Hi, my name is RichardLel! I have CP and Asperger's syndrome. How is everyone? — Scope | Disability forum
Find out how to let us know if you're concerned about another member's safety.

Hi, my name is RichardLel! I have CP and Asperger's syndrome. How is everyone?

RichardLel
RichardLel Member Posts: 48 Courageous
edited February 5 in Start here and say hello!
Intro, I got moderate celebral palsy at 50yrs last year diagnosis 10 years to be acknowledged, that stood my ground that work into disabilty.  also my Aspergers only confirmed 2 years ago after surviving mental health service since a teenager. Pretty much finding have rebuild allot of things on my own be very proactive, talk lots differant people for advice! I was recommended to be a medical volunteer because what happened to me and given allot of time to be involved with clincal studies. I like building electronics, inventing, drum n bass. Someone needs keep reminding me learn play the bass guitars as been procrastinating on. I just want do something unlifting than hang around in this medical mess of my past welfare.

how is everybod?

As already got good tips about diet and spasms.
Tagged:

Comments

  • Cher_Inactive
    Cher_Inactive Posts: 4,414

    Scope community team

    edited February 5
    Hello and welcome @RichardLel

    Thanks for that introduction.  It sounds like you had a tough time getting a Cerebral palsy and Aspergers diagnosis so well done you for persevering. 

    I'm not sure if you've explored the community much yet but we have both a Cerebral palsy discussion board and an Autism and Aspergers one, so you might be able to relate to a lot of posts in there :)

    We also have a fortnightly Cerebral palsy online cafe for people aged 20+ which you are more than welcome to join.  Have a look at this thread for more details.  

    Do you have, or need, tips about diet and spasms?  If you have them, feel free to share!  Our community is all about support so it'd be good to hear them.

    Hope to speak soon and have a great Friday.
    Online Community Co-ordinator

    Want to tell us about your experience on the online community?  Talk to our chatbot and let us know.

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
  • janer1967
    janer1967 Member Posts: 12,876 Disability Gamechanger
    Hi and welcome from me too 

    Nice to read a bit about you and look forward to seeing you about 
    I have professional experience in HR within public,  private, and charity sectors.  If I can help I will 
  • Ross_Scope
    Ross_Scope Posts: 5,463

    Scope community team

    Hello @RichardLel

    Welcome to the community, how are you? 

    Thanks for telling us a bit about yourself, I'm sure you'll find the community a very supportive and helpful place to be :) 
    Online Community Coordinator

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Did you receive a helpful reply to your discussion? Fill out our feedback form and let us know about it.
  • WestHam06
    WestHam06 Member, Scope Volunteer Posts: 1,393 Pioneering
    Hi @RichardLel
                               How are you? Welcome to the community and thank you for joining us. Please feel free to have a look around the community and join in with any conversations which may be of interest to you. Also, please do ask any questions you may have and someone here on the community will try to answer. We are a friendly and supportive community and support one another. I have Cerebral Palsy and so if you have any questions you would like to ask, then please do and I will try to answer. I'm sorry that you have had such a tough time receiving diagnosis, but good for you for persevering. Thank you. 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,063 Disability Gamechanger
    Just adding my welcome @RichardLel - Thank you for joining & sharing about yourself. I hope you enjoy being part of this friendly & supportive community. :)
  • RichardLel
    RichardLel Member Posts: 48 Courageous
    edited February 5
    I need all the support I can get even just someone say hello how are you doing! When faced a life time of misdiagnosis, suddenly find out someone else with ASD & CP.. Rebuilding is hard, but does not have to be but have put a boundary around it to separate myself focus with self care as the problem taking daily energy away trying to fix. 

    Sadly I had to take a stand between my GP and psychiatrist as come to understand great deal of micromanagement controlling what went bad in my past care, no discussion, no apologies, just come at me with all authority, but then I had to respond back it was left to junior staff pick out my disablity that saved me from life trapped within the mental health system.

    I have assert with myself to put separation not to be trapped in this mess, just to focus on self care day to day life, until I get to neuro rehab which could be some time. I know things slowly changing for the better but going take time with awareness allot said by the nhs.

    all I want to do self care, not pulled into politics being wrong care!

    thanksyou for your message, 
  • RichardLel
    RichardLel Member Posts: 48 Courageous
    Thanks everybody, I check everybody’s tips out and look through everybody suggestions.
    the online cafe sounds a great idea. 🤪
    The Aspergers do  full time caring for others and condtion let alone myself.
    Sorry for having bit of melt down, as  I go do something fab! 😀
  • lisathomas50
    lisathomas50 Member Posts: 4,710 Disability Gamechanger
    @RichardLel how is your going today  hope your ok 

    There are lots of discussions going on  that you may like  nice to see you on the community 

    Hope you enjoy 😉 
  • RichardLel
    RichardLel Member Posts: 48 Courageous
    Thankyou, I am doing ok! 
    It’s nice to know not on my own with this!
    I will have a look around. 
    😀
  • Masuma
    Masuma Member Posts: 31 Listener
    Hi Richard, My name is Masuma and I do hope that you finding this conversation so helpful 
  • Masuma
    Masuma Member Posts: 31 Listener
    you are not on your own everyone is feeling the same here too 
  • Masuma
    Masuma Member Posts: 31 Listener
    the lockdown will be over soon and we all will be able to meet our friends again and our family members 
  • Masuma12345678
    Masuma12345678 Posts: 50 Member
  • RichardLel
    RichardLel Member Posts: 48 Courageous
    Responding to everybody comments, I am glad lock down is coming to a end to some degree and the moved away from cold, grey of winter which was bleak! I spent allot time in the garden making it less of overgrown jungle as planted at least 100 sunflower seeds of differant types, so by June & July really stick out where we lives.

    True,  I missed so many my friends in person as don’t realise take it for granted.   

    I dropped out of the discussion for some time as had allot to sort out with my health care which was getting really on my nerves constantly with misunderstanding of my health from my own care providers, but i kept to what I believe and asked for care plans around my health care end the problems and is agreed. 

    Being in hospital over Christmas in A&E, moved to acute ward for water works stopped working, it was horrible as wiitnessed allot of stuff I rather not talk about around covid.. 
  • Ross_Scope
    Ross_Scope Posts: 5,463

    Scope community team

    Thanks for the update @RichardLel and welcome back to the community :) 

    Your garden sounds like it looks super at the minute! 

    Is everything resolved with your care providers now?
    Online Community Coordinator

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Did you receive a helpful reply to your discussion? Fill out our feedback form and let us know about it.
  • RichardLel
    RichardLel Member Posts: 48 Courageous
    Thanks @Ross_Scope
    It’s at best that can hoped for when mental health worker phone me this week asking me what did I want regarding my care, which I replied I wanted series of care plans to take away misunderstanding any future involvement. When I took the telephone call, I was away from the home helping electrician which agreed work with him, slowly get back into work bit by bit not think of the situation. Its turned me into a disability activist as think all know about clinical dominance, one way communication which in the end bounced off me! I did another research interview around a as a volunteer about autism and times able claim fees for the interviews which any income is helpful.

Brightness

Complete our feedback form and tell us how we can make the community better.