Proud carer

[Lassie1331]

I am the main carer to my husband who was diagnosed with MSA - C in 2021 though suffered symptoms for 5 years before that. He’s now immobile with many other problems, speech, uncontrollable hand movements, eyes not focusing but we’re managing with great support from my son and daughter who on Saturday along with my daughter in law and 4 granddaughters ran a 5K run in Inverness in aid of MSA Trust. We have found them very helpful with in formation and this forum. We are a close family who share our thoughts and feelings. To date we have not contacted MSA Trust apart from joining. Because we live far from most services it would be very difficult to engage. We are lucky to have good community nurses and now McMillan nurses have become involved to manage pain. I am so proud that my family, as well as physical support decided to do the run. At the moment the fund is £1530. 300% more than the target. I just hope it helps to further support for others.

[esj20]

Hello Lassie

that’s great news about the fund raising for MSA trust. My story is similar to that of your husband re timeline but at the present I’m still mobile with the aid of a wheelchair etc. but I do require assistance with daily tasks such as dressing and preparing food etc.

The MSA trust is invaluable to me and are a great resource so please don’t be shy in contacting them.

My family too are an amazing and I’d be lost without them.

I wish you and yours well on this journey life has dictated to us,

Yours

Alec

[Whitefeather1]

Morning Lassie, that's amazing to raise so much! I second contacting MSA Trust, they are invaluable. They didn't and as far as I know don't visit MSA patients ( I could be mistaken) but my friend had an appointed nurse who we could always contact on the phone. The advice, guidance and knowledge we received from our nurse helped us so much.

Caroline.

[Lassie1331 in reply to Whitefeather1]

Thank you Whitefeather. As we live in Scotland we only have one nurse to cover the whole of Scotland so feel it’s a bit unfair to take up her time. Initially I may have benefitted as a carer for her info and advice but since the acceptance of the condition had no known treatments we are happy to take each day as it comes and deal with whatever comes our way. Sadly my husband who has MSA has learned most of what there is to know, has given up on life and wants to go, which I find understandable but hard to hear. He hasn’t seen a neurologist since his diagnosis as we live 65 miles away from our nearest large hospital which makes it very difficult. We are pleased with the support we get locally from GPs, nurses and now MacMillan Nurses. I know I can contact them when we feel it’s necessary.

[Paul_and_Sue_Wood]

Lassie

The MSA trust are a great support for sufferers and carers alike with a vast amount of experience in all variables of MSA.

Their role is to educate support and research MSA and any support they get is a great help.

Please get in touch as they are always on the end of a phone or video call to help .

Paul and Sue

[Heronblue]

Hi Lassie, my husband had MSA-c and sadly died last June aged 61. We live in Edinburgh. Your family & friends are your greatest support, there wasn’t too much else here for help although MacMillan stepped in when I was diagnosed with cancer in his final months. You have done amazing work fund raising with your family. We relied on each other and our family and chums helped us get through. MSA Trust can answer questions and you have support on here, Karen