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Multiple System Atrophy Trust
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Over 400 members - celebrate or be sad?

From a standing start 2 years ago, we now have over 400 members in this community. For many groups, this would be a celebration, but I find it so sad that over 400 people need to be here.

With any rare disease, often it’s those suffering and their carers who know the most about the day to day issues of living a journey that can be difficult and at times so worrying.

So together let’s celebrate that we have each other. Let’s celebrate the help we give each other; the common bond that brought us here in the first place and the knowledge that we are not alone.

Take care, Ian

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Hi Yanno, Thank you for this. As you say we need to celebrate that we can support each other, but it's sad that we have to be here in the first place. As a daughter of a father who has MSA, I am so grateful for the support received here. Helen xx

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Hi Ian

I am amazed and like you saddened and pleased at the same time. Two years already and 400 members!

I am reminded of the original MSA Forum, where a comparatively small number of people actually posted were and we were never sure whether we were providing what people wanted and tried to encourage others to tell us who they were and what would be useful .

We knew that there were patients and carers and their friends and families. There were medical professionals wanting to know more about a rare and nasty disease and people like me, building a new life but not wanting to waste their hard earned knowledge. And of course the specialist nurses keeping a watchful eye on the quality of information

It would be lovely to know if this forum is the same and have the 400 members any suggestions for making it more helpful to them.

FredaE

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Ian

Nobody wants a loved one to have MSA or to have it themselves? Yet 400 people in 2 years is an achievement? Sad as it may be? Everyone needs help at some time and it's good to know there are people to answer the questions that everyone struggles with?

It also means that people will start to recognise MSA as a serious condition and we can all help in some way? I am very proud of you as you were the first person who contacted me and pointed me to this site. So well done you!

Marie x

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I have found the forum v interesting although I admit also v scary at times. Mark has only been diagnosed for a year - the forum helps me as our close family seem to be in denial for the most part. They don’t want to talk about the future, or how they can support us emotionally. They don’t seem to understand that MSA dominates our lives completely and we are both searching out as much of info as we can to try and help. People are so quick to say ‘stay positive ‘which I feel is quite insulting given the devastation of MSA.

Thanks for sharing experiences, information and most importantly understanding the chaos created in our lives by this terrible condition.

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I so relate to what you have written , friends and family just don’t seem to get it and I have isolated myself a lot . I do not have the time , strength or energy to be bothered with them anymore . Our lives have changed so much by MSA and it’s hard enough just getting through each day .

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Am so sorry that you have isolated yourself but I completely understand that it takes energy to explain MSA to people. Some people are great but sadly others seem reluctant to get involved.

Please try and reach out to others - do you have a carers group you could go to or MSA support group. Our local hospice has a carers group and also offer counselling to family members.

MSA is exhausting and as a partner of someone with it I feel guilty for talking about the effect it has on me. But I know I shouldn’t as the more open I can be about talking about it - the better I will feel and the better I will be at helping Mark.

We can’t do this alone - forums like this can provide invaluable support - so keep talking here.

Best wishes

C

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Hello again

Don't be too harsh on the people around you as being positive is important. Having said that I totally understand that it's completely different 'being positive' yourself from a position of knowledge and understanding than someone blindly saying 'be positive' as a way of turning their own backs on the issues you face.

You may have read elsewhere in this group that Jackie and I made a pact with each other on the day she was diagnosed that we would 'be positive'. For us that's doing what we can, accepting that we can't do what we used to do and most of all accepting what is to come but not dwelling on it.

Your life has been turned upside down, life is being a total bitch to you....yet still give yourselves the space to enjoy the good things that remain.

We're always here if you need a rant!

Take care, Ian

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Thank you - and yes sometimes it I good to rant to people who understand. I wouldn’t put these comments on FB !!

We are both v positive and forward looking people. Yes we have our dark days but sometimes we need those around us to give us that bit of emotional support. We get great medical care, support from our wonderful local hospice and GP but sometimes we struggle with the other stuff.

Perhaps we need tips on how to talk to elderly parents about what we are facing. They are (probably understandably) very much wrapped up in their own lives and health and don’t seem to want to know more about M’s condition. I would like to sit down with them and have an honest talk about the future but as they are not my parents I don’t feel able to do that. They are basically old but in pretty good health generally. But definitely completely in denial about M.

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Rafaina, I would not like to tell you how to behave towards M's parents but speaking from personal experience I would suggest that this conversation that you want with them is the right thing to do and may well be better coming from you than from M.. If you sat them down and said Look - there is something here which is every parents worst nightmare but there is nothing we can do about it except make M's new life better. I know it is going to take you a while to come to terms with it but in the end we shall all need to support M and each other and make life as good as it can be.. I won't say any more now but I would like to talk to you about this awful thing because it will help all of us. I will come back to you about it when you are ready.

Denial is normal. After all if you don't believe it then it can't be true. !!! They know that the support they expected in their old age is going to be limited and without being selfish they will be worried about this too, They will feel they have no place in this new world. Give them a little time and then do what you said - go back to them and see if they are beginning to accept. In the meantime talk about the future in a casual way to help get them used to it. Not going to be easy for you but never underestimate the resiience of older people. How old is old?.

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Thank you for your lovely kind words - that’s really given me food for thought. It’s hard as I don’t know how I would be if my child had MSA.

They are both early 80s but are v active. You have nailed it by saying they are worried about their care later in life. I know they always expected M to be there for them.

I will have a think about how I’m going to approach them.

Thank you again.

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Ian

We are never sad as there is no point....just really pleased that there is a free access to all sufferers Inc carers and families to discuss issues and problems with others, gaining insight and knowledge from other sufferers throughout the world.

Thanks to everyone that inputs, whilst the condition exists.

Here's to a celebration that one day we don't need the forum as MSA is solved!!!

Until then happy posting and reading everyone.

Best

Paul and Sue

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It feels like a lot more than 2 years. I had only just started posting on the old site and it was pretty moribund. The activity on this site, yes ,for the worst of reasons is amazing, and during the final 2 years of John's illness it was an immense support. No matter what the subject matter, it always helped when a post popped up in my in box. A basic reminder that there are others, yes suffering, but also supporting, in the way that only fellow sufferers can.

Rafaina, this also speaks to your problem. Communication and understanding with the next layer of family beyond the immediate carer can be very difficult for a whole host of reasons. The basic denial of dealing with such a devastating illness can be compounded by relatives coming to visit for a relatively short time and seeing that everything is 'under control' not realising the huge mental and physical angst of non stop 24 hour care. This whole cycle can then breed isolation and resentment. It is very difficult to deal with and can have very lasting consequences in your relationships well into the future. Unfortunately I do not know how to solve it.

On a more cheerful, note, keep posting! It definitely helps.

Amanda

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That’s 400 people helping and supporting one another on this community - no matter the sadness that brought us here - that has to be one positive.

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