyone experiences. In fact, I would say many, if not most people with Parkinson’s do not actually get beyond this stage. The shock, anger, denial or S.A.D phase is one where we are introspective. We build protective barriers around ourselves and nurse the wounds, not so much of the physical effects of the condition, but more of the mental effects. At this stage, the condition is all about us, and to a certain extent we are selfish – no one else understands what we are going through.

Pyramid for Tom's pieceCommunication
This is the key moment in the transition from misery to happiness. Slowly but surely, you begin to tell people close to you about how you feel. You begin to realise, perhaps subconsciously, that the only reason people don’t understand what you are going through is because you have not communicated it to them. You start to understand that communication is quite a good therapy – a problem shared is a problem halved. Furthermore, you realise that people close to you and even those not so close are prepared to listen and be sympathetic without in any way pitying you or treating you any different to the way they did before. In fact it is the very act of communicating with friends and family that ensures that they do treat you the same.

Consolidation/Education
Gradually you start to face the future with Parkinson’s; learning a little bit more about the condition; speaking in more constructive terms with your consultant and bit by bit becoming more accustomed to the idea that you have a long-term degenerative neurological condition.

Acceptance
Another key moment. You begin to accept Parkinson’s as being part of who you are. You are no longer the person you once were and you accept that your life has changed irretrievably. You start to alter your ambitions for the future and tailor them so that they take your Parkinson’s into account. You are adapting to the new you and are beginning to concentrate on the positives of this and are more concerned with the things you can still do rather than things that Parkinson’s has interfered with.

Engagement
This is the stage in which Parkinson’s becomes a wider issue than simply you as an individual. You start talking to other people, comparing stories, listening to their experiences. You begin to look beyond your own personal fate and realise that your experiences might actually help others.

Participation
Participation is the stage when you might join a group or take an interest in a particular aspect of the condition such as looking into the prospect of new treatments in the pipeline or contributing to a Parkinson’s group or forum. You realise that by contributing constructively to the Parkinson’s community, you are not only helping other people but you are helping yourself feel better about “you”.

Advocacy
Now you’re really rockin’! You are becoming known as a force in the Parkinson’s community. People are listening to what you have to say and are grateful for your input. You are becoming busy in the business of Parkinson’s and this gives you quite a buzz.

Influence
You and your colleagues are part of a group who are actually making a difference in the world of Parkinson’s. Your insight, passion, urgency, focus, fundraising, empathy and participation are having a direct influence on the future treatment and care of people with Parkinson’s.

This is why Parkinson’s Movement was formed.

Change/Cure
This is what Parkinson’s Movement hopes to achieve.

So this is my perception of the Parkinson’s journey and oddly the longer I have this condition and the worse my symptoms get the more determined and positive I become. I accept this is not the same in everyone. Parkinson’s manifests itself differently in all of us. My particular brand is defined by particularly visible symptoms which are balanced perfectly by a strong and cheerful attitude which many would describe as “blind optimism”. Blind optimism or not, I am still here and thriving!

Tom Isaacs

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