Parkinson's Self Care

You are a doctor, your own doctor. Parkinson’s demands it.  Realizing that you have the disease

is the easy part. It’s not subtle. After a while you can’t ignore it. Knowing what to do about it is a little harder. Parkinson’s is a full time disease demanding 24 hour a day full time care. Symptoms and how you feel can be different every day often changing hour to hour and sometimes by the minute. It requires the full time care of a full time doctor. You are that doctor. You are your own personal doctor by necessity.

Every PWP has a different set of symptoms and each symptom shows to a different degree. Therefore the treatment each person needs is unique because the symptoms are what are addressed. Then the meds affect each of us differently. A med can help one person, make another hallucinate, and seem to have no affect on a third. You are the person who best knows and understands what helps and what doesn’t. Therefore many PWP have taken the responsibility of dealing with the disease and improving their life upon themselves. They are not ignoring established PD medical practice. Seeing the doctor once or twice a year for an hour and taking pills is only one part of dealing with PD. The real work is trying to minimize the daily impact and misery of the disease by taking responsibility for the day to day active management of PD.

Self care does not mean taking care of your physical, emotional, psychological, and spiritual health by yourself. It is one aspect of a collaborative management approach to PD in which patients, caregivers, and healthcare practitioners all work together toward shared specific goals. It is a full time job, not to be taken lightly. It requires taking the active management of the disease and symptoms upon yourself and making continuous adjustments in order to minimize the affect of PD. You manage the disease instead of it managing you. 

Become expert at self care. Track your symptoms, when they occur, what makes them better and what makes them worse. Notice when you feel good. Write it down. Look for patterns. Check in with yourself throughout the day and make adjustments as needed and see if they help. Discuss what you learn with your neurologist and other PWP. Make your home into a safe place where you can feel good when things are bad. Learn to communicate your needs to those around you. Don’t keep them bottled up inside. Surround yourself with good people that you can go to and count on when things are bad. The PD community understands what you are going through and can help. I have learned more about dealing with PD and managing my symptoms from fellow people with PD than I have from doctors. We are our own best resource.

The real problem of course is that PD is progressive and there is no cure. It just gets worse. In face of that it is up to you to live your life as though you have the cure in your hands, you are the cure. Take responsibility for improving your life upon yourself. You are your own best resource. My doctor seems genuinely interested in learning what I do to survive. 

Finally, plan for the future in order to enjoy and make the most of life at any age and stage of PD. This may sound a little touchy feely but what you have to do is understand and accept and love yourself as you are now, not hang on to what you were before PD. Your world changed. Parkinson’s will take you places you haven’t been before and challenge you in ways you weren’t challenged before. Better get ready. The train is coming.