Hello can I ask how you all cope with the emotional outbursts that come with MSA? My wife (Jackie) laughs uncontrollably and she's said that because this happens she feels she won't want to go out of the house because people will think she's "Mental/stupid" and that she'll be embarrassed (which I think will only elevate the emotional outbursts". Now she laughs and if she's eating/drinking it can usually guarantee that she'll spit of the items so that again causes her upsets, it also causes her to lose control of her bladder so if it happens while she's needing the toilet then this makes her go more....... again causing outbursts of laughter/crying eventually. She's also recently been very loose with bowel movements and this has caused her emotional stress, it also causes tension between us both as I feel this condition is taking her mentally/physically fast.
Emotional outbursts: Hello can I ask... - Multiple System A...
Emotional outbursts
Hi Derek,
I wouldn't say I have uncontrollable fits of laughing/crying although, I do laugh or cry as I would say inappropriately. For example, if someone is telling me some sad news then I will find myself laughing and vice versa. Not long ago I was carted away in an ambulance, to the hospital, to be treated for sepsis which I thought was hilarious. Another trait I have inherited is what I've named truth Tourette's; this is when I see someone wearing something that I consider doesn't suit them I'll just tell them. The problem here is, it's more often complete strangers.
I'm not qualified to ever give advice but, I feel for you.
I struggle with bladder problems and have often wetted myself in public and have been caught having to relieve myself in some strange inappropriate places.
I must say too I hear you when you say "This condition is taking her mentally/physically fast.
" Only 18 months I was still managing to cycle on two wheels and hill walk for hours. I now cycle on three wheels but my walking is now reduced to shuffling; a walk that would have taken me an hour now takes me two hours. The only advice I can offer is; to keep a sense of humour and bugger what anyone else thinks or says.
We/everyone has the right to go about our own business publically, or privately, without comment or others' opinions.
Alec
Hello Derek,
I feel for you as we are in a similar position, how do we cope, well we don't really and now just get on with it.
It does frustrate and annoy me at times but I wouldn't be human if it didn't.
L will cough cereal over me when I'm feeding her breakfast. When she has a continence issue and I'm busy with operation cleanup she'll frequently laugh and it's really draining.
She doesn't speak much or answer people when we go out but she does laugh.
Yes, it will cause tension and what the answer is I don't know, but I'm doing what I can to support her and trying not to let her down at this time.
Smile when you can Derek, you wouldn't want the MSA but it's not all plain sailing when you're the carer is it.
I'm sure you're doing your best, you can't do anymore than that
Take care
Derek
Graham doesn`t have fits of laughing but has a smile on his face no matter what he is being told, even sad news, he doesn`t seem to react appropriately. Like Alec this time last year G was walking unaided to the village, getting himself up and dressed, but now struggles to walk just a short way, and has to rely on the wheelchair if we go out, and uses walkers indoors very slowly. His memory seems to be failing too. The thing is non of this seems to trouble him, but I on the other hand feel the brunt of it...Rubbish isnt it??
Don't know if it will help you to know why this is happening. It's called pseudobulbar affect (PBA) or emotional incontenience. It's secondary to a neurological disorder or brain trauma (Neurodegenerative diseases are by definition an injury to the brain). PBA is a symptom of ALS that many patients are unaware of and do not receive information about from a physician. I have ALS, initially believed to be MSA. I believe the origin of PBA is injury to the limbic system. A combination of dextromethorphan and quinidine can help.
Dextromethorphan is a potent sigma-1 receptor agonist, as well as uncompetitive N-methyl-D-aspartate (NMDA) receptor antagonist. Sigma receptor systems are densely distributed in limbic and motor related systems of the CNS. An alternative to the combination of dextromethorophan/quinidine is memantine, a NMDA antagonist.
en.m.wikipedia.org/wiki/Mem...
We're currently away on a family holiday, out of the blue my Wife (Jackie) just breaks out into laughter. We were eating a meal while sat outside, but she gets so emotional that she says she wants to go inside and sit on her own........ so we follow and help her inside but she doesn't want us to sit with her. Later she posts this on Facebook page:
Does anyone else ever feel like an outsider looking in. lm on holiday with family and I don.t really feel like I'm here with them.I looked in the mirror earlier on and all I saw was a sick old woman hardly able to stand.instead of a 51 yr old able bodied woman who was independent and did everything for herself.
Now I realise I'm dying and it hurts like hell MSA is beating me and i can.t stop it There's no let up and I've no strength left to fight this cruel disease thats taking everything away.
I don't know what to say, it breaks my heart. 😭😭😭
Aww, this is so sad and must have been difficult for you to read. I'm sure that the family holiday was intended to bring Jackie joy so realizing that it caused her an increased awareness of her struggles must have been hard to hear. Thank you for posting this as it is a reminder of the internal turmoil our loved ones with MSA go through every day.
Hi Derek,
Please also see our fact sheet on this topic
msatrust.org.uk/wp-content/...
Thank you so much for the link.
It must be so hard for you, but do please be assured that Jackie is probably only choosing not to share these sort of feelings directly with you and the family because she wants to protect you and probably feels that she is being too much of a burden already.
Also, speaking entirely for myself, the growing dependence on others means very little time to ourselves in which to process the enormity of what is happening to us. However hard to read, it is positive that Jackie is expressing her feelings somewhere.
For everyone I imagine there are moments when the kind curtain of denial starts to wear thin and our resolute attempts to fight for small victories and show our loved ones that we are still the person they once knew just become too exhausting to maintain.
Not everything feels the same every day or even every hour. Things will change again -albeit into different challenges. Wishing you and Jackie and all MSA carers and sufferers an extra helping of emotional strength. G x
hi Derek
My partner was the same he would laugh at things that wasn’t funny. Just laugh with her instead of letting tension build up. I know how hard it is I was there with my partner. Find ways it for you to make memories with it .
Yes msa can be fast. If there’s time you need to get space or find the tension building up go to the toilet or a different room for 5 / 10minutes it helped for me. I m sending you my thoughts
that’s so sad. We have no experience of this area. Maybe pads for the bladder weakness xx
sadly my husband was diagnosed with MSA-c 3 yrs ago though had symptoms for a few years before. His only emotion is depression. I’m at the one who constantly has the emotional outbursts. If anyone asks me how he is I immediately have tears. He has a catheter fitted with a flip flow valve which is easier to manage than the issues your wife has. He refuses to go out in his wheelchair in case we meet someone as his speech has become very difficult. I constantly reassure him that I’ll explains but his thoughts always become negative. He has only been out 3 times in 2 years which, I think, makes his depression deeper. This is such a hellish condition. He only wants to find a way out.
My dearest friend Maggie 💔 09/11/1952 - 13/01/2024 
What is considered the latter stages of MSA?
Lost my mom to MSA
