?

Log in

CP Livejournalers
Recent Entries 
To join this community:
Membership for cerebral_palsy is moderated.  Once you have requested to join, your approval is based on one of the following:

1) You have a journal on LJ that is at least a month old.  With content. If your journal is "friends only" please see number 2.
2) Barring that, you can choose to post a comment here telling me why you would like to join the community.  All comments on this post are screened. 

Membership will be approved once one of these two conditions are met (if appropriate).

Should you so choose, you can also email the mod at a_dawn@livejournal.com

I apologize for the inconvenience, but due to spam and general trolling it has become necessary.

Thank you!

cute kitties
I haven't used LJ in years, but I have this question as I am vacationing in Washington DC in a few weeks. This will be my first time going through metal detectors while wearing an AFO brace. It does have metal, but no more than your usual belt or so. When I search google it only comes up with airport security (and taking off shoes) and if dental braces set off detectors. What I'm thinking is I may tell them about my AFO ask if I could go through to see if it sets it off (as I'd rather not have to do pat downs if it's unnecessary). What have been your experiences?
26th-Nov-2013 07:58 pm - Gaming on the Xbox360
Oneandonlytara
So I'm considering getting an xbox360. I'll be heading to best buy tomorrow to check out the Xbox One on display to make sure I can work the controller with one hand. I have mild CP and can't really use my left hand all that great. I know about the trigger buttons on the controller and the left/right buttons. I can use a SNES controller with one hand with no problem and also the Wii remote. Games that require the nunchuk for the wii are iffy as I don't have the dexterity for navigating with it AND the Wii remote simultaneously.

If you're in the same boat, can you shed your experience? I'm looking at games like Dead Island, Skyrim, Tomb Raider, Grand Theft Auto and some Lego games in particular.

Thanks!
24th-Nov-2013 03:34 pm - Cold and poor circulation
From LJ Group TooCuteIcons

Hi!

How do you all deal with the cold winter temps and poor circulation? I wear ankle,foot, orthotics(or braces or splints) that come up to just below my knee. I also wear the long socks that go with, but I can't seem to keep my legs/feet warm. Winter is just starting and I can't handle it :(

Thanks!

From LJ Group TooCuteIcons
Hi Everyone:

I need some tips/advice. If you live in WI, that would be totally awesome, but if not I will still accept your thoughts/tips and advice :)

I am having some issues with my PCW hours/ care agency. I am using a care agency because I do not know enough people to hire PCW's on my own and have enough for regulars and back ups. I am in my late 20's, work, go to grad school, serve as a board member for an association, volunteer, bowl in a bowling league as well as try to do social things with my friends and family. I need PCW cares to get me out of bed, showered, dressed in my chair every morning and then to put me to bed and toliet me at night. My PCW hours come through Medicaid/Title 19. I get 4 hours and 45 minutes per day. I have an aide here from 7 am to 9:15 am then for a while I had them here from 2:30-4pm and either 9:30 to 10:30pm, 10-11pm or 10:30 to 11:30 pm depending on my schedule. Now that it is summer, I have my night cares set for 10 pm Monday through Thursday and Sunday and 10:30 on Friday and Saturday. I have also dropped the 2:30-4 shift because I am not home. There are days I have to be up at 5:30 or 6 am for an appt or to go out of town for the day, but that occurs maybe 2x a month.

When I first moved out 6 months ago, they had one aide covering all shifts 7 days/week for about 2 months then they finally brought in a second aide. The first aide called in a lot over the 2 months and beyond and was eventually fired. When the first aide would call in the agency either tried to send me back to my parents house or would send fill-in aides. When the agency fired the first aide they had a new regular here with in a day or two. Things were going great until she left about 3 weeks ago. She left because she moved about a half hour away and was starting an internship for school. Before she left, she trained a third aide who decided after a week, she could not handle my care schedule because she had 3 additional jobs (Nannying jobs) in addition to working as a CNA and needed 10 hours of sleep per night. 2 weeks ago a fourth aide was trained to take over for the third aide. On day 2 of training with my regular aide, she asked him if he had tums because her stomach was not feeling well. He did so he went to the car and got them for her. The next day she was on her own and did a GREAT job. I was very happy. Well, the next 2 days of her shift she called in sick and I had fill-ins again. She showed up that weekend for her shift but told me that Saturday the hours were making her sick and on Sunday she said she may be moving to Appleton to take care of her grandparents. Her next scheduled shift was 7 am on 6/19. She was a no call/no show and they had to send a fill in. This made me late for work. I get it thing happen no big deal. Since that has occurred, they agency is forcing me to go to bed earlier. Last week I could cooperate with them cuz I didn't have much going on this upcoming week, it looks as though I am going to have fill-ins Wednesday-Sunday and because of commitments I have I can not be flexible with changing the time.

A few questions...

1. is my time schedule not right for someone my age? Should I be getting up later and going to bed earlier?
2. Can the agency force me to change times and give up activities/life?
3. Are all care agencies this way?

PS...This is my first ever experience working with a care agency. Before I moved, my parents did my cares, which they can no longer do on a regular basis,
16th-Apr-2013 06:49 pm - Um, No...
cpsurvivor
Burton police say 7-year-old special needs student died of complications from cerebral palsy
http://www.mlive.com/news/flint/index.ssf/2013/04/burton_police_say_7-year-old_s.html

Um, No... CP doesn't not have 'complications.' It's not a disease. You can have complications from diabetes. You can have complications from heart disease. Hell, you can even have complications from HIV/AIDS. They're all DISEASES!!! CP is a CONDITION!!! Chances are, he had an epileptic seizure and died from that.

I'm not saying it's any less sad or tragic from a possible epileptic seizure, but CP wasn't the MAIN cause.
Ginny
Yeah, so. Check out the Wikipedia entry for "vanishing twin" (warning: there's a pic there that some might find squicky). Under "See also", the entry lists "Chimera" (makes sense!), "Mosaicism" (also makes sense!), "parasitic twin" (definitely makes sense!) and... yes, you've guessed it: "Cerebral Palsy".

What?

What?

Everybody sing!



Seriously, though... am I totally off here? I don't get what CP has to do with those other things, do you?
Julia, Harness, Working
I was recently hired as a Disability Access Consultant at a large university. I have many students with physical disabilities on my caseload, some of whom probably have PCA services. My question for those attending college or working is this. How do you handle those tasks that PCA's would do if you are only allotted a certain number of hours each day? For instance, if you're only allotted hours in the morning, how do you handle those tasks the rest of the day? Thanks!
26th-Oct-2012 01:32 am - Acupuncture
I think I've posted about this here before, but I can't find the entry. Have any of you tried it and did it work/help in any way?
12th-Jul-2012 10:26 pm - I just watched Eva's movie.
me
BRAVO! I wished it was longer. 
bitmoji short wink
I know I have shared this group with others (and do), but there aren't as many people on LJ as there once were...

Some other outlets I know:

You Know You Have CP When.... (Facebook group)

youknowyouhavecpwhen (Tumblr)

Some cross-site collaboration could be good, too. :)
This page was loaded Feb 26th 2017, 3:07 am GMT.