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CARL58

CARL58CARL58 Member Posts: 178 Courageous
edited March 2019 in Coffee lounge
Hi saw carl58 consultant at 9am this morning he's had (eeg) also ( MRI scan) results later today all being well there start to wake him up I was told he had no doubt the added stress of ESA had caused these seizures and will get a letter out within the next few days confirming his findings as support.saw carl58 myself for 5mins was sedated so didn't stop he had colour in his face as the other day he was grey looking thats all I can say for now jen

Replies

  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,971

    Scope community team

    Hi Jen, thank you so much for letting us know how @CARL58 is doing. It's good to hear he's got some more colour to his face.
    Wishing him all the best,
    Adrian
    Senior Community Partner
    Scope
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,647 Disability Gamechanger
    Thank you Jen, you're a really good friend, if you need someone to talk to during this time then please do not hesitate to talk to us :)
    Disability Gamechanger - 2019
  • CARL58CARL58 Member Posts: 178 Courageous
    edited March 2019
    Hi thanks your wonderful people I've known carl58 10yrs & watched him deteriorate every year in the last 18mths has been the worst deterioration his last face to face assessment was a good 10yrs ago they've only gone by the assessment form I'm not sure if it's because he frequently has abusive out bursts or he can get violent with strangers as he gets frustrated that he can't make himself understood as it takes ages for him to understand the simplest question which has to be asked repedatively I asked him the other day what's Brexit he told me he had that for breakfast and he was serious.when I tried to explain he got so upset he didn't know..my fault for asking in away but needed to know so I could explain on the assessment form.hes good with me but strangers haven't a hope taken me years to gain his trust.jen
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Wishing you both only the best, @CARL58. You're in my thoughts. 
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @CARL58 Sorry to hear that he is not well. Thank you for sharing with the community.

    We are here to be supportive. Please ask anything.  Ready to listen anytime.

    Sending a prayer.

    Take care.

    @thespiceman



    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • CARL58CARL58 Member Posts: 178 Courageous
    Saw CARL58 at 4pm today was still feeling the after effects of the sedation so was still rather groggy but I was allowed to give him a drink he was so thirsty stayed 45mins results of EEG & mir were good picked up his brain injury but that was expected there a little concerned that his left temple lobe is showing abit more damage than 2yrs ago but that's down to the frequency of the seizures so there going to try 2 meds together phenytoin and epilin and increase diazapam try and quieten the brain down.oh so sorry if I shouldn't mention medicine.but my family live in Canada and there's only CARL58 lost alot of so called friends just because I want to help CARL58 who hasn't got anyone but me I'm not boasting.i see someone who needs help not he shouldn't be seen attitude thanks all jen
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Hi Jen

    Thanks for the update, heres hoping that the new meds help with his recovery. We could all do with a friend like you
    Be all you can be, make  every day count. Namaste
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,647 Disability Gamechanger
    Thank you Jen, sending all our love
    Disability Gamechanger - 2019
  • CARL58CARL58 Member Posts: 178 Courageous
    Hi thanks all going up hospital lunchtime to see CARL58 rang them this morning he's awake but confused why he's there needs help to eat as he's only use to me & they don't have a lot of time as he's a bit abrupt with strangers even though there nurses so I'll be allowed to stay with him all day will pass on your nice messages all being well over wkend could be allowed home on Monday after consultants rounds will know more later jen
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,647 Disability Gamechanger
    Thank you Jen, hope you're doing OK and glad to hear Carl is on the road to recovery!
    Disability Gamechanger - 2019
  • CARL58CARL58 Member Posts: 178 Courageous
    Ami2301 thanks I'm better for seeing carl58 proped up and awake took him in some fish & chips was pleased he ate most glad I did the food they serve is horrible his anxiety was very high but calmed down they've allowed him back on the medication he should be on for other problems which I've had to take in and for them to say yes he can have them know wonder he was climbing the walls there 89% sure e will be home Monday afternoon went for an x-ray on his hip today show's the osteoarthritis has got worse but nothing can be done operation wise as the fits or seizures aren't under control must be clear for 12mths it was 6mths he will have to use his power chair indoors not to use the left hip no walking Frame no trying to stand lay down as much as possible.someone  will come and widen doorways possibly as early as next week so he's not stuck in one room plus a new commode doubt he will like that but get him home first also met hospital social worker who's going to get all medical files make up a case for ESA assessment she was very polite but was at same time annoyed that he had no support  from mental health team & basically been dumped and left all to me even with his mental health & disabilities there should be some support she's going to look into that as she says I'm old school not these young inexperienced social workers who think they no it all made me titter when she said you haven't heard that from me.jen
  • CARL58CARL58 Member Posts: 178 Courageous
    Hi picking CARL58 up at 3pm today hospital have said he will be better off at home in familiar surroundings as he's very anxious & getting upset I agree with them CARL58 has enough problems with strangers as it is jen
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,647 Disability Gamechanger
    Hi Jen, this is brilliant news! Getting stronger by the day :)
    Disability Gamechanger - 2019
  • CARL58CARL58 Member Posts: 178 Courageous
    @Ami2301 & every1 thank you am home not In great shape but better than the last few days,thank you for talking with jen.plus the kind wishes I received ☺️
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Hi @CARL58 welcome home

    Heres hoping that you continue your recovery. There is always someone here if and when you need to talk or just have a rant

    best wishes


    Be all you can be, make  every day count. Namaste
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,647 Disability Gamechanger
    Glad to have you back @CARL58! Jen is a wonderful friend to you!
    Disability Gamechanger - 2019
  • CARL58CARL58 Member Posts: 178 Courageous
    Hi all CARL58 taking it easy is pleased to be home disliked the ward he was on made him very anxious so I'm battling to bring his anxiety down to a level he can cope with will take a while once again CARL58 sends his love to all jen
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,730 Disability Gamechanger
    Hi @CARL58
    Sorry to hear yuo are having a tough time, take care :)
    Scope
    Senior online community officer
  • Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Thank you for updating us Jen, happy to hear @CARL58 is back home :)
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