Starting a survey for adults with CP

[ryotboi]

I would like to request your help in starting a survey for adults with CP. If you have any questions to be included in the survey, please respond to this posting at your convenience. If everyone including the moderator agrees, then I'd be happy to volunteer to start posting the questions listed as future topics. Or, perhaps it would be better to

Comments

More thoughts...

[ryotboi]

Some more questions to add:
Under co-existing conditions, retinopathy of prematurity and GERD.

What was your birth weight?

Do you use any mobility devices? n/y

If so, which ones? cane, walker, wheelchair, scooter

For how long? All my life in the past 1-2-3-4-5-6-7-8-9-10 years

Here is also another issue:
With the sensory issues (seeing, hearing, seizure, etc) and others conditions brought up in this questionnaire, it is often difficult to tell what is an indirect result of CP brain damage and what is just a co-existing condition with having CP and/or being born early/at a low weight. The point of the survey, in my mind at least, is not to prove if the chicken or the egg came first, but rather to give providers and advocates a heads up with all the different issues we do or could have to deal with at some point in our lives, as we become veterans lol of the aging process.

I look forward to your suggestions!

[a_dawn]

Hey, would you mind throwing this behind an LJ cut tag? It's a little long for people's friend pages.

[maccaj]

I'm of course ready and willing to help in any way you need.

You've probably thought of this, but just in case, we need to start with current age. :) Gender is a stickier issue - it may or may not prove relevant in the final number crunch (I'm guessing not, statistically speaking) but we probably should throw it in anyway for completeness sake... hormones do play a role in OA, so there might be a greater spread in CP among genders.

Also, in the question "how CP affects you" we need to list muscle spasms, fatigue, speech and dexterity/fine motor issues.

[ryotboi]

a-dawn or someone, how do you do an LJ cut?

thanks, maccaj for the other questions as well :) tomorrow i will cut n paste all this onto a word doc so that i can add as we go along and then place them as polls and questions on a new yahoo group.

[nightengalesknd]

you take the place where you want to start the cut

and you put <>

between them you type lj-cut text="WHAT YOU WANT THE LINK TO SAY"

then at the end of the text you want cut, you put <>

and between them put /lj-cut

Just to clarify (oops!)

[ryotboi]

For now I would like to hear straight up suggestions for survey questions. Then, in about two weeks, I'll post the final draft (with LJ cut) on here and a yahoogroup list. That way, everyone can respond at the same time and we can organize responses better, with the least amount of LJ postings.