I Counselled People with Chronic Illness; Then I was Diagnosed With One: Parkinson's Disease

Written Dwcember 2023

 Life sometimes has a strange way of teaching us what we need to know.

In my pre-retirement, pre Parkinson’s days I worked as a Social Worker. For the last 18 years of my career I provided counseling to individuals with chronic illness - specifically  debilitating and destructive  forms of arthritis such as Rheumtoid Arthritis, Lupus and Scleroderma. For the most part the severe pain caused havoc in their lives and sooner or later it led many of them to have to stop working. As you can imagine this was a devastating turn of events, often leading them to mourn the loss of independence, identity and self-worth.

Imagine my shock when I was diagnosed with Parkinson’s Disease. Although I wasn’t in pain, and at that stage I only had a tremor,  I knew that Parkinson’s is a degenerative disease for which there is no cure – only symptom management.  What didn’t help was that my mother had Parkinson’s and I knew that the road ahead was not going to be pretty. As my clients shared their grief I was aware that they were echoing my own. But as I sat trying to listen I was distracted by the tremor in my right hand. I couldn’t hide it and sitting on my hands didn’t help. I was there to provide support but my mind was flooded with pictures of my future. 

I needed to pull myself together and find a way to keep my issues in check so I could be effective in my counselling  role.  I attended a support group for the newly diagnosed, having facilitated many support groups - I knew how helpful they were.  It was strange being on the other side of the fence, but it was a positive experience which also enabled me to better understand what my clients went through.

Through my work I learned that over time and with support people do eventually cope, whih was comforting to me.  But I also knew that there was no short cut to the grieving process. I encouraged my clients to allow themselves to feel the feelinngs rather than shut them down,  and I needed to follow my own advice. 

I began to keep a journal, recording my emotional trials and triumphs – which was not only cathartic but it served as a sort-of memoir. I can now look back on my journey and see the progress over the years - the challenges I faced and the successes I experienced, culminating in the very recent and successful Deep Brain Stimulation surgery, and I eagerly await the programming of the device in January.

My career as a social worker was invaluable in giving me the tools to manage my life with Parkinson’s -  especially with regard to my relationships with family and friends.While my journey hasn’t always been easy I have learned so much about myself and know that I am so very fortunate in having a strong support system. I thank my lucky stars every single day.