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Falling over

Sharkey26
Sharkey26 Member Posts: 13 Listener
edited November 9 in Cerebral palsy
As a child I used to fall over all the time as I got older that lessened and last few months I’ve fallen over almost every day I almost got hit by a car yesterday as I fell into the road my mum made me call Gp they referring me to a orthopaedic and neurologist specialist and I’m just wondering if anyone else has had these problems and what helped or what was wrong? 
Hope this is ok to post 
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Comments

  • janer1967
    janer1967 Member Posts: 12,827 Disability Gamechanger
    Hi there and welcome 

    Sorry to hear about your falls there could be lots of reasons for this so hard for anyone to advise 

    You have done the right thing by speaking to the gp and getting referred 

    Is is a balanced issue or dizziness or pain maybe try using a stick for extra support till you get some answers 
    I have professional experience in HR within public,  private, and charity sectors.  If I can help I will 
  • Sharkey26
    Sharkey26 Member Posts: 13 Listener
    Well one of the people who’s seen me fall says it looks to her like my legs just stop moving like a sharp break when driving a car as I fly forwards
  • Tori_Scope
    Tori_Scope Posts: 6,620

    Scope community team

    Hi @Sharkey26 :) I'm also sorry to hear that you've been having some falls recently. Falling into the road must have been scary, too, so I'm glad that you've managed to be referred to some specialists. 

    This isn't something I have personal experience with, but I hope some fellow CPers will be able to share their experiences and advice. I'll also tag @Richard_Scope into this comment, as he's our Specialist Information Officer for CP. 
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  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,025 Disability Gamechanger
    edited November 9
    Hi again @Sharkey26 - I'm so sorry; yesterday's fall must have been dreadful for you. If you look back at your first post, you queried Post-Impairment syndrome: https://forum.scope.org.uk/discussion/84382/i-have-cerebral-palsy-does-anyone-know-about-post-impairment-syndrome   which unfortunately affects many adults with CP. I would urge you to look through your post again, & the links I gave to Richard_Scope's info on this, as well as Tori's links on that post. Post-Impairment Syndrome should hopefully be a discussion you have with an appropriate neurologist. I'm sure Richard_Scope will give further helpful comments, as always, & of course it's OK to post. :)
  • Sharkey26
    Sharkey26 Member Posts: 13 Listener
    I do remember that yes but I couldn’t really find out much about it as was video call things and I really don’t engage in them and I need like information in writing so I can process it sorry and thank you 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,025 Disability Gamechanger
    edited November 9
    Hi @Sharkey26 - my link was to Richard's written info on Post-Impairment syndrome (I remember you couldn't attend zoom meetings in the CP cafe).
    Here's Richard's article:

    'A common condition that adults with Cerebral Palsy live with, post-impairment syndrome, is a collection of symptoms and health problems that cause a great deal of discomfort, pain, and trouble with mobility. The exact issues this condition causes vary by individual, but often include fatigue, joint pain and arthritis, difficulty walking, poor posture, and weakness.

    Post-Impairment syndrome is an issue in adults with cerebral palsy because it results from years and decades of damage to the bones, muscles, and other tissues in the body. This damage comes from the accumulated effects of moving and living with joint, bone, and muscle abnormalities. Good, lifelong physiotherapy and treatment are important for minimizing or preventing post-impairment syndrome, but when it occurs, there are treatments that can help make people more comfortable.

    What is Post-Impairment Syndrome?

    Cerebral palsy is a condition that starts in the brain and results from acquired brain damage, but most people with it feel the condition in their bodies. The brain damage impacts muscle tone, muscle control, bones, joints, posture, balance, and how a person moves. Everyone with cerebral palsy struggles with the loss of motor control and function to some degree, from challenges that are barely noticeable to almost complete inability to walk, and everything in between.

    These motor issues can cause significant problems in childhood, but as a person ages, they cause even more problems. The years of moving in ways that are not optimal and of living with spastic muscles or malformed joints and bones ultimately cause damage that can lead to arthritis, pain, and weakness. Fatigue is also common because people with cerebral palsy use significantly more energy to move than people without motor issues. Together all of this damage and the symptoms it causes is called post-impairment syndrome.

    When post-impairment syndrome begins depends on each individual, as does the severity of the condition. Those with more minor disabilities may never experience post-impairment syndrome or may only have mild symptoms that set in later in life. Children with severe cerebral palsy symptoms are more likely to experience the syndrome earlier and for it to be more serious.

    Common Symptoms and Conditions Associated with Post-Impairment Syndrome

    Post-impairment syndrome is not a strictly defined condition by symptoms because it can cause different symptoms and varying degrees of symptoms in different individuals. However, there are some challenges, conditions, and symptoms that are commonly seen in adults with cerebral palsy who are experiencing post-impairment syndrome:

    • Arthritis and pain. The abnormal movements and deformities that people with cerebral palsy have can cause damage over the years that nearly always result in some degree of pain. The pain may come from repetitive use injuries, from arthritis, or from sore or imbalanced muscles.
    • Weakness. Muscle abnormalities and many of the same causes of pain in post-impairment syndrome, also cause weakness over time, making movements even more challenging.
    • Fatigue. Estimates are that people with cerebral palsy use three to five times the amount of energy to move in similar ways that people without the condition use. This leads over time to both weakness and fatigue. For many people with the post-impairment syndrome, fatigue is the biggest hurdle.
    • Depression. Although not always included as a symptom of post-impairment syndrome because it is not physical, adults with cerebral palsy may be susceptible to depression after years of struggling with the condition and with painful symptoms and poor mobility.

    Preventing Post-Impairment Syndrome

    It may not be possible to prevent the development of post-impairment syndrome, but good and consistent treatment throughout a child’s life can prevent the worst. There are many elements to the treatment of cerebral palsy, from medications and surgery to physical therapy and mental health therapy. The treatments needed to depend on the needs of each individual, but the more comprehensive and consistent treatment is, the better chances a child has of minimizing later post-impairment syndrome symptoms.

    What is important to developing lifelong mobility and avoiding as much damage as possible that can lead to later pain and disability, is correcting muscles imbalances, muscle tone, and bone and joint deformities. For some children, surgery may help make corrections that will lead to easier movements and less damage over the years. Most can also benefit from ongoing physical therapy that helps to develop muscles, balances strength in pairs of muscles, and teaches someone to walk and move in ways that will result in less damage.

    Treating Post-Impairment Syndrome

    Even with good lifelong treatment, many children with cerebral palsy will end up with post-impairment syndrome. There are many different ways it can be treated, although like cerebral palsy itself it cannot be cured. Some of the underlying issues may be treatable, like surgery to repair bone damage, but most of all treatment involves addressing symptoms.

    For instance, treating the pain of post-impairment syndrome may involve a combination of medications for pain, physical therapy, and gentle types of exercise, like yoga. Fatigue and weakness can also be treated with physical therapy and exercise. Lifestyle changes can also help, like improving sleep habits and eating a healthy and nutritious diet. Using more mobility aids and working with an occupational therapist can help make doing daily tasks easier and safer, as falls are more likely when weakness, pain, and fatigue increase.

    For depression and other mental health issues, there are many treatments that can help. Working with a therapist or counsellor can help to change negative thoughts and behaviours. Antidepressants may be useful as well. People going through this difficult condition can also benefit from support groups, chatting online or in person with other people experiencing the same challenges. It is also important to rely on a close network of friends and family for social support to boost mood, but also for assistance with ordinary tasks when pain and fatigue become overwhelming.

    Consequences of Post-Impairment Syndrome

    In addition to the direct consequences of the years of living with cerebral palsy, like pain and fatigue, living with post-impairment syndrome can impact other areas of life. The pain, for instance, can make sleep more difficult, which in turn increases fatigue and sometimes depression. Being fatigued can lead to dropping out of social engagements or missing work, which can lead to social isolation and financial issues. It is important to get help for post-impairment syndrome because it goes well beyond just causing pain and tiredness to affect all areas of life and quality of life.

    Living with Cerebral Palsy as a child isn’t easy, but even as an adult the challenges do not necessarily get easier. The accumulated damage of years of living with this disability can cause this uncomfortable, painful, and damaging condition. If you live with cerebral palsy or have a child with the condition, be sure to get the best, most consistent treatment and therapies to prevent the damage that causes post-impairment syndrome and to ask for help when you experience it later in life.'

    Here's a web link to this for your Drs: https://www.cerebralpalsyguidance.com/cerebral-palsy/associated-disorders/post-impairment-syndrome/



  • Reg
    Reg Member Posts: 99 Pioneering
    Hello @Sharkey26

    I hope you are feeling better after your fall?

    I have mild CP and used to fall over a lot so know how horrible it is, especially when you fall over in the middle of a road. Do you also veer off and not manage to walk in a straight line? I have caused a few accidents that way as well. It is also rather embarrassing when you are helped up by octogenarians!

    My falls have decreased since I took two neuro physio's advice to use two crutches - I resisted for ages as thought it might be giving in. I do worry a bit that if I fall with the crutches I will do more harm so I am sure it is not the right solution for every one.

    I am pleased to see you have contacted your GP - I hope that they can get you some help. In my area the local authority run a fall prevention programme and that may be something that may help you? I could not go on the course as they have an age criteria in my area but they may be a bit more flexible where you live.

    I do not know about you but I hate the ice - slight frost and I am all over the place. 

    Please let us know how you get on with your referral and please let me know if you get any fall prevention tips.  Any suggestions welcome
    Reg

    I am a Scope volunteer.
  • Sharkey26
    Sharkey26 Member Posts: 13 Listener
    Thank you all for ur messages 

    reg yes I certainly do veer off the amount of times I’ve walked into a wall that’s by my side is jokeable I feel like a character in a computer game and someone got the controls wrong

    i most certainly hate that weather 1 step out my front door and I’m on the floor so practically house bound come that point

    if I get any information I will let u know for definite thank you

    as u mentioned age criteria may I ask how old u are? 

    Also I don’t know what octogenarians are sorry lol but I definitely find falling or going off track extremely embarrassing and I need help getting up as my legs just go stiff 😩

    I remember as a teen I fell over once and I just lasted there and my mate asked if I was ok I said yeah u know just chilling 😀
  • Reg
    Reg Member Posts: 99 Pioneering
    Heh yes 

    Do you get the drunk comment as well ?

    Octo's are people in the 80's - all of whom seem to speed past me.

    I am now in my mid fifties but have been falling a lot since my 20's and before that I was a mass of bruises from veering into things. The age criteria for the falls course in my area was 65 and above but it may be more inclusive where you live.  

    I used a golf umbrella for a while as too proud to use anything else - caused a few accidents with that in crowded places as could not always control its use. At least with crutches people know to give me a wide berth.

    Let us hope for a mild winter 
    Reg

    I am a Scope volunteer.
  • Sharkey26
    Sharkey26 Member Posts: 13 Listener
    Ahh ok yeah I get taken over by everyone aswell 😩 I’ve just turned 29 last month

    I do get the drunk comment yes and I just say Yh I am lol

    i am contemplating getting a walking stick but unsure yet and my family says I should wait till I’m seen incase I make things worse

    i don’t want to resort to these things at my age but if it’s got to be done there’s not much choice to it 
  • Reg
    Reg Member Posts: 99 Pioneering
    Yes - I would get advice as my physios tried me with sticks, one or two crutches and roller.

    I drop sticks and fall picking them up!

    Rollator is best but I thought I was too young - but I may be old enough now?

    I thought using crutches long term was a bad idea but that is why it is best to take advice and a physio or OT etc will help with how far to walk etc . I tend to ignore that - hence the falls as I get too tired.

    They should also be able to advise on gait - I keep being told that it is quality of walking that is important - not speed or distance 

     
    Reg

    I am a Scope volunteer.
  • Richard_Scope
    Richard_Scope Posts: 2,946

    Scope community team

    Hi @Sharkey26

    I fall a lot!

    As we age we experience changes in our mobility. We can address this by exercising and keeping active. Adults with cerebral palsy tend to have more issues with falling than teens and children with the impairment. 

    With the decline of mobility comes an increase in falling. However, people of all ages with cerebral palsy can fall easily due to imbalance issues and non-voluntary movements.

    Therapy is one way to help adults with cerebral palsy reduce their chances of falling. Some practical solutions might be the use of a mobility aid, what footwear do you use, are there better options? When do you seem to fall most often? All of these questions should be looked at by you and the Neurologist.





    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Sharkey26
    Sharkey26 Member Posts: 13 Listener
    Hey
    sorry not been and replied here for a while been off in the head if that makes sense but wanted to say as some of u tried to help me and stuff that I have an appointment tomorrow at the Oxford centre for enablement I don’t know what’s going to happen and I am terrified but if they give me any advice that I can pass on I will put it here thank u all for the support
  • Reg
    Reg Member Posts: 99 Pioneering
    Hello @Sharkey26

    That is brilliant news about the appointment .

    I hope it goes well - I have found people really try to help and come up with solutions .

    Do please let us know if you get any good tips - I need them as unfortunately managed to veer off and walked my blind friend into a bus post last week. She was very good about it as she appreciated getting me to guide her probably was not the most sensible option . Thankfully she has a good sense of humour . 

    Good luck at your appointment 
    Reg

    I am a Scope volunteer.
  • Sharkey26
    Sharkey26 Member Posts: 13 Listener
    That made me giggle 🤭 
    hope neither of u was hurt though 
    and yes I certainly will thank u 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,025 Disability Gamechanger
    Good to hear from you @Sharkey26 - thank you for the update, & don't be terrified about tomorrow's appointment; it's really good that you are going to be seen, &, as Reg says, you will hopefully get both good advice, & solutions. I look forward to hearing from you afterwards too.

  • Sharkey26
    Sharkey26 Member Posts: 13 Listener
    So they injected my worse leg with Botox today they are telling the Gp a medication to give me they are also going to send me back to the gait laboratory so 🤞 I’m afraid I don’t currently have any advice to pass on 
  • Reg
    Reg Member Posts: 99 Pioneering
    That is good to hear @Sharkey26

    Botox sounds good. Are you on any anti spasmodic tablets at the moment ? They made me walk better - far less of a limp and drag .

    Gait lab sounds good too - though I have sometimes felt like a lab rat . Last time I was at the hospital there were students looking at my gait and passing comments to the person training them . I had not thought the gait was that bad until I heard the comments ! But they have to learn and it was an eye opener for me as I had thought I had one good leg until the students started analysing it!

    Hope your gait lab appointment isn't too long to wait and that the Botox works for you 
    Reg

    I am a Scope volunteer.

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