Sam

Fighter of pompe disease

[Hopetravels @Hopetravels2]

If you have a child under 16 who has Pompe, message me & I will send them a furry sloth buddy to keep.
For children under 10 (or over with additional learning needs) I will also include a Pompe & Me children's book explaining Pompe for friends, family & school
#PompeAndMe
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[Sam @pompefighter]

Lovely to spend time with our future occupational therapists today @TherapyUos @sarah_lou2222. I enjoyed talking about #OT, #PompeDisease and the challenges/joys of disabled parenting. Great ideas and questions. Always happy to share the message of Hope too @Hopetravels2

[Dr. Nicole LePera @Theholisticpsyc]

You feel numb, stuck, hopeless, and completely disconnected from life.

You're in functional freeze.

HOW TO GET OUT:

[Sarah McGinley (she/her) @sarah_lou2222]

I am seeking lived experiences of under represented pre-registration OT student populations who have negotiated & navigated the UK selection & recruitment system for entry to university. Interested in an interview? [email protected] for further details. Plse see flyer

[Sam @pompefighter]

@susanwilsonbook Keep tweeting him! She says she could definitely see him as Silas or even Revan and she’ll be first in the queue to audition. She spent her weekend acting out The Extinction Trials books!

[Sam @pompefighter]

@susanwilsonbook my 11 year old daughter loves your books and is really into acting. She’s keen to know if there are plans for any of your books to be made into movies?

[Royal College of Occupational Therapists @theRCOT]

"I've learned that if your first goal isn't to establish an effective therapeutic relationship then it doesn't matter what your second goal is." – @KeirWales #RCOTCasson

[Sam @pompefighter]

@Hopetravels2 @sarah_lou2222 @TherapyUos @RCOTStudents @SotonOTSoc @HSciences You know I could talk about Pompe Disease for hours 🤣. Always good to share HOPE too 🦥

[Sam @pompefighter]

It always feels special sharing my experience of living with #PompeDisease and my life as a disabled parent. Hearing from the amazing @TherapyUos students also reminds me of my own passion for OT and how much our profession can offer #Connection #Reflection

[Sarah McGinley (she/her) @sarah_lou2222]

Thank you to the fantastic @pompefighter for sharing with @TherapyUos your journey as an #occupationaltherapist living with the rare Pompe Disease. A pleasure to learn from you & with you & once again meet @Hopetravels2 mascots 🦥💚 🦥 @RCOTStudents @SotonOTSoc @HSciences

[Sam @pompefighter]

@sarah_lou2222 this is the article I mentioned yesterday. It really resonated with my own experience of being an OT and facing the challenges of living with a progressive illness #PompeDisease

[Alice Hortop @LaughingOT]

having such a kind editing team, encouraging me and supporting the writing of it was hugely helpful! Thank you! xx

[Stickman Communications ltd @stickmancrips]

Pacing isnt just about taking breaks - sometimes a break isn't realistic, and then #pacing can mean finding techniques that will help. Aids, adaptations, changing posture, switching between 2 tasks that have different demands.
Pocket book of pacing from https://t.co/rbYFvi4pX0

[Jess Morgan @drjessmorgan_]

2 yrs ago today,

my daughter had open heart surgery.

She was 5.

As a paediatrician, I felt helpless

As a mum, I was terrified.

One thing happened that day, one thing the anaesthetic team did that I will never forget... 👇🧵

[Tommy Jessop @tommyjessop]

Thank you for your support for my first role as a reporter @BBCPanorama last night. People w learning disabilities should be treated fairly, equally & respected. BUT if the #NHS is to care for us we need to care for the @NHS @sallyephillips @LiamFox @KwasiKwarteng @jowhiley

[Sam @pompefighter]

Brilliant TV moment. I’m sure parents around the world can relate to the kids interrupting an important work meeting 🤣

[Jenny Rose Lawrence @roselawrence]

Brilliant chatting to England legend and super-mum @rach_brown1 on Newsround this morning about the legacy of the @Lionesses with some surprise guests making it even more exciting! You have got to love live telly. @cbbc #WEURO2022

[Sam @pompefighter]

@roselawrence @rach_brown1 @Lionesses @cbbc This was one of my favourite tv moments! It made me laugh so much and I could totally relate to it 🤣. You handled it well @rach_brown1!

[Sarah McGinley (she/her) @sarah_lou2222]

Please take a look colleagues at this valuable work related to perinatal mental health and co-occupations 💚💚💚

[Sam @pompefighter]

Please sign this petition: Provide an energy grant to people with a disability or serious medical condition https://t.co/Mm9FvsX2AL

[Sam @pompefighter]

@JamesDevineNHS @goodchild1 Yes, my partner I and I were having this discussion last night! It pretty much describes the ‘usual’ way of working for everyone we know who works in the NHS (and all of our friends in education).

[Pompe Support Network @PompeUK]

*International Pompe Day*

It's great to hear so many lovely comments about the 'Pompe & Circumstance' recording.
Here you can also watch a Documentary film about the journey to @AbbeyRoad .
Also, three short films from members of the Pompe choir:
https://t.co/GwdM1bH1Hm

[Pompe Support Network @PompeUK]

*International Pompe Day*

PompAbility: The Director's View:
https://t.co/8dH5s2J1kO

Allan Muir talks to the PompAbility Film Series Director (also his son) about the series of episodes and how having Pompe himself influenced his view of the films.

#film