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My experience with Mild CP, and also need answers and similar stories.

YinlYinl Member Posts: 3 Listener
Hi guys, I'm new to this forum and I've been searching for sites like these for many decades it seems. I'm an 18 year old female living with mild spastic cerebral palsy, I get seizures along with it, and not sure if cerebral palsy is a type of Epilepsy or how common it is. My seizures started recently, which wasn't caught because grand mal is hard to detect, it sucks that I don't hear much about CP, all I see is kid websites so I don't know if mine is progressive type as I'll explain that stuff later.

My problems I have is my face, unfortunately. At a very young age, I discovered I couldn't smile because I happen to also be born with Bell's Palsy, it don't effect how I blink, but I have a weak spot on my left eye. I grew up with a poor receded jaw and unable to smile. I also have a deep raspy voice for a female and it is weak. It will sound loud at first then soft. And it scares people!

 I always got made fun of for my lisp and not able to use my facial muscles. So people always thought something was wrong with me. And I was born and raised in a dysfunctional family that never understood my condition. A lot say I don't act my own age, but I do, my appearance tends to appear more younger looking and been battling depression and feeling insecure with having cerebral palsy and no one understanding it. I was never able to make friends because i have poor self-esteem issues and I tend to be a huge talker, but i can't help it cause I never interacted with anyone. Spent majority of my life on the laptop searching for someone to talk to, or find answers. So... has anyone of you guys dealt with this as well? 

It really sucks, because with being paralyzed with my facial muscles, I've been wanting to go for Botox injections to relieve the painful symptoms and wanting to smile for the first time, and kind of scared of what the outcomes maybe, cause no other therapy has helped me. And no one understands me when im talking, despite my terrible lisp and I feel that my own siblings are disgusted with me. We always fought and argued, and they separated from me when they found out when I was little. So, I was always treated like I was retarded amongst peers and relatives. And told I never actually act like my own age, in reality I see myself as pretty smart. I use to compete with the spelling B, and made all A's on algorithms. I stood out as a nerd and an outcast.

Moreover, another thing I'll share is that I'm an INFJ personality type, so I tend to be very sensitive around certain people and other surroundings. I found out about it a few years back when I once had a therapist who certified me since she believed nothing was wrong with me and I'm glad she caught that, which has changed my life for the better, despite that, when I was trying to figure out why im so different amongst others, personality-wise. A lot of people thought I was on an autistic spectrum because I'm very empathic and I stay pre-occupied on things I do on my own time. It turns out, I'm completely normal, I just have a physical condition that makes me stand out so awkwardly with my face being the way it is, and finding it hard to socialize with anyone anymore. Without being told I don't know how to interact or being complained to for talking/typing so much. :/ 

How lonely can mild cerebral palsy get? And does anyone have a weakness spot in their facial muscles too? Is that common for cerebral palsy? I feel like it made me a monster.

 I can walk fine, but I have slight gait, and heavy walking, but I stand out as a zombified humanoid if I run. And I can't put weight on because my muscle tone in my legs get worse. I use to weigh almost over 200lbs when I use to be in highschool due to ADHD and depression and I remember when I almost fell into a wheel chair, luckily I had the right treatments and lost weight. With some of my experience and questions I thought to share.

I was wondering if y'all had similar things to share as well. My fear is that I'll die being treated like I'm some Frankenstein chick that's not able to ever smile, and it really sucks because the fear is so real, im already caged in and trapped with loneliness, the kind of loneliness where it feels like your soul is facing the dark night, where your doomed, and God forced you to live as a ghost to see how people's lives are, and no one will ever hear you as many times you yell, your voice echoing into a cave which couldn't echo any further because there is no air, and no one there to find you when your trapped inside, and to be seen as a human, and not a zombie. And the fear of going to public places makes it harder to breathe. I've quit school due to the constant pestering. I was treated like I was invisible, and told I'm just a pigment of a picture that is non-existent. By a rude student in gym class. And I was never told I was beautiful by anyone and my sisters always stood out, whereas I stood out as a sore-thumb. No matter what I wear, make-up or no make-up. I had to literally wax my own eyebrows to make my face look even, but not being able to smile, I changed my mind when I saw a piece of art work, that inspired me. It's by da Vinci called Mona Lisa. I look very much like her, my whole facial structure. Growing up I was always teased by my aunt's and uncle's; I use to find offensive when they said, "You remind me of Mona Lisa, you look very much like her", whatever the Artist's predictions were, since some of the ancient conspiracies from ancient aliens might be true, what if I'm the future Mona Lisa? LOOL.  And I do believe im a living testimony because I lost oxygen at birth, I could've became a vegetable, but God had healed me and gave me mild cerebral palsy. So, I'm hoping someday I can get involved at a church and share my experiences, even though the fear of being tormented is so real that, I feel that I'll still stand out as someone who is unbelievably awkward and so many skeptical people out there, and they can be cruel, even though they don't know me, as not many people knows me. 

  Lastly, I talk to some people online, but I still feel misunderstood by them, they think I'm insecure if I try to be funny, or random, or say what runs on my mind. And I don't like coming across as a self-absorbed person, I'm just lonely and I always try to share about my disabilities to feel understood. I seem to get along better with people who are mediums or are spiritual because they helped me see better of myself and sometimes what we are born with, have a purpose as a light-worker. I found mine when I realised how cruel this world is and some people need to be guided when going through hardships. 

Many people may never know what cerebral palsy is like, especially if I feel paralyzed in my own body, but I am thankful to share my experience at least and would like to hear similar things. I believe cerebral palsy saved me from the wrong people. But I hope someday I could live a life like a human, and marry someone, and become a grandmother..If only I lived in some kind of a true fairytale. heh.. especially when you had a childhood dream to become a popstar, and realized your face and vocal cords is weak and paralyzed, finding out when I was little changed my life. o;

Replies

  • CockneyRebelCockneyRebel Community champion Posts: 5,259 Disability Gamechanger
    Hi @Yinl and welcome

    I am so glad that you have found and joined our community. It is a safe place and we are always here to listen. I do hope some of our member can relate to your situation but do feel free to come aand chat anytime
    Be all you can be, make  every day count. Namaste
  • SeanchaiSeanchai Member Posts: 305 Pioneering
    edited March 2019
    I,m sure you will be made welcome by the people in this site YinL...I,m afraid we all have to live with the face we have and I,m sure there are many people would find you pretty . Its sometimes hard to socialise , I feel much the same these days . I am deaf and I cannot make conversation with others .... maybe you could find a club or group where people have the same problems as yourself . I used to play guitar and various other instruments as well as sing and play in pubs and clubs . These days I am thinking of putting my guitar in the loft as every time I see it,  it reminds me of what I am missing . What I once had and took it for granted .
    You certainly write a good letter and explain yourself well . Just because others put you down does not mean that everyone else would do the same . Kids at school can be nasty , be that to make themselves look good  amongst their peers , or to make them feel good . I think it is those people that have the problem , they obviously have no self esteem and would do and say anything to make them feel better within themselves . 
    I,m sure you will meet someone one day, someone who loves you for who you are and someone who will make you feel comfortable with in yourself.....but until then , I,m sure everyone in here will make you feel most welcome and some might even be able to relate to your problems on a personal basis . Good luck YinL.
  • Adrian_ScopeAdrian_Scope Administrator Posts: 7,407 Scope community team
    Hi @Yinl, we're so glad you've found our community and hope you'll find lots of support here. You're very welcome to get involved in the discussions across the community and you don't need to be scared about expressing yourself or sharing your experiences. In the mean time, I'm tagging our resident CP specialist @Richard_Scope into this post as he'll be able to answer any questions you might have.
    Best wishes,
    Adrian
    Senior Community Partner
    Scope
  • Richard_ScopeRichard_Scope Administrator Posts: 2,183 Scope community team
    Hello @Yinl
    Great to meet you and a very warm welcome to the community. Firstly, I would like you to know that we appreciate the courage that you have shown by sharing your story with us and I can see from what you have written that those experiences have not dulled your spirit. 
    You are amongst friends here and are most welcome to chat as much or as little as you want to! I'm assuming that you live in the USA?
    Scope
    Specialist Information Officer - Cerebral Palsy
  • YinlYinl Member Posts: 3 Listener
    Yes, I'm from the USA, @Richard_Scope  Not many people in the United States are educated over here, about cerebral palsy. All they know, and talk about is children being born, and that most are ''handicapped'', as they perceive it as. It really sucks, with how I don't hear much about Adults living with the condition, especially if it's just a mild case. All I hear is that it can affect the movements of the legs, and my condition is completely different, although similar to it. I walk normal,  i don't use walkers, or need assistance. And I can move my fingers fine. But sometimes, My fingers will spasm or curl back, but its frequently. As for my legs, I can't run like an average person. I have a scissor gait when it comes to running and I'll be out of breath fast and my upper wind-pipe close to the back of my throat; will start hurting and I'll have to sit down and use a rescue inhaler. When I was born, I had to have a gavage tube to resurrect me because I wasn't breathing, and my pulse was completely gone. Which I am very lucky I was able to survive that, and I didn't have to be a vegetable. The problems I developed when I was a baby, I happen to be a premie, and I couldn't hold my neck upright, because my jaw will slump over towards my shoulders. My milestones were normal.

     I had caught onto things pretty quickly, I was always getting sick and had trouble sitting up. I had swallow tests done when I reached up to 5 months old because I would choke--When I got older, my lower jaw, shifted progressively by the time I reached thirteen years old. My whole face has been a problem since I was young. Hard time moving my facial muscles to smile, and not being able to keep my head straight, it will slide against my shoulders, almost like I'm laying on top of my own shoulders? So, like is it normal for Facial problems to be a part of the cerebral palsy? I have Mild Spastic Cerebral Palsy. My condition isn't like anyone else's, but very similar. My weak spot is on the left side of my body. I get Grand Mal Seizures, had them when I was little. Here recently; I'm beginning to notice more things with my cerebral palsy. I was told, when, I age more; ill notice it more. So, when I'm sleeping, I get these very vivid dreams. Sometimes I'll be inside of a bus or a vehicle, and the scenarios change to graphical, it either crashes, or it becomes vivid and I see blood. I'll usually wake up, finding myself having a seizure, one part of my head is blocked? I'll be able to hear, but it is like I'll be ''blind'' and my whole body will become paralyzed''. 

       Can you inform me about all of this and if this is all normal?

     And are rashes normal as well? I've had them all of my life. If I get a cut or something, I'll break out into these cystic pimple-like rashes, liquid fluid will sometimes come out if I scratch. I went through these awkward things throughout my life, and I know about my own condition, it is just that I never hear much about it. and I don't know why rashes are common with cerebral palsy. As for my jaw, I was born with an extremely tiny jaw that didn't develop and I have no chin, and there's a hole in the bone of my jaw, where I'm supposed to develop a chin at. Like its deteriorating. I saw the inside of my bone where the hole is on the x-ray, and my facial muscles I'm unable to relax them. They are locked in and feel very stiff. Only thing I feel on my face is my bottom lip and nose, and my bottom lip is always twitching, and my smile is very poor, so I never smiled in my life because it's very hard to do. That's all the details I'm describing. But for a better imagination when I described it. Picture Mona Lisa's face, that's what my face looks like. Except my eye sockets are darker, and the right bottom side of my cheek next to my lip has a line across it, due to Bell's Palsy. And the way my chin looks, it's very fleshy. You can't really tell by my facial deformities, but it is there and noticeable if I smile, or the way I talk. You can't read my lips, they move uncomprehendingly. How I speak, my words are pure English, there's no speech problem. Only speech problem I have when speaking, is that it's Lateral. I'm going under a procedure to get it fixed, and my tongue stays in one position because I have no room in my mouth.  

    So, what do you think with how I described with what I'm going through and how can cerebral palsy do this to me? I feel like I was born with a zombie disease, I get sick very easily, develop rashes constantly, and my hygiene is fine, as I am an independent person, living a normal life without assistance. I feel embarrassed about myself, and I don't want anyone to judge me and think that my body and face is too alien or something. o; I was never able to make friends because people always thought something was wrong with me because I'm unable to make proper body communication, such as mouthing words, whispering, or talking normal, I have to repeat myself. If I shake or nod my head, people think that I'm having a seizure and will ask me, ''Are you alright?''. I'll respond, ''I was just nodding/shaking my head....'' is all of this normal? 

     I fear I'll probably die where no one is, unfortunately looking, as I'm completely invisible, sadly.


      I'm glad to be a part of this community, but I joined to get information about what I'm going through and to find more about it because no one talks about Cerebral Palsy. There are not many able-bodied people like me out there who can speak out and be able to say what it's like to be like this, and I'm completely normal, not mentally-challenged, nor anything similar. I'm currently; fixing, to get into writing a novel, and I'm currently selling artworks locally. ^ I just feel absolutely miserable with this condition, I'm always wanting to fade into another reality, and constantly sleep. When I wake up there is a disappointment, and I'm paralyzed in a waking hour. If I try to use my vocal cords and say what's on my mind. People always assume I'm talking about something, asking a question, or complaining. When I'm always trying to join in on the same topic as their speaking and when it comes to laughing and carrying on a conversation, I find myself yelling at everyone because they thought I was talking about a tree when the conversation could be about a car. And I'll be talking about a CAR, as well. It's like my voice is too soft to be heard, and it hurts when I use it. As for non-verbal conversations, I'll be typing/texting about something and I can't help that my brain is scrambled. I tend to type long or talk long because it been my problem since birth. I don't have a forward mind where I am able to chop down sentences. I'm physically and mentally unable to do that. My words don't come out as I expect them too, my vocal cords will fail, and I'll yell it out, because of my spastic issue. And no, I don't have Tourette syndrome,  I can relate to those who have it because my voice box is so weak and when I think of what to say and say it, I'm muted from speaking. And I'll have to work my muscles to say it, and how I'll work them? I have to clear my throat to do that, to relieve it. My voicebox wouldn't be another problem if my jaw wasn't pressed up towards the roof of my mouth, and my voice box is all the way down there. That's why I'm getting a procedure done and botox on my facial muscles to relieve some of the pressure on how I'll move my face, and maybe I won't work too hard on my throat anymore. 
      
       Did Cerebral Palsy make me this hideous? I know I should be thankful I'm alive, and able to walk, but I went through school like this and was harassed because everyone thought I had something wrong with me and I was tested for everything, and all results came negative. Teachers thought I was being abused because of me not smiling in class, and how dropped my lips are, which I look unhappy. And that's decriminalizing someone with a medical condition who can't help it. Thank you so much for your support.

  • YinlYinl Member Posts: 3 Listener
    edited March 2019
    It's really disturbing with my condition. I can't help that I'm a quiet person, when I try to socialize I become paralyzed and stuck. I try to say something that won't come out then I find myself slip away where my thoughts are the darkest and when I'm in the moment, I'll find myself sit for what seems like hours, still like a doll. Its like I'm here, and then I become frozen. It's painful when you're around loved ones and friends that never understood or noticed the paralysis. I get told I'm quiet or no one believes me because they don't see it then they assume I'm not comprehensive like i'm stupid or something. And I have to remind them I'm not.
  • Richard_ScopeRichard_Scope Administrator Posts: 2,183 Scope community team
    Hi @Yinl
    I do not believe you are hideous! I think that you have not been supported enough. I'm not familiar with how the medical system works in the U.S. but is there any way you could ask your doctor to refer you to somebody where you can talk about all of the things that you are feeling?

    What do you think would be a good starting point to make things better?
    Scope
    Specialist Information Officer - Cerebral Palsy
  • Crumble_RhubarbCrumble_Rhubarb Member Posts: 19 Listener
    Hi, I have mild cerebral palsy, I think you sound very like me in some ways. I don't have bells palsy or sezires though.

    However on the side that the CP affects I do have muscle weakness in my face- when I smile that side never does up and high as the other, smaller cheek muscles and also I have found my head will rest on my shoulder particularly at night my ear touches the shoulder.

    I too was bullied at school as no one saw me as "disabled" because on "good days' I can walk normally, my elasticity on my hand isn't as bad as others I have met with it. But especially  if I ran people said I ran 'like a chicken' or if they say my dexterity in finger movements its obvious. 

    I think its just  something  we all with disabilities  go through not only the affects on on physical  quality of life but also out mental and emotional  affects. I am a very self conscious  person partly because  of the CP and how I perceive  how others see me.
    It's ironic that what we think others see is actually  not what they see- let's face it school is an awful place for bullying  when you are medically sound. Just  remember It's not you that's the issue is a society issue. Keep talking  about  how you feel and get support too. We all need it.

  • Crumble_RhubarbCrumble_Rhubarb Member Posts: 19 Listener
    #Spasticisty on my hand
  • Richard_ScopeRichard_Scope Administrator Posts: 2,183 Scope community team
    Hey, @Crumble_Rhubarb
    I'm really sorry to read what you went through during your school years. I experienced physical and emotional bullying whilst at secondary school due to me having CP and using a wheelchair. Everybody deals with these things differently but I'm here to talk things over with you if you would like?
    Scope
    Specialist Information Officer - Cerebral Palsy
  • Crumble_RhubarbCrumble_Rhubarb Member Posts: 19 Listener
    @Richard_Scope thank you for the offer to chat that would be nice.
    This forum seems fab for emotional support. :)

    Sorry to hear about your experience too, school is rough! Hopefully these days as understanding of disabilities is increasing all kids become more understanding- one can hope. I think people don't realise the impact it causes when your already dealing with medical needs.

    I put my experience up mainly for the OP as a young adult it's good to hear that it's not just you who has these experiences and thoughts and others know exactly what you are experiencing. 

    I am doing okay now- well in the grand scheme of things, getting support from local services, raising a child etc but it can still feel socially isolating at times.
  • Richard_ScopeRichard_Scope Administrator Posts: 2,183 Scope community team
    Hey, @Crumble_Rhubarb How's it going? you are a parent too? I have an 11-year-old daughter
    Scope
    Specialist Information Officer - Cerebral Palsy
  • Crumble_RhubarbCrumble_Rhubarb Member Posts: 19 Listener
    Hi @Richard_Scope, am alright thanks. How are you? I have a 6 year old daughter. 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,183 Scope community team
    I'm really well thanks, @Crumble_Rhubarb. Wow, 6 years olds buckets of energy if I remember!  So your daughter is in year 1 and back at school?
    Scope
    Specialist Information Officer - Cerebral Palsy
  • Crumble_RhubarbCrumble_Rhubarb Member Posts: 19 Listener
    @Richard_Scope, yeah loads, lockdown and shielding is/was not her friend!

    Her school aren't back yet until the new term, still only key workers and vulnerable so still only has me for company for a while- hasn't was another child since 20th march bless her.
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