The way forward

I have written many journals about Cerebral Palsy, but because it has taken 46 years to find out, the feelings and uncertainties I should have had as a child, I now have with little or no hard facts to work with.

Originally I went to see one Neurologist who was more than helpful and who was willing to work things through with me. I had an MRI scan, was given a diagnosis, then referred to a Physiotherapist who deals with brain injuries. I came away knowing a little more, but there were still things I didn’t know that he couldn’t help me with.

I then went back to my doctor ,who kindly referred me to another Neurologist, for him to look at my brain scan. When I first came into the meeting, the Specialist hadn’t looked through the scan and said that at some point he would go back with some of his colleagues, to have a look and let me know his thoughts and would copy me in on my doctor’s letter.

I left the meeting with a little more positivity, having explained what I wanted and never gave it a second’s thought, until last Friday when I received a letter back from him, which was unhelpful. I need is for someone to work through the scan and try to piece together my injury, with some of the symptoms I deal with.

I believe this is why the Specialist didn’t outline more of these points in his letter to me. That he doesn’t really know the answers to the points I have raised and that’s fine, but I just need to know. I will go back and ask. I have waited 47 years to find out, I can wait a little longer.

5 Dec, 2010

10 thoughts on “The way forward

  1. It would be nice if everything in the world were understood completely and could be explained to us in great detail.

    It could be that the answers you are seeking are not attainable. Maybe they are just not sure exactly how some things work and don’t want to say that to you and make you alarmed. Or it’s poor bedside manners, but either way you are not going to get any further and might have to just accept the explanations you have received and get on with your life.

    I hope you can find some level of peace with this, your friend, Brian.

    1. You may be right Brian, but since I started this journey I have never had a problem with not knowing, I am happy to bring acceptance on never knowing the facts on all that I deal with and how I might age with cerebral palsy… and if they really don’t know, they need to tell me they don’t know. I have asked for further clarification.

  2. Ilana your CP is a neurological physical disability that you were born with and the word symptom is something that you are stuck with. People with some symptoms can be cured. There is no cure for CP.

    People live with it and die with it. There is nothing that you can do. Without CP who would you be. I know you were diagnosed late in life and I know it must be hard. I just wanted you to know how I felt about what was going on. I hope you’re not upset with me for saying this.

    I hope to talk with you soon. Colleen

    1. Colleen, it’s really no problem. Feel free to say what you feel. I think had all of this been addressed when I was a child, I would have probably brought acceptance on it already.

      I think sometimes we have to go through the motions to get to a place we’re comfortable with. That’s all I’m trying to do. I don’t have a problem not knowing. Just wish those working with me would tell me they don’t, so I can bring closure on that!

  3. I understand your frustration. Doctors like to beat around the bush and not tell you they don’t know something. It’s like it may make them look bad or something, because a lot of them want you to believe they’re the smartest people in the world and to admit they don’t know would contradict that. I’d go to him and say, “look I need to know this and this and if you don’t know just tell me.”

    Could your symptoms be related to something else? I’d ask that also. And if the answer is a possible, pursue that. Not knowing drives us crazy sometimes, (it does me) but there are times when we just have to accept the not knowing. Love ya!

    1. Lisa I know that my reflux and digestion problems stem from being a premmie baby, I’ve discussed that with the specialist and although all my other symptoms seemed convincing to him, with no facts he cannot say for sure.

      I am happy to bring closure on non-acceptance and have now written back to the specialist to ask that very question. Yes I do know or no I don’t, don’t mind which answer I get as long as I get an answer!

  4. Anyone who has to deal with CP, albeit themselves or their loved ones knows there is no cure. There is no need for that to be reiterated in any response (just my opinion).

    Some people were born with it, some people acquired it during birth, but knew from a very early age what they were dealing with. They would’ve gone through the struggles, the pains, the insecurities and the points in their lives where they too wanted and needed answers.

    You on the other hand only found out recently what you were dealing with. You now have to go through your period of ‘grief’ (for lack of a better word), you now have to go through your acceptance or at least try to get your head around it. This does not happen overnight, I’m sure it didn’t for anyone who has a CP diagnosis.

    If you seek answers on your condition and seem confused by what you hear, BY ALL MEANS CONTINUE TO ASK! No one can put a time line on another person’s healing and acceptance. For some it takes a few months, for others a few years.

    If you’re not comfortable with one doctors response, ask another, or another. Let no one tell you how you should heal, or when you should come to terms with what you have to deal with. We may all be on the same CP journey, but no one has walked a mile in your individual shoes.

    Find your comfort, find your answers and only when YOU are comfortable that there is nothing more to seek, then and only then can acceptance truly begin to set in.

    Be encouraged. Peace to you and yours

  5. I hope the letter arrives soon and the Consultant can give you some answers – you deserve that.

    In view of the tone of his previous correspondence and your dealings with him, I suspect that he will be unable to help further as the medical profession in the UK has tended to wash its hands of CP.

    Either way I know you are strong enough to bring acceptance.

    1. You are right, I will probably have no choice, but I am okay with whatever the outcome will be. I know more than I did, so I am happy with that.

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