[fusion_text][dropcap]L[/dropcap]iving with CP now a days is usually pretty okay, I am happy with who I am, and I feel I get to use the CP and the experiences it has given me, to help people, especially on this website. I will admit however that I am noticing physically that I´ve lived with this condition for 28 years now (minus 5 days when I’m writing this). Seeing as everyone seemed to really like the top 5-list format of the last post, I see no reason to change a winning recipe. So here are the top 5 things that I am noticing have changed since I was younger.

1. Energy level and energy usage

There is no point in beating around the bush. This is by far the biggest change I noticed compared to when I was say, 15. I get tired way more easily, and when I get tired, I get really tired. I would describe it almost like influenza symptoms if I push it too far. My body starts to ache; I find it difficult to think straight, and in general to concentrate on anything. Thankfully, changing my job to working even more of a desk job than my previous job, has helped quite a bit. In my previous job as an IT technician I would tire a lot faster due to walking and lifting etc. at work. That resulted in me only being able to work a 50% position. Now I can work a lot more before I feel tiredness, and that is good. I need to do something and be productive to be happy.  I’ve found this side of the CP to be difficult to communicate to others though. They see the obvious sings of the CP, they don’t see the fatigue and low energy. I remember that I used to be afraid of others thinking I was lazy, back when I first encountered problems with this during high school.

2. Lower mobility and increased stiffness.

Although I will still consider myself plenty mobile enough, since I can achieve what I want, I do notice a significant change in my mobility compared to when I was in my teens. My feet are usually stiffer; I notice that especially if I try to play soccer now, I’ve lost a lot of the “fine touch” I used to have in being able to control my feet. They don’t rotate as easily to either side, and they are generally tougher to control. I suspect also that my achilles tendons are “regressing” quite a bit, I can feel that they are shortening and fighting up. That is something to be expected though, and it reminds me that I really should get better at stretching a lot more often. Even though I’ve always found that quite boring I must admit.

3. Cramps.

Yep, simple as that. I can’t remember having cramps in my feet when I was younger, if I did it was most surely a rare occurrence. Now, I get instant cramps if I tense up my musculature, especially in my feet. That is not such a great combination when you consider my hypersensitive startle reflex. 🙂 I guess this one fits pretty well into overall increased tightness and spasticity though

4. Motion sickness.

Now, I can’t 100% say that this is due to my CP, but I have some reason to believe so. I used to have motion sickness a little when I was younger, but not as bad as it can get now. And its not just general motor sickness after a long car ride, I get physically disoriented and dizzy if I ride a bus for example. I have mentioned this to a few doctors and they say it can very well be related to the CP. They say since it is tied to balance issues, if my balance has worsened (spoiler alert, its the next point) that can increase the likelihood of me experiencing problems with motion sickness

5. Reduced balance.

As mention in number 4, my balance has decreased somewhat. I notice that I fall over more easily than I used to. Mind you I never had a stellar balance really, but it’s noticeably worse now. Living in icy Norway can sometimes be a challenge, but I was smart enough to invest in shoes with metal spikes underneath, so now I can walk on the ice without noticing much, which believe me, is a God send. I remember that I used to fall several times each winter; it’s really a wonder that I have never broken anything. I’m thankful I thought myself falling techniques though (karate is great for this).

This is my first little taster post on the late effects of CP. There will be more detailed ones to come in the future! As always, I´d greatly appreciate it if you share and like this post if you found it useful. As it really helps in making the site grow![/fusion_text][imageframe lightbox=”no” lightbox_image=”” style_type=”none” hover_type=”none” bordercolor=”” bordersize=”0px” borderradius=”0″ stylecolor=”” align=”none” link=”https://cpexperience.com/shop/” linktarget=”_self” animation_type=”0″ animation_direction=”down” animation_speed=”0.1″ hide_on_mobile=”no” class=”” id=””] [/imageframe][three_fourth last=”yes” spacing=”yes” center_content=”no” hide_on_mobile=”no” background_color=”” background_image=”” background_repeat=”no-repeat” background_position=”left top” border_position=”all” border_size=”0px” border_color=”” border_style=”” padding=”” margin_top=”” margin_bottom=”” animation_type=”” animation_direction=”” animation_speed=”0.1″ class=”” id=””][/three_fourth]

76 Responses

  1. I have a 13 year old daughter who has spastic diplegia. It’s great to read your story to see what her future holds. Thank you!!

  2. Thanks 4 this i am 15 and i have spastic dyplegic (spelled that wrong) CP and this gives me a lot of insight on what is to come in terms of my disability thank you

  3. Thanks you very much for sharing your experience. I have A two Almost three years old boy with cp (diplegic spasticity). We are looking for a sdr near montreal. When i read your post i’m really happy to get more insight about his future but in same time i have to admit that my mom heart still crying. I expect my son will be happy and courageous as you are. Your mom should be proud of you.
    Sorry for my english i’m only good for reading in english because i’m speaking french!

    1. Merci! I think your English is fine, don’t worry. 🙂 Im glad you find my posts useful. I can only imagine how it is to handle CP as a parent, and I understand it can all be a bit overwhelming and difficult to handle, and if my writing can help in any way i am happy. Good luck with your son!

  4. hello i’ve read your post and im so grateful to read more of your experience having a cp,,i have a daughter 4 yrs old no verbal speech diagnosed mild cp and now im trying go her to specialist..

  5. I felt SO ALONE in the fatigue aspect of my CP. No one else I know is going through that and you described it perfectly. Thank you SO MUCH

    1. Hi Liv and thanks for commenting! Im glad this helped you, I felt alone on this aspect of the CP as well, it wasn’t discussed very much so it took me a bit by surprise when I started really encountering fatigue problems.

  6. i have a daughter who soon will be 46. CP. Non verbal. Uses sign language her life is happy but body seem to be breaking down, falling a lot. Aches and pains from joint problems. Still walking We will enjoy your blog thanks

    1. Thank you for commenting Mary! Yes, the CP takes it toll with age, even though it is different for each person and for each type of CP, late effects do happen, and I think they are far less talked about than they should be. I hope I can continue to provide some helpful content on this blog for you and your daughter in the future, best of luck to you both. 🙂

  7. Hi Alexander,
    Thanks for posting that. I have a 4 year old with mild spastic quadriplegia who is fairly active, but I too wonder what the future will hold for him. I am 47 and also play football and identify with a lot of the signs you highlight in myself, especially the motion sickness- I get dizzy just watching a roundabout these days and can’t spin my kids around without feeling sick! Thanks, Paul

    1. Thanks for commenting Paul! Yes its not easy to see exactly what the future holds, but I hope it will be a good one regardless of any late effects due to the CP. Glad to hear I’m not alone in my motion sickness, its really annoying 🙂 I wish the best of luck to you and your son!

  8. Thank you for sharing your story. I have a 15 month old son with spastic cp. Can you give me any tips on how to help him or understand his condition better? I want to do whatever he needs

    1. Thank you for commenting Denise! The understanding part can be different for everyone, but I think being honest about it and try to normalise it as much as possible. Also if there are things that he should do that he may find boring when he gets older (stretching for example) its important to emphasis the short term benefits as well as the long term ones, as its hard to have that perspective at a young age. I hope this was helpful 🙂

  9. Read this with great interest all of the above have been happening to me for a few years but seem to have got worse over the last few months .Nobody tells you what to expect as you get older when you have CP and I 39 think this is going to be a useful sight thank you .
    Also would happily blog for you
    Regards Debra

  10. Hello there. My daughter was diagnosed with mild spastic diplegia when she was 4. She wore AFO’s until she was 19 and did many forced cast stretching over the years. To look at her you would know she had CP until she starts dragging her feet do to tiredness. She will be 23 this year and in this past year she has complained about her feet, legs and knees hurting more. Also like you said when you are tired you get really tired my daughter is the same. I wish they would do more studies on long term effects because it would help everyone understand that CP is a life long issue. Even if it was mild as a child it still effects them as they age.

    1. Hi Tina and thanks for commenting! Yes, that seems very similar. I agree that they need to do more sudies on this. I actually participated in a study as a subject on the late effects of CP here in Norway, it was interesting. Its important to raise awareness of CP as a condition that is there the entire life, and not just a “childrens condition”

  11. Thank you, thank you for this wonderful blog! My son is 2.5 years old and was just diagnosed with mild spastic diplegia with hemi involvement. He left foot is worse than his right and he postures his left arm when challenged. He currently walks independtly. SMO’s have helped tremendously with his balance. Your blogs give me great hope for his future and potential. You should be so proud of yourself and the role you have in educating people on cp.

    1. Hi and thanks for commenting Elaine! I am really glad you are enjoying the webiste and blogs so far, I hope I can continue to provide some help and insight 🙂 Thank you so much for the kind words and encouragement!

  12. During rehabs there has been a focus on what you write about in your blogpost. Fatugue and stiffness, balance. The latter are clearly connected: If you move more slowly, it will affect your balance. There are everyday-things you can do about it tough. How about brushing your teeth standing on one foot for as long as you can? Someone said on tv once that people with cp uses thrice as much energy doing ordinary things as non-disabled so no wonder you get tired. Think carefully through what and how you spend your time/activities and cut back where you see fit. Excercise tough, is very important, try to incorporate it into daily routines. Keep up the good work.

    1. Thanks for commenting Harald! I have gone through my fair share of rehab after surgeries, also with stretching physiotherapy. I am not as diligent as I should be when it comes to my stretches, but Ive recently restarted the physiotherapy.

  13. Thanks for your posts. i have a 6 y/o son w/ mild SD and I so appreciate hearing from someone who has lived with it for as long as you have. I am curious about 2 things. One, does the fatigue improve with regular exercise? I mean, can your stamina increase if you exercise? And two–do you think some of the increased stiffness is due to no longer doing regular stretching and therapies? I also have an older son with different special needs, and we certainly don’t focus on his physical issues much anymore now that he is 15. I’m sure with working you just don’t have the time or energy to do much else. I just wonder how much is the natural course of CP and how much is focusing on other things. Thanks! Liza

    1. Hi Liza and thanks for commenting! You can certainly improve your physical condition so that you have more energy, just like anyone else, even though the effects of the CP will still be noticeable of course. In my case as well I have additional stamina difficulties do to a reduced lung capacity, which is a result of being born premature.

      I am certain it would have helped to do regular stretching and exercises when it comes to stiffness. I should have done it, but I guess life just gets in the way, and I forget it in my daily life. I am going to restart the physical therapy now, to see if it can help with the spasticity especially in my feet, as it is a bit uncomfortable, so im interested to see the effects.

  14. I struggle the most with #1 too. I used to pushed myself so people won’t perceive me as lazy. Now I realized I don’t need to prove myself to no one.

    1. Thanks for commenting Maria! 🙂 Yeah, I still do think that sometimes but its gotten a lot better for sure. I think in general focusing more on doing what works for you and care less about what others think is the best way to go about it.

  15. Thnk you for writing this, I have a 2 year old son with Spastic Diplegia and it is amazing to hear how other people cope with their lives with the same conditions. I freely admit that if if this did not touch my life I would remain in ignorance of the struggles of day to day life. No one explains what life will be like as you get older so to hear it from someone who lives with it really helps. You are an inspiration and I cannot thank you enough.

    1. Thank you so much for the kind words Katherine! It is really motivating hearing that sharing my experiences has such a positive impact. I hope I can continue to do so also in the future, also if you would like me to write about anything in specific, please let me know. 🙂

  16. Hi Dear. my son is 5yrs old he has spastic CP.just reading from experience is really hurting me …to know my Son will someday deal with these things…but dont get me wrong i thanks you for sharing …:(

    1. Hello Seema and thank you for commenting! I understand at least to some degree that this must be very difficult for you as a mother. Nobody wants their children to suffer, and especially when its something that is inevitable to some degree like the late effects.

      I dont know if this is of any consolation, but at least for me, I am at peace with my CP and also the late effects at this point in my life. Sure some days are worse than others, but thats par for the course. As you grow up with CP you get better at dealing with this.

      The best thing you can do is to love your son and let him know he has your support, also when the CP seems like an enemy to battle, along with good exercise and medical follow up, I am certain he will do great. 🙂

  17. Thanks for your informative post. I have an 11yo son with spastic diplegia. He’s a few months postop SDR which released some of the spastic nerves. He still has stiff muscles and I’m sure will go through tendon and muscle release surgeries shortly. I’ve been wondering how this would progress with age. There isn’t a lot of cohesive information available. I guess because each person is affected differently? Anyway, thanks for posting and I’m glad to have found your site.

    1. Hello and thank you for commenting Katherin! You are correct in that each person is affected differentley and there for it is harder to find good information, however I also personally feel this is an overlooked topic of discussion when it comes to CP. I was pretty much taken by surprise when I first started noticing the late effects, the only thing I had heard growing up was that it was important for me to take the surgeries and do the stretching exercises for when I got older. It is quite a difference between hearing that and feeling the late effects on your body.
      If there is another subject which you would like me or some of our other writers to write more about, please let me know! 🙂

  18. I found this really interesting so thank you!
    My son is 13 and has CP, it affects him more in one leg than the other but they are both quite right so he has regular physio and has stretching splints!
    He can’t walk too far without feeling achy and tired, obviously I do worry how it will affect him as he gets older. Nice to read it from your experience x

  19. My four, almost five, year old daughter has ataxia CP, and while it’s not the same thing, reading about how you are living such a full life really gives me hope that she will too. Thank you for sharing, and please continue to do so!

    1. Hi Natalie and thanks for commenting! We are usually looking for someone with Ataxia to write for us, so hopefully you will see that perspective in the posts soon too, but I am very happy you found the site useful so far! 🙂

  20. Great read
    I too suffer from a mild form of CP and apart from the motion sickness can relate strongly with your points. I would also say another good point that I thought of was that im 37 years old now and as I finding that the wear and tear that I put my body through when I was younger is starting to catch up.

  21. Hi

    Great read- I suffer from mild semi CP and I would agree with your five points, as I’m 52years old and I find that my body is suffering now due to the wear and tear from what my body went through whilst growing up.

  22. Love your blog. My son Kristopher is 22 years old and has Spastic Quadrapledgia Cerebral Palsy. He is non verbal so your in site has help me get a better understanding of some of what he goes thru. Thank you.

  23. I have a male friend who is going to be 55 this year and battles with CP. Hoping to learn more about the struggles and what I can do as a friend. I have a medical background, but that doesn’t help when it comes to matters of the heart, and discrimination due to disability. I just hate to see such a beautiful person loss hope because he’s never met the right person. Thank you for your time that you put into this blog 🙂

  24. I’m 31 soon to b 32 i have cereral palsy when young i crawled everywhere until like 5 yrs old i have noticed a lot of bowl problem and right handed could eat drink drive my wheelchair use tv remote alot of fine motor things and seemed like overnight my middle finger on right hand looked up have had botox to help it has not the doctor’s said my spine is severely curved and i have lost lots os weight nice to read about others going though this just found this site anyone can write me that would b cool all we can do is take one day at a time which is really what everyone does live life and enjoy hang in

  25. I am 13 soon to be 14 living with a life having cp has been challenging i’ve had spinal cord surgery to get rid of my spasticity and have to have ankle and foot reconstruction on my right foot so I wouldn’t have to be in a wheelchair Reading this helps me know what to expect when I’m older thanks to you. Making this post I can know what I can work on

    1. Hi Cole and thanks for commenting! Im glad you found it useful! I always missed a place where I could learn about stuff like this when I was your age, so it is great to see this site is at least starting to become that for some 🙂

  26. Alexander,

    Thank you so much for writing this piece. I have a six year old son with CP, and most of the blogs and articles I read are written by professionals or parents. Reading from your perspective provides insight for me that goes beyond my research as a parent. I became a practitioner of NeuroMovement® to help my son by communicating through movement and connecting with the brain. As I work with him, I will keep your writing in mind. Your words are of great value. Looking forward to reading more!

    Shana Jones

    1. Hi Shana and thanks for commenting! That makes me very happy, as that was one of my main motivations to start this website. I felt the web was very saturated with medical advice and facts, and that is all well and good, but there was a lack of information about personal experiences and being honest about all of the realities of CP, so its great to see that this site is starting to serve some of that need 🙂

  27. Have a grandson that has CP. Have had his share of botox and having to wear case on both legs. I have also wonder what and how his life is going to go, as he gets older. Like to keep in touch, so I can share this with him, so he will not feel alone.He is 12 yrs old and having to wear these case, below the knees and around his ankles, for three weeks. They gave him botox in his legs three weeks ago. His balance is off and falls alot. Wishes he could ride a bike, but knows his balance is off. Thanks for sharing.

    1. Could the boy use adult training wheels on a bike? I’ve used them because of CP and never worry about falling. Good Luck 👍

  28. I’ve been a caregiver for a delightful non-verbal 57-year-old woman with severe CP for ten years. Although she is in a chair, we play lots of games involving her punching and kicking me and arm wrestling. She is still very strong and exceptionally flexible, despite the lifelong problem directing her muscles. She did have some thigh cramping occasionally for a year or so, but it hasn’t happened in a while. She takes no CP-related meds. Basically, my point is that she is just as healthy at 57 as at 47! I’m not sure these age-related anecdotes are universal, but rather, individual. I just felt the need to emphasize this because so many parents here have young children and are worried.The one concern, however, is the threat of pneumonia, due to her physiology, but a G-Tube has helped that. She still enjoys some meals, as is her preference for continued quality of life, and does well. Good luck! These changes of yours may not be permanent if you continue to exercise, sleep well, and eat healthy.

  29. Thank you for sharing this. I am a 49 year old French female with spastic diplegia. Although it was mild to start with, I can totally identify with all your points. I would say there is a vicious circle of the fatigue and stiffness increasing, which makes exercising more difficult and the less we exercise, the stiffer we get… In my case, having 3 children in less than 4 years and a condition called pubic symphisis disfunction (1 in 50 women suffer from this during pregnancy) meant I was in a lot of pain and had to stop stretching and exercising for quite a while, which “allowed” CP to take more hold on my body. If I had to advise my youger self, I would say: strech, strech, strech and exercise as much as you can!!!

    1. Thank you for commenting and sharing Isabella! I would agree with that advice to your young self, I know that I’ve personally could have done a lot better with the stretching, but its one of those things that never seem to get priority for me.

  30. Hi Alexander
    I’m so glad you have started this site. It’s good to have a place for people affected by cp to communicate, and in this case especially about the late effects, which are not generally available. In the UK it is very difficult to find a doctor who actually has any knowledge of the subject, let alone being able to advise and help.
    My daughter has spastic quadriplegia, and is managing brilliantly, at the age of 34, but I do wonder what lies ahead.

    All the best.

    1. Hello and thanks for commenting Patricia! I am glad you liked this site. The success of this post really makes me want to write more in depth about this subject as there seems to be a real need for that, so be on the look out for that in the future! 🙂

  31. hi, I love the thought you put into your details, and I know some of the things you describe also happen to those of us without cp, for example the tightness. I just tore the tendon in my calf while leaning in to buckle a child’s carseat. Also cramping muscles, my feet are prone to them too. But I’m sure they are amplified by the cp. I wish I had read some of your writing earlier. I was a teacher for ten years of children with co, and in the last two years I published two novels about a boy with cp, a narnian/ Oz type fantasy, but even though my life has surrounded itself by people with cerebral palsy, I can’t authentically feel what it is to have to live every day with it and your descriptions have that authentic ring.

  32. I found this very interesting.i have a son called joseph,he is 37 years old,he broke his hip a year ago and has found his cp is a lot worse,he has a mental age of a child,and also has difficulty in his speech.in all of this he is always smileing,he is my world.xx

  33. I am so glad you posted this. My son with cp is in his early 20’s and I have seen sharp changes in the last few years that I’ve really had no way to explain. He does not speak or communicate very well, so I am guessing a lot and this kind of information about your experience is enormously helpful to me.

  34. Thank you so much for sharing! Our son is 11 and only has a hand full of words, though he understands far more than he can say. Sometimes I can see the fatigue and he fluctuates between very alert and wiped out. Reading this makes me worry a little less by realizing that this a typical way for his body to handle the extra demands. I will certainly be reading more of your blogs. Thank you for giving Ryan, and others, a voice! God bless!

  35. I am 52 and have CP – didn’t stop me in my younger days but I can tell you it’s getting worse as I age. Especially back pain – I worked as a fast food Restsurant general manager for more than 25 years and 10+ hours a day on my feet running around for all those years…

    Thank you for your post – I sometimes think my family doesn’t understand at all as I slow down, fall, stiffen up. I’m afraid people think I’m faking!! Keep the posts coming please!!

    1. Thanks for commenting Beth! I can relate to your worry that others don’t understand. This is why its so important to talk about these things. CP is a lot more than just the outwardly visible effects.

  36. Thank you for sharing this. My mother told me about ths and i have started experiencing all of this also. May i ask what type of cerebral palsy you have. I have spastic cp and it affects only my right side. The medical term is a right side hemiparesis.

  37. Thank you for this. My daughter is 9, and has spastic hemiplegia. It helps to read about other people – not just medical stories but real people – who also have CP and have successful lives.

  38. My 2 1/2 year old daughter has ataxic cerebral palsy and has problems with balance. She falls over a lot but it is worse when tired, poorly or going through a growth spurt. It can affect her at nights too with body spasms and possible cramps. She’s still too young really to tell me so it’s all guess work still at the moment and lots of watchful eyes. I don’t know if her balance will improve as she gets older or if this is the way she will always be. She still needs her buggy or to be carried. I’ve felt a lot of uncertainty of what to expect in the future so thank you for sharing as it certainly helps to read about other people. She wasn’t able to lift her head at 6 months and so I started taking her to tumbletots and we worked on developing every single muscle in her body starting with her neck, working through her torso, then arms legs and then hips. At 14 months she started getting physio and I then managed to get her into the dame Vera Lynn school for children with cerebral palsy, she goes swimming once a week, play school 2 1/2 days a week and she has just started ballet as I have read this can help with strengthening muscles and balance. She loves them all. Sadly tumbletots is coming to an end as the lady running it is closing the business but I think she’s still doing enough. India took her first steps this January 1st which is just great. I guess the one thing I do worry about is am I getting her to do too much? Her physio has said that she will tell me if she’s doing too much and isn’t concerned but for those of you that have gone through this a lot longer. Could I be setting her up for problems when she is older? I would hate to think what is doing her good at the moment is going to have a knock on effect when she’s older?

  39. Hi my Daughter is 3 yrs old she has been diagnosed with CP for 6 months we are pritty much new to all of this and i have so many questions. I dont feel i understand it. She does have it servere but she’s recently had a growth splert and ive notice her falling more or less every 5 steps they say her bones have grew but her muscle has not yet caught up is she in any pain it would be Great to talk to sombody who has CP

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