I think, certain kind.s of cerebral palsy need to be addressed, such as; Ataxia (which I have) It is perceived as being intoxicated from people that do not understand especially Law enforcement an security personel. Officer's and other enforcement Should have the necessary training to be able tell an actual intoxicated from a ataxic cerebral palsy person........I know, there is probably not much of a difference.

Not that other cerebral palsy's aren't important, cause they are, It's Just with ataxia it's not so obvious that something may be wrong with the person.

There should be an ataxia awareness month just like cerebral palsy awareness month, But, unfortunately, ataxia is rarest cp, so there's really nothing being done for that specific cp, There's more awareness, for: spastic, spastic dysplesia, Hemi,,,,,,,,,,,,etc.

Thank You

Thanks, guitarman79! I don't know anything about Ataxia since what I have is the spastic, but I'm glad you mentioned it. I just told a friend this morning that I would like to build a "library" (for lack of a better term) online where anyone can access it to find out symptoms and side effects about the various forms of CP.

I agree that there should be training or at least a general understanding by anyone (including medical personnel) who deals with someone having CP.

I've been checking out other CP blogs where people, like on this blog, are frustrated as well about the lack of support such as research, effective therapy, and just knowledge in general about CP. Thanks again, you gave me something to add to my "list" of things I would like see addressed.

Katali,
Your welcome.....Here a link to a website that tells You all about ataxia and the other cp's: www.ninds.gov It describes al the cp Listed A Through Z (every disease)

Correction, The website is; ninds.nih.gov

Thanks, guitarman79. I knew about the NIH website, but haven't looked at it lately. I'll check it out again.

My daughter is 16 and has spastic diplegia. For me, I would like to see ALL forms of therapy and surgeries, making sure to include the ones that are not "mainstream" so to speak. Maybe even including FB pages or websites or groups that include families (or firsthand accounts) that have used them and where we can ask questions, etc.

Examples include:
ABM Therapy
EFT Therapy
PERCS/SPML by Nuzzo or Yngve
Alter-G Treadmill
Lokomat
Natural Supplements

Maybe a part of the website can also include financial, etc., such as SSI, wills/trusts, how to help/protect the disabled one financially, etc.

When it comes to teenagers and young adults there's little information and little detail. At one point I was trying to find out what kind of CP I have but I gave up. I don't know how my CP was when I was a baby. I don't feel like asking my doctor about what kind I have. I wish there could be different kinds of tharypies or something like that that you could learn how to do by yourself or video on line for people with things like tremors. There are some places like where I live where people don't get what they want and all doctors and neurologists want to do is nothing excerpt give you things like Botox. People should know when there young the afects of cerebral palsy and the importance of doing what tharipists tharipists you have tell you to do every day. I never really new how cerebral palsy actually all affects me. A year ago I started to do research online and found many things I wish me and my parents new when I was a child. My walking could be better, my hand function might be better and my stiffness would be better. There's a lack of information available and a lack of knowledge neurologist and tharipists have. I wish I could now more now and wish me and my family new more when I was young.

I guess the people that were my tharipists did some things but still they left things out.

Hi rhiebert,

You mention many issues that have long bothered me and thus my desire to start an organization to address them. While I am much, much older than you, I was also told that I should have gotten more therapy as a child. It frustrates me that you are so young yet are finding out the same information all these years later.

As for doctors pushing things like Botox, that is an easy "fix" for them because, frankly, they just plain don't know how to help overall. Also, health insurance at least here in the U.S. is not much help either. From what I gather, since there is no "cure" for CP, insurance doesn't want to continue to pay for long-term therapy. Though, my contention is that if doctors and therapists worked with effective therapies which have help CP patients, then insurance companies might be on board. But because processes like Botox are "easy," that's what is pushed by the medical establishment.

Thanks for responding. We'll talk more later!

Thanks for the information, beachdeb. I also have spastic diplegia affecting my left side. You mentioned many issues I would like addressed especially funding sources. We'll talk more later.

I am 56 w mild CP. It seems the older we get, the worse it gets. I have to be aware of every step and fall frequently, etc. I can not find a DR who works w CP. Any suggestions as to where to look? Where do you take pilates? Home/video? It seems strengthening makes me hurt, but I need my strength!