1000 days since my stroke by Duncan Mitchell
In the 1000 days since my stroke I have focussed daily on my recovery, been in and out of hospital and rehab and had countless visits to my GP. I have returned to work, invented new stroke technology, I’ve been back in hospital after a seizure, returned to work again and then been made redundant.
As I reflect on the last three years, I decided to share some of the things I have learned. Life is a series of twists and turns and nothing stays the same.
After my stroke, I discovered a new-found interest in medical matters particularly Neurology. I read as much as I could about neuroscience and stroke and followed Stroke Foundation and Brain Injury Awareness on Social Media.
This helped me develop new technology called ‘Brain Games’ And took me to the SAP 1 Billion Lives 2018 Regional Finals in Bangalore. I was flying high and then came back down to earth with a crash when the company resized, and I was made redundant.
As I come to terms with this new chapter, I have done a stocktake in the hope it may help others.
15 habits that have helped me
- Be ready. Employment may be hard to maintain when the job environment changes. I made sure I was aware of my rights, I have kept my professional network strong and I retain records of reviews, feedback and awards.
- Keep a diary every day. First thing in the morning I write down my mood, thoughts from yesterday and five things to be grateful for. This is a good motivator and it’s great to look back on.
- Keep an activity log of how much physical exercise you are doing. I find this helps in a couple of ways. Firstly, I review and monitor my progress, but I also use it keep myself motivated. If I start logging zero minutes walked or zero ball throws it doesn’t feel very good and drives me to get the activities done.
- Set goals: I write down goals for the day and for the week ahead. I try and do at least 20 minutes of walking. Because my left arm is still very weak I use that arm to throw and catch a soccer ball against a wall 100 times every evening. This is an exercise I had watched others do while I was in rehabilitation but wasn’t strong enough to do it at that time. I have left side vision loss, so I try and throw the ball and catch it on my left side using visual scanning to watch the ball. Since I started recording my throws last year, I’ve logged over 5,600. At times my ball throwing is happily interrupted by my football mad daughter who challenges me to take her on at dribbling or shooting. Playing football with my kids was one thing I thought would not be possible while I was in hospital. Being able to play at a walking pace feels like a massive achievement for me. It is something I cherish, and play can get quite competitive because neither of us like losing.
- Monitor your weight every week. I do this every Saturday morning and log it in my phone app. I’m not losing much weight, but I’m managing to maintain a consistent level.
- Drink water regularly through the day. I use an app called Drink Water Reminder which is free on the Google App Store to log and remind me to sip water all day to stay hydrated.
- Limit alcohol consumption. I was never a big drinker and following my stroke I was advised not to drink, but I would have the odd Pale Ale now and then. My last one was on a flight from Sydney to Perth, but the next morning I had a seizure. I’m not sure if the drink was related but I’m convinced it didn’t help.
- Go to bed and to sleep at the same time every night. I struggle if I don’t get to bed before 10:00pm so even if I’m not tired I try to get to bed at the same time each night, if not earlier when I have fatigue.
I also make a point of saying goodnight to my kids. When I was in hospital I feared I may not be able to do this again. It’s a simple task, but it means so much to me.
- If you can, walk, walk, walk. I go for a big walk once or twice a week and listen to music or a podcast. Having to learn to walk again, after my stroke and again after my seizure, I find it one of the best ways to exercise. It is an activity I feel very grateful I can still do by myself.
- Remember to take your medicine. I use an alarm or reminder on my phone.
- Ask for help when you need it. I sometimes think I can do more than I am able and need to remind myself it is ok to ask for help.
- Think about language. I don’t use the term victim. I remember meeting with my medical team just prior to my discharge from hospital when I described myself as a victim. My discharge team suggested that I refer to myself as a survivor as it is a more positive term.
- Don’t be embarrassed about physical or noticeable deficits. I have a white stick due to my vision loss and I although can get by without it, I try and use it without any embarrassment I was really inspired to listen to Jessica Gallacher, a double Para-Olympian, talk about how she has ‘owned’ her visual impairment and has rebuilt her life as a world record holder and medal winning Paralympian.
- Try new things even if you struggle. My wife booked a mini-cruise from Fremantle down the West Coast, to give us all a bit of a break. I wasn’t sure how I would cope on a ship and in new surroundings, but I was glad we did it. I did find it was a bit of a struggle to get my ‘sea legs’ as I am already wobbly and couldn’t see very well but I did enjoy myself. I couldn’t join in with the kid’s activities or afternoon drinks with the grown-ups, but I still had a great time.
- I really enjoy reading now. My vision therapist suggested I read a book called ‘Left Neglected’ which was very relatable. It’s about a traumatic brain injury survivor who comes to terms with left vision loss like me. Visiting my local library can be a challenge because of my vision issues, but I take advantage of a pre-order function and simply collect the book I’ve ordered on my next visit. I utilise every shortcut available rather than struggle.
Another book I enjoyed was ‘In the Blink of an Eye’ by Pete Coghlan. I read this after my wife put me onto several motivational videos and blogs posted about his journey after Locked-In Syndrome. His book gave me the me the boost I needed just when I was at my lowest point. I’ve been in touch with Pete, but we haven’t yet met. His story is incredible. It’s important to find inspiration in other stories to get you through the hard times.
On the 1000 day after stroke my priority is to find a new job and to continue the fight to make the best of my life. I have accepted I will never drive again, I have a brain injury and have Hemianopia. But I’m still here and I can partially see, I can communicate, think, walk and enjoy life. I’ll be on anti-seizure medication for life and won’t be able to have a beer, but I think that’s a small price to pay to stay out of hospital and be here for my family. I have volunteered to be on a Stroke Foundation advisory panel and I hope to be able to contribute to help stroke patients in whatever way I can. I am frustrated I won’t see my tech innovation through to fruition, but I trust the remaining members of the team will bring my concept to life.