Newly diagnosed

[5456partner]

My husband was diagnosed with MSA in December and we're feeling pretty overwhelmed with it all. As well as all the physical limitations there's so much paperwork and also trying to get the right equipment to make our lives easier. Reading on here about how important it is to make the most of each day we're really struggling to do this as he has very limited mobility already and is also in intense pain a lot of the time as he is catheterised and this has caused him a lot of physical trauma. He's on a list to urgently have a different type of catheter fitted, but in the meantime he's finding it difficult to focus on anything else. We 're just hoping that once this is resolved we'll be able to find some quality of life again. This all sounds like a big moan, but we are extremely thankful for all the incredible support we are getting from friends , neighbours and our church, and of course the amazing MSA trust, what would we do without them? Thanks for listening to me.

[Gill-C]

We are all here for you. It’s a good place to vent. Feel free!

It is daunting and overwhelming and I found not helped by pressure from people urging enjoyment of every moment and achievement of bucket lists. Sometimes it’s enough just to get up and manage the day!

All I can offer is to pace yourselves. Make lists of the things that are swirling round in. your head as needing to be done and be patient. They won’t and can’t all be done at once, but gradually they will fall into place and you’ll be able to delegate some tasks and even tick a few off as completed.

Thinking of you and sending strength!

[Yanno in reply to Gill-C]

I think Gill is so right. There is a lot to take in at first and the list seems never ending however you will surprise yourself and soon become a mini-expert in your own right. I hope things sort out with the catheter soon.

Take care, Ian

[5456partner in reply to Yanno]

Thank you so much for your kind reply. I'm probably going to be in here a lot!

[5456partner in reply to Gill-C]

Thank you so much Gill, it's great to have some very understanding and kind words. I'm sure you're right and things will fall into place one day.

[5456partner in reply to Gill-C]

Thanks again, that's really taken loads of pressure off. We had a very bad night and I'm still in my PJs and it's gone 11.30 am, but I can now say it doesn't matter!

[Gill-C]

it really doesn’t! My only bucket list is to get through each day with a glimmer of dark humour left 😏 If on a good day you both manage to achieve an extra task, then celebrate - you have climbed your own Everest! X

[youcanwin]

We wish your husband good health and a lot of resolve and commitment to the family. My wife is too down with MSA and is immobilized for the past two years. You need to make your ecosystem strong and sustainable in India medical support system is an issue. Watch for his weight and muscle loss.