Multiple System Atrophy Trust
325 members177 posts

Rather shell shocked

Have just watched the wonderful film about the English teacher by his son William and it gave me some insight as to what I may have to look forward to. Fore warned is to be fore armed but some deep thinking needed, I am eighteen months down the road. It was a great help though, the film, my thanks.

BorderBetty

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I've not watched the film but thought i would send hugs x msa affects people in different ways so just because it affects one person doesn't mean it will affect you xxx

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As already commented, the condition affects people differently. My Mum had mobility impaired however she kept her speech until almost the end plus feeding. Her swallow was only affected mildly.

Dad and myself cared for her at home all the way without outside help. We were lucky to be able to do that as she didn't need daily nursing help just caring.

There are lots of people on here and MSA trust members who will happily give you boosts and supports on your journey.

Big hugs to you xx

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Hello Betty. I can't add much more than has been said by others. Big hugs to you and of course lots of people here will share advice and help if needed. Ian

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What film is this, please? I've not heard about it.

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As mentioned below.

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Hi all,

As everyone has said MSA is very individual and people will not all get the same symptoms. If you have any questions at all please do contact our MSA Nurse Specialists whose details can be found here - msatrust.org.uk/support-for...

Also, here's a link to the video should anyone want to watch Will's documentary - itv.com/news/london/2017-03...

Best wishes, Emma

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Thanks Emma - I was wondering how to see the video

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Thanks for that. I've watched half of it. Inevitably you make comparisons, note both the differences and similarities. I thought the film was good though, very compassionate.

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Quite a difficult watch but I am glad that we did. Geoff and I watched it together. It does make some of the things that are happening in our lives more 'normal' seeing them on television and it did open up a conversation about the PEG feeding that we do need to have. Well done Will!

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Thank you one and all for your kind comments, this is a very good site I think, so I shall be very interested to keep abreast of everything to do with coping with MSA. Good to see Freda E's name on here too, a fount of knowledge. I am 73 so am interested on how the relatively elderly cope. I've had to give up cooking, too dangerous with hot pots and the walking is dreadful, but my brain is still ticking over, anyway enough about me, thank you again,

My name actually is Penny.

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I have only been able to watch a bit of the video. It was Billy all over. Even his fathers wonderful smile and positivity. Hard watching.

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I found it somewhere and watched part of it. Amazing film and very difficult viewing.The strange thing was that as I watched I thought "this was EXACTLY how Victor was" but then....... hang about...........Victor never dribbled, his speech and movement were only that bad for a few weeks at the end after he came out of a 10 week stay in hospital after a bad REM fall. Then he had to be moved with a hoist as he could not have sat upright. Other things were not the same either.

Even so it WAS Victor. The eyes maybe??????

Border Betty, please don't get depressed thinking that you will be JUST like poor Will's Dad.. It is absolutely true that everyone's MSA is different - sometimes very different but there is something about the disease that everyone who has lived with it can identify with.

Strangely, I look back on the last six weeks of Victor's life as a surprisingly happy time. In spite of having been a very private man and suffering from many of his worst nightmares he greeted the dozen or so regular carers with a big smile . There was nothing more to be done except make sure he was comfortable and the dreaded bedsores kept away. No point in fighting - just time to accept and enjoy the small things together.

Will must be a very special man and his dad and brother are (were) so lucky to have him

Freda

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Just watched the film. Lots of similarities to how John is suffering, including something in Paul's expression which what I think you may be saying about similarity to Victor. A brave film. Difficult to ask others to watch it.

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Dear Freda, Thanks for your message, lap top playing up this morning so will have to be brief. Wonderful film, I agree, and thank you for your words of wisdom when you must be bereft with Victor no longer here.

Penny

Border Betty.

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A friend has just moved into a new flat and I have been busy with that so I have only just made timeto watch it all through. Very difficult.

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Border Betty

I have just watched the film and yes it was hard to watch but I so wish it had been there 12 months ago. Then maybe my husband would have received some exercise. Maybe someone would have cared apart from his family? Sadly he died on 22/2/17 so this is pretty difficult.

He was told he had PSP with signs of MSA. 11 months later he was on a stretcher when he saw the Neurologist. I think he was shocked at how quickly it had advanced although I tried to get my husband an appointment earlier when I realised it was progressing so fast. Not sure if he was ever told that.

He then said he thought it was MSA as did the consultant he saw a month later. However a nurse thought it was PSP. Both these conditions are so similar that it's very hard to distinguish between them. My advice is to read up on both and at least you can ask questions?

Best wishes and good to see an MSA site. Incidentally make sure it goes on the death cert when you reach that point. It is important that people know about MSA and PSP.

Marie

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Agree with you about letting people know about MSA. It is much less unknown than it was a few years back although still unfamiliar to too many professionals

I am very sad to hear about your husband, it is not easy to accept. The fact that he did not receive as much help and undestanding from his medical advisers as he should have done must make it even harder for you

The only comfort to be had from late diagnosis and lack of exercise is that the final outcome would have been the same although the journey might have been made easier

Also agree that you need to read up so that you know as much as possible. The Multiple System Atrophy Trust has excellent factsheets about MSA which are read all over the world.

Many people are not confident about dealing with their medical advisers at all levels. The best advice to them is this; MSA is one disease where you end up knowing more about it than most of the people you are dealing with. You may not know the words but you know the reality. Ask people to explain simply and keep asking politley until you can understand what they are saying. You are not being a nuisance and it is very good for professionals to learn to explain in simple terms. If you can drive a car you can undertand most things - just don't panic and make sure you understand each bit of information before you go on to the next

Freda

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