What are MS patients like?

[tokebi]

There is a resident at my LTC with quite advanced MS. I know about its physical symptoms but can't find a description of what it can do to mental state. He's extremely labile, so easily angered with smallest triggers -- another resident's wheelchair blocking his way, busy nurses not hearing what he said, etc. We had several altercation incidents due to his outbursts.

He grabs things from the medication cart, and when asked to return them, he becomes angry. I've already had my pens, BP cuff, stethoscope, hurled at me even when I tried to be gentle in asking them back.

Also he's depressed and very forgetful.

The only time he's not quick to anger and physical violence is when his wife (who visits daily) is there with him.

Is such personality change seen with advanced MS? Or is it something else? Could you share any experience dealing with MS patients? Any advice dealing with his behaviors? Setting boundaries doesn't work, it only makes him more violent.

[talaxandra]

Do not allow him to get away with throwing things at you - or with stealing them from you to begin with... It's not your fault he has MS and he needs to quit taking out his self-pity and anger on you.... As for what MS patients are like - well, their nervous system is falling apart. As you see, they are labile, angry, frustrated, full of fear and self-pity. Who can blame them? But it does not help them to be allowed to take it out on other people.

Though I believe people afflicted by MS so significantly they need to be hospitalised or institutionalised are entitled to some self-pity, in most cases this is not the cuase of their behaviour.

As I posted earlier, MS is strongly associated with cognitive changes, which are symptoms of the disease and therefore about as easy to control as visual disturbances, tremors, paralysis etc. A parental attitude of disciplining bad behaviour is not only going to frustrate the patient, it's about as useful as telling a person who's paralysed to get up and get their own glass of water.

This is not to say that behaviour modification strategies are ineffective, particularly in combination withother therapies (there's some interesting research on the effect of cannabinoids on cognitive MS symptoms). But recognising and acknowledging the source of the moods, behaviours and limitation reduces carer and client frustration.

[Jules A, MSN]

are you familiar with dr. zamboni's surgery for curing ms? google that. being cured would probably help him behave a whole lot better.

unfortunately at this time this is no cure. at best it is interesting and appears to be at least initially helping some people with ms however as with most things once severe damage is done it very often can not be reversed.

[morte, LPN, LVN]

Though I believe people afflicted by MS so significantly they need to be hospitalised or institutionalised are entitled to some self-pity, in most cases this is not the cuase of their behaviour.

As I posted earlier, MS is strongly associated with cognitive changes, which are symptoms of the disease and therefore about as easy to control as visual disturbances, tremors, paralysis etc. A parental attitude of disciplining bad behaviour is not only going to frustrate the patient, it's about as useful as telling a person who's paralysed to get up and get their own glass of water.

This is not to say that behaviour modification strategies are ineffective, particularly in combination withother therapies (there's some interesting research on the effect of cannabinoids on cognitive MS symptoms). But recognising and acknowledging the source of the moods, behaviours and limitation reduces carer and client frustration.

If this behavior was 24/7, I would agree with you. But it was stated that he can and does behave when his wife is present.

[talaxandra]

If this behavior was 24/7, I would agree with you. But it was stated that he can and does behave when his wife is present.

Unlike people with dementia, acquired brain injury, autism and other cognitive processing disorders?

Having both personal and professional experience with people who've had these conditions I agree that there is often some voluntary or controllable component, but there's usually considerably more going on.

[BackfromRetirement]

All opinions considered; MS patients should have a LTC facility of their own; specifically trained aids and nurses for this disorder....like Alzeheimers. Not all nurses are aware of how these behaviors can effect the staff. Many a great CNA and Nurse has left a position due to 12 hours of this behavior.

[morte, LPN, LVN]

Unlike people with dementia, acquired brain injury, autism and other cognitive processing disorders?

Having both personal and professional experience with people who've had these conditions I agree that there is often some voluntary or controllable component, but there's usually considerably more going on.

i would bet he behaves towards his wife, because he knows she could decide not to come....classic reward vs punishment...

[tokebi]

Since this guy is my only experience with MS, everyone's replies help a lot in gaining more insight. So, thank you all.

From the varied experiences of people, I guess the obvious is that MS patients can be as different as any. This guy seems to be way beyond how some of you described MS patients you've had.

How should I put it.... He has the temper of a toddler, the speech of a middle-schooler, in the body of a grown man. Seriously, the way he speaks, his intonations, sound just like a kid's.

Even his depression and anxiety (he's already on various psychotropic meds, btw) manifest in a very simple-minded way; he's constantly muttering repeatedly phrases like, "I hate this place," "I hate my life," "I miss my wife," "I hate you all," etc. No doubt he's lonely because he can't participate in any enjoyable activities due to his outbursts, He just hangs around mostly the nursing station -- I think because he knows pens and tissue boxes are abundant there -- watching busy nurses whooshing by back and forth, occasionally brighting up if someone strikes up conversation, more often getting frustrated with being ignored and burst into yet another "F*** you all! I hate this place!"

While many of his behaviors are unacceptable, what can you do when he has such limited cognitive ability? When he snags my pens or note pads off my cart, I can't really do much other than say, "Don't do that," and duck, becaue he does not think he's stealing. Even after gently explaining things, lay out rules, etc, he would forget ten minutes later. When he's in mellow mood, sometimes he does listen and seems to understand how his behaviors are not right and can be upsetting for people. He even apologizes at times. And yet, a few minutes later, everything's forgotten and we're at square one.

Given that he obviously delights in simple rewards -- friendly hellos, extra pens, compliments -- and that he does have intact long-term memory, maybe persistent behavior modification therapy would work. But who among us have the time to implement a systematic strategy like that? Maybe his wife can do something, having the magical power of soothing his temper. But alas, she must work full time.

Anyway, so... I don't know... I wish he could have something positive in his life other than waiting for his wife all day. On the other hand, it's not fair to others that this one resident creates so much disturbance, even possible injury.

[talaxandra]

Morte, I'm not denying that that's a contributing factor, but I doubt it's the only thing at play here. And unfortunately, if his behaviour is attributable to his disease, things will only get worse as the MS progresses, until his wife's presence makes little or no difference. By that time, implementing other strategies will be minimally successful. In the interim, knowing he responds to something consistently and positively is a hopeful sign.

Acknowledging the connection between disease process and cognition allows better management, now and down the track, than viewing the behaviour as a combination of willfulness and self-pity that ought to be met with parental-like disapproval and withdrawal.

Tokebi, I appreciate (and have shared) your frustration. You're right that managing this behaviour is really time consuming - time you don't have, even if in the longer term it may save time.

Ideally there are supporting staff - psych, neuropsych and OT are usually most successful on my ward - that can help set up and introduce a new program. In their absence strategies involving interventions that work (like the rewards you've already discovered), combined with consistency across the board, helps.

For instance, one of my dementia patients (who's under 40) asked everyone he saw to make calls for him - when his sister was rung six times, by six staff, in two hours, I put signs up at every desk instructing staff (including those who didn't know the patient and were trying to help) to direct him back to his nurses. the sign gave staff a prompt and an out, allowed staff involved in his care to monitor the number of calls, and over a period of about a week reduced his number of requests despite his deteriorating storm term memory. It also massively reduced staff frustration, which I think is at least as important.

I'm not suggesting that your patient's issues will be as easily managed, just as my patient has a multitude of other behaviour problems. But hopefully it's a start.