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Cerebral Palsy, it affects me in more ways than you’d think

rebeccaturnerrebeccaturner Member Posts: 4 Connected
edited September 2019 in Guest blogs

My name is Rebecca Turner. I am 26 years old and I have Spastic Diplegic Cerebral Palsy. I am a Postgraduate Communications student and freelance writer. I love anything pop culture related and keeping up to date with politics.

 

Cerebral Palsy is more than having a limp or being in a wheelchair. There are a range of secondary conditions that come along with it. As a child, I didn’t realise I was having difficulty with everyday tasks. Things that had become second nature to me were getting pointed out, with these being completely different to how others would complete a task.

I started to recognise the differences when part of my day at preschool was spent hooked up to a nebuliser due to my asthma. Also, when I first went to school I was given ‘special’ scissors as I was struggling with my fine motor skills. Similarly, I spent half of my time repeating myself because teachers and classmates were unable to hear my soft and breathy voice.

As an adult, I have become very aware that I am not alone, and this is thanks to the online disabled community. I have found this comforting as I’ve never met people with the same type of Cerebral Palsy as me before, so making these online connections has helped me feel validated.

My swallowing, breathing, fine motor skills and anxiety are four conditions that impact me the most day to day.

Swallowing

Swallowing is a tough one. I’ve found that sometimes straws help and sometimes they don’t. There are times where I think I am sitting up straight and I can choke on my food. However, there are times where I am more slouched, and I don’t choke. It’s like a game of Russian roulette. 

Sometimes, the uncertainty of symptoms is scary, but I can’t spend my time focusing on it too much otherwise I’d be anxious all the time. As for dealing with these difficulties, it’s not fun but I can’t change it. I always try to see what works best when I do choke and use that to help the next time, with it being an ever-learning process of understanding how your body works.

Breathing

Lack of breath support has been the thing that frustrates me the most. I either sound like I have just run a marathon, this is when I excited about something, or I get told by strangers that I sound ‘sick’ on a daily basis. I understand the point of these comments, but they aren’t helpful or necessary. It made school and work scenarios harder as my lack of projection had an impact on speeches that I gave. It caused a knock to confidence, with this only being restored when someone finally listened to what I was saying. I just want to be treated just like anybody else.

Fine motor skills

Another daily struggle of mine is fine motor skills. This impacts my life in a range of ways: what my writing looks like, how fast I type, washing my hair, and doing up zips, buttons and ties. Cooking and cutting is definitely not my forte. I would love to be able cook my own meals, but I am too scared of burning myself and breaking hot plates full of food. I’m so grateful to have a family that helps me out wherever needed. A special shout-out must go to microwaveable meals, thanks for the independence you give and you’re quite tasty too.

Anxiety

Anxiety is a condition that coincides with Cerebral Palsy. For me personally, I think it came from insecurities and having to prove my worth in order to feel normal. This was in many scenarios that ranged from doctors, friends and in the workplace. Anxiety isn’t a feeling I’d wish on anyone, but having Cerebral Palsy is like a full-time job. it’s not surprising that these feelings of insecurity, fear and anger creep in and try to kick us while we’re down.

What has this taught me?

Secondary conditions are a fundamental part of life when you have CP. I’d put them on an equal level as walking, tight muscles and speech. This is because, if you ignore swallowing, breathing issues, fine motor skills and anxiety, it will negatively impact your quality of life. I understand that’s it’s tough and easier to throw these to the side and keep pushing, but if you acknowledge them it will help you manage your body.

If you want to follow me, my Twitter and Instagram is @turnerebecca.

Have you ever had any experiences of secondary conditions? How have you responded to comments from others about your disability? Let us know in the comments below!

Replies

  • April2018momApril2018mom Posts: 2,869 Member
    Not me personally but my son has!

    His primary diagnosis is spina bifida but he was also born with bilateral clubbed feet. His biggest delay is gross motor skills. I have responded calmly to questions about him by asking my son (he uses a wheelchair) "These people are curious about you dear. Would you like to tell them a bit about your impairment or not"? This is my go to coping mechanism reserved for public places only. It works. I love your guest post @rebeccaturner. It sums up my feelings perfectly too. You sure have a way with words.

    Spina bifida for my son means he has no leg function at all. I tell people that. But for other people with SB it means more than having to use a wheelchair. I've heard stories of kids who were L4/L5 with severe communication and breathing issues. My son is bulls eye L1 and is one of the lucky ones with minimal issues apart from bilateral clubbed feet. 
  • rebeccaturnerrebeccaturner Member Posts: 4 Connected
    Thanks so much for sharing your story! I’m glad my words resonated with you. 
  • April2018momApril2018mom Posts: 2,869 Member
    Thanks so much for sharing your story! I’m glad my words resonated with you. 
    No problem! My son is almost 3 now. I forgot to mention that earlier! Do you have a blog or not? 
  • rebeccaturnerrebeccaturner Member Posts: 4 Connected
    I do have blog - turnerebecca.wordpress.com. Haven’t updated for a while but new posts coming soon. Keep your eyes peeled. :) 
  • AndMacAndMac Member Posts: 27 Pioneering
    edited September 2019
    I have hemiplegic cerebral palsy. and it's chiefly my left leg that's affected. I am 61 now, and for most of my life I was very physically active, with minimal impacts from my limp. I didn't even have a shoe raise.

    Then I got arthritis in my hemi-hip, kept this at bay for a while, but tendonitis put paid to exercising.
    This was the cue for the worst symptom of all, muscle spasms. These are in my hips and thighs,(adductor and flexor spasms)  and are horrendously powerful. As a result of these I now need a zimmer frame. and I can't have a hip replacement operation, My hip is now displaced. with a four inch shoe raise needed (up from an inch). My muscles have bulked up to fight the spasms.  My thigh muscles rival Geraint Thomas's.

    Still,I am  still able to live independently. and because my arm isn't affected, I can do all tasks requiring two hands independently. I work from home now, after spending 12 years teaching in the community. Before that, I was a registered childminder.

    I tend not to get comments now.  I've had the odd one, curious as to what my exact disabilty is, and I explain.. It's both arthritis and complications from my cerebral palsy.
  • April2018momApril2018mom Posts: 2,869 Member
    AndMac said:
    I have hemiplegic cerebral palsy. and it's chiefly my left leg that's affected. I am 61 now, and for most of my life I was very physically active, with minimal impacts from my limp. I didn't even have a shoe raise.

    Then I got arthritis in my hemi-hip, kept this at bay for a while, but tendonitis put paid to exercising.
    This was the cue for the worst symptom of all, muscle spasms. These are in my hips and thighs,(adductor and flexor spasms)  and are horrendously powerful. As a result of these I now need a zimmer frame. and I can't have a hip replacement operation, My hip is now displaced. with a four inch shoe raise needed (up from an inch). My muscles have bulked up to fight the spasms.  My thigh muscles rival Geraint Thomas's.

    Still,I am  still able to live independently. and because my arm isn't affected, I can do all tasks requiring two hands independently. I work from home now, after spending 12 years teaching in the community. Before that, I was a registered childminder.

    I tend not to get comments now.  I've had the odd one, curious as to what my exact disabilty is, and I explain.. It's both arthritis and complications from my cerebral palsy.
    Ouch!
  • redchicken43redchicken43 Member Posts: 48 Pioneering
    I also have Cerebral Palsy and has not effected me too much throughout my life, however I have found the in recent years my fine motor skills have deteriorated and the spasticity increased in my legs not sure what is round the corner. Certainly get the odd look that occurs on a daily basis, but on the most part people rarely comment, at least not to me directly. Probably the biggest challenge is approaching the disability issue with employers and have never really found the correct balance. Tell them up front and make feel uncomfortable or not say anything leaving them thinking that I have something to hide.
  • berhoadesberhoades Member Posts: 4 Listener
    Hi Rebecca! I am an occupational therapy student and I am a caregiver for a girl with CP. I joined this forum to learn more and connect with others in the community. I really appreciate your post and honesty in your experiences! I was wondering, have you ever had help from a speech therapist for your swallowing and breathing? Did you ever see an occupational therapist for your fine motor tasks? Would just love to know if it was helpful or not! I also appreciate your discussion about anxiety. I never thought about how someone may experience anxiety as a secondary characteristic. You’ve helped open my eyes and educated me so thank you so much!
  • rebeccaturnerrebeccaturner Member Posts: 4 Connected
    berhoades said:
    Hi Rebecca! I am an occupational therapy student and I am a caregiver for a girl with CP. I joined this forum to learn more and connect with others in the community. I really appreciate your post and honesty in your experiences! I was wondering, have you ever had help from a speech therapist for your swallowing and breathing? Did you ever see an occupational therapist for your fine motor tasks? Would just love to know if it was helpful or not! I also appreciate your discussion about anxiety. I never thought about how someone may experience anxiety as a secondary characteristic. You’ve helped open my eyes and educated me so thank you so much!
    Hi there. I did have OT alot as a child but funding dropped off as a teenager and i've finally started seeing one again recently so it has been good to reconnect with those services once again. I am glad you enjoyed the article.
  • chiariedschiarieds Community Co-Production Group Posts: 9,087 Disability Gamechanger
    edited September 2019
    Thank you @rebeccaturner for such an informative post & your insights into paying attention to the additional problems you've faced.
    I have Ehlers-Danlos Syndrome (the hypermobilty type), a disorder usually diagnosed by a rheumatologist due to painful joints. This is secondary to over-use of the joints after ligaments have continually stretched too far. It's also comparatively only recently being understood by (some) in the medical community that we may additionally have problems in many other areas; neurological, digestive, urological & mental health to name a few.
    The more I read, the more I feel that we share so much in common in how our conditions affect us, e.g. pain, debilitating fatigue, poor sleep, anxiety & depression. Hopefully we can therefore learn from each other too. Thank you for helping Rebecca..
    @April2018mom, my son has bilateral talipes, & my middle granddaughter, unilateral talipes.


  • LaughingLollyLaughingLolly Member Posts: 101 Pioneering
    Secondary conditions are a part of disability full-stop. I wish doctors would recognise this more and stop trying to treat the secondary conditions as if they were primary ones 
    A laugh a day keeps the psychiatrist at bay. 
  • Richard_ScopeRichard_Scope Posts: 2,829

    Scope community team

    Thanks for your great blog post @rebeccaturner. Cerebral Palsy can often feel like an additional full-time job.  

    Scope
    Specialist Information Officer - Cerebral Palsy

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