The below account was written by Daniel, a physiotherapy graduate who volunteered some of his time in the Move4Parkinson’s office.
“I first met Mags during the final weeks of my physiotherapy education. She had given my class a talk about patients with lifelong illnesses and their ability to take control of their treatment. She reminded us that they live with their illness day-in, day-out and that we can only help guide a patient’s treatment, but in the end it is up to the person with that lifelong illness to manage it. Mags had walked into a crowd of students, lecturers and guests and stood on stage for over 30 minutes. Few, if any in the room would have known that Mags had been diagnosed with Parkinson’s nine years ago, let alone the extent that it affected her.
Fast forward four months later. I was now volunteering with Move4Parkinson’s, and meeting Mags for the first time since I had seen her presentation. As I walked into the office, she was sitting in a chair, unable to stand up as she was in an “off-phase” of her drug treatment. Her legs had seized up and become stiff. Anybody could see her movements were now slow and difficult. Occasionally, she found it hard to communicate her thought. This was a big change from the woman I saw walking on the stage four months previous who confidently spoke and answered any questions we had.
The wide scope of Mags’s symptoms during her “on-phase” and “off-phase” was a big surprise for me. I found myself watching her movement more closely in case she fell when she stood up – something I hadn’t considered to be a problem. She asked me to film her standing up and walk two meters and sit down in another chair. This task would take Mags a matter of seconds during her “on-phase”, but to my disbelief the film took two minutes to record. As a physiotherapy student I had seen patients with Parkinson’s disease before. I had seen them at their physical best and physical worst (when the drugs effects are minimal). However I have never seen one person show such vastly different physical symptoms on two consecutive meetings.
As I look back on my first day in Move4Parkinson’s I appreciate how important it is to encourage patients to take control of their treatment. Patients attend short appointments with health professionals. They are invariably and correctly arranged to occur when the patients are at their physical best, to allow for optimal use of the appointment. Unfortunately, it also makes it difficult for a health professional to judge the extent that their symptoms affect them when they are having an “off-phase”. The treatment of anybody who experiences a wide scope of symptoms is difficult. It is tough to plan for treatment and advice unless the extent of effect of the symptoms is seen and in a variety of settings. Therefore as health professionals we can only guide people with chronic illnesses, through suggesting treatments and action plans. It is then up to that person, the patient, to take the advice and best apply it to them in each situation they face.”