She is lovely though! I hope the distraction has helped for just a moment this evening. Xx
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Originally posted by Hairbsb View PostI have bulbar als. Currently sitting in a pub crying. Knowing I will leave my busband Clive behind and ill never see my children get married or have children.Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.
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Hairbsb I am so sorry you got the diagnosis you dreaded. I try not to think about what I will miss as it is unbearable. I hope you were given details of all the support now available to you, eg DS1500, SALT team etc? xBulbar onset diagnosed Nov 21. No speech but limbs ok so far.
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Hairbsb the application was made for me when I was diagnosed. I had to follow up with a phone call (my daughter did it as my speech was poor). This is for Personal Independence Payment which is not means tested. I think I was fortunate as I received my first payment within days of my diagnosis. xBulbar onset diagnosed Nov 21. No speech but limbs ok so far.
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Hairbsb
So sorry you got the diagnosis we all dread. It does get easier with time but a huge shock nonetheless. I still veer from positive and good days to the depths of a big black hole. We are all here for you.
Sending you love and hugs
🤗🤗🤗🤗 xxDiagnosed 3rd November 2021 Bulbar Onset
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