Having Parkinson’s disease is a demanding job, while at the same time trying to make everyday life work as well as possible.
It is a life project in which you are the PROJECT MANAGER. It takes good ORGANISATIONAL SKILLS to get all the different actors in healthcare and community services to work together as intended. Do not forget that you are the expert.
You need to be WELL-INFORMED and KNOWLEDGEABLE. Handling potent medications and advanced technical equipment correctly requires SPECIALIST KNOWLEDGE.
Whether you want to or not, you become a MANAGER. Your home is someone else’s workplace. A steady stream of healthcare staff and therapists pass through your home. You are the one who has to explain your specific needs and instruct the healthcare staff. So it is also an advantage if you are a good TEACHER.
You must keep your FINANCES in order. Living with a chronic illness costs money. It is good to be able to make a budget that works. And to be able to perform a little MAGIC, so that every penny stretches a little further than usual.
A full-time job
PATIENCE and PERSISTENCE, certainly. In addition, you should preferably have no interests other than Parkinson’s. If you are to follow all prescriptions, recommendations and exercise programmes, there is not much of the day left. On an ordinary day, I counted 20 different activities connected solely to Parkinson’s.
But that is not enough
In addition to all this, you are expected to maintain your relationships and social contacts. To be positive, and preferably content.
And there you stand, with your inadequate qualifications and all these demands. With poor sleep, difficulty swallowing, pain, clumsiness and relationships that are only partly working.
When the equation seems impossible to solve. WHEN LIFE FALTERS — it is still not over.
Do not underestimate the value of MEETING OTHERS who are in the same situation — people who know what it is like.
And if, in addition, you have good contact with an accessible and interested NEUROLOGIST and NURSE — then the equation can be solved.
Eleonor Högström
Living with Parkinson’s since 2006