Cerebral Palsy
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Adults with Spastic Diplegia

Tash026Tash026 Member Posts: 10 Connected
edited November 2016 in Cerebral Palsy
Hi i am a 37 year old lady with spastic diplegia. I would like to hear from people who also have this condition. What sort of things do you do to keep mobile? Have any of you noticed postural compensations with your cp? Also does anyone clench their teeth at night, causing headaches and dizziness or is it just me? My doctor is not very supportive and says I just have to live with it. I agree to a certain point but there must be things out there to help me manage my various symptoms?

(NB. Take a look at our 'physical impairments and cerebral palsy' category for more discussions like this one - Scope)

Replies

  • pantherpanther Member Posts: 251 Courageous
    Hi Tash

    I'm 38 with spastic diplegia cp the easy part of your question is no I don't clench my teeth in my sleep but that doesn't mean that others don't I guess.

    With regards staying mobile I find swimming helps though saying that I really need to start again I had to stop due to various surgeries over the past few years. I also have a manual wheelchair which I use some of the time to help with the fatigue etc. I often walk with the chair to help my mobility.

    Over the years I've been reffered to physio and ots and all sorts many eventually say they don't know what to do with me and say I'm managing well so carry on!!

    I also take medication dantrolene to help with the spasms in my legs though it's not a common tablet to use most people apparently use baclofen, but I have to be difficult I don't get on with it. It relaxed my legs too much. I also take diclofenac the combination helps with the tight muscles which I believe helps me be able to stay more mobile.

    I used to use 2 walking sticks until some of my surgeries made me to unsteady on them although I'm slowly starting to go back to them. I try to go for a bit of a walk every day either with the sticks or pushing the wheelchair which I guess also helps I also walk about at home although I tend to use the furniture often to hold onto.

    I found I had to fight for all my refferals to things like physio it tends to be a bit of a battle I've found to get support as an adult. For a time I also found yoga helped.

    At the moment I'm attempting to come off my medication so not sure how I'd be but it will just mean I'll have to work harder at staying mobile!!
    I hope some of this helps x
  • chattymossmanchattymossman Member Posts: 12 Connected
    hi i have diaplegia but never heard the words until in my 40s yes i done lots built a smallholding planted a woods so for me not dwelling on it drove me on,maybe my mum and dad were in denial of course i went to childrens hospital once a year then discharged at 15.dad was a pro rugby player and again it spured me on to ride horses bikes and walk mies with my dogs,like everyone i slowed and tightened with age but i just gotta keep going.
  • nicebootsniceboots Member Posts: 196 Pioneering
    Hi, I'm 25 and have diplegia. I walk un aided, and do quite a physical job. I have noticed I am alot tighter and more easily tired than I used to be, but I put that down to work.
    In terms of managing my condition, I have carried on with the same exercises as I did when I was younger, I still sleep in a leg gaiter to give my hamstrings a good stretch, which I have done since a young age - and actually sleep better with than without, my orthotist says stretching regularly remains as important to maintain leg length - which will lessen the damage to hips and back.
    I have recently gone back into an afo on my left leg and a dafo on my right. The afo has a raise on the heel to keep me level and I wear the dafo to support my right foot as that does most of the work.
    I have found that using adult services you really have to fight to get regular physio, hydro and orthotic input. In particular with the supply of orthotics, they seem to me to be more concerned with budgets, rather than helping maintain my mobility, which earlier in my life I had so much surgery to develop. For example, I have a pair of piedro orthotic boots to wear when not wearing splints, that need replacing and the orthotics service will not replace them because I have splints, despite me explaining that I need the support when not wearing splints, that I can only wear for a short time at work as I'm on my feet for up to 7 hours, and they do limit my agility a little.
    Hope this helps
    chris
  • sarahxoxosarahxoxo Member Posts: 4
    Hi, I'm 20 and walk unaided and had weight problems growing up. I've just started going to the gym and have lost some weight as well as improving some strength in my legs which is good.

    Sounds like I have a lot to look forward too. I'm already feeling as if I will never get as much help as some people as I'm "too good". Although I'm still in pain when I walk and once I get a full time job I will be very tired and more likely to fall over.

    I get constant pain in my ankles and back ache sometimes which seems to come and go depending on how much exercise i do, but the exercise is good for me and keeps my muscles less tight.
  • Jill2013Jill2013 Member Posts: 13 Listener
    Hi Tash I am 43. I have cp with spastic diplegia. Like chattymossman I only found out in the last few weeks that I was diagnosed with this when I was 10. I had plaster splints then but thought it was a short term condition. However I have been suffering for years without really knowing the reason why. Ive had various physio since then but not once was I able to give them my diagnosis so I dont know if this would have made a difference in my treatment. I am very stiff on a morning and have difficulty getting up. I experience pain and stiffness a lot of the time and know my posture has changed and may explain the pain in back, hips and legs and tiredness. Now thinking back the diagnosis explains so much of the problems I have had with jobs where my legs ached and I was extremely tired all the time. Im currently not working as I am a carer for my husband. I dont know if I clench my teeth at night but I do during the day when concentrating. I should have seen my doctor ages ago about this but how many times can you see they with a bad back/legs etc..... However I have now made an appointment at my doctors in two weeks to discuss my diagnosis and if they can help me in anyway or if there is anyway I can help myself.
    Is there anything I should be asking for e.g. referals/medication etc.?
  • speedyinpainspeedyinpain Member Posts: 52 Listener
    Hi Tash

    I was diagnosed with CP when I was a baby.I am now 33 years old and I have noticed changes in my posture over the last few years.

    Yes for me the muscle pain, spasms, stiffness, tiredness are part of CP for me. How the symptoms show themselves is affected my fatigue, and stress.

    The muscle spasm is managed by Gapapentin and Tizanidine muscle relaxants. I take 4mg tazanidine at night to manage spasms during the night and gabapentin to manage shoulder pain.


    Exercise really helps to manage stress and pain.

    I am very lucky that I have a very helpful and supportive Neurological Consultant

    I do not clench my teeth.

    Hope this helps.
  • surbhirbansalsurbhirbansal Member Posts: 3 Listener
  • surbhirbansalsurbhirbansal Member Posts: 3 Listener
    I am 31 years of age. I have Spastic Diplegia. I am an MBA in Finance. Currently working with a Stock Exchange in Mumbai India
  • GrandmasharenGrandmasharen Member Posts: 5
    My brother was just diagnosed with Spastic Diplegia about 3 months ago, he is 66, This started over a year ago, problems with balance when walking. He has been to 5 different doctors, he has had every test imaginable, including an MRI, which the last doctor a Neurologist diagnosed him with the SD. He sometimes now walks with a cane , He wanted a second opinion, He went to another Neurologist, who says that SD is just a symptom, He feels it is something Neurological, and he wants him to get another MRI to compare the two, Does this make sense?? Has anyone else been diagnosed at this late of age.. Thanks
  • [Deleted User][Deleted User] Posts: 128 Pioneering
    edited March 2016
    Hey Grandmasharen,

    Sounds like the pros may have got your brother a bit confused... Spastic Diplegia is a type of Cerebral Palsy, it is neurological. Cerebral Palsy is caused by brain injury at or around birth.

    The 'spastic' part of the name refers to muscle tone, and 'Diplegia' is about which limbs are affected - because CP is essentially a brain injury, the way an individual is affected depends on where abouts the brain is injured. A 'neurological disorder' is defined as any disorder of the body nervous system - so any abnormalities in the brain, spinal cord or other nerves.

    A decent explanation of CP and the different types is here: http://www.scope.org.uk/support/families/diagnosis/cerebral-palsy

    I'd encourage your brother to have another chat with his neurologist and ask them to explain things more clearly. It will give him a chance to ask any Qs.

    Interestingly, despite having it since birth, a surprisingly high number of people don't get a diagnosis of CP until they are much older. Sometimes it's because the symptoms are so mild, it's not until age catches up with you that you notice something is amiss. Others find out after their parents die - sometimes the parents have known about the diagnosis but chosen not to share it with their child, and the only time it comes out is in a coincidental conversation with the GP. This might be influenced by cultural and social ideas about what having Cerebral palsy meant for their generation - Back in the day, when Scope was 'The Spastics Society', they did a lot to challenge the idea that people with CP were 'ineducable' for example.

    Hope this helps.

    -B x
  • GrandmasharenGrandmasharen Member Posts: 5
    Hi Beth, So what Im understanding is that he has had this his whole life, but must of been a mild case?? The symptoms seem to of come all of a sudden, is that possible, and at this late in life... I should give a time frame, it has been a year and a half, he noticed losing his balance then when it got to the point he was walking like a toddler he decided to go to the doctor. The new neurologist, I think he feels it isn't SD, he wants to compare the MRI's to see if anything has changed since the last one which was in June.. I feel I keep repeating myself, we are just so upset and wanting an answer to what is going on with him.. Thanks so much for helping
  • BeckyJ123BeckyJ123 Member Posts: 6 Listener
    Hi Tash

    I'm 21 and have spastic diplegia. I walk unaided and most people completely forgot I'm disabled, which I guess was a good thing? Over the last two years I have noticed that my stiffness is getting worse. I struggle with medical profession's. No one seems to know how to help me. I keep being bounced from pillar to post. I try and maintain thinks as best I can.

    I really struggle with finding the energy to do physical activities but I find swimming helps. Horse riding too, just contact them first and most places are happy to help. 
  • samanthag85samanthag85 Member Posts: 1
    Hi all I also suffer with cp sd, it's very strange reading all your comments as I've never meet anyone else with the same condition as me, I can walk un aided. I'm 31 with 3 young children and I do find day to day I'm struggling abit more. I was trying to find out if it can get worse in time cause I'm finding out the older I get the harder things are to do, but also the more I do the my legs ache. At night is the worst, I've been physio countless times and it's helped but then feel back to square one the next day, I used to take baclofen but didn't agree with me and not had anything since.  People can't tell I've got this so kind of feel like I suffer in silence or moaning etc be nice to see any other comments people have
  • HanPadHanPad Member Posts: 6 Listener
    Hello, I am 46 and have mild diplegic cerebral palsy. Legs more than arms. I have ground  teeth at night for the last 4 years. A mouth guard has really helped. 
  • DrCPDrCP Member Posts: 2 Listener
    HI
    I am a med graduate with CP
  • ZaraWritesZaraWrites Member Posts: 27 Connected
    sarahxoxo said:
    Hi, I'm 20 and walk unaided and had weight problems growing up. I've just started going to the gym and have lost some weight as well as improving some strength in my legs which is good.

    Sounds like I have a lot to look forward too. I'm already feeling as if I will never get as much help as some people as I'm "too good". Although I'm still in pain when I walk and once I get a full time job I will be very tired and more likely to fall over.

    I get constant pain in my ankles and back ache sometimes which seems to come and go depending on how much exercise i do, but the exercise is good for me and keeps my muscles less tight.
    Hi Sarah,
    My name is Zara 26,  i have spastic diplegia, i too walk unaided.

    Just wanted to say Hi :)
  • ZaraWritesZaraWrites Member Posts: 27 Connected
    Hi tash :)
    My name is Zara. I too have spastic diplegia.
    Just wanted to say hi :)
  • DrCPDrCP Member Posts: 2 Listener
    HI ALL CP buddies !
    HAPPY NEW YEAR
    hope u all are  doing great in 2017

  • poochperson_82poochperson_82 Member Posts: 1 Listener
    Anyone found issues with sleep an issue aside from the Physical aspects of Spastic Diplegia I am 34 Male suffering pain etc that I can live with, spasms and lack of regular sleep pattern I can't! Attempted my best to resolve on own less success!
  • tranath2130tranath2130 Member Posts: 1 Listener
    Hi everyone. I'm sorry if I am posting in the wrong place but I'm looking for some advice :) my fiancé of two years has CP (spastic diplegia) and is 37. In the last year his mobility pain and fatigue are really worsening. He's not taking any medication and is about to start seeing a physio. It's really getting to us both him moreso obviously as he feels like he can't enjoy life as he once did. Can anyone give any advice on managing general fatigue and the all over aches and pains he's experiencing?? Thank you so much x
  • kaydee64kaydee64 Member Posts: 1 Listener
    Hi everyone,
    I'm new to the group and so glad to have found this. I too have spastic diplegia and was diagnosed as a toddler. I know CP is not a progressive disorder however I am noticing different issues with age. The issue seems to be that CP isn't very well understood by health care professionals.

    Curious, does anyone notice their muscles more tense some days than others (without any logical explanation)? I find my right leg is very tight sometimes (unable to touch my heel to the ground) and other days I'm able to touch my heel to the ground without any discomfort or pain.

    TIA
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @tranath2130, how are you? How is your partner doing?

    Welcome to the community, @kaydee64! Do let us know if there's anything I can assist you with.
  • Jean_OTJean_OT Member Posts: 528 Pioneering

    You asked "does anyone notice their muscles more tense some days than others (without any logical explanation)? "

    I have dystonia (not from cp) and certainly I know that my muscle tone can vary a lot from day to day. Also, professionally I have spoken to a lot of people with cp who find that their tone is worse some days or in some situations. Often there is a pattern or explanation to why this is but it needs exploring to reveal what it is.

    Some people find it helpful to make a note in their diary of how their muscle tone is and also record what else was happening (stress levels, weather, medication, exercise levels, food, alcohol, etc) to see if there is any correlations.                 

    Hope this helps
    Jean

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • naomi_97naomi_97 Member Posts: 2 Listener
    I have spastic diplegia I got diagnosed at a year old  and I’m now 20 years old and fully reliant on a wheelchair not through choice, I have had many operations and therapy throughout my time however my pain seems to get worse the older I get! Glad to know others have similar issues 
  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    Hi @naomi_97
    Welcome to the Community!
    There are lots of people in the Community that are experiencing very similar problems.
    Have had an opportunity to look at "Things that you have found useful for managing your CP" discussion? There are some useful tips in there from people with lived experiences. Here is the link: https://community.scope.org.uk/discussion/28690/things-that-you-have-found-helpful-for-managing-your-cp#latest 

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • RochelleonwheelsRochelleonwheels Member Posts: 2 Listener
    I am 25, I’ve got spastic diplegia. I got diagnosed at 2 year old, i’ve always rely a wheelchair I used to walk with a frame walker at school but not far but I’m hoping to do it again as I’m waiting a date for physio to start. My legs not that strong and very stiff as I have pains often. I used to crawl alot growing but I can’t handle it much without my knees hurting and my back ache. I’ve got weight issues too.
  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    Hi @Rochelleonwheels and @akshayv
    Welcome to our community, great to have you here!
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Issarian1993Issarian1993 Member Posts: 4 Listener

    Hi I am 24, I live with my parents and have Spastic Diplegia, which I was diagnosed with at 18 months old. I was also diagnosed with Asperger's Syndrome at 16. Despite being told by doctors that my Cerebral Palsy would remain the same after the age of 18, mine has got considerably worse, and I now use a stick, a walking frame, a wheelchair and a mobility scooter.

    As of my CP and Asperger's I do not work and will probably never be able to. My energy levels and concentration are ****, I am always tired and I do wear a mouth guard at night because I grind my teeth. Currently I can’t get out of the house on my own without support. I have difficulty crossing roads and poor awareness of danger.

    However, I am able to do a lot of things thanks to the Pilates exercises that I do every day, the Physiotherapist that I see (which I do pay for), and the support from Adult Social Services. Trying to get appointments with the GP and hospital has always been difficult, but in October 2017 I changed to a nicer GP, and things are much easier now.  

    My parents have always been very open with me about my disability, and although I am not as independent as I used to be, I treasure everyday, and I have hope for the future. :)  

  • woahwoah Member Posts: 1 Listener
    Greetings from California! 31 predominately spastic diplegia but w/ upper involvement as well. Definitely have noticed  worse with age, more exhausting factor. It’s importent to get good quality sleep for physical performance and to maintain positive attitude like above poster for mental wellness.
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Welcome to the community, @woah!
  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    Great to meet you @woah
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • April2018momApril2018mom Posts: 2,869 Member
    My 13 year old girl has SD (spastic diplegia). We noticed it when she was 4/5 months old. She was eventually diagnosed as a child by a neurologist at a appointment. Before then I thought that she was just taking her time with that area of development. 
Sign in or join us to comment.