My Life with FND

Hello, how are you doing? I hope that you have been keeping well and enjoyed the summer which has passed. Sorry for the lack of content but I have been dealing with my own problems, and with being busy with the start of school and my wife going back to work along with my trip to London, it has been hard to find time to sit and write down a new blog.

So where to start really, maybe a little update from my last blog post, and then I will talk about London and my experience’s with my own personal reflection and opinions.

So last time I posted I talked about my mental health and how it was starting to get on top of me again, and that I had not spoken to anyone about it and that work was not going too well. So where am I now and what have I done about it. So I am still signed off work while I get control of the depression and anxiety and the GP has changed over my medication. At the moment this is working but there is still a long way to go, I am currently starting to spend some time on my own this week, as kids are back into education and R is back at work. While in some aspects this is good, in other ways I really need to make sure I do not slip into my old ways. Work is the same, and right now I can not see past the end of the week, not to mention what the plan is going forward.

Adding to my anxiety was the fact that I had the dreaded PIP renewal forms come back to me over the summer, and that my blue badge had expired, but the weekend gave me a little bit of good news, and that my Blue Badge had been approved and that PIP have sent my award back, with the same points I had before, only difference is that the award is for a on-going period, which I have been told is a light touch every 10 years. With that it is a massive weight lifted and I should start to feel better about this side of things.

Having Functional Neurological Disorder does have some set backs, apart from the obvious, and that it is that there are only a few people in the whole of the United Kingdom specialise in this condition. There are many good consultants who have a good understanding of FND but not many places which deal with this day in day out.

Back in December 2019 I was referred down to the FND clinic in London at St Georges, this is a 500 mile round trip for me, but I thought……I have nothing to loose, while down there I was seen by Consultant Neurologist Dr Jan Coebergh, he was amazing with me and was very understanding. Dr C said I would benefit from some specialised physio therapy, roll on 2 years and last week I had the opportunity to attended this one to one treatment.

Now what I am about to say about this treatment is 100% my opinion and while I can’t talk about it all I can give you a overview of what happened etc. This is because the treatment I received is still in a trail phase and I am not allowed to give out too many details.

I attended Monday to Friday each day spilt into sessions, some 1.5 hours some a little longer, it was up to me how much we did and I was never pushed into anything I did not want to do. Monday started with a small “test” to see where about I was with “various” physical activity’s. We then worked out what my goals for the week were and looked at how we would achieve3 them. What I can tell you is that I pushed myself everyday, far past where I should of gone, but I wanted to make the most of the expertise while I was there. What I can tell you is that I personally found my time there very useful and I have come away more informed and know what I am doing then ever before.

While there was a practical side to the physio there was also a theory side, which really helps you understand the movement side of our body. It was a very long week and I really missed my family, but getting home to R and the kids was just truly amazing. I will be arranging to go back down to see Cameron again towards the end of the year, and I already have a follow up appointment to see the Dr.

With all this rolling around my head, I can’t help but think it is time to finish this chapter in my life and move on to the next one, As one door closes, another one opens, or so they say. I hope you all will join me on this adventure and I look forward to hearing your feedback, so please leave a comment below!!

A huge thank you to Mike for supporting my while in London!!

Until next time!