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Multiple System Atrophy Trust

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MSA C

mandg profile image
12 Replies

Does anyone out there with MSA C have more problems with the Cognitive side of things, aside from the usual issues going on ie balance, swallowing, speech etc etc etc!! I feel it is quite an issue with us.

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mandg profile image
mandg
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12 Replies
Yanno profile image
Yanno

Hello Mandg. Jackie has experienced some cognitive issues albeit we are told cognitive issues are not a usual feature of MSA. Jax is intelligent, had a responsible job and we were both very active. I sometimes think it's the difference of then to now that throws up apparent cognitive issues. For instance, she was a very competent driver (fast and skilful) and yet now she has problems 'driving' her electric wheelchair and working out if she is in drive mode or tilt mode.

My thoughts on this are that if the brain is struggling to control all the autonomic functions, trying to cope with dexterity issues, making efforts to make speech audible etc etc...it decides some things just aren't worth bothering with! I for one have some sympathy with the brain on that one!

I take simple precautions to ensure Jax isn't ever at risk (for example switching the drive off on the wheelchair when I'm not there) and everything else we can manage with a little patience.

I hope this helps, and good luck.

Take care, Ian

LadyL54 profile image
LadyL54

HiYes. My partner has the condition and I have noticed cognitive changes. Aside from the physical problems, he seems disinterested, unable to understand what I want him to do. Speaking to health professionals it is a symptom. Yet another one !!!

mandg profile image
mandg in reply to LadyL54

Hi LadyL54, yes that`s a lot like Graham,

HiI think you will find that all sufferers of the condition have various cognitive problems at some point. I tend to find that my Sue struggles to communicate or follow logic when she is tired. Tiredness has different levels as this condition does drain you mentally as Ian has said. But excessive tiredness can mean an additional underlying illness that needs to be resolved. But an afternoon snooze helps.

Hope this helps

Paul

MSA1 profile image
MSA1

I have MSA C and have problems with my balance and speech but not swallowing. I think everyone is different.

Carl

Worbs2 profile image
Worbs2 in reply to MSA1

Carl,I have same kind of symtoms with REM Sleep BEHAVIORAL DISORDER

Tonk profile image
Tonk

Hi MandgMy wife TJ has some cognitive issues, the progress of which have mirrored the physical decline.

The cognitive problems seem to be worse when she is first woken up. Often she will not recognise me or she won't recognise that she is at home.

It should be noted that TJ had a serious RTC in 1964 when she was fourteen which left her with a left sided neurological weakness and right sided brain damage. This has, according to her neurologist, altered the speed of the MSA's progress.

Sadly, MSA can affect every and any system of the body.

Take care.

Cliff.

Frenchoak profile image
Frenchoak

Yes definitely I’ve noticed a decline in mine! I used to be an administrator for 35 years so was good at organising things, remembering things, planning and spinning a lot of plates (best not try that now, I spill tea/coffee out of mugs so don’t even bother to try carrying them now!) and doing 50 things at once! Now my memory is shot, I think I’ll scrawl that down b4 I forget, then by time I get up to go write it down I’ve forgotten it already! If hubby asks me to do a few things, eg put kettle on, get biscuits out cupboard and milk out fridge for example, I’ll only do 1 thing & completely forget what the other 2 were! I used to know dates/times of arrangements but have to refer to diary all time now. I get very easily stressed and anxious too over quite (what used to be) trivial and easy things. I get ratty quicker too, no tolerance or patience with people. I also think “my filter” is going a bit, sometimes I say things that perhaps I shouldn’t! I cry a lot over things I didn’t used to. I stopped driving in June, sold my lovely car in September, as felt I wasn’t driving properly since earlier in year, too much coordination involved, which I found really stressful. People just thought I was being lazy not wanting to drive, but now I’m an MSA-er, they understand and it’s just easier not to have the car or drive myself. Does anything I’ve said resonate with you or others? I’m certain I’m affected cognitively, you’re not alone. Take it easy, things are definitely worse when tired or stressed, so we need to practise goood self care......yes, much easier said than done I know! Hugs 🤗

mandg profile image
mandg in reply to Frenchoak

Thanks everyone for your comments, glad to know ( I think) it's not just us.

The situation doesn't seem to bother Graham, not sure he is aware of what is going on, the Neurologist said perhaps this is a good thing! Oh well Just something else to deal with!!

CanAmK profile image
CanAmK

So my husband has MSA-C as well. He does present with higher level cognitive issues. Of note, I read a study recently indicating executive function loss was possibly going to be added to an updated list for the diagnostic criteria. Cognitive function is listed as an exclusion currently. So how it is at our place is my father-in-law says "It's a good thing he's all there" and yet there are troubles remembering conversations, use of telephone, following commands quickly, social skills. The higher stuff others might not notice. Best wishes.

Krista

ReverendBadger profile image
ReverendBadger

I seem to have a mixed MSA, some MSA-C & some MSA-P. symptoms. The prospect of having cognitive impairment is worrying. I don't think I am affected yet but I sort of self monitor by testing myself. e.g. by watchingTV progs like The Chase or Mastermind. I.m just as good as I was at getting right answers but only in my head, verbalising them is slow. This is a dysfunction in brain to voicebox muscle control so not cognition itself. To an outsider it sounds and looks like slow brain.

Furthermore my team (me + 1 other chap) won the "pub" quiz at the hospice 2 weeks ago. QED.

Worbs2 profile image
Worbs2 in reply to ReverendBadger

I think they call what you have MSA-M (MSA Mixed)

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