So it goes on. Sat here with no care chair if that's the right word was told as per my previous post that the association were sorting it out but nothing. Busy June ahead developed a eye problem ( not mind related) Then a refit for leg brace as the ones that came are too small and tight followed by meeting with consultant. I know 🥺 I am moaning but sometimes it just gets to you. Love and light as always to you all as we continue this battle with a terrible illness. Xx
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Still no chair ... and on it goes
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Derbyram21 - sometimes it feels like an endless uphill struggle through treacle doesn't it?
If you can't air your frustrations here then where can you? I think we can all relate to feeling overwhelmed by things not going to plan.
Hopefully it will soon fall into place for you 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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Derbyram21 I'm number 1 moaner! It does get to us when we look forward to things that make our lives better. Hope it arrives very very soon 🙃🤩Diagnosed May 2021 bulbar onset als.
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Derbyram21it does get like that at times and you just need to let off steam x I do hope your chair arrives soon x
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Originally posted by Derbyram21 View PostI know 🥺 I am moaning but sometimes it just gets to you.
Diagnosed 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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