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Ask your questions about Cerebral Palsy and ageing: Q&A with Dr Shah

DrShahDrShah Posts: 14Member Courageous
edited October 2018 in Cerebral Palsy

In the lead up to World Cerebral Palsy Day, we've been adding some extra features to the community over the week. This coming Monday 8 October, we'll be hosting a Question and Answer session with CP and ageing specialist Dr Shah. Find out more and how you can get involved below! 

My name is Dr Sonali Shah (@DrShah), and I’m a British Indian disabled woman. I’m a disability researcher, teacher and consultant concerned with the global challenges of equality, inclusion, health and social wellbeing of disabled people. I graduated with a PhD in Occupational Psychology and Disability at Loughborough University in 2002.  

Since then I have developed a series of innovative projects on disability issues, human rights and social change, using exciting projects to bring an awareness of disability and social change to non-academic and young audiences. I strive to provide a platform for disabled people to have a voice in the development of practices and policies that impact their lives.

dr shah sat on rock smiling

I’m a published author, and also co-ordinate the international Facebook group Women Ageing with Cerebral Palsy, a group for women with CP aged over 21.

I’m here on the community to answer your questions about ageing, lived experience and policy about CP. Leave your question in the comments below, and I’ll be live on the community on Monday 8th October at 10.30am to respond. See you then! 

Replies

  • Pippa_ScopePippa_Scope Posts: 5,856Member Disability Gamechanger
    Looking forward to welcoming @DrShah to the community soon!

    I'm tagging in @Louise80@Creed5@Jeffers@bizzymam and @WilliamWalker who may be interested in this discussion!
  • Chloe_TearChloe_Tear Posts: 16Member Courageous
    edited October 2018
    Hi @DrShah and a very warm welcome to the community! I have found that as I have got older (I'm only 20) my muscles have become tighter with more involuntary movements. I experienced this when I had growth spurts when I was younger but it always seemed to go back to normal- this doesn't seem to be happening anymore. I still do physio and wear 2 AFO splints, anything else you can suggest? Thanks!
  • DrShahDrShah Posts: 14Member Courageous
    Morning everyone, looking forward to the chat.Remember I am not a medical doctor, but know about impairment effects as well as social barriers. Also I am not the fastest typist in the world so bear with me.
  • Chloe_TearChloe_Tear Posts: 16Member Courageous
    Do you believe attitudes towards adults with CP differs from the attitudes towards children?
  • Pippa_ScopePippa_Scope Posts: 5,856Member Disability Gamechanger
    Morning @DrShah! Here's my question: what's one thing you would like all people with CP to know about the ageing process?
  • DrShahDrShah Posts: 14Member Courageous
    Hello Chloe, yes on the whole. However there is still an underlying assumption that disabled people are eternal children, especially adults with speech impairments. Professionals in health and social care, and elsewhere, still have a tendency to adopt a paternalistic attitude and'does he take sugar' attitude. my PA's have been trained not to answer for me (unless I say). Also if you just tell people that you are quite capable of speaking/making decisions they will learn and hopefully change their attitudes. 
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    Hi @DrShah
    What advice would you give someone going through the transition of childhood doctors to adulthood?
    Scope
    Senior online community officer
  • Chloe_TearChloe_Tear Posts: 16Member Courageous
    Thanks for that @DrShah! I too have found that people try to speak to my PA's rather than myself. 
  • DrShahDrShah Posts: 14Member Courageous
    @Sam_Scope
    Hi Sam, yes great point. That has been a major concern for the women in the WACP FB group and myself as CP is perceived as a childhood impairment and we were all supposed to die before older life. There services have not been put in place. I gave a lecture at Nottingham medical school to health professionals and they were shocked that people with CP experience accelerated ageing, new impairment effects. I am writing a paper for BMJ on this and waiting for money to do projects to address the gaps between child and adult health care so we can have physio and specialist treatment, like a CP nurse . I gave a lecture to nursing students too, so those new nurses will know now. So I guess we need to build more evidence for health provisions and the economic benefits of such provisions. In the meantime people with CP need to be aware of what is happening to be able to prepare physically, ,psychologically and socially. 
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    @Creed5 asked on our CP category:

    I am starting college next week and as I will be meeting new people, I was wondering should I tell them about my disability from the start or wait a few weeks. Also what is the best advice you can give to a college student who has cerebral palsy?
    Scope
    Senior online community officer
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    @Jeffers asked:

    I am wondering how to talk about cp to my teenage twin sons who both have mild cp. It is something they know they have. They are affected differently. I am thinking about them soon becoming young independent men...can anyone share their experiences please?
    Scope
    Senior online community officer
  • DrShahDrShah Posts: 14Member Courageous
    @Creed5
    Hi there, again good question about college as that's something we all have/are going/gone through. I think it is an individual choice. Myself and a lot of my friends actually never start a conversation about our impairment as it actually doesn't define who we are. It    may come up naturally, when you can't get into a pub for example. Or if someone thinks you're drunk because of your walk. i have always started conversations about music or books or film, and friendships develop around these . Disability will certainly become a topic that comes up, because we can't 'pass' as non-disabled but don't start a new chapter with it.   
  • lizzy_maelizzy_mae Posts: 5Member Listener
    Hello Dr. Shah,
    I was wondering if you know whether or not when we age, does our cerebral palsy go through a regressive stage and we lose mobility? When do you think ie the prime age to be highly functioning if you have a mild cerebral palsy? 
  • DrShahDrShah Posts: 14Member Courageous
    @Creed5, all the best with it. It's fun, hard work and challenging at the same time. It's a massive learning experience on many levels, so you must be strong. I have experienced many educational transitions - college, university for undergraduate, university for PhD. every phase is challenging for everyone, but especially with CP. However if you learn from each phase, the next gets easier as you can use previous strategies. Hope that helps.
  • DrShahDrShah Posts: 14Member Courageous
    @Pippa_Scope, the ageing process for people with CP starts earlier than for those without CP. As people with CP move through adulthood they will experience premature or accelerated ageing as a consequence of the primary motor control impairments which reduce gait and movement efficiency, leading to overuse of antagonist muscles and thus increasing the expenditure of energy and causes fatigue . Adults with CP are at increased risk of overuse syndrome or, as reported by a respondent in Mudge et al’s qualitative study, ‘forcing my body over the physical limits’ (2016:4). Work by Turk et al. (1995) suggested that adults with CP experience pain as they age due to how they perform an activity and routine movements. Their research suggests that the pain experiences are often related to soft tissue injuries in muscles, tendons, ligaments or nerves. While these experiences are prevalent in men and women, the latter will also experience other effects relating to their reproductive health, such as increased spasticity during menstruation and menopausal changes earlier then non-disabled women . Further, women with impairments, including CP, are likely to be at higher risk of developing certain chronic secondary conditions due to physical and structural barriers to healthcare facilities and medical equipment such as breast scanners.  The embodied effects of accelerated ageing, for adults with CP can cause deterioration in the ability to be active in employment and leisure, or to perform personal care duties.
  • lizzy_maelizzy_mae Posts: 5Member Listener
    Also, what age do you believe made it "easier" to deal with people who ask ignorant questions or make comments on your disability? I love working with people and am in customer service but when people say things like "I can't believe they let people like you work here" it takes everything for me not to lose it. Does it ever get easier?
  • lizzy_maelizzy_mae Posts: 5Member Listener
    Thank you @DrShah, that answered my first question!
  • DrShahDrShah Posts: 14Member Courageous
    @lizzy_mae
    hi Lizzy, Just answered a bit about the ageing/accelerated ageing process for @Pippa. The actual age seems to vary. Quite a few of my friends noticed changes in our 40s. i started mid fourties but I thought it was because I had spent four years commuting from Nottingham to Glasgow so wasn't aware CP is progressive until I started reading about it for a research project I was developing. Then my friend and I set up the international Facebook group Women Ageing with CP. Through members' posts we discovered the symptoms of ageing can start earlier still. The big change for me,is the pain. I didn't have a lot of pain in my back and legs before. Also my mobility has reduced and I have more balance issues which have made falling more prevalent. However I have managed to get regular neuro physio, have regular spa's and go to the gym three times a week. 
  • DrShahDrShah Posts: 14Member Courageous
    @lizzy_mae, given we are in 2018 and all the developments in society for disabled people it is shocking how people still ask such ridiculous questions. Sarcasm is one of my strategies or ping it right back to them, like 'I'm surprised they let someone like you lose in this building'.
  • DrShahDrShah Posts: 14Member Courageous
    If anyone wants to send in other questions throughout the next few days, happy to respond when I can.

    Have a great day and belated happy international CP day!
  • Richard_ScopeRichard_Scope Posts: 1,705Administrator Scope community team
    Hi @DrShah 
    Are there any specific social barriers that are faced by women and girls with Cerebral Palsy, and how are these barriers to be overcome?
    Scope
    Specialist Information Officer - Cerebral Palsy
  • Chloe_TearChloe_Tear Posts: 16Member Courageous
    Thank you for your answers @DrShah! I found them all really interesting :)
  • DrShahDrShah Posts: 14Member Courageous
    @Richard_Scope
     women with CP are likely to be at higher risk of developing certain chronic secondary conditions due to physical and structural barriers to healthcare facilities and medical equipment such as breast scanners. Another factor often cited as a barrier to healthcare for women with CP is the pervasive misconceptions that disabled women are asexual beings and unable to pursue successful reproductive journeys (Dotson et al, 2003; Hayward et al, 2017). Disabled women have been actively discouraged and sometimes physically prevented from exercising their reproductive capacities and becoming parents (Smith et al, 2004; Thomas, 1997, WHO, 2016). This has created a culture of healthcare and maternity services where organisational, physical and attitudinal barriers may impact negatively on disabled women’s maternal and reproductive health.
    Mammograms are also problematic for women with cp. More work needs to done in collaboration with practitioners to inform new accessible and inclusive practice. Iit also helps when disabled people know their legal rights so they can fight back constructively. All on the web - UNCRPD, Equality Act etc
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