Hi Lost my beautiful wife to this terrible condition after 18 months .The thought of what she went through is tearing me apart ! As they say it’s good to talk ! And I do feel better writing something like this to others that have similar experiences Looking to helping any way I can when the time is right Thanks
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Petersnd janice I'm sure you have plenty of wise words, knowledge and advice to impart Peter, and a lovely way to honour your dear Jan. xxDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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Petersnd janice I’m sorry for your loss but welcome
Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.
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Welcome Petersnd janice - I am pretty new to the forum and I'm sure will benefit from your advice. Just sorry that you lost your beloved wife to this condition. Sending gentle hugs 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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Originally posted by beg View PostCan’t work out where on Forum to find out about availability of carers in South Hampshire for respite for my daughter whose husband has MND. They’re doing their best but totally worn out & I’m 600 miles away.
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