Good Discussion on CP Family Facebook

Hi all,
I am posting a discussion that is on Cerebral Palsy Family on Facebook. ( a group I started on FB to get people linked to this blog!) I think it is a great discussion. I am hoping for more discussions and comments like this both on this blog and FB. This was one of the reasons I started this blog, to make contact with others and discuss things, share information, etc .
Blessings:)
Amy

As an older adult with CP who walked without a walker or any assistive devices until I was 31 years old, I am curious about Nick. I am an athitoid CP and although I did not walk independently until the age of 9, it was virtually painless when I did acquire the ability to walk. If I had the type of pain Nick describes, I don't think walking would have been worth it since a wheelchair gives me as much mobility and freedom as walking did. I'm just wondering why he feels that it's sooooooooooooooooo important to walk? More than likely, if he is having so much trouble now, his walking days will be limited. Besides, the majority of people with CP who have that type of surgery experience more pain later in life than if they would have if they never had the surgery. I guess I would like Nick to know (if he doesn't already) that whether he walks or not, does not change who he is. If he chooses to go through the pain and walk for awhile, that's fine! But it is equally fine if he chooses to put his effort into something other than walking. Good luck! -comment by Renee Wood

Renee,Let me say, as Nick's mother, and having had countless discussions about this subject with Nick, I completely agree with you that it does not change who he is. We've told him that so many times, I can't count. Functionally, we know (and we think Nick knows too) that walking isn't the most efficient way to get around. It's not fast at all, it's painful per Nick, I don't think it's that safe for him (falls, etc.) but ever since we can remember, this has been a goal of his. We thought he'd outgrow the desire as he matured and gets older, maybe he will. We stress the importance of using the most efficient way to get around, whether it be his wheelchair or Segway, both of which he uses frequently. He uses the Segway (with a seat) at school and the wheelchair most of the other outings we go to. Anyhow, we have kind of let him determine what he wants to do. We think the most important thing is comfort and efficiency for Nick to be functional and to be able to meaningfully participate in his life. I will pass this message on to Nick. I'm sure he can offer some insight into his desire to do these things physically in spite of the pain. As a parent, nothing is harder than seeing your child in pain. I appreciate hearing from you. I think it's important for Nick to hear from others who experience similar challenges to his own!:)Amy

Comment By Nick:
Hi Renee, Alright, so as you know there are a couple different types of CP, mine seems to just get progressively worse as I get older, so i'll always be in pain. But from the beginning, Ive always tried to live my life to my fullest potential, and and i've tried to make myself as non-CP as I can be. Now, that doesn't mean i'm not happy with who I am, i couldn't be happier, but the moments where i'm able to do the same things just like everyone else, are the better moments in life, the moments where i feel the most accomplishment and the most comfort. Now walking, yes it is the most painful thing i've ever worked for in my life, but, um, there is no way to describe why I would go through hell and back to achieve it. But you said you achieved walking, and for you it was painless, it's something that was given to you. and i'm happy for you. but without the pain, it causes you to ask that. i'm, sure you're grateful for it, but without the pain, you don't get the same feeling of accomplishment, of hope, of confidence knowing that if you can achieve this in the conditions that were given, then you can achieve anything. Walking is something that is taken for granted sooo much. Using a wheelchair may be easier for you and give you more comfort, but for me, my legs, which are a part of my body gives me more freedom then having to move around in a chair. I'm not saying any way is better than the other because we're all different, but that's just for me. Thank you for listening Renee, if you have any ?'s i''d be pleased to answer them. Nick

Comment by Renee:
Ok, thanks Amy. I'm just curious - I mean some non-disabled people want to climb Mt. Everest as a goal for whatever reason. . It's not like I don't think he should try, I just wondered it's so important to him. I look forward to his answer!

Comment by Amy:
Renee,Oh I totally understand why you are asking. I didn't think you were saying he shouldn't do it. I understand. I think it is just the differences in people and as you know, CP affects everyone differently, and as you said, everyone has different goals. Nick, being a lover of sports, has always wanted to be physically active, the one thing that is the hardest for him to do. Also, he is competitive by nature I think. (mostly with himself!) Even his PT can tell you, when he was a toddler, he had this "attitude" of "determination" like, "I'll show you what I can do!" kind of thing, ever since I can remember. We've always told him, you have nothing to prove to anyone and that he is "perfect" to us, just the way he is, even if he never walked a day (or anything else) in his life, he'd be perfect to us. Anyhow, I REALLY do appreciate the question/discussion. I think it's good. This is just what I wanted for this group. Amy

To be continued......( I hope)