Originally posted by Claireflo
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It's easy to see why that's the case. She barely whispered the word MND at the first appointment "I think I can say the results are consistent with MND". We'd been told 3 weeks before that the EMG test wasn't really needed for diagnosis as it was clear that he had MND. She suggested he go away and think about riluzole and was surprised when he said he wanted to start it now. She told me my information needs were different to dad's and we needed to be led by Dad - she had no clue what my dad's information needs were as she'd only just met him and hadn't asked him.
After leaving the feeding tube decision as late as possible we were told he couldn't go on the waiting list until dad had seen her - after 6 weeks delay, by which point dad was struggling to eat and losing weight, she asked "have you thought about any alternative ways of eating?" I wanted to ask if she was suggesting he put the food in his ears but managed to restrain myself! By the time he had the op the first doctor couldn't fit the tube as his stomach was high up near his chest, thankfully a second doctor managed to fit it.
Whilst I've seen some worse horror stories about care others are receiving I plan to complain about her, when I can get the time and energy in between working full time and juggling various medical appointments/calls/emails etc for Dad. It shouldn't be this hard to get the care needed. Thankfully the community team have been great but appear to have done pretty much all they can in respect of the bulbar symptoms.
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Originally posted by Claireflo View PostI plan to complain about her
We know all too well that MND is an uncurable, progressive and fatal condition, which is why interventions to improve quality of life are of the utmost importance, be those interventions psychological, medicinal or physical, which is why treating people with such disdain whilst sitting in an Ivory Tower is utterly unforgivable.Diagnosed 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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Originally posted by Ellie View Post
I'm very sorry for being so blunt but... was it the hospital who said that your husband's breathing is OK or does he feel it's OK? (just wondering why he was given NIV, presumambly preprogrammed) xx
The NIV is set at very low levels, they have just adjusted to provide a small increase in pressure as he couldn't feel any pressure when he tried it.
His overnight oximetry results, and latest blood gases test- both from hospital are still within normal range, so no need to use NIV at this stage, but they do advise beginning to trial its use to get used to it for when he does need it. He can't face it at this stage, but knows that he will "need" to at some point. He hasn't yet decided whether he will use it when advised to do so. He has quite strong feelings about it.
The NIV's were issued at first respiratory appointment post diagnosis as this is a NICE recommendation. I like the fact that they are there to provide him with choice when the time comes.Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze
Sense of humour intact throughout.
Sadly passed away peacefully 2/9/22
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Originally posted by MMG View PostHe hasn't yet decided whether he will use it when advised to do so
I certainly won’t be able to stop using it without symptom management and sedation. My palliative care nurse is coming to see me tomorrow with the medical director of the hospice- to discuss how withdrawal will be managed when the time comes.
Diagnosed October 2020 - See my blog at https://www.myneurodiary.com
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PeterPan I was actually reading about the process re withdrawal. Its something I was avoiding and I still have not completed my choices/ care plan. But I have started now to read about it. I found good in on the 'my breathing mnd' site.
It must be a tough time for you and your family. I follow your blog and sorry re your having to give up your 2nd home (caravan).
But from reading information I now feel confident in explaining it to my loved ones.
Can I say thank you. By reading your post pushed me to learn. XLast edited by shelly21; 8 June 2022, 13:17.Diagnosed May 2021 bulbar onset als.
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Originally posted by PeterPan View PostMy palliative care nurse is coming to see me tomorrow with the medical director of the hospice- to discuss how withdrawal will be managed when the time comes.
IDK if Sue will sit in on the meeting, but I think it's fair to say that partners don't see it as a 'fact finding mission' in the way many of us do and, if she's there, it will be awfully tough on her... 😥💪 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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Originally posted by Ellie View PostIDK if Sue will sit in on the meeting, but I think it's fair to say that partners don't see it as a 'fact finding mission' in the way many of us do and, if she's there, it will be awfully tough on her... 😥💪 xxDiagnosed October 2020 - See my blog at https://www.myneurodiary.com
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Originally posted by Heather RI have been looking if there is any research done on different use of ADRT by people with mnd??Diagnosed 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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We have had some very harrowing discussions regarding ADRT with each other, the wider family, clinical staff and the hospice.
I am very much of the opinion that the more you know, the better you are prepared to make difficult decisions.
Early discussions centred around withdrawal of either NIV or nutrition and hydration (with or without a PEG). Awful as those conversations were, at a time when he was still mobile and could speak, eat and drink, it was what stopped him travelling to Switzerland because before those difficult conversations he thought it was the only option available.
Knowing that when the time comes he will have control over his end of life is what eased the significant emotional trauma that he was initially in.
In terms of me being included in those discussions, it is difficult and hard to hear, but no harder than hearing the diagnosis, but, we were advised that it is really important for me as next of kin to know what his wishes are, and I feel very blessed that I am trusted sufficiently by him to ensure that his wishes are carried out when he chooses.
Our sons are supportive and take the view that it is up to him, quality of life versus longevity is his choice. And only he can know when his quality of life is less than bearable.
Other family members have said that I should "make" him change his mind as he should fight on as long as possible. But, its not their opinion that matters and if I get grief from them then so be it.
I don't think that knowing his wishes is the hard bit, but I do think that being there beyond the decision actually being made will be unbearable. As he doesn't yet need NIV, he is quite open about withdrawing from use of his PEG but hasn't yet reached that point.
I worry everytime a new deterioration happens, will this be the thing that prompts his decision? I don't ask, as I don't want to encourage it, but I will support his decision. I have promised that I will, the hospice have promised to provide comfort and support at home, he trusts them too.
I wish we hadn't started this journey at all, but we have - and nothing will change the eventual outcome - but he can control the level of "suffering" he will have to endure and I am so supportive of that. His limits may be very different to someone else's, but I think in a strange way that he is still here only because his original fears of the "end" have been calmed.
Sorry that turned into a bit of a ramble.
Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze
Sense of humour intact throughout.
Sadly passed away peacefully 2/9/22
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MMG I also think wthink interesting post. Whilst I have minor speech I've explained to my partner what some of my wishes are. I haven't decided on some other decisions yet.
How awful that people are pushing their thoughts on your partners choices. Even worse wanting you to persuade him.
I've always said as a couple you both go hand in hand on this journey xxDiagnosed May 2021 bulbar onset als.
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Heather R Thanks for the explanation Heather.
Have you spoken to your Palliative Care Nurse about what might happen should such a situation occur? It's best to know in advance what the possible complications of not getting antibiotics for a chest infection might be and, more importantly, how palliative care can help you at this time.
Love Ellie 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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Originally posted by Ellie View Post
I've had that discussion Peter and found it truly empowering
Diagnosed October 2020 - See my blog at https://www.myneurodiary.com
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