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“I wanted to help make sense of what was happening to us”
Author: Sophie ParrottPublished: 12 January 2023
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Canada-based Leslie Davidson tells us how she and her late husband managed simultaneous diagnoses of neurological conditions – and shares how her recently published memoir ‘Dancing in Small Spaces’ seeks to honour him
Tell us a bit about yourself.
I live in Revelstoke, a city in British Columbia, Canada. It is a small ski community in the mountains. I’ve been retired for around 13 years. My husband Lincoln and I were both teachers – I taught kindergarten and Lincoln was a teacher librarian.
I was diagnosed with Parkinson’s in 2011, and at the same time, my late husband was diagnosed Lewy body dementia (a type of progressive dementia that impacts thinking, memory and movement).
How did you manage your simultaneous diagnoses?
It was a huge blow. I went to a very dark place for a couple of weeks. Lincoln was very sad, and we were scared. But I didn’t lose him to the disease or depression or rage – he was just lovely. He was very strong, and because he was strong, I could be. So we just learned to live with it, and we were so well supported.
The first thing that I did was call up a local counsellor who I could talk to about what we were experiencing. By the time Lincoln went into care, I was seeing her almost daily. Having a place to express my fear and sorrow was really important.
I think I dealt with it by keeping busy, by sharing it with our friends and by relying on people for help. I got myself informed.
What were the main challenges you faced balancing the two different conditions in the household?
Getting enough sleep was a huge challenge – and it has been all through the progression of this condition. When I didn’t get enough sleep, I unravelled quickly, and it affected how my medication worked.
So we ended up spending money like crazy on support. I hired a retired nurse to come in every other night and to do a nightshift with Lincoln so that I could go to a guest bedroom and sleep uninterrupted. We also asked for help, and we got it from our friends, our kids and my siblings. I think that was really critical.
How have you worked to care for yourself since your diagnosis?
I’ve worked very hard on exercising. I was grateful that I went into Parkinson’s being very fit, and I continue to be fit – but it gets harder all the time because I become more tired. I bought a treadmill for the days when it was too icy or too miserable outside to walk, and also got a personal trainer who had a background in neurological disorders. Additionally, I did a lot of reading about diet, and I tried to access good information from reliable sources and use it to my advantage.
The other thing that I did was tell everybody about my diagnosis. I thought: “I can’t carry this alone.” I don’t want to pretend with people I love, and I trusted their support. It was amazing how much support came our way. We needed that very soon because within months of his diagnosis, Lincoln was presenting with very significant cognitive issues, and so I needed that community around us.
What did you hope to achieve with writing your memoir, ‘Dancing in Small Spaces’?
I wanted to write the memoir to help make sense of what was happening to us. I found that if I was feeling very down about our situation, writing about it led me to the little glimmers of light. The other reason was that I wanted to honour Lincoln. I would not have predicted that he would be as stoic, as brave and as good humoured as he was.
The response from the Parkinson’s community has been very positive. I’ve had at least one email every day since the book was released in October 2022 – sometimes from people I know, but often from people I don’t know who have found me through my website.
What advice would you give to others who have recently been diagnosed with the condition?
My advice would be to seek community. I resisted becoming part of a Parkinson’s group, but I found that when I finally connected with some people with the condition, they were inspiring, supportive and helpful.
Also, get yourself moving. If you weren’t an exerciser before, find something that you enjoy doing, whether it’s dancing, swimming, walking, Tai Chi or yoga.
The other thing I would advise is to read up on Parkinson’s – but pick your sources very carefully. Get yourself informed. Knowledge is power.
“I never expected to create a project like this with my son”
“People simply want to meet, connect and offer support to each other”
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