It was never my intention to go into researching my problems with Cerebral Palsy thinking I would find answers, but now with the Neurologist’s letter in front of me, I felt a strange feeling come over me that this was it.
I am grateful he was sympathetic to my issues. It's never easy working on something late in the day that you know nothing about. However much information I had managed to find out, there would possibly be no more, unless I was able to read between the lines.
What happened in the Consultation?
My neurologist couldn’t work out which part of the brain was faulty so as to impair non-verbal memory or cognitive functions. He said he couldn't help me any further at this stage, although he wasn’t going to rule out that with future research, it may be possible to measure the function of the brain in a more ‘precise localised way,’ but said for now that wasn't an option.
It is because the medical profession know my concerns that it makes it easier for me to bring acceptance. I say acceptance and not closure, because closure is always final and there is so much I need to work through. For me closure means bringing understanding and answers to all my questions and I know that's not an option right now.
Finding an acceptance
For those who have and deal with Cerebral Palsy also, I hope they are able to find an acceptance, because with no research available, we're not likely to know anything more than we already know.
It's good that your bringing acceptance and not closure.
I believe there is more information out there that hasn't been discovered yet. I think in the future you'll find your information as modern medicine advances and we find answers to a lot of things.
Good luck in the future Ilana. Love ya!
Smile! Lisa not unless someone takes pity on the CP community and starts doing research into what we deal with, particularly as we age. It is what it is, I cannot change it. All I can do is come to some sort of acceptance over it.
I believe a lot of people wouldn't give up CP because that's all they know. I wouldn't give up CP because that's all I know and without CP I wouldn't be here today. Happy New Year. We will probably talk Monday. Love you, your friend Colleen.
Thanks for your comment Colleen.
Courage, strength and wisdom... those are the cornerstones to real living, I believe.
"Courage to change the things we can... strength to accept what we cannot change... and wisdom to know the difference.'
Way to go Ilana! There is so much courage, strength and wisdom in your life and in your words.
I have a kind of sad feeling reading your post Ilana. Why sad I'm not that sure but I definitely have a sad feeling deep inside. I'm glad that this isn't closure, as we are the professionals in our field and if the medical profession don't want to accept our findings, its to their own demise. Take heart Ilana, it will happen.
Our battle for research into CP hasn't completely come to an end, as our CP society here in New Zealand, are undergoing research right at present. They have the University of Auckland behind them to use their resources to collate the findings from the society's questionnaire to its CP members.
Many of the questions you raise on your post are in this questionnaire. I was one of their test members to take an online type of questionnaire to see if other members could manage the format they are using. It will take time but be assured, there will be results published on the society's findings of their members with the help of the university.
I, like many others with CP are trying to find answers to help us all to understand the whole picture of CP and the affects it may have for our future. I personally don't believe there will be a closure for anyone living with CP as long as we still have CP, as the results of some malfunction at birth.
Take heart ilana as your in safe hands.
Mike I know from my own research and from speaking to two Neurologists, there is no current understanding with problems relating to the brain and CP, because although you and I both have CP we both have different parts of the brain that have been affected, and therefore struggle with different symptoms on a day to day basis, so it would be impossible for them to undertake research.
That said I always have an open mind to all possibilities. Like you, I will await the findings of Auckland University to see if the research they have undertaken will bring about new insight in to what we may deal with.
Terry, thank you for your wonderful encouraging words of support.
I totally agree with your sentiments on courage, I have always lived by those thoughts, but I also believe that where there is life there is hope and although this particular door has been closed for now.
I would hope that in the future there may be some answers out there for what I deal with.