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Now you can go into a restaurant and order steak, chips, a blender and a funnelHi, I'm Eddie.
Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
Still wondering what the future will bring.
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JamesW I hope your unwanted visitor is soon evicted! Nothing more annoying when everything seems to be healing well xDiagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.
Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!
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Thanks everybody for sharing thoughts and experiences around this.
It's an issue I'm struggling with if the time comes where a feeding tube is recommended.
I can get my head around accepting a colostomy / stoma for a long-term unrelated illness, because I'm aware of the advantages and potential quality of life advantages.
My uncertainties around a feeding tube relate to some pre-MND diagnosis diaphragm and stomach problems (Crohn's and hiatus-hernia), regarding the practicalities around that, together with the psychological impact.
I did see this useful decision aid link in Thumbprint Magazine though:-
2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...
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