It's hard to describe the sheer relief and joy when I finally manage a No 2. Until you can't go you couldn't. When you consider that most decent painkillers also bung you up it's even more satisfying. Appreciate the little things even when they aren't very little. πx
-
Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
I know - it was on Sky News!!
Congrats ππππππππβDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
β -
LOL ππxxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
-
I've had an hour and a half today over two sessions. What conversations we have eh?Each day is made easier with a bit of humour.Comment
-
And I had a close call - if carers had been 5mins late...βDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
βComment
-
I know how you all feel ! I think sky news need to do a one hour special on us xComment
-
BBC 4 might do one for their 'slow television' series. Just an hour of pained expressions and strange noises. πOriginally posted by Deb View PostEach day is made easier with a bit of humour.Comment
-
Oh the joys we have to endure π€¦πΌββοΈ and do we keep smiling? Of course we do π πͺπ» XJanette xComment
-
I am using my new bluetooth keyboard with my tablet and it is amazing! Unlike my bowels! πxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
-
Movicol did the trick here. We used to vary the volume depending on needs. I also used to gently massage Annβs tummy whilst in the act.Comment
-
I use Sodium Picosulfate but beware! It works amazingly well after roughly 6 to 10 hours so be mindful of when you take it. The first time I did I was on the loo at 1am 3am 5am and 6am but afterwards I felt euphoric. π€xBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
Comment