Hello all.

[Glenn2014]

Hello my name is glenn I'm also suffering with MSA . It's been a challenge so far but my lovely wife and I are meeting it head on and it's drawn us closer together.

[Yanno]

Hello Glenn. It's so good to hear your comments. I have given up my work to be with Jax all the time which is just what we planned for our retirement, perhaps not exactly in the way envisaged. We are very close and try to enjoy everything we do together, the good and the bad.

[Glenn2014 in reply to Yanno]

Lillian and I didn't plan this either.

[Troublesome3]

Hello I was diagnosed three years ago and like yourself my wife and I are going to face all that is thrown at us head on also with help from others like yourself as the more we talk about it the more it will become known by others. Take care and keep smiling

[Yanno in reply to Troublesome3]

Hello Troublesome3, I would love to know who the "3" are! Without doubt as we move along this journey there are some bad days but also there are some very good days. I think you have exactly the right attitude of facing things head on....and without doubt ...keeping smiling.

[Troublesome3 in reply to Yanno]

Hi the troublesome3 are our 3dogs they sit by our side when we are down, they Liston when we don't want to upset each other and they give us some normality when we feel like we are going mad. What you must remember is that there will be bad days but as long as even on these days you find something to smile or laugh you will be able to get through them. Mark on top of have MSA also has COPD,cerebral palsy etc.but what we do is on his good days is we make a memory, sounds stupid but then at least we have something positive to remember on the stinky days. But we all cope different. Hope you are smiling. Take care.

[Yanno in reply to Troublesome3]

When Jackie was dx in September 2015 we said we would 'make every day count'. Since then we have travelled to Myanmar (Burma), and St Petersburg, trips to France and Wales, and frequent visits to our cottage in Devon. We are lucky enough to have an all-terrain wheelchair which helps but in the end, as you say, its being positive and determined that matters.

[Troublesome3 in reply to Yanno]

When I was diagnosed in late 2013 I had poor mobilaty and so got a mobility scooter which is a real help to me. Deb says she is going to get roller skates so that she can hold on to the back of it instead of having to jog behind it. We have been to Amsterdam, Greece, Turkey and Wales but the past year we have been unable to go any exciting places due to appointments and in the last 14 weeks of 2016 four hospital stays due to pneumonia and falls.so far this year already had 9 app, ct scan and speech therapy due voice get worse. But we have got a free weekend end of month and are hoping to go away with dogs to wales.Cold weather won't stop us and have got our thermals out. Take care.

[Troublesome3 in reply to Troublesome3]

Hello talking helps each other and Mark says it also gives him ear ache when I start ha ha. If you can't smile and laugh your problems seem 100% worse. Take care

[janehey]

Hi Glenn - recognise you from the UK & NI FaceBook group!

Like you, we found that MSA brought us closer, but for some families I know it is very difficult, and I would like to reach out to them.

[Troublesome3]

Morning Mark went to see doctor yesterday has now been told the pneumonia is being caused by small amounts of food/fluid going into lungs so has been put on soft food menu, also been told by resp team that his COPD has worsened so have got more test,appointments, etc to go to(already have19app this month). We seem to be on a piece of elastic connected to the hospitals. Yes I agree that some families are brought closer an some aren't but we all have our days when we break down and wonder why, and sometimes I wonder whether just because I'm the carer ( wife,cleaner,dog walker,joker,nurse,ect,ect) that I'm not a person anymore BUT then kick myself into shape take the dogs a walk complain to them about everything then realize at least I have not got all these problems Mark has but I do live through them everyday with Mark feeling useless as I can't take them away. We have also just donated our bodies to Birmingham medical uni so that it helps up and coming doctors etc. Also Mark has just had put on his care plan DNR and even though I agree with his decision it beaks another part of me. But that's enough of feeling sorry for myself just remember we all have feelings but some of us hide things away as not to worry others. Smile laugh enjoy the good times and find away to smile even on the bad.

[Beverley52]

You're putting on a very brave face, as we all have, hope you have plenty of support, and get some me time somewhere along the line.yes it is him who is ill, and not you, but it's just as hard on those who do the caring. Watching the person you love struggle daily to do the smallest thing is heartbreaking, and actually wears you out, physically and mentally. It's ok not to be ok. I believe that's the best way I heard of describing how we, as carers feel.

[FredaE]

One thing which kept me going, like troublesome 3 was the idea that I COULD just walk away and leave him to cope on his own. It was quite out of the question of course but it did make me feel that I had a choice and the choice was to give the MSA a run for its money and to get as much enjoyment from our remaining life together as we possibly could. This we did and there are a lot of happy memories.