My wife was recently diagnosed with MSA and we're both coming to terms with it slowly. We have a touring caravan and are away at the minute but I can't get her to come out of the caravan and socialise with friends.
I won't leave her in case she needs anything but don't know what to do. Am I being selfish wanting to mix with friends who all understand her condition?
Feeling really low at the minute and need picking back up.
Morning Seasider12, has your wife said why she doesn't want to socialise?
I do understand, My friend said she didn't want people staring at her like she was a freak.
How are your wife's symptoms, are they at the point where she can't be left? .
Could you pop out for an hour , then check in ?
I know you want to be there for your wife 100% but it's also important to look after you. Caring can be a lonely job.
Caroline 😊
Hi Caroline Her main symptoms are her mobility. I don't want to leave her in case she has a fall.
She thinks everyone is looking at her which they're not. I'm hoping she can come to terms with it and not let it turn her into a recluse.
Hi Seasider12, I completely identify with your situation in that your wife does not want to socialise because my wife does not also. In fact I am not sure that I want to either when we have always done things together.
I did ask the question at a MSA trust support group last year what other carers/patients felt/did. All the carers said that their partners did not want to go out and socialise as they had before this condition developed.
Sorry I cannot offer any solution to you about this, but it seems you and I are in the majority in that our loved ones do not to go out nor have visitors.
Best regards in a bad situation Andrew
Hello. I am so sorry that you find yourself in this situation. I was very lucky that my husband always wanted to socialise.Have you perhaps thought about having friends round to your caravan? You could always start off with one or two and gradually increase? They could always call round 'unexpected' so you don't get the blame 😉. This may possibly help and encourage her gradually to meet the same friends away from the caravan?
It must be very difficult for you being torn like this. Take care and I hope you both get to enjoy your time away.
Maureen
this is going to sound hard but when one member of a loving couple has MSA they BOTH have it and BOTH suffer and both need support. It may be earlydays but the only way we can fight the Beast is to stop it ruining what enjoyment we have left in life. Every enjoyable hour is a triumph and good friends are your allies. Reach out to them and invite the to stand by your side.
Hi Seasider 12.My husband was diagnosed firstly with Parkinsons and now MSA and for 12 months after his diagnosis I really struggled to get him to get out and about. He too felt that everyone was staring at him.
I really don't know what changed his mindset, although watching some people on YouTube with Parkinsons who would say make the most of what you have, while you still have it, seemed to make a difference. We now we go out for breakfast or lunch somewhere at least once a week. (I still work part time)
We too had a caravan but have recently changed to a motorhome as the set up is easier for us and as he no longer drives it makes life a tad easier for me.
Mel.
your wife may not feel like socialising as it’s not the same. Getting ready is a chore and not enjoyable. Just go with it and follow her lead xx
Advanced MSA / Towards the end
From OK to CPR in 4 hours!
Are we nearing the end?
What is considered the latter stages of MSA?
