It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cerebral Palsy Message Board

  • "Girlie" question

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 01-22-2007, 01:45 PM   #1
    Steffers2318
    Veteran
    (female)
     
    Steffers2318's Avatar
     
    Join Date: Mar 2005
    Location: Pittsburgh, Pennsylvania
    Posts: 449
    Steffers2318 HB User
    "Girlie" question

    Ok, I have diplegia and my legs are affected much more than my arms. However, I have always had trouble putting my hair in a ponytail. My hands just don't seem to "work right..." I can't hold my hair with one hand and twist the elastic with the other without my fingers tensing up. It's really annoying because I think I look better with my hair away from my face but can't do it myself.

    Anyone else with diplegia have this problem, or is it all in my head? Anyone have any tips? They need to make some kind of a tool for that or something.

    Last edited by Steffers2318; 01-22-2007 at 01:46 PM.

     
    Sponsors Lightbulb
       
    Old 01-24-2007, 07:02 AM   #2
    Spaz Girl
    Junior Member
    (female)
     
    Spaz Girl's Avatar
     
    Join Date: Oct 2006
    Posts: 17
    Spaz Girl HB User
    Re: "Girlie" question

    I always had trouble putting my hair in a ponytail, and my legs are affected more than my arms, too. It probably has something to do with the muscle coordination. All I can say, is keep trying!! A couple of years ago, I set my mind to learning how to put my hair up, and though it took awhile, I finally did it! Now I can put my hair up easily. I'll be rooting for you!

     
    Old 02-03-2007, 01:47 AM   #3
    alliesox
    Newbie
    (female)
     
    alliesox's Avatar
     
    Join Date: Feb 2007
    Location: Langley,BC Canada
    Posts: 7
    alliesox HB User
    Re: "Girlie" question

    Hi 'girls'....I`ve been cruising the internet for nights now looking for...I don`t know. I just found out that my 9 month old daughter has CP, we were told diplegia. I would love to know more about you girls because I`m so overwhelmed with what this means at this point. She 'appears' like most of the other babies we know at this point, she has been delayed in the sitting up, but is sitting up fine now. Her arms and hands 'appear' fine, she grabs toys, hair, etc as much as other babies her age. Babies her age are starting to crawl, and we can tell that isn`t going to happen anytime soon. We`ve called her a 'lazy baby' up until we found out a few days ago. The Dr said that her hips and hamstrings seemed really good, and it seems to affect her feet and ankles the most, but I still don`t know what this means. I understand we are not going to know her abilities for years from now, but I`m wondering what I can be looking at now, hints I guess, I don`t even know what I`m asking.I`m told that the fact that she has no problems eating, doesn`t drool much, tongue doesn`t slip out, that she probably won`t have speech problems, is that true? How mild is mild? When you say that your arms are not affected as much, how affected are they? Do all diplegias have their arms affected, is it possible to not have your arms affected at all? I`m sorry to be asking all this stuff, and I understand if you think I`m being too intrusive, its just that I`m on wait lists to get to see the proper Dr, etc and the waiting is killing me. Are you girls in wheelchairs, crutches, braces, etc...your ages...how severe is your CP considered, I have so many questions and can`t seem to find answers, but reading your posts, you seem to be the kind of girls that could help me with ideas and stuff to help me make my little girls life easier. I apologize in advance if I sound ignorant in anyway, I`ve only know a few days and I`m very overwhelmed...we had no idea of the news that we were about to receive when we heard. Also....how did your parents know you had CP? Did you have developmental delays, or did they know from birth, etc
    Anything you can tell me would be so helpful because what I`m finding on the internet isn`t helping....Thanks

     
    Old 02-03-2007, 03:00 AM   #4
    yankeegirl
    Member
    (female)
     
    Join Date: May 2005
    Posts: 79
    yankeegirl HB Useryankeegirl HB Useryankeegirl HB Useryankeegirl HB User
    Re: "Girlie" question

    Hi Alliesox,

    I am a classic legs-only-affected CPer. As a result my arms are wicked, wicked strong. I can do anything I want with them. They do all the usual stuff plus sometimes make up for what my legs cannot do, such as pushing me up off the floor. So yes, it is possible for one's arms to be totally fine in this situation.

    My mother found out something was wrong with me when I was in the early walking stages, I think. I'd have to ask her but she's not here. I will try to get back to you on this one. I know she had to see several doctors at several hospitals before she got the right assessment of me. They scared the daylights out of her because they made it sound like I was going to be in really bad shape.

    It is no easy road, especially emotionally. Obviously you care about your child's physical condition, and that is important. But I'm the biggest advocate in the world of helping your child with confidence/self-esteem all through her life. She needs to know she is valued and needs the ability to mix in with other people without feeling she is less than they are in any way.

    But as far as the physical, see ten doctors if you have to. Find one who you can talk to, who cares and gives you the straight facts without glossing them over. Then look into at least physical therapy and probably some surgery to loosen muscles. There are so many variables; it's unpredictable. But we're experts here so you came to the right place!

     
    Old 02-03-2007, 03:11 AM   #5
    yankeegirl
    Member
    (female)
     
    Join Date: May 2005
    Posts: 79
    yankeegirl HB Useryankeegirl HB Useryankeegirl HB Useryankeegirl HB User
    Re: "Girlie" question

    Steffers,

    I know what you are talking about. I don't have tensing when I try to do ponytails etc., but it is mentally difficult for me to do things behind my back. I cannot tie an apron behind me, for example. I can tie my shoes in front of me so it's not the original process. It's a brain thing I don't understand--doing something from a different perspective than usual.

    I also have this problem when driving. At intersections I have a lot of trouble remembering/understanding all the things people coming from other directions could do. I can only think of where I'm sitting and which ways I could go, the different colors the light could be, etc. When there are people around who want to cross the street at the same time, it gets even more complicated! I have to worry about all their possibilities, too! I don't know if I'm explaining this well. Don't get nervous, anyone; I haven't driven in two years. Scared to death of it for these reasons as well as others.

    Hope I helped you out!

     
    Old 02-04-2007, 03:48 AM   #6
    alliesox
    Newbie
    (female)
     
    alliesox's Avatar
     
    Join Date: Feb 2007
    Location: Langley,BC Canada
    Posts: 7
    alliesox HB User
    Re: "Girlie" question

    Thanks yankeegirl...if you don`t mind my asking...what are your limitations?

     
    Old 02-04-2007, 06:00 AM   #7
    yankeegirl
    Member
    (female)
     
    Join Date: May 2005
    Posts: 79
    yankeegirl HB Useryankeegirl HB Useryankeegirl HB Useryankeegirl HB User
    Re: "Girlie" question

    Okay, I'll tell the story backwards. I'm 31 now. In 1/2005 I had a bilateral varus osteotomy. This basically means I had both my hips operated on because my femurs were twisted inward in the hip sockets. They were straightened out as much as they could be. As a result of this operation, plus another one a year later to take the plates out of my hips, I am not doing as well now as I did for most of my life. At this time, as has been the case for two years now, my balance is not great. This means I am walking around the house holding onto everything as I go by. I can take a couple quick steps without holding on, but certain muscles are so weak and tight that I would never do it without something right there to grab. When I go out I have two canes for balance. I COULD go with one, but I would be twisting myself around so much I think I would destroy my back. If I go somewhere where there is a lot of walking involved I do have a wheelchair, but I only use it when necessary because it's hard to find elevators and it's embarrassing to me. I have a lot of psychological issues related to this, lack of confidence being number one.

    Before the operations I was using one cane at times, but I didn't have to have it. It was safer for me because I was still dragging my toes then, making it possible for me to trip and fall at any time. I was driving when I had to, though I was scared of it.

    When I was pretty little I had one brace on each leg. One fit right into my shoe and only covered the bottom of my foot. The other went up to my knee. I wore braces to bed. One night I had one that kept one whole leg straight, and the other was up to the knee. Then the next night I'd wear one that kept my knees apart. These braces were to stretch the hamstrings and adductors at least.

    In summary I am limited by tightness of hamstrings, quads, and adductors, at least. My toes are curling up a lot and overlapping when I go to sleep for some reason. I have weak quads and abductors (abductors weaker since surgery, don't know if it will ever change). I have ankle clonus which means my right foot will shake like mad if my toes hit a surface first. I have stuff going on with heel cords and calves too, but I couldn't even tell you what it is.

    I hope this helps you and does not overwhelm you. I get into writing on these things! You can ask me more if you want!

     
    Old 02-04-2007, 07:46 AM   #8
    Steffers2318
    Veteran
    (female)
     
    Steffers2318's Avatar
     
    Join Date: Mar 2005
    Location: Pittsburgh, Pennsylvania
    Posts: 449
    Steffers2318 HB User
    Re: "Girlie" question

    Thanks for the info about the behind the back stuff, yankeegirl

    Ok, alliesox, I definately don't find your questions intrusive...that's the kind of stuff that would be helpful for you to know. I also think it's important to be able to talk about one's "problems" without being embarassed, something that will also be helpful to teach your daughter (look in the thread "how do I tell my son he has CP?" for my rant on that )

    Anyways, I have dipilegia but my arms are also somewhat affected...they are contracted (which means my muscles are so tight that they can't be fully stretched/straightened) at the elbow at about 30 degrees, but my hands work fine to write and stuff like that.

    My legs are contracted at the knee (hamstrings) more and also at the hips from my hamstrings being tight for so long...I had surgery to lengthen/loosen my hamstrings two summers ago. I've also had surgery on my Achilles tendons and adducters (muscles in the groin). All of these have helped me to walk better. I use a walker or crutches and also a wheelchair for long distances.

    I suspect my dipeliga may be "moderate" because I had an SDR (which is where they cut some nerves in the spinal cord to lessen the number of messages that make the muscles contract) and I still cannot walk independently. I'm not sure about when exactly it was found that I had CP but I know my mom has said it was early on.

    Other than that, I have no mental or speech problems. One of the biggest issues for me and I'm sure others is self-confidence, but if you address that early on it shouldn't be a problem.

    Let us know other questions you have.

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    im young and i feel like im "stuck" Ms Harriet Relationship Health 142 11-18-2004 02:14 PM
    Signs that Im just the "other" woman papergoods Relationship Health 17 04-05-2004 03:55 PM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 12:03 PM.





    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!