Can you tell us a bit about yourself?
I’m a 46-year-old Executive Head Chef. I currently live with my partner, Danielle (Danni), in Lincoln UK. I am currently training to run the Lincoln City Half Marathon on 18th September 2022. We are raising money for Myelopathy.org. If you feel my story inspires you, then we would really appreciate any donation. Even if it’s just £1. You can visit our JustGiving page: Brett and Danni Lincoln Half Marathon. I have a passion for live music and I was fortunate enough to work in the industry for 5 years and got to meet many of my heroes. Unfortunately, I left that life behind in Cardiff post-COVID but still make sure I carve out time to go to gigs. Most recently I was able to visit Knebworth for the second time in my life, but this time only to see the one Gallagher brother!
When did your symptoms start?
In August 2021, I tripped up some flagstone steps whilst on a staycation to Cornwall with Danni. I gave myself an almighty headache, concussion and crushed my spinal cord.
How did your symptoms first present themselves and what were your symptoms?
I had numbness in both of my arms and hands along with a lack of dexterity in my left hand and painful pins and needles in my legs. What little sense of balance I did have, had disappeared completely. When I closed my eyes, I would sway and nearly fall over. I had a constant feeling of needing to go to the toilet, but I couldn’t go when I tried. I had reduced feeling and control of my downstairs department! Over time, all of these symptoms got worse, and I developed new ones. For example, my left leg is not working properly making it very difficult to walk. One noticeable moment was when I dragged the whole sole of my shoe off. I realised something was definitely wrong then!
When were you diagnosed with DCM?
How long did it take you to get diagnosed?
A few months. After 2-3 trips to A&E and multiple visits to my GP, a locum at my GP surgery told me I needed to go straight to Queens Medical Centre in Nottingham as my symptoms were deteriorating rapidly. I was losing control of my bladder and bowels and was failing more and more neurological tests.
Did your doctor or surgeon diagnose you?
I was initially diagnosed by the on-call spinal surgeon at QMC, and was then passed on to the main spinal team.
Have you had any treatment? If no, why not? If yes, what treatments did you have?
Yes; I had emergency cervical decompression of C4 to C6. They were initially going to operate through my throat. But changed their minds and went through the back of my neck instead.
When do you have your treatments?
8th November 2021
How was your recovery process?
My recovery is very much still going on, so slow and painful! Honestly, it was and still is a real mix of emotions that I think I am still coming to terms with. I was angry, bitter, remorseful, embarrassed, joyful and grateful to name but a few. The surgeons made it very clear to me that the purpose of the surgery was to stop me from getting worse, not to make me better. I was very worried at that point. In the grand scheme of things I am only young. Danni and I were wanting to try and have children, so that was really hard for me. I was very lucky in that as soon as I woke up from my surgery I felt better and so did my legs. I knew there was hope of recovery. Since then, I have had good days and I have had bad (some really bad) days, where my pain and mobility feel like they are worse than before the surgery, especially in the cold! I am still trying to work out what pain medications work best for me, and I am trying to keep active (hence the half marathon!) while bearing in mind I am only 8 months post-surgery!
How has DCM affected your life?
For me, it is a hindrance but I am not letting it define the rest of my life. I could have ended up in a wheelchair, so I am very grateful for where I am. I get daily cramps and as I mentioned, I am always in pain. It can get me down on some days and I hardly have any patience now (although Danni might argue I didn’t have much patience to begin with!!). I am working out how to deal with that as I go through. I think it has made me understand other people’s issues more, but it has also made me see how resilient I can be.
What are some of the misconceptions of DCM and people with DCM?
That everyone’s experiences are the same. Everyone’s journey is so different and there is no one size fits all approach.
Do you have any advice or tips you would like to share?
In my personal experience, the more you sit around and do nothing, the worse the pain is.
For me, having a recovery goal has been really helpful as it has allowed me to see progress. When I first started training for the half marathon in March 2022, I couldn’t even walk at a fast pace. That slowly progressed to running for one minute before my leg gave way, and now I am up to running for about 20 minutes in one go! So having clear goals with regular reviews is a good way to keep on top of recovery and not become stagnant.
Make sure you speak to as many professionals as you can (pain team, specialists, etc.) as well as reaching out for peer support if you need it. Although everyone’s journey is different, we will all be empathic to each other’s stories and a problem shared is a problem halved.
How did you hear about Myelopathy.org and the Support Group?
Initially Google, and then the specialist physiotherapist at QMC, Lianne Wood, recommended them.
What has your experience been like with Myelopathy.org and the Support Group?
They have been forthcoming and very informative. They have even donated t-shirts to raise awareness for the charity whilst we train and run the half marathon.
Why did you get involved with Myelopathy.org?
Because I was hunting for more information and to learn about other people’s journeys.