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I would like to have been more prepared for ageing with Cerebral Palsy

RamRam Posts: 12Member Whisperer

Ruth is a secondary school English teacher with cerebral palsy and Perthes’ Disease, a condition that affects her hip. Today, she shares her thoughts on ageing with CP.

I am a child of the 1970s with a non-progressive neurological condition. On most days, I am acutely aware of my good fortune. Had I been born elsewhere, without the NHS, at another time in history, taken longer to reach an incubator or had parents less willing, or able, to ‘create a bit of a scene’, I doubt that I would be writing this. I am lucky, but this time in my life is also, from a CP perspective, the hardest yet and nobody really warned me that things could go this way. It would have made it a lot easier if they had.


I have a list, on which I try not to dwell, entitled ‘Things it Would be Impossible, or Unwise, for Me to Do’ and it’s getting longer with every birthday. I have abandoned the ‘Things it is Painful to Do’ list because it now, thanks to a nerve-compressing lumbar disc, has just one entry. ‘Everything’. Two years ago, it was another disc, another nerve. Surgery made me pain-killer free and two wonderful transatlantic trips possible. I am grateful for such gaps during which life, I have learned, must be grabbed.

If you had met me in 1974, I would have shown you how good I was at standing on my head and my encore could have been a forward roll. In 1981 I scaled the Malvern Hills on a school trip; 1985 was the year I windsurfed very badly in the south of France. I chose a university on top of a hill in Surrey, spent my gap year as a cook, lifting saucepans into which I could easily have fitted and, had you asked me, would probably have claimed that my disability was ‘mostly hidden’. Without knowing it was a thing, I practised pacing, I hurt a bit, and was the (proud) owner of a foot-drop splint which I wore sporadically. It is a life that I no longer have.

My mid-forties have brought some tricky decisions. I chose crutches because walking became a bit too uncomfortable. My balance, never impressive, started to deteriorate meaning that I fell over a bit too often and was worried that I might damage my precious Perthes-related hip-replacement. My wheelchair came when I realised that pain and fatigue were drastically shrinking my world and that my life was resembling that of people twice my age. I had to seek out advice from a particularly fabulous GP and a wonderful physio who found me the least unattractive crutches she could. Throughout all of it I worried that I was making too much fuss.

The offer of medical expertise, at a much earlier stage, would definitely have helped. The kind that I remember being readily available in childhood when there was a flurry of surgical activity that came because everyone’s top priority was for me to be walking. That focus has, in some ways, been an enemy. It made it harder for me to entertain the idea of the wheelchair, harder for my parents (who fought so long for the walking) to accept it and almost impossible for me not to feel as if I was giving in, failing some kind of test. Encouragement from a consultant was much-needed but, instead, the view was that I should treat the wheelchair-use as a temporary situation, should get fixed, should ‘try to get out of it as soon as possible’.

My chair gives me a freedom that I cannot achieve in any other way. I have wheeled down Broadway, whizzed around an ice-rink and discovered the not inconsiderable joy of speeding down the ramp into the turbine hall at Tate Modern. It allows me to keep working and to leave the house on my own. I hate to think what would have happened to my mental wellbeing without it.

It seems to me that a different approach from doctors to my ageing would have made a big difference. I would have liked to have met the professional who could have told me something about what the future might hold so that I could have tackled Rome’s cobbled streets before the wheelchair, made more informed choices and, perhaps, walked less, and for longer. I would like to have been more prepared for what CP would do to my skeleton.

 I have never felt the tick of my biological clock and, looking back, I think that the hands were spinning around at about twice the normal speed. If I had wanted children, there was a window of opportunity in my twenties, somewhere between starting work and the hip replacement, when my body was best-placed to cope with pregnancy and parenthood. Thank goodness that I didn’t need to grab that opportunity, that two wonderful nieces, a tabby cat and the kids that I teach are enough.

I wouldn’t want you to think that I am not looking forward to my future, but my CP will make it different to that of my peers. Like a prima ballerina, I have, it seems, pushed my body beyond what nature intended and, enjoyable as it was, I am paying the price. Hopefully the extremely fabulous NHS will come up with a plan for my spine and I will have another reprieve, buy another plane ticket. I just hope that, this time, the reprieve can be a little less temporary and that I will, at last, be able to stop feeling that I should apologise for the wheelchair.

Can you relate to Ruth’s experiences? Share your own stories in the comments below!

Replies

  • Shona1Shona1 Posts: 7Member Listener
    I found that as an individual who always pushed herself past her physical limitations this has led to numerous falls that when a child u bounce from as an adult these have caused so much pain and limitations. I find that theirs not a lot of medical knowledge or care tailored to adults who age out of the nhs childhood support for young CP sufferers. Not knowing how this is likely to continue prevents us limiting the impact of CP on our life’s. I always took my mobility for granted and assumed it wouldn’t change. If I could I would go back and and not take it for granted and make a wish list for places and things to do and try to squeeze as much as possible in for we r working with bodies where years of falls will eventually impact on them. 
  • RamRam Posts: 12Member Whisperer
    I agree Shona, I think there is a lot to be learned about ageing, although I hope that things are perhaps different for people who are younger than me. 
  • SarahfSarahf Posts: 4Member Listener
    Ruth, that is a very real yet inspiring article. I’m mid forties now just had a baby at 43 and I can relate to this 110%.  I’m also an OT and have had to leave my career as I knew it behind because I’m a two strick scooter girl and my parents still harp on about me walking round town with the baby in a buggy.  My little girl comes with me in a carrier on my lap on the scooter.  The magic NHS were not much good at the day to day of motherhood after the birth and also did not prepare me in any way for the potential impact on my function moving forward.  I know that there is very little clinical evidence about CP and ageing because most studies are only carried out during childhood and young adulthood.  Society still makes massive assumptions about what those of us with CP can and will accomplish over the course of a lifetime.  Those of us born in the 1970s were also very rarely seen at mainstream school let alone university.  I have not met very many disabled OTs in a career spanning 23 years.  I’m enjoying life and will continue to pioneer new ways of thinking and being for as long as I can and I know my little girl will keep me laughing and loving not only the world but myself as well.  I take my hat of to you for exposing something that lots of people find it hard to talk about.  
  • RamRam Posts: 12Member Whisperer
    It's so interesting to hear your experiences, and professional perspective  Sarah, as you say, it seems to be an under-researched area but has such a impact on people's lives and choices. You are clearly doing a great job of working out the day to day of being a parent but it seems as if we would both have appreciated more advice.
  • Shona1Shona1 Posts: 7Member Listener
    I was largely independent most of my life a late 70s baby I was fortunate a young nurse intervened to assist my delivery minimising the severity of my CP. I was diagnosed about 18 months. With my family determination I have achieved walking independently until last couple of years higher education and working. To look at me a lot of people until recently wouldn’t of seen by problems the tiredness and balance issues. My granny always said was always someone worse of and I try to focus on that even when the pain particularly in my hips gets bad. I miss the pain free younger me. I think if more research was done into effect of CP in adults maybe more could be done to minimise it’s effects. The support and knowledge available for us is rather limited. I am still trying to work but have had to move to a Job more local and I have to say the small office atmosphere is much nicer. I don’t wear a sign advertising my disability which often leads me to push myself past my limits. The shift in pip I think will have big impact in those who have found ways to cope with physical limitations. For those of us not diagnosed with brain scans etc we have grown in a world that has struggled to know what challenges we would face. It’s very interesting to hear other experiences as each one of is unique finding our ways of coping with our disabilities.
  • RamRam Posts: 12Member Whisperer
    It really sounds Shona as if our experiences are similar in many ways. What you say about lack of brain scans is really interesting. It took years for me to figure out how my brain is affected. The mobility was more obvious, but processing and spatial stuff much less so. 

    There is something to be said for getting on with things, but, as you say, information is important too. Thanks for writing.
  • AnniAnni Posts: 8Member Listener
    Unlike Ruth I am not looking forward to the future. I have been in pain for half my life, there are no different medications I can take, and it will only get worse. I am getting more and more fatigued and am becoming dependent on my powerchair. I cry myself to sleep worried about getting older with cp.
  • BeccyJBeccyJ Posts: 59Member Talkative
    edited April 17

    I've got CP and my mobility has really deteriorated since my mid 20s. At that point I was an independent walker.  I am now almost entirely dependent on my wheelchair.  I only walk in my home and even that is extremely limited and very tiring.  I've been employed since the day I left education but now wonder if I will be able to maintain employment.  I feel like someone in their 60s or 70s

    I've always had a positive attitude but there comes a stage where positivity will only get you so far.  I have been faced with a complete lack of medical support, dealing with doctors who have no knowledge of CP, let alone CP in adulthood, and who tell me they don't know what to do to help me.  Being positive will only get you so far when, year on year, things are getting more difficult but no one knows what, if anything, can be done to help me.

    No one can tell me why I am now in the situation I am in.  I had to fight to see a neurologist and that was only once.  He specialised in MS but told me he had no expertise in CP.  He arranged an MRI scan which confirmed neo natal brain damage but he basically concluded that I should accept that the problems I was having had no easy medical explanation.  

    Obviously, the aging process is always going to complicate things with CP but not enough is known about the CP itself.  It has always been considered "non progressive" but is enough really known about the changes that go on in the brain throughout the entire lifespan and how brain damage that had been present from birth can affect these natural changes.  The fact that brain damage has been present from birth must mean that the way our brains learn (and adapt) as we grow, mature and age must be different from "normal".  

    Could it even be that the current standard medical treatments offered to children with CP are in some way causing the problems we now experience as adults.  How much research has been done here?

    It has been suggested by some Scope representatives that it would be difficult to offer adults with CP medical advice and treatment because people with CP are affected in different ways and to different degrees. For example see @Richard_Scope reply to @tarakona80 here:

    https://community.scope.org.uk/discussion/41292/adult-with-cp#latest

     Without further available explanation of this viewpoint, I struggle to understand this argument.  After all, we were all affected in different ways and to different degrees as children. Despite this, we all shared a CP diagnosis as children.  Therefore,  we were all referred to a paediatrian who specialised in CP and who tailored the treatment to our needs.  Why can't this be the case once we become adults?  The only barrier I can see is the traditional "non progressive" assumption and the consequent lack of interest in studying CP in adulthood which would enable treatments to be developed.

    I really feel that more research needs to be done on CP through the lifespan.  This is something that has already been discussed at some length here:

    https://community.scope.org.uk/discussion/33360/better-care-for-adults-with-cp/p1

  • RamRam Posts: 12Member Whisperer
    I think that you raise lots of important issues and questions Beccy. It seems to me that there may be lots of adults with CP whose lives would be made easier by more expert advice. My impression is that, currently, it can be very hit or miss. It helps me to know that my experience is not that unusual (but I kind of wish it
    was). 
  • Joe_FJoe_F Posts: 1Member Listener

    Thank you, Ruth, for your eloquent post and for sparking-off this discussion about CP and aging.  I have been meaning to do something similar for a long time.  So much of what you say and other comments here resonate with my own experiences. 

    I am nearly 60, with mild (thank God) CP that I coped with during my youth and middle age, small stroke about five years ago, recently early retired from a career as a solicitor when I felt I could no longer cope with the physical demands. Fatigue and mobility problems now mean I am “not the man I was”, which feeds through to low mood and everything that goes with that.  I feel that in the ten years of my fifties I have aged about thirty years. 

    Yes, everyone is different in terms of CP severity and age of decline perhaps, but the principles are the same.  You are absolutely right that there is not enough information about this out there.  Nobody warns you of the effects on your body of coping with a lifetime of CP and how it will catch up with you as you age.  The only satisfactory explanations I have found are on US websites: essentially, that it is “payback” for a lifetime of pushing ourselves and, basically, overdoing it in our efforts to be as “normal” as possible.  With great respect to Scope, the limited information I have found on its website is somewhat superficial and “sanitized”.  ike others, I have found doctors pretty useless at explaining things in matter-of-fact terms.

    The paradox is really whether we would want to know, when we’re young and fighting to overcome our limitations, how things are likely to pan out when we age.  I’m not sure about that.  I worry that the forewarning might result in our planning our careers and lives conservatively and mean that we fail to live our lives as fully as we might otherwise do if we are in fighting mode.  On balance, I think what I would prefer is not to be expressly warned when young, but for the medical profession and advice channels like Scope to provide more direct and un-sanitized information about the reasons for our feelings of decline and, if you like, premature aging, when we get to the stage of feeling it and seeking help or an explanation. We should not have to work it out ourselves!

    Thank you again for your post.         

     

     

  • RamRam Posts: 12Member Whisperer
    Thanks Joe for taking the time to write, it is definitely helping me to hear from other people with similar experiences (although I wish there were fewer). As you say, the lack of readily available advice and support can make any changes much more difficult to cope with and I too have only found helpful explanations on US websites. It seems as if there is an important opportunity for some experts to get involved and to develop better approaches.
  • BeccyJBeccyJ Posts: 59Member Talkative
    I agree @Ram - I think it's also interesting that, while many of us are able to lead relatively active lives, some of us develop issues in adulthood much earlier than others.  Some independent walkers, for example, might lose that ability in their 20s while others maintain it into their 50s and beyond.  Why is that?  To me, it can't be solely attributable to "overuse" syndromes or ageing, certainly not for those of us in our 20s when things change!  So much research to do.

    Wikipedia isn't a source I would normally quote but I was interested to read this in the article "Spastic Cerebral Palsy" under "Prognosis".  I thought it was a good summary of the issues being discussed here:

    "Cerebral palsy, including spastic cerebral palsy, is notable for a glaring overall research deficiency—the fact that it is one of the very few major groups of conditions on the planet in human beings for which medical science has not yet (as of 2011) collected wide-ranging empirical data on the development and experiences of young adults, the middle agedand older adults. An especially puzzling aspect of this lies in the fact that cerebral palsy as defined by modern science was first "discovered" and specifically addressed well over 100 years ago and that it would therefore be reasonable to expect by now that at least some empirical data on the adult populations with these conditions would have long since been collected, especially over the second half of the 20th century when existing treatment technologies rapidly improved and new ones came into being. The vast majority of empirical data on the various forms of cerebral palsy is concerned near-exclusively with children (birth to about 10 years of age) and sometimes pre-teens and early teens (11–13). Some doctors attempt to provide their own personal justifications for keeping their CP specialities purely paediatric, but there is no objectively apparent set of reasons backed by any scientific consensus as to why medical science has made a point of researching adult cases of multiple sclerosismuscular dystrophy and the various forms of cancer in young and older adults, but has failed to do so with CP."
  • Sam_ScopeSam_Scope Posts: 4,950Administrator Scope community team
    Thanks so much for sharing @Ram :)
  • RamRam Posts: 12Member Whisperer
    I agree about Wikipedia, but am really pleased that you quoted it BeccyJ. Your comments certainly add weight to the argument for more research. For me, it is interesting to compare my CP experience with my Perthes Disease one. In the case of the latter, I remember being told, at the age of 6, that I would probably need a hip replacement before middle age. It happened when I was 34. No such useful CP information was available and, anecdotally, there do seem to be patterns that could be identified.
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