Having Cerebral Palsy for me was always going to be difficult for me. There is little to no information out there and as I've said, I was never under any illusion that I may not find some of the answers to my questions.
My blog was bound to bring about a mixed response of comments. I haven’t ruled out some research in the future. After a full consultation and examination with my Neurologist, but my Neurologist’s letter was a culmination of me writing to him over a couple of months, looking for more answers from him. He was both kind and sensitive and understanding of my frustrations.
My last letter to him asked him to tie up all the loose ends of our discussions. I asked for his honesty and that’s what he gave me. But with honesty, comes disillusionment. Honesty can also bring disappointment, when you begin to realise what you've had to deal with.
My Neurologist didn't rule out the possibility that research taken on in the future, may bring more answers, but for now his honesty has left me with the contentment that I’ve done well to get this far and must be happy with that. I hope that one day I will find my answers on what I deal with.
Where we don't have answers, others need to have and continue to give support. I never look at things negatively, but I can also see why living with Cerebral Palsy means it's hard for me to stay and be positive.
I can't change where I am, all I can do is work on my emotions. We may all know a little about the condition, but until medical research starts researching the condition, we need to be accepting of what we have and what we deal with.
I honestly believe there are answers out there and in time it will come eventually. It's just going to take time I think and some real hard research. I believe in you Ilana. You're a very strong individual and I know you'll never give up. Keep up that positiveness. I like positive!
I'm smiling now Lisa. Thanks for your positive response.
We all have a differing degree of CP and brain damage to deal with everyday. Staying positive dose truly help but we are all at different places on our journey with CP.
For you I would believe the news of being newly diagnosed with CP as well as your Neurologist's findings must still be a bit raw. I'm with Lisa as I too believe there are answers out there to find ways to help CP and with time we will all benefit from them.
Just look at Michael J Fox and Parkinsons Disease. As more money helps to find more research and with huge spin-offs for people with CP, as it's usually the same part of our brain in both Parkinsons and CP that make our spastic movements and tremors.
There are young adults with bad spastic CP having the same brain surgery as victims of Parkinsons, to reduce their spastic movements and it's working for them.
Mike I am absolutely fine about my Neurologist's findings. As my original journal said I am okay with it.
It's fine that you have your own beliefs on finding answers for what we may all deal with as far as CP is concerned, but until the research begins we have nothing to go on. As I pointed out in my last journal, I still live with hope that maybe one day we will find answers, but for now coming as far as I have, is fine for me.
I explained in one of my journals here on the site, my Neurologist's explanation as to why there is no research on CP, but until the medical profession think they need to research it, I am not sure that will change.
Parkinsons has been researched over a number of years now and is a totally different condition to CP, as far as the medical profession are concerned, which is why research is being carried out on those who suffer with the condition. My uncle died of complications of Parkinsons, so I am familiar with it.
We are all in different places Mike, that will always be the case. No two cases of CP are the same. We deal with different emotional and physical struggles of course, but support for one another must remain the same if we are to help one another on our journey.