Very quiet again today methinks πππ€£π€xx
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
Hatches are battened down
Take careDonna
Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020. -
I've been quiet a while. Been 3 weeks in the hospice and really desperate to get home. I've managed to gain a bit of weight which is fantastic news.Diagnosis 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!Comment
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That's a good result ππOriginally posted by TinyLady View Post
Has any progress been made on getting you home? ππ€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.
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Ellie - I have had a needs assessment at last and an OT has had a look at my house. Got a powerchair but no ramps...
We have decided to hire a stairlift for now so I can still get upstairs while we fundraise and look at lift options.
I think council might help us pay for a wetroom. But still a long way off being ready to start that. However now I am rested and got some fat reserves I am far less wobbly on legs with walking stick. So I think I am going to ask to go home next week.
I hate wasting time away from my family and friends when time is so precious.
All my tests came back OK too - I think all my swimming must have helped with breathing. So PEG postponed for now too, I need time to get some things in motion.
Only downside is I've noticed changes creeping into my final limb... the right hand and shoulder. Was hoping it was just fatigue but weirdly follows the same pattern the left did.
Diagnosis 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!Comment
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Oh, that's fab - will the stair lift be in before you get home?Originally posted by TinyLady View Post
Sorry to hear that Tiny, there are no words of comfort, it just sucks. πOriginally posted by TinyLady View Post
Take advantage of everything in there whilst you can, including eating to put on another kilo π ππβDiagnosed 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
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Ellie - I had to laugh about your comment about each kilo... strange how that gain feels like a success where once it would have been bad news... I'm eating enough to live off for at least another 6 months π€£
Hopefully stairlist roughly when I get home (assuming they agree to my demands to go home π€).Diagnosis 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!Comment
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You have been missed.Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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- I'm not sure why I came on here so much less. Think I was trying to adjust to so much going on and the shock of diagnosis. Good to know you didn't forget me πππDiagnosis 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!Comment
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I'm glad to hear you're getting all the support you need...Originally posted by TinyLady View Post
We'd never forget youπ€πInitial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.ββββββComment
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I've had the company of a badger every evening here in the hospice. I was putting peanuts outside for squirrels and birds and then there he was outside the window one evening! He likes peanuts and custard cream biscuits...Diagnosis 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!Comment
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TinyLady that sounds amazing π€Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.ββββββComment
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