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Multiple System Atrophy Trust
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Dying

I would like know an idea of how my going to die ?,,..,cause I am petrified of dying anyway but would someone help me

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Hello Joe

I wanted to reply to your post but at first really didn't know what to say. Your post really struck me because your question was a question that Jax and I asked some time ago. Then we realised that no one really knows that anyway in life; whatever your health situation is. We started to ask another question - how are we going to live and how can we make the most of what life we have?

I've seen from another forum some of the issues you have, particularly with going out - have you spoken to your local MSA Trust nurse; maybe she could help. Also have you attended an MSA support group meeting? Whatever your situation I'm sure it would be supportive and put you in touch with others with the same issues and concerns.

I hope this is helpful, even in a small way. Take care, Ian

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Thanks for your reply

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Hi Joe, As Yanno says we none of us know exactly what our last hours will be like but it frightens us just the same. It may help you to know that the three most common ways to go with MSA are pneumonia from poor swallowing, A urinary infection (UTI) and just dying in your sleep.

MSA seems relarively kind to its sufferers at the end and many people, like my husband, just seem to become less and less interested in what it going on around them over a period of days or weeks and eventually stop breathing. Pneumonia is what it is and so is a UTI so your GP is probably the best person to talk to about them.

If you are at home your carer will probably be be given an emergency pack including morphine to help deal with any pain you may have and to help with any breathing difficulties. One of the things that morphine does is to suppress the feeling of suffocation which is something that frightens a lot of people.

If you are in touch with your local hospice where they specialise in caring for people in the last days of their lives I am sure they will be able to answer your questions and explain what can be done to make things easier for you. I hope this is some help to you.

I don't know about anyone else on this forum but when my husband died it was nowhere near as terrible as we had thought it would be.

In the meantime Yanno's is very good advice. Do what you can while you can and find joy in the small pleaseures in life

FredaE

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Thanks for your help

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Dear Joe45,

This is something that many people ask, understandably.

I would be very happy to talk through your fears if you would like to get in touch? Drop me an email at

samantha.pavey@msatrust.org.uk then we can arrange a time to talk.

Samantha, MSAT nurse specialist.

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Thanks for your help

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Hi joe

I have drawn huge comfort from Dr Kathryn Mannix’s book “with the end in mind”

We’ve also been building a relationship with our local hospice and that has also been so helpful.

Gill went through a period of fear and angst but that was quite some time ago. Today, we get through each day as well as we can, yesterday was really a lovely day together and we laughed a lot.

I hope you find some peace with this appalling condition soon

PeterH

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Thank you for your help.....

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Hi, we asked the very same question as we were told dad was likely nearing the end. We have an excellent service from the palliative care team at the Local hospice where dad is currently. He is still hanging on but sleeping more and more, sometimes for whole days. When he is awake we always manage to raise a smile. We surround him with love, cuddling him and telling him how much he is loved. The doctor there said that although he can't say for sure how he will die, it is likely that he will fall asleep and stop breathing. He did not expect lots of pain. Dad tells us he is not in pain and does not seem distressed.

I agree with the excellent replies you have had so far. We try to make sure we make the best of each day. Dad has a lovely view from the patio doors in his room and there are birds feeding nearby. He loves nature and his dog and on my next visit I will taking his dog Ella to see him. I hope that helps some..sending lots of love. Helen xx

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Joe you know your family best but do not exclude them. Of course they all have their own lives but they only have one father. The mother of a dear friend of mine tried to protect her by not telling her about a terminal disease until the very end. It took my friend many years to forgive herself for not helping her mother. She said I must be a bad daughter because i should have KNOWN there was something wrong.

If your family are as you say shell shocked YOU can help THEM by sharing any small pleasures you can find . An email telling them that you are enjoying watching the clouds rushing across the sky, or the birds singing or a programme on the television - whatever you can find to enjoy......... and strangely, looking for things to tell them about may help you feel better.

MSA is a hideous disease. There is nothing you can do to cure it, quite a lot you can do to make it more comfortabls and an awful lot you can do to make it worse. Anyone who remembers Leo on the old MSAT forum will know he called MSA The Beast and said if it thought it was going to ruin his life, it was going to have to work hard to do it as he was giving it a good run for its money. He was not quite so polite as that

Once he had come to terms with a future so different from what he had planned he regarded any thing that gave him pleasure as a victory over the Beast. In the mean time--we are here to listen to you any time you need us. We all know what you are going through. We all know how it helps to have somewhere to say things you can't say to anyone else.

FredaE

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Hi Joe - just to recommend Kathryn Mannix book ‘ With the end in Mind’ for you/family/everybody - it is quite inspirational and comforting. She was a palliative care clinician in a hospice.

Also, my partner has an open invite for counselling at our hospice - that might help you ? My partner has some complementary therapies at our hospice - they are calming and M feels quite blissful afterwards.

Best wishes Joe , C

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Thanks for your help

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