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My Story – Colin Cook

My journey with FMD began in 2011. I was very ill at that time and was eventually diagnosed with Chronic Pelvic Pain. The next few years were characterised with periods of such severe pain I was virtually bed ridden sometimes for a month with periods of complete remission. “Flares” occurred every 4 -6months.


When in remission I made the mistake of doing far too much. Coaching a junior rugby team, running, swimming, gym, taking on extra work and never saying no. I was in a classic boom bust situation.


In 2015 I had another flare this time very severe. My doctors tried a minor surgical procedure which left me far worse and I am told I spent 2 weeks lying in bed balled up in pain. I do not really remember this period. Eventually the pain ended and I began to improve. I began to notice my speech was sometimes becoming slurred until it was so bad my wife took me to the doctors. Three days in hospital (the only bed available to me on a dementia ward) CT and MRI scans advised no stroke and referred to a neurologist and speech therapy. When I saw the neurologist, she did not examine me or look at me) said my scans were normal and I only had a stutter. My wife pointed out I sounded drunk and my cadence and tone was different. The neurologist seemed not to care.


I complained to my GP and was referred to a different hospital and one of the GP’s kept telling me I was depressed (I knew I wasn’t) she seemed to think a holiday would cure me. By now my balance was gone. I saw physios and OccupationalTherapy who gave me sticks and a wheelchair.


No one was offering me a diagnosis or hope I was now nearly 12 months into this. I was lucky enough to be able to pay see a Neurologist. He arranged further tests and told me he believed it was FND and advised my GP refer me to Professor Mark Edwards. It took 10 months to see the Professor as, understandably, he has a long waiting list. When I saw him,he confirmed FND and believed I would benefit from in patient physio but warned there was long list.


I continued using sticks and a chair slowly getting worse but hopeful treatment would help. It goes through your mind they are wrong and that something far worse is going on.


I was lucky my family were a great strength and support and stopped me from falling into depression (I had down days obviously but not full on depression). They made sure I went out was able to partake in holidays and social activities. Mark Griffin of Diverstime Scuba was teaching my wife and son to scuba dive and he insisted I could join them as diving was an accessible sport. If I could get in the water they could get me diving. With his patience ad support and the support of Swadlincote Sub Aqua Club I got in the water (despite losing the ability to swim) and for a short while felt “normal” I was doing something that I felt was out of my grasp and it gave me increased hope.


I was lucky enough to work for business that supported disabled people. My manager was desperate to keep me and carved out a new role for me which cut down on my travel and need to use the phone. My job had been a home working one any way so throughout this whole period I kept my job. I know how fortunate I was in this.


In Jan 2018, I was poorly with pain and my mobility was at a low. But it was a very low point St George’s called to offer me a cancellation for my Physio.


I was admitted on the 12th February and met my physio Katherine Holt. She explained to my wife and I about FMD how my pain caused my risk and the operation triggered it. She explained how she would work with me over the next week. I started work that afternoon. By the Wednesday afternoon I was able to text my wife that I had walked back to the ward. It was slowly and was like a toddler but it was a walk. On the Friday, I left the hospital walking. My gait was not normal but it was improving. I was told about pacing and not trying too much too soon. I was warned there may be set backs and days when I may struggle but I now had the tools and knowledge to manage those and if I could not get back to walking was on their books now and just contact them. It was made clear to make no drastic changes in my life for at least 6 months no matter how tempting.


Since February I have slowly increased my movement and activity. My gait looks normal. I have the odd wobble particularly when tired or in a busy place where people stop suddenly but it is a steady improvement. I take nothing for granted and appreciate I could still get kicked in the backside by this awful condition but I now have hope and my life back.I am being careful to avoid boom bust and to keep my life even.


For all of you going through life with this condition I wish you luck and hope that someone somewhere offers you the right treatment and support.

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