Interview with Iwan Sadler

What is your name and where do you live?  

Hi, I’m Iwan Sadler and I live in a Welsh seaside town in the UK called Llanelli.

Can you tell us a bit about yourself? 

I’m 52 and have four children. Before my diagnosis with Degenerative Cervical Myelopathy (DCM), I led a very active lifestyle. I used to help run a Jiu-Jitsu club in my hometown. You would also find me in the gym three times a week. I did a lot of windsurfing in my 20s. So going from being very active to not being able to take part in my past activities, took a lot of getting used to. I’ve adapted my lifestyle around my condition now. I spend my spare time doing activities that keep my brain active. I like dabbling in a bit of digital art and listening to audiobooks. Meditation is a key part of my life now. I find it extremely beneficial as a coping mechanism for the pain and mental challenges that DCM brings. 

What is your role at Myelopathy.org?

I’m a Co-Founder and Trustee of the charity. I’m also an Admin for the Myelopathy.org Support Group. I also run the social media side of things along with other few bits and bobs that come my way to help raise awareness of DCM. It gives me a sense of purpose: raising awareness and helping other people with DCM. 

Why did you get involved with Myelopathy.org?

I started my very own community page on Facebook in 2014 to raise awareness of DCM. I was contacted by Dr Benjamin Davis to share my story on the Myelopathy.org website. It was a project he and Dr Mark Kotter were working on at the time. I agreed to share my journey. I then met up with Ben and Mark at the University of Cambridge in 2016. Given our common goals, I joined Myelopathy.org in 2017 and now Myelopathy.org is the world’s first charity for DCM.

Can you tell us about your diagnosis journey?     

When did your symptoms start? 

Knowing what I do now, my symptoms first started when I was in my 30s. 

How did your symptoms first present themselves?     

I was always going back and forth to see the Doctor. It started with muscular pains around the left side of my neck and shoulder blades. It got so bad at times that I ended up in A&E on a few occasions.

What were your symptoms?     

Muscle pain to start with. Then dizziness, muscle spasms, walking difficulties and then dropping everything. I even have on my medical notes that I had turned into “Frank Spencer: from the 70’s sitcom Some Mothers Do ‘Ave ‘Em.

What was your diagnosis experience like?  

When were you diagnosed with DCM?

I was finally diagnosed in 2014 at the age of 43.      

How long did it take you to get diagnosed?  

My initial symptoms started in my 30s. It was the frustration of being misdiagnosed that set me on the path to help raise awareness of this condition.

Did your doctor or surgeon diagnose you? 

Before I had the official diagnosis of DCM from my surgeon, I had self-diagnosed myself a few months earlier with the help of Dr Google. This was of course before I heard of Myelopathy.org.

Have you had any treatment? If not, why not? If yes, what treatments did you have?  

When do you have your treatments? 

I had surgery for Myelopathy in November 2015. I had a multi-level ACDF anterior cervical discectomy and fusion from C3/C7.

How was your recovery process?

It wasn’t too bad. I did expect too much too soon but I think a lot of people do this. Just remember when it comes to recovery, it’s a marathon, not a sprint.

How has DCM affected your life?

I think DCM affects you not just physically, but also tests you mentally. Having to give up a very active lifestyle was probably the hardest thing I had to come to terms with my condition. But once I had accepted that, I could carry on enjoying my life with a very different outlook.

What are some of the misconceptions of DCM and people with DCM 

I think the biggest misconception of DCM is that people think it’s rare and that it only affects the older generation. A lot of people will have DCM without knowing that they have the condition.

Do you have any advice or tips you would like to share?  

Listen to your body and don’t overdo things. Also, there are many ways we can continue to enjoy life with DCM. We just need to learn how to adapt and also don’t underestimate the mental challenges that DCM brings. I’ve used meditation a lot in my DCM journey and I would highly recommend it. 

What do you do when you are not volunteering at Myelopathy.org?

I’m lucky to live by the sea. On my good days, I go to the beach and make the most of it. My youngest two play rugby. That keeps me busy from taking them to training during the week and rugby games on the weekends.