Today was so hard. I know we should have had wills already but we didn't. So Today we signed them knowing my husband will die not if. It was horrible. We are glad that is out the way.
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Katy Tanzey I wrote my will while undergoing tests. It was difficult but, as you say, it got it out the way. xxBulbar onset diagnosed Nov 21. No speech, feeding tube, limbs getting weaker but still just about mobile.
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Not an easy thing to do but hopefully getting wills and even thoughts for funeral arrangements written down will bring its own peace of mind knowing that it's done. We don't talk about these things generally but going through the MND 'journey' has shown me the importance of those discussions although i appreciate some may prefer not to have those discussions.
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I still need to sort my will. Funeral arrangements are more tricky. I hate the idea of everyone moping about. Once I'm gone I'd prefer people to get on with enjoying themselves! But then people might want a funeral? No idea if I should do what I want or please others.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!
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Hi TinyLady I always find myself grinding my teeth at the obscene prices charged for funerals. My wife and I have elected for 'quick cremations' with no funeral at all. Even they are not exactly cheap now! We prefer that the considerable amount of money saved should go to the survivor or our offspring and they can use that to fund a knees up in our memory if they wish. Obviously we won't be there to see or care whether they do or don't.ALS - Diagnosed 15/05/23. Limb onset - Nov 2019 - Hand. Overnight & some daytime NIV. Fulltime powerchair. Trying to stay positive.
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GeoffBeale I have done the same. Paid for a cremation, no funeral, no fuss.Bulbar onset diagnosed Nov 21. No speech, feeding tube, limbs getting weaker but still just about mobile.
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GeoffBeale yes, thats what I would prefer. Once I'm gone then I'm gone! I just worry about what my parents/ family expect.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!
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Originally posted by Claireflo View PostNot an easy thing to do but hopefully getting wills and even thoughts for funeral arrangements written down will bring its own peace of mind knowing that it's done. We don't talk about these things generally but going through the MND 'journey' has shown me the importance of those discussions although i appreciate some may prefer not to have those discussions.
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Originally posted by TinyLady View PostGeoffBeale yes, thats what I would prefer. Once I'm gone then I'm gone! I just worry about what my parents/ family expect.ALS - Diagnosed 15/05/23. Limb onset - Nov 2019 - Hand. Overnight & some daytime NIV. Fulltime powerchair. Trying to stay positive.
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GeoffBeale good in theory. But I'm the strong one here. I don't think anyone around me would cope with that conversation! They've stopped contacting me much and never visit. I think it would be the final straw. I suspect my wider family/ parents are firmly in denial of any of it! But I will make plans and decisions all the same.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!
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