I was diagnosed with Functional Neurological Disorder (FND) back in early 2013 and the only information I was given was a hand scrawled website address for www.neurosymptoms.org and I was told that was all the neurologist could do for me so was referred back to the GP. Back then the website was very basic, although very much improved now, and not all of it was written in language that was easy to understand. This didn’t really help much as the GP had never heard of it before so didn’t know what to do to help, so basically I was on my own fighting against an unknown illness with just a little bit of what I could understand from the website.
A little bit about me.. I’m full time carer for my wife Susie who has secondary progressive MS, so I have a little knowledge of neurological issues. Susie used to work in the disability rehabilitation and care industry so is a fantastic resource with the knowledge she picked up over the years. We discussed the possibility of trigger causes like stress and anxiety and I embraced sport as medicine. Back in June 2013 I did a Triathlon and found that it helped a little bit so I decided to keep going with the idea. Triathlons and running has become a big part of my life and I’m convinced that this is keeping at least some of my FND symptoms at bay some of the time. I do have to watch I don’t push myself too hard and rest well between sessions, which is a very tricky balance to maintain and I don’t get it right every time.
FND action website is a fantastic resource with lots of information that I wish I had available when I was first diagnosed, and want to get involved where I can. I have a Triathlon club friend who’s husband was recently diagnosed with FND, and as well as my own experience it’s just making me want to do something positive to help ensure others don’t have to go through this in the way I did. Raising awareness and funds for FND action via JustGiving is a great way to do this, and that is why I set myself the challenge of taking part in the Great South Run held in Portsmouth.
Just running a 10 mile run I’ve done before wasn’t quite going to do the trick. I had to stand out in a large crowd of other runners otherwise people wouldn’t see the logo on my back, so I came up with the ninja turtle morph suit. It created a few challenges for me on the day of the run. Having my FND symptoms flare up big time the day before the run I had to decide whether to use the wheelchair or sticks to run with. With my mobility issues, just getting in to the morph suit was a challenge as it was so tight. On the day the turtle shell components kept falling apart so I had to keep stopping to make running repairs on the way to the start line, and then the cold symptoms started..runny nose and cough that I had been keeping at bay began to take their toll, but by this point I was at the start line in the ninja turtle outfit with my sticks and a stubbornness that comes with dealing with FND over several years. So although the wise thing to do would probably have been to pull out at this point, I’m far too stubborn for this. I crossed that start line and as a competitive runner, once that happens there is only two things that can happen..crossing the finish line was the only one I was going to let into my head.
The weather conditions with storm Brian close by meant we had quite a bit of wind, although the sun did come out and help too. Fighting through symptoms of FND and the wind was tough as every step of the run was made that little bit more challenging. With a slight tremor in my legs and waves of fatigue hitting me, then going away to hit me again a few minutes later, I still pushed on. My chronic daily headache symptom kicked in big time at about 3 miles but I didn’t give up because I was thinking of all the people who FND Action can help with the funds, and the awareness of FND needed to be seen by as many people as possible.
The local paper photographer got a brief picture and a sentence or two to put in the paper, the Portsmouth news, and About My Portsmouth website got a short video clip of me walking part of the run on my sticks.
I crossed the finish line in 2:34:44, the slowest I have ever done as this is the sixth time running the Great South Run. It’s also the only time with the FND symptoms flare up so much, so speed didn’t matter as I got extra value for the entry fee and the FND Action logo was out and visible for longer. I was met by a friend at the finish line and walked back to my bike with them, and something funny happened on the way home. Remember I am still wearing the ninja turtle outfit and at this point riding a Raleigh chopper with all sorts of flashing lights and a flag attached, I overtook a guy delivering pizza and he gave such a fantastic funny double take. He must have been thinking about the teenage mutant ninja turtles and their love for pizza!
Thank you Tim for being part of the FND Action team by helping raising much needed awareness, and funds which will be used towards projects we have planned for the coming months. See below pictures of Tim’s day. Well done and in Donatello’s words … Booyakasha!!