About Me

My Story

What is it like living with cerebral palsy? I cannot truly answer that question as for 46 years of my life I never knew that’s what I had. It was only in March 2009 I was finally diagnosed.

How did I feel as the child then, the adult now? Those times were enormously difficult for me. Some days I felt isolated, angry, cheated, misunderstood and frustrated. Other days I felt insular and alone. It wasn’t something my family talked about. “There was never anything wrong with me.” It was never brought up unless I talked about it then it was quickly dismissed like hot cakes as if the condition didn’t exist. But it did!

I do not have a recollection of all the stages of my life living with cerebral palsy but I will try and piece some of my early thoughts and recollections together. I know that I first had problems at the age of two as I have a letter in my possession for a referral to a specialist, as there were many concerns about my balance. I simply couldn’t balance.

Where my twin was beginning to crawl, I would fall, try to get up, then fall again. It was never something I could control but how I wished I could. My mum noticed more or less straight away when I tried to crawl that I was finding it difficult to balance. My dad on the other hand, was not unduly concerned and said it would be fine.

I knew I was different then. I knew there were things I was struggling with. I felt different for all the wrong reasons. Although I didn’t despise myself, I didn’t always enjoy being who I was, particularly when I was in my angry phase; although every now and again I would sometimes separate the two issues. There was Ilana with the condition and there was Ilana the person.

A few years down the line and I remember telling myself that I was glad to be me. I don’t know why I said it and to this day I have no understanding as to why I did, I just know I wasn’t unhappy being me. I was unhappy with being physically restricted. I also knew that deep down I wasn’t a bad child. I was an angry child, with physical and emotional issues that weren’t going away and weren’t being addressed.

Although there were many times when I was angry, it would go on to take many years for my parents (my father particularly) to know that I was kind, caring and considerate and those times did peep through occasionally. In order to become accepted I seemed to conform more than any of my other siblings.

My mother tried to deal with me but couldn’t cope. I was always being singled out to do exercises, but it was always at a time when my brother and sisters would be doing something they wanted to do. It was never when they were doing homework. It wasn’t something I was ever comfortable with and nine times out of ten ‘I would fight the system and become angry’ at the injustice of it all. My mother would tell me I couldn’t have a beautiful face without a beautiful leg. I didn’t understand the concept because nothing was ever explained.

Questions were never asked about my condition in front of me and how the condition presented itself and why. I don’t know whether my parents actually knew, but it could be that my parents knew what was wrong with me, but found it difficult to deal with, so just accepted that I had a leg and an arm that just weren’t working properly.

There was little bulk from my hip to my ankle. I also have a dropped foot. I used to drag my leg. I couldn’t pick my leg up, so I walked toe heel all the time. When we used to go for walks my father would walk behind me and tell me to stop dragging my leg and pick my foot up, none of which I could do.

I think as a consequence, I struggled with walking in and out of a room, for fear of people watching me. My handwriting was another consequence. I couldn’t write in front of anyone. For example writing a cheque at a till was difficult, or writing something down for myself seemed to be a problem. My outlines were different and still are.

That I believe is the cerebral palsy scenario of my particular brain damage. I struggle to write with uniform outlines. My Neurologist has explained that the part of the brain that controls my motor skills functions is also affected, so that will explain the additional problems I have.

Those experiences lasted a good part of my early life. For many years I couldn’t walk into a room without seeing people watching my every move. I couldn’t also walk out of the same room without fear of people watching me. I used to turn and walk quickly so as to avoid eye contact.

My parents found asking questions difficult, questions that may have perhaps helped me; instead they would go with what was said so I became completely cut off from the outside world. They seemed very accepting of what the specialists had to say and never delved deeper to find out more. They always believed the specialists opinions, as they were the specialists. There didn’t seem to be much to unravel as a consequence.

They wanted me to be the same as my siblings. My problems therefore lay dormant for many years with the sad reality being that I didn’t cope at all on an emotional level. Apart from my exercises which I was supposed to do daily, there was no support. They dealt with me the only way they knew how.

In the 60’s disability was brushed under the carpet. I would have been considered a spastic and would have been outcast from society. I’ve been told I was lucky, because I was ignored. For fifteen years of my life I went to the hospital once a year, the athletic institute for exercises once a year and physiotherapy once a week.

All those visits seemed to eat into my childhood. I lived a somewhat insular life hiding a lot of my issues behind the problems I faced on a daily basis. Not knowing what my condition was gave me a quiet confidence that tomorrow was another day and that things would be different, I would get better, my foot and leg would somehow magically right themselves.

I always felt confident of that because I had no idea what it was I was dealing with, I was always optimistic. Knowing what the condition is now I know that will never happen. I have to learn how to deal with it properly in the knowledge that it is not something I can ever sort, in my head yes, physically no. I need to exercise daily not being able to do that will put me in a totally different place which I will have to deal with when the time comes.

Thanks to my Neurologist I have brought closure on most of what is written here. He has confirmed the points I have raised. With his help, I am in a much better place. I am more at peace with myself now.

78 thoughts on “About Me

  1. I finally have time to spend some time on here. Thanks for directing me to your site.

    Your story of isolation and feeling ‘lucky’ to be ignored because you felt so different reminds me a lot of how I have often felt. I’m grateful to have met you on DS and looking forward to getting to know you better.

    I’m going to explore more of your site now. Thanks again.

    1. Thanks Scott. It helps to know when others read my story that I am not alone in the way I have felt for so many years.

  2. I’m considering marriage with a man with cerebral palsy and I am “normal”. Any suggestions or words of wisdom?

    1. Jeanette that’s wonderful. You don’t say what kind of CP your husband to be has, so I don’t know how bad he is.

      My advice would be Just to accept that there will be things that he cannot do and may struggle with; try not to judge him and above all be patient.

      Please feel free to post again and it if it would be at all helpful we can chat by private e-mail.

  3. Great job on your blog! Wonderful writing about an important subject; living with cerebral palsy.

    I can fully relate to all the thoughts and feelings that you write about! I too, have cerebral palsy. I couldn’t walk until the age of 4 and endured gruelling physical therapy in my younger years.

    I have written about my experiences in my memoir, Someone Like Me – An Unlikely Story of Challenge and Triumph Over Cerebral Palsy. I kept my CP a secret to join the US Navy and stayed in the Navy for 20 years without telling anyone about my condition.

    I look forward to reading more of this blog. It’s so important to get stories out there to show what is possible.

    Thanks so much.

    1. You’re welcome. Thanks for making contact and for telling us of your own experiences.

      It’s very hard to believe that in 20 years no one in the Navy cottoned on that you were dealing with and had CP.

  4. This is a great site you have created to educate people on your condition. Don’t give up and I know you will keep fighting. You have my support in whatever you need.

  5. Very well written and thought provoking. I can relate in so many ways. We will learn to cope better daily and life will seem like life again.

    Wonderful and beautiful!

    1. Thanks for coming on the site and responding to ‘my story’ and for your wonderful comments. I am sure that although my story is unique to me, we all have stories that seem similar even though they’re different.

      I believe the emotional ties to what we deal with, make it so.

      1. Thank you for talking with me through emails and Facebook and now this.

        It’s like a safe haven to come to and get the support we all need, because so many others don’t understand. Hope to talk to you soon.

        1. Hi Bonnie and welcome to the site. You’re so welcome. It really is lovely having you on the site and to talk with you also.

          It helps so much when we can support one another through our experiences on what we deal with. Without the support it makes what we deal with so much harder.

    1. Welcome to the site and thank you for reading my ‘About me’ Story.

      It would be lovely for us to have support from one another.

  6. This is perfect! I too have mild Cerebral Palsy and there never seems to be anyone to talk to about it. It’s nice to know that other people with CP feel the same way.

    I can relate to your story. I went though hours of physical therapy and brace fitting as a child and all I ever wanted to do was “fit in” physically with everyone else. Now I am 34 years old and married with a young daughter.

    I still struggle to “fit in” with my family physically (riding bikes, hiking, etc), it’s tough, but I am working on it and my husband is very helpful.

    Thank you for creating this blog so we all can share our thoughts and ideas on CP. Kerri

    1. You’re welcome. It’s nice to have you on site Kerri and to hear a little about what you deal with.

      I think when we deal with something like CP it’s very easy to feel that we don’t fit in; but part of the problem I believe stems from others not learning or knowing how to fit in around what we deal with.

      I don’t think it comes from us at all. We’re just being us. It’s others who struggle to know how to be okay with us.

  7. I have also experienced being stared upon from people whenever we go someplace. I don’t know if they are just pity of my situation or degrading me.

    I can relate so much to your story. It is really hard to be imprisoned in your own body.

    I remember when I was a child I wanted to go to the mall, but just stayed at home because I was afraid that people would stare at me as if I was an alien.

    Then at my school I was always being singled out in every group activity, always being left also at our room during PE class.

    It is so nice to read your story, there are so many resemblances to mine.

    PS: Merry Christmas to you and your family. 🙂

    1. Hi Kimmy… it’s great hearing your own recollections of what you had to deal with in your childhood and to know that we’re really not alone in what we think and feel about what we deal with.

      I know we cannot change other people’s thoughts about how they deal and treat us, but I know my experiences have made me a lot stronger emotionally. Given time Kimmy, hopefully you will use your own experiences to change how you perceive your life.

      We cannot change the past, we can only change how we perceive ourselves. I believe that fundamentally it needs to happen if we are to find peace.

  8. You’re not alone, far from it. I’m a little older than you and I’ve had similar experiences. I can especially relate to your situation with your mother. Mine was a model and was always disappointed in me.

    Since my CP makes it impossible for me to hide, I decided years ago to start doing my best to look good and as a result found a definite improvement in how others interacted with me.

    You’re welcome to check out my blog at http://spashionistareport.wordpress.com.

    1. Thank you for responding to my About Me Blog. I agree that it’s important for us all to take care and look after ourselves. Our health is certainly not a guarantee without it.

      Whether we have CP or not, whether we look after ourselves or not, whether we look good or not, to me it has to be immaterial to what’s right and what’s wrong. I can’t help but think that others should have interacted with you as you were.

      Doing your best to be accepted is not the same as just being yourself and being accepted. I really do think it’s a shame that society puts the pressure on us to conform just so that we will be accepted somehow.

      Thank you for your blog address. I certainly will take a look.

  9. Dear Ilana,

    WOW, I love your blog!!!

    What Can I Say? first, I’m shocked you got diagnosed at 46 years old… this is unbelievable.

    I feel grateful to be born in the 80’s right now. I’m 24 years old and I have CP Spastic Diplegia. I got diagnosed at 1 years old because my mom had a feeling there was something wrong with my balance, mother instinct.

    Anyway I’ve been living with this handicap since then and I had bad times too, but I had really good times too!! One year ago I went to a dance summer intensive in Oakland, CA with Axis Dance Company. I wanted to fulfill my dream and dance.

    This was awesome and revealing for me. You can’t stop dreaming of a better life.

    Keep posting, I’ll follow your stories.

    from France

    Maylis xx 🙂

    PS : Someday, CP people are going to rule the world!! but not tomorrow… because there’s physical therapy!

    1. Thanks Maylis, welcome to the site. I love your sense of humour it’s inspirational.

      I agree with you that we should always follow our dream, but it’s even more inspirational when we follow our dream and live with a disability.

      I would love to get to know you more.

    2. Maylis your response to my blog has certainly put a smile on my face. Thank you. Your attitude to what you deal with is an inspiration. Of course it helps to have support around you and from what you say here, you certainly seem to have had that.

      You’re right, it’s important to be able to dream and I love the fact that you have managed to follow your dream’s path. It doesn’t matter what we deal with, I still believe with empathy and support in place we will certainly deal with our problems a whole lot better.

      With me not knowing I had CP until the age of 46 has made it more difficult for me, but there was never a moment that went by in 46 years where I never gave up trying to find out, what it was I was dealing with.

      It’s lovely and I must thank you for contributing and supporting me on my site now. I would certainly love to support you back… take care of yourself.

      1. http://maylislovingthings.wordpress.com/

        Sorry, I have made a mistake typing the address of my blog! I hope you’ll like it, it’s a lot about dance, but there is a lot of insight in cause for one year.

        I’ve been dealing with depression, ups and downs, but dance helped me and still does!

        So you are welcome from the support! I know that I had the chance to have support from my parents, my sister and my friends, but sometimes I’m tired of being an “inspiration” and I’ve been seeing my other face, the sad Maylis, who is frustrated sometimes.

        I have found the balance between my two sides. Since I had depression, I know myself better and I’ve been happier with the simple things around me and learned how do deal with bad thoughts and dance.

        Sorry for the dear diary moment, but I just wanted to make sure that you understand that I’m not that positive girl that you think I am.

        I am like that to deal with life and because Ive been really down before, you have to be positive but you have the right sometimes to feel frustrated or depressed cause yeah you could have been worse, but hey you could have been better too.

        It’s about finding the balance and just enjoying the little moments of happiness in Life. 🙂

        1. I love this account of you Maylis. Being honest about dealing with depression and finding a way through with something you love is the truly inspirational part.

          I agree with you that being inspirational all of the time would be like standing on show, always being the life and soul of the party; but the realities of what you deal with won’t always make you feel that you are an inspiration. I love the fact that you can be one thing, then be something else too and the fact that you’re not sulking completely, but doing your best to work through your not so good days is inspirational in my eyes. You’re willing to have a go and that’s important, instead of hiding behind your condition.

          I will go back and have another look for your blog. I’ve left you a message.

    1. Maylis I have tried the link you gave me for WordPress so that I could read your blogs, but could not work out how to get on to your blogs once I got on to WordPress.

      I hope you’ll respond back with more details for me. Thanks… Ilana 🙂

  10. Hi, Ilana, my name is Joseph. Your story touched me very much; reading it was like looking in a mirror. My parents did not tell me I had Cerebral Palsy and I found out about from my Godmother just a few years ago.

    Growing up, I was told just that I had a weak left side, whatever that meant. So, yeah, I had that too. I know what you mean. I recently found out that the particular name for my kind of CP is Schizencephaly.

    I was not placed in any kind of special classes or school. There was a good and bad side effect to this choice. The good was that I felt more ‘normal,’ and the bad was that perhaps special classes early on could have given me better coping tools to use throughout my life.

    I am trying to build a good life for myself, despite my CP, chronic back spasms and depression. I have a blog I write on often. I have three books I have published through CreateSpace and one play.

    I am struggling with selling more copies of my books, writing more books and improving my writing. Some days are better than others. (Today I am having a challenging day as my body spasms everywhere, while my writing assistant types this.)

    I am very happy to have found your blog. I’ll definitely be a reader from now on.
    Take care.

    Joe

    1. Joe welcome to the site and thank you for getting in touch. I feel the same way about my education although I’m not sure about the special classes. I think it would have been good for the extra help in class though.

      Like you say help would have given us coping tools to help us through our life. It’s not right though that you didn’t know what you were dealing with either. Not all of us cope well. Perhaps this was a deciding factor in your parents failing to tell you too. I believe this was a factor for my father in particular.

      What you’ve done Joe is truly inspirational. Keep up the good fight.

    1. Nisha welcome to the site. It’s lovely when those of us who have CP can relate to the other person’s story. Thank you.

      Ditto on your thoughts. I think you’re absolutely right. I have also found other people, who don’t share the same or similar experiences with me, do tend to have issues with what I deal with.

      It’s not to say people don’t try to understand, but unless someone walks a mile in our shoes, I’m not sure they do really can understand what it feels like. If they did, they would be more sympathetic.

  11. I have always been told that I may have cp. Poor motor skills, abnormal gate. I was officially diagnosed at fifty years of age. Still reading …

    1. Thanks Leonard and welcome to The CP Diary. It’s never easy being official diagnosed and having been diagnosed rather late for me too, we’ve had to live through the years where we have had absolutely no idea what we’ve had to deal with and that’s hard.

      I hope that now you have your official diagnosis you can at least bring closure on your diagnosis, even if it takes longer to bring closure on your acceptance of the CP itself.

  12. Hi Ilana, I just found your blog. Wow, what a story! I have CP and want to share my article about selective dorsal rhizotomy (SDR) with you and your readers, as it may be very useful.

    I had SDR two years ago, just shy of 40, and I am living proof that SDR changes lives! I now advocate for it so that people with CP know it may be an option for them.

    http://www.huffingtonpost.com/nicole-luongo/sdr-life-changing-surgery-for-cerebral-palsy_b_5615021.html?utm_hp_ref=impact&ir=Impact

    1. Hi Nicole and welcome to The CP Diary.

      I am sure those of us with CP who perhaps would benefit from Selective Dorsal Rhizotomy would love to read your article, particularly if it may be of benefit. Thank you for sharing your link with us.

      It will be lovely to have you back on The CP Diary again.

      1. Hi Ilana, I’m sorry for the late reply, I just saw your comment. Thanks for the warm welcome.

        I’m still advocating for cerebral palsy awareness and SDR. my article has helped so many adults and children learn about and have SDR. I just celebrated my three year anniversary since having the surgery on March 29th.

        1. Thanks Nicole. No problem. I’m pleased your experiences are helping others too. I’m also pleased your operation was a success and hope you continue to go from strength to strength.

          From your response, it sounds as though your experiences have been completely positive. Thanks for letting us know.

  13. Hi Ilana, This is one of your buddies from Daily Strength. I just wanted to say I can relate to every one of your emotions and struggles as a kid. It’s hard for me to understand why none of the ‘specialists’ you saw as a kid didn’t diagnose you simply from observation.

    Anyone with education in a physiological related field, from physical therapists to general practitioners should have been clued in. However, it’s awesome you finally received closure. Better late than never… Right?

    My folks were Physical Therapy Nazis… if you know what I mean. My dad built platforms for stepping, bought squeeze grips for squeezing and bench press assemblies for lifting. Once, he even had a tool shop weld finger loops onto a steel guitar’s slide bar, so I could fulfill my childhood dream of playing guitar. He also got me into golf and baseball.

    My mom would put a sock on my good hand when I was in my highchair and pour cheerios on the tray when I was really hungry. If I was going to eat I was going to have to do it with my CP hand! As I got older, she would not let me go to sleep until I did my exercises with very few exceptions. I think that’s where my temper came from!

    Looking back, I wouldn’t have wanted it any different. here is something about all the pushing that builds confidence. It’s a extremely fragile balance between confidence and anger, but it’s confidence just the same. I would take up for anyone who was in the path of bullies in school…I didn’t care how big the bully.

    I tried out and made the HS baseball team playing like the infamous MLB player Jim Abbott (born without a hand). This guy was my idol, because not only did he play pro baseball, but he pitched! At only 60′ 6″ away from home plate he was able to get his glove back on and field batted balls…incredible! You can find him on the net…he is now a motivational speaker.

    During HS and on into college I started cycling, which became my sport. It’s easy on the joints and is a lot like aquatic therapy if your decent at balance. I competed at the novice and cat 4 levels but didn’t do well because I did not have the fast twitch muscles in my right side to sprint.

    I did however compete decently in time trial events and I did several long tours through AYH. After I started my career and started having kids, I inexcusably hung the bikes up and gained about 45 lbs. This did not bode well for the CP and my joints, and standing on my feet all the time during work, with all the extra weight, took even more toll on my back and ankle… two joints that were precariously vulnerable already.

    However, in the last two years, I have lost all that weight and have climbed back on my mountain bike. I had to set it up so I could sit up straighter, but it seems to be working and I’m feeling and moving much better. It’s simply a matter of the mind…you know?

    Your involvement with DS and this blog is inspirational for us all. We all carry those unruly demons we have to whip and keep in their place. Keep up the intimate and positive sharing. It helps immensely.

    1. Thanks Charlie and welcome to the site. Having read your story, I love how you’ve pushed through the boundaries with what you’ve had to deal with; have got on with your life and have come through the other side.

      I think what your father did would scare me too! But I think you’ve done brilliantly. Your story and you are truly an inspiration to me and to others I am sure, who will read what you went through knowing that you have come out the other end, so positively.You didn’t give up where you could have very easily thrown in the towel.

      It’ll be lovely to see you on the site again. I know all of your experiences with CP will help others too.

  14. Hi Ilana, I found your blog and found it very interesting.

    I have a son, who is 2.5 years old and has very mild CP. He had a lack of oxygen at birth and has been followed closely ever since. I think his symptoms are so mild that I probably wouldn’t have looked for any problems and I don’t think his regular Paediatrician would have been concerned either, but they found it because they had him under a microscope from the beginning and have followed his development closely. If not for that, I probably would have been like your parents, and just accepted that he walked late and has trouble with his right hand.

    He does walk independently now and his gait is a little unsteady but I don’t think any random person would say, hey that kid walks funny. His balance isn’t as good as his peers and he still falls a fair bit, but he only started walking at 22 months and is still improving.

    I guess my question to you, is in hindsight, are you glad you didn’t know or do you think it would have helped if you did know? I sometimes wonder if I should not tell my son as he grows up. He is pretty much normal. He struggles with his grasp on his right hand, and like I said, his balance isn’t perfect, but that’s pretty much it.

    He does do weekly OT and PT. As he grows up, I don’t want him to feel that he’s different. I want him to think he can do anything he wants and we’ll work on whatever challenges arise together. I just wonder if it’s better not to know.

    I guess I’m worried that if he does know, that somehow it will limit his ability just in being aware that he might not be able to do certain things. Better to let him try whatever he wants and determine himself what he can and can’t do (not believe less of himself because of a label.)

    I don’t know as he’s still young but I find it interesting that you didn’t know, so any thoughts would be of interest.

    1. Hi Evelyn and welcome to the site. Having not been told that I had Cerebral Palsy and having to find out myself many years later isn’t the easiest way to deal with a disability.

      Your son will know he has physical problems. I think it important any child knows what he or she has to deal with, even if you find it hard as a parent.

      The problem with Cerebral Palsy is that it’s not just a physical disability. Emotionally and neurologically we are just as much tied to the condition. I constantly struggled with my emotions as a result of not knowing and the constant frustrations of being tied to something I knew nothing about.

      As parents we owe it to our children to be honest and upfront with our kids. Finding out a lot later in my life that I had Cerebral Palsy brought about part closure, because I could finally understand and know what I had been dealing with for all of those years.

      It’s important even if we cannot change an outcome to at least know what it is we deal with. When we know it takes the doubt, sometimes anger and concern away. Your son has a right to know what he deals with.

      Finally, knowing hasn’t labelled me in any way. Society and the stigma does that, but only if we let it. I feel liberated in knowing. For the first time in my life, I have come to understand ‘my life.’ That is priceless.

      It will be for your son too. You may not think so now, because he has a long way to go with him still being so young, but he’ll eventually thank you for it. It will also show him you cared enough to put your own emotions on hold so that you could help and be there for him.

      I hope this helps.

    1. Hi Sherri and welcome to the site. You’re welcome. Thank you for reading my story and posting to the site. I think striving to find out what I was actually dealing with as a child gave me the inner strength and determination to find out.

      It doesn’t matter what any of us deal with, it’s our emotions that link us together. We can deal with anything as long as we have the support. That part is crucial to how successful we become. In my formative years I was my own emotional support.

      Please feel free to post again.

  15. I came across this via facebook and I didn’t know I had CP until I was 30 yrs old and am 41 now.

    I didn’t know much about CP until I started joining groups that are on facebook and found out more and more. Like you I had all kinds of physical difficulties, but didn’t know why. My parents didn’t talk about any of it at all.

    I am just now finding out as well that the learning disabilities that I do have are most likely related to CP. I just want to say thanks. I didn’t start learning about the different kinds of CP and the many issues that can come with CP until now.

    I felt like I was all alone in not finding out, until I was an adult and come to find out I am not and so thank you for writing this; it helps me a lot.

    1. Thanks Stephanie and welcome to the site.

      From what you say it sounds as though your family also had difficulties talking about what you had, which is why you never knew. It doesn’t make what happened right, but at least you now know what you have and can bring acceptance on that.

      It would be lovely to have you post again. I am sure some of your own experiences will bring more clarity to others, through some of my blogs.

  16. I just found your site, and I can’t believe I’m reading about so many experiences I have had, both emotional and physical.

    I have Spastic Diplegia and never knew why, as a child. I got pulled from school for doctor’s appointments. Even through surgery, the big elephant in the room was never discussed. I learned that I have CP when I was finishing high school, much younger than some others here.

    I read a letter written by my surgeon to provide proof that I should receive assistance form vocational rehabilitation, as I started college. True to form, though, I read the letter, then never discussed it with anyone. This allowed me to slip back into the denial I was comfortable with by that time.

    It was a double-edged sword for me. I was never held back from anything, but was puzzled by name-calling and bullying I experienced in high school (again, never discussed).

    On the other hand, an important part of my life was the 20 years or so I spent playing tennis. I was very good, and competed in local tournaments as a strong intermediate level player, as well as some advanced level doubles if I had a strong partner.

    One of my biggest shocks came when I was videotaped in a tennis camp and came away feeling like I had been making a fool of myself, no clue that I really looked any different from my tennis friends!

    I’m now 58 years old, and have had a career in healthcare for 35 years. Many more difficulties have surfaced. More falling, more balance issues, much more fatigue. These have been changes I’ve been ill-equipped to cope with.

    My strong desire to ‘fix it,’ working harder in the gym, getting physical therapy has been met with a harsh reality that it can’t be fixed. I’m working through this now with a terrific counselor and still have a way to go.

    Thank you for helping me see that I am not alone as I struggle towards full acceptance of my CP and myself.

    1. Thanks Donna and welcome to my site. Yes as our cases both show, Cerebral Palsy is a journey we didn’t know we were taking or had and yet have come to know through trial and error.

      Your second to last paragraph resonates with my own thinking as a child. Because I had no idea I was dealing with Cerebral Palsy, I too thought I could ‘fix myself.’ My dream was shattered when at the age of 46 I found out that I had Cerebral Palsy through an MRI scan.

      I hope counselling helps and that you get where you want to be with that. Do we ever have fully acceptance of something like Cerebral Palsy? I think we can find an acceptance, but first we must accept ourselves first.

      Accepting ourselves first, means we’re more likely to be able to find an acceptance of Cerebral Palsy. I believe that has to come first.

    1. Hi Mahdi and welcome to the site. I think it’s a case of my parents not being able to cope with the fact that I had Cerebral Palsy and therefore chose not to tell me.

      If I had have known from a child that I had Cerebral Palsy, I probably wouldn’t be running The CP Diary now; I’m a believe that things happen the way they do for a reason.

      It often takes a while for us to find out what that reason is, these things aren’t always obvious, but it all worked out for me in the end.

  17. I am so glad I discovered your blog. I can relate to so many of your comments. You see I have CP also. I was born with it along with a twin brother.

    I have spastic hemiparesis, which effects my left side including my left foot, leg, hand and arm. As a child I went once a year to Shriners Hospital for Children in Spokane for a checkup.

    I was given exerises to do at home, but was never given physical therapy. I never heard the words Cerebral Palsy until my twenties, when I saw it written on my chart at the doctors before a finger surgery.

    I had become a special education life skills teacher. I knew what that meant and I felt such relief that it wasn’t my fault. My whole childhood I was told, if I just exercised and used my hand and foot it would be normal.

    My grandma who raised my brother and I often threatened to tie my right hand behind my back, so I would use my left hand and it would get better. When I told my twin about Cerebral Palsy, he said I thought if you just used your hand it would get better.

    Also the walking into a room anywhere someone could watch me, my left leg and foot would stiffen up so it was very difficult to walk normal looking. I wore a brace as a small child because I walked on my toes with my left foot. Then I ditched the brace.

    Recently a Neurologist wanted me evaluated for an AFO because he said I have drop foot. I wanted to know if you personally have any problems getting along with people? I have always had some problems with people.

    I get my feelings hurt easily and have social anxiety. Sometimes I wish I could live in a cave away from everyone. Do you think this could be related to my Cerebral Palsy?

    1. Thanks Deanna and welcome to the site. I can’t believe reading your story is similar to my own.

      In answer to your question about getting along with people and social anxiety. I believe having Cerebral Palsy can contribute to the problems we have socially. That said, with the right support and guidance in childhood there is no doubt in my mind why emotionally we would have to deal with either of these issues.

      Speaking from my own experience. Emotionally I support myself and continue to support myself, so I know how to overcome the difficulties that someone with Cerebral Palsy can face.

      I believe it’s more how other people choose to relate to us that cause anxiety. Unfortunately, when it comes to disability, people are never sure how to behave or what to say. That in itself can create anxiety.

      If more people we’re accepting and families got the disability and support thing right, I think you’d be a different person altogether. Regardless of what we have to deal with, all issues stem from and start in childhood.

      We start off level-pegging. What happens to us from there, shapes our personalities.

        1. Thanks Deanna. It is very comforting to know. Although you and I cannot change our history or family, knowing that we’re not alone having gone through similar circumstances, definitely does help.

          Thanks for coming on the Diary and contributing and hope to see you back on here again.

  18. Nice job on your blog. I find it very interesting to read stories and know that I am not alone with the struggles that I have faced throughout my life. I was diagnosed with CP at about 1 1/2.

    As a child I didn’t really notice a lot of things. But once I started school, I noticed that I was different because everyone else did. I was pretty miserable and withdrawn until my college years.

    In college I became involved with a group of students that had disabilities. I learned to accept myself as well as others and became a very outgoing and optimistic person. As life went on and I became successful in my career, life became easier. I still have struggles with everything I do but I don’t dwell on it any longer.

    A few years ago I had a little setback. My wife passed and I felt left alone and helpless again. But I have slowly picked myself and am moving on again.

    Thanks, I hope we chat more.

    1. Thanks Ricky and welcome to the site.

      It certainly makes it easier when we mix with people who deal with similar issues to us, because those people are more likely to understand what we go through without passing an opinion but by being more empathetic towards what we deal with.

      Yes our college years can be hard without the right people around us. I’m pleased you learned in that time to accept yourself in as well as accept others.

      Finding an acceptance in ourselves always helps with our confidence.

  19. Oh my God. Your story kicked me in the gut and helped me to see why I’m so angry at the world. And then I read comments from your contributors and the resonance hit my heart like a bullet.

    I too have a twin. I too was told to work harder and make it go away. I too cannot stand to walk in and out of a room due to the scrutiny I receive from others. I’m 42 years old and I’m so incredibly tired and depressed. I kept wondering what my problem was especially lately after a visit from my parents; who still sweep my disability under the rug.

    I have a step-brother who also has CP and never complains about anything and I have never had a conversation with him about it. His is worse than mine. I guess I need to read deeper and see what your solution to your problem is.

    It looks as if you too have had a great deal of therapy and recovery and you know the right things to say to yourself about loving acceptance. Me, I need a break and a ton of rest and I’m beginning to hate my world of deniers and ignorant people. The depression has become unbearable.

    Is there a medication out there that doesn’t interfere with CP? I’m sure a good neurologist could steer me in the right direction.

    1. Hi Alison and welcome to the site. From what you say, it sounds like you have had your Cerebral Palsy brushed under the rug too.

      It used to bother me, but I soon came to realise that the only person who could help me was me, so that’s the stance I took. I did have some therapy, but the help I got didn’t make me feel better about what I had to deal with.

      I came to realise that the people who could change our lives don’t always know how to change things for themselves, so it’s often left to us to change things for ourselves. When I came to realise that I started to change things and haven’t looked back.

      It’s amazing that you have had some of the same issues as me to deal with, but I believe you can turn some of this around for yourself. We all can.

  20. Very well written. I too have mild Cerebral Palsy. I kind of find it comforting to read that there are others out there who share the experiences and challenges that I have and they are willing to share those experiences.

    I am 58 and was diagnosed at 1 1/2 years old. I have always wanted to tell my story and have been trying to set up my own blog, but always wondered if anyone cared. This has encouraged me to move forward with my blog. Thank you!

    1. Thanks Ricky and welcome to the site. The world is made up of different people, some will care, some won’t know how to care.

      I’m pleased my site has given you encouragement. We support and encourage one another here on my site. Please feel free to come back and post again.

  21. I’m so glad I found your blog. I am 32 and have always had balance issues and recently started falling a lot more. I drive, have a job; am married to a wonderful man and own 2 dogs. I have always had this feeling that I was ‘different’ because I had to be extremely careful where and how I walked.

    I also seem to get concussions/migraines/cluster headaches easily, just from tripping on the carpet. Well my Neurologist said the other day “Laura, you have Cerebral Palsy.”

    My mom confirmed that she believes it is a mild, mild form. My question is does anyone have headaches or migraines and does anyone else have a mild case and have to be extremely careful?

    1. Hi Laura and welcome to the site. I haven’t heard about migraines and Cerebral Palsy.

      From what I know from my numerous research posts, there could be any number of reasons for why you have migraines/cluster headaches or concussions, but they are worth checking out because it’s not something you should have. They’re clearly there for a reason.

      As far as balance is concerned. I do tend to have to be careful myself. It’s easy for me to bump into things and have balance issues myself. It’s important to keep the muscles strong so that as we age we’re still mobile, but there is little information out there as to how we will age.

      Just do what you can. That’s all I do.

  22. Thank you so much for your wonderful blog. As a family member of an almost 70 year old woman with CP, I am only just realizing what her state of mind may have been throughout the years.

    In trying to find resources to improve her quality of life, I’ve found this blog. I look forward to sharing this with her and perhaps opening dialog to topics that have been overlooked for so long.

    Many thanks to all who have posted previous experiences and hopes to further opening perspectives for others with CP and their families too.

    1. Hi Beth and welcome to the site. Thank you for such a wonderful and positive response about your relative who is 70.

      One of the reasons I started my blog was because there was little to no information out there on what I deal with, so I know how your relative feels.

      I love that you’re taking an interest in knowing more about the Cerebral Palsy and am happy to help you further. I hope you’ll visit the site again. Thank you for posting.

  23. Hi, how amazing to read your post and know I’m not the only one left in the dark. I have spastic Diplegic Cerebral Palsy and didn’t find out until I was 40.

    I was paralysed as a child from the age of 2 until 10 and since then I have been diagnosed with Arthritis caused by the trauma of the accident that left me paralysed. Because of this I was given pain killers and anti inflammatory’s which have gradually been increased in strength over the years.

    It wasn’t until recently I was told I had to do yet another course of physiotherapy, the therapist said she would refer me to the Neurologist. This was a first and if it hadn’t been done I would still be no wiser.

    He felt something wasn’t adding up and said he would check my notes and there as clear as a bell was my diagnosis at age 3. No one felt the need to share this with me, growing up I was just ‘the spastic.’

    Life has been a struggle and I am in constant pain and discomfort but I have succeeded through gritted teeth. I went to college and got a Diploma, had 2 amazing children, became a foster carer and worked nights to make ends meet.

    Oh and I also climbed 2 mountains, abseiled and have done 3 bungee jumps for charity, so I think I can hold my head up high.

    1. Hi Cherie and welcome to the site. You absolutely can hold your head up high. You have proved to your family what they should have encouraged all along.

      A disability is only a limit for those who don’t understand how to work round what we deal with. There is no excuse for people’s behaviour. Not knowing, or ignorance doesn’t make it an excuse, but fast forward to 2017 and society has moved on with disability and things are slightly better.

      We can’t turn the clock back, we’d have to change our families and society to do that, but we can change our perceptions on how we see that time. I know I’m stronger for it and you are too, clearly.

      For those who are part of this scenario, they know who they are. We not only came through, we understand and have changed our lives for the better.

      Feel free to post to the site again.

  24. Ilana, thanks so much for your blog. I am almost 70 years and have Cerebral Palsy.

    I had a wonderful childhood, great parents, been married for 48 years to a wonderful supportive husband. I taught in school for 33 years and loved it very much. I retired in 2004. Since I have retired my walking has been getting worse. My physical therapist says it is just part of the Cerebral Palsy.

    Is there anyone out there around my age that can let me know if it is normal ageing, or is it the Cerebral Palsy?

    1. Hi Phyllis and welcome to the site. Yes, unfortunately difficulty in walking, is part of the ageing process with Cerebral Palsy. But there are supplements out there that can help alleviate the pain in joints.

      If you are interested in finding out more, please don’t hesitate to get back in touch. Please feel free to post again and I appreciate your response.

  25. Hi Ilana, its awesome to finally find a blog, that your story and others here share and when I read all of them, it hits home hard.

    I don’t remember either of my adopted parents telling me I had Cerebral Palsy. I remember my adopted mom doing exercises on my legs and ankles and it hurting like crazy.

    I remember screaming bloody murder every night, but again no one told me why. Also I am deaf as well, so it was hard on me as far as social wise, with people and kids even and my balance is super bad.

    At the age of 44 last year I was diagnosed with Pigeon toe feet and Cerebral Palsy, along with having one leg shorter then the other. My adopted mom had never told me this at all.

    I have stomach problems, breathing problems, anxiety, depression, the list goes on and on. Some of this I think is Cerebral Palsy related. I have tried to research it on my own. The hearing as well i believe is caused by it.

    My foot doctor ordered a walker for me on top of all that because as I have been getting older my falls are ten times worse. I am glad there are support for Cerebral Palsy, so I can learn and read different stories. Thanks again. Buffy.

    1. Hi Buffy and welcome to the site. Apart from my site and what I provide here, I’m not sure about the Cerebral Palsy support in the true sense. Unless parents and families provide children with the emotional support they need, I for one don’t know of any charity that provides emotional support in this way.

      Your particular story resonates with me because your story is so similar in some ways, different in others with the different symptoms we both deal with. How we got to find out is more or less the same and near to the same age too.

      It is hard to understand how others may fail to understand and help us in the way we need help. There are days when I tell myself I understand why things worked out the way they did, then have to tell myself that I need to keep myself focused on the truth and the fact that I didn’t know and had to work things out for myself. That never leaves us.

      Neglect is never something we can just bury as if it never happened. We must deal with that and come to terms with it. I take comfort from my site and the good it’s doing, not only for me but for others too, where as you say we can share our experiences, but it doesn’t take away the hurt fully.

      With my site, we just learn how to find an acceptance and an understanding through all of our experiences and are able to do that together. I hope you stick around to check out more of my site and please feel free to post.

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