Recent diagnosis.

[SuperLou]

Hi,

I’m new to the forum.

My mum who is 71 next month was diagnosed with MSA last week, it’s taken around two years to receive the diagnosis. It’s been horrible to watch her decline with regards to her speech and movement and cognitive processing. I have joined the MS trust for my mum and have been on the site reading through all the fact sheets which have been really helpful. I’m going for print the information for her she struggles with the internet. I guess we will follow the advice given. It’s like venturing into the unknown, but important to be as well informed on MSA as is possible can so mum can get as much enjoyment out of life as possible in the future. I wondered if anyone who is living with MSA or has a loved one with the condition was able to give any other advice? Thank you

[Westcott]

Hi superlou, my name is Sue and I was diagnosed 2yrs ago.Sorry to hear that your mum has this horrible disease it mùst be awful watching someone yòu love deteriorating . Despite living with MSA for 2yŕs I don't feel qualified to give advice as I've simply beèn muddlìng along without any support ànď feeling mòŕe and more às if I were canoeing UPthe Niagara Falls

However theŕe are some wonderful people on here who I'm sure will be able to help you in all sorts of ways.

I only stumbled across the forum a couple of days ago but already I no longer feel so alone. I'm afraid my husband is nòt coping with it at all well.

Following comments made to me I'm going to havè some selfish ME time now. Not that I can do much coz I çan only walk about 10feet before I eìther get dizzy and fall down, get a pain (arthritis) in my foot and fall down, get terrìble pain in my neck and shoulders anď fall down or ģet paìn in my stomach (2 majoŕ ops last year) and fall down!! and all that without benefit of gin. Try to keep a sense òf humour if ýou can it will keep you in that çanoe.

You and ýour mum will get through this tògether.

You're both in my prayers

Regards Sue

[FredaE in reply to Westcott]

i think you should complain to the gin manufacturers if they can't do better than that.

have you been talking to the MSA Trust there is so much reliable stuff on their web site and their nurse specialialists are a wonderful source of h elp

[Westcott in reply to FredaE]

HiFrèdaEI think I need to speñd some time going thru their website to see what's available. I'll jòt down anything that needs further clarification then call a poor unsuspecting ñùrse and try to clèàr them up.

Thanķs for the tip

Sue

[FredaE in reply to Westcott]

these nurse specialists are some of the best informed people in the uk about msa. I think you will be surprised about the breadth and depth of their knowlege and you will be quite safe in their hands, good luck.

[Hidden]

Welcome!, I think Sue summed it up there. Maybe have a browse of some of the saved posts on here, as they are all useful. My dad is still going almost 6 years after official diagnosis, so I would say pace yourself and look after your own energy levels. The MSA nurses can go over with you all the professionals that will need to be involved - I made a chart at one point🙂. when dad goes down a level with his health I generally feel overwhelmed and useless for a few days. And then it clears and I come out fighting, to make sure he's comfortable and getting the support he needs. sometimes there isn't a lot we can do and it's just about endurance, but I hope and think and trust, that just being around regularly can be comforting to our loved ones. Kx