Speak Your MND

#speakurmnd365 Day 137: 7 of 7 'The seven reasons I despise you' I don't need to say much about today's... we end the week with Independence 🫶 7 days, 7 reasons why #MND can get to Fu*k! ✌️ & 🧡🧡 #als #poetry

#speakurmnd365 Day 136: 6/7 'Seven things I hate about you' No, This isn't a 6-7 reference..I'm sure if you have kids, you'll know what I mean 🤣 Day 6 is about food..eating..adapting, it starts with adaptive cutlery, then to consistency as the choice and options for 'what's for tea' dwindle. It's working hard to keep weight on when eating so little, supplements, PEG feeds, staying hydrated. But the biggest one, the Joy of eating, the long awaited Sunday roast, the summer BBQ, the family meal at a restaurant, the joy taken away by #MND And from a carers point of view.. the guilt! ✌️ & 🧡🧡 #als #poetry #food

Today we had the pleasure of welcoming Martyn and Anna to Projuvenate. 🤍 We are proud to be supporting @speakyourmnd over the next 365 days: a year of events, challenges, and moments that matter, raising awareness of Motor Neurone Disease and funds for MND charities. It was a privilege to open our doors to this campaign, and to be part of something so meaningful. We look forward to supporting the journey ahead. #SpeakUrMND365 #MNDAwareness #MND #Projuvenate #Manchester

Well this was different...I (@mbarrow1 had the pleasure of being invited by Nathan on to the @dadversitylessons podcast a couple of weeks ago, I got the chance to 'Speak My MND' Talking all things @mummybarrow @tillybarrow_ @evebarrow0 @fallon_barrow_ and how we don't let #MND dictate our life I apologise to the girls 🤣 you knew it would come up 'Choose Your Mood' Also a massive shout out to the families living alongside MND 🫶 I get you x Raising awareness of living alongside Motor Neurone Disease @mndassoc 🔗 in story ✌️ & 🧡🧡 #als #parenting

#speakurmnd365 Day 135: 5/7 'seven things I hate about you' Day no 5.. Reason no 5 @mummybarrow hates #mnd, CRYING.. makes it into the top 7, laughter turns to tears, tears turn to laughter, tears of joy, tears of sorrow, tears for any reason at all.. Triggered by a thought, a Tv advert, a song, a film, Tv show, an instagram post.. who knows what's next. Some call it Emotional lability! Or I just call it being a 'sensitive soul' ✌️ & 🧡🧡 #poetry #instadaily #mndawareness

#speakurmnd365 #NewEpisode (Version 2, Due to technical difficulties) 🫶 also new content! The latest and last episode of season 1 of the speak your MND podcast with me @mummybarrow is a little different, its just me hosting, when we started the speak your MND Podcast there were a few goals that @mbarrow1 and I had in mind, I wanted to host the show using my eye gaze and cloned voice. We wanted our guests to be from all walks of life from living with MND, Carers to Fundraisers, who all have a their own amazing stories to share. We wanted a podcast for the community, brought to you by the community. We also wanted music to accompany the podcast, composed by someone from the community, Thank you @aphplusplus for the new music to accompany the podcast 🫶 We wanted to share the highs, the lows, the good, the bad and the ugly, the wins, the losses and to try and serve up some advice and let you al know that your not alone on this journey, and thanks to the amazing guests I think we have achieved this. But one of my personal goals was to host an episode alongside a fellow individual living alongside MND, using only our Eye Gaze devices, and I had the person in mind from day one. @markwill_84 has been apart of my MND journey from the very start, he’s a source of knowledge and experience, he’s a good ear when i need to vent, he’s the reassurance I need when I’m making tough decisions and most importantly he’s always ready to take the piss out of me and remind me not to take life to seriously. Mark has been on this journey for over 4 years, he’s had his ups and downs, but Mark alongside his wife @_stephanie2311 have huge hearts and work tirelessly to help other families on the same journey through the @mndefiance_trust24 . And we will return in June 🫶 Anna 🧡 #mndawareness #podcast

#speakurmnd365 Day 134: 4/7 'Seven things I Hate about you' 'Boredom' sometimes this can't be helped, you try to find ways to fill your days, new TV shows, new hobbies, but things get in the way, the weather, appointments and the big one #MND 'FATIGUE' Some days you have no choice but to sit and watch the hours pass. ✌️ & 🧡🧡 #als #poetry

#speakurmnd365 Day 133: 3/7 'Seven Things I hate about you' #thevoice I'm sure you all knew this would be on the list, and fitting that this poem is out on the day that @mummybarrow 's podcast episode is out today with @markwill_84 Not going to say much about this one....... ✌️ & 🧡🧡 #mnd #als #voicebank

#speakurmnd365 Day 132: 2 of 7 'seven things I hate about you' We sometimes complain about Work, sometimes you just can't be arsed, but when that choice is taken away from you, it hurts! @mummybarrow says it's a huge part of her identity that's been taken away from her, she loved her job, her career, it was difficult at times, but that's just life of a social worker. Also for us carers, trading our careers to care for loved ones 🫂 ✌️ & 🧡🧡 #mnd #als #awareness