HI all, I have posted a few times previously as I was diagnosed in August with FND. I wanted to do an update so say where my journey has taken me so far. I had a wonderful appointment with a Neurologist at the Alfred Hospital in Melbourne. The point of that was though, she said I was doing everything possible in terms of self management. What I have also learned through this whole experience, is that you cannot rely on the medical profession to come up with some miracle answer to FND and the management of the symptoms. What I have did was studied every single piece of research and information available on the internet as well as talk to Neurologists. I designed my own treatment plan which involves hydrotherapy as well as starting a new program for myself that is leaning towards
Neuroplasticity. As I live in Australia, there aren't the same amount of public awareness as in some other countries and therefore if you tell a doctor or someone from the medical profession about FND
they look at you as though you are mad.
This is the sad truth that the medical profession cannot treat many people with FND because they themselves have no time to research what it is and what treatment programs are available. One could get very sad, angry and depressed about the lack of support, but instead I decided that if no one of the many many medically trained professionals that I have seen over my short journey since diagnosis could find the answer to my questions about my brain, then I would do it for myself.
I have located that the Middle Brain is where the signals are sent to nerves, and in my case and many other people with FND the wrong signals are being sent out and received. Thus, if you look at the brain, I have a bug in my software system and am very lucky that it is not a hardware problem. Like a computer bug, the process of de-bugging myself isn't going to be overnight, it will be a long process however it can be overcome and managed to a point where life can be "stabilized".
Another thing I found was valium greatly helped with my pain and twitching legs and muscles
and allowed me for the first time to have relief enough to massage areas of my body that before the valium would seize up. It also helps with pain management.
Along with the physiotherapy program that I designed for myself and the Neuroplasticity exercise program, I am also working to release the stress component of FND. It is frightening to go from being a very althletic and physically fit person to barely being able to stand up without balance issues.
Throughout all of this though, I have continued to walk. Even if it is very slowly and with stumbling feet
and I loose balance all the time, I still manage to walk, as I will not allow myself to give up.
I guess by posting this there are negatives and positives to add to the community. One is that many Medical professionals within Australia simply do not have the research nor the time, to design programs for people with FND or even to educate themselves about FND. This is a negative. The positive is, that if I ever wanted to do a PHD on FND and Neurology, I now know more about the human brain and how incredably flexible and marvellous it is: from the top down and from the down up. We are not a mind and a body seperated, as are mind and body together and through FND I have experienced this more and really know this as opposed to some intellectual text book.
There are no quick fixes, no one pill to take. FND takes time and effort. But it can be overcome.