Impaired social cognition in multiple sclerosis

http://www.ncbi.nlm.nih.gov/pubmed/23315621

Oh goodie.

As if it weren't enough that our bodies turn on us and make us dependent, and our minds lose things and start storing socks in the freezer and ice cream in the hall cupboard, it appears that we lose the ability to interact appropriately with the people around us, often the very people we need to keep us from falling apart.

This study looked at how people with MS responded to a film of four people sitting around a dinner table having a discussion. At various points in the movie, it is stopped and the patient is asked to identify the emotion being expressed by the person at the table.

Apparently we don't do so well at that.

Like autistic people...we seem to lose the ability to read people's faces appropriately, which might account for a few mixed experiences I've had lately.

Of course, this study also gives us an excuse for misunderstanding people. We can just trot out the statement, "Remember - we MSers fail the MASC! You have to tell me what you are thinking!"

Finally, a reason to have real discussions, instead of being expected to read minds.

Huzzah!

A Helpful Book

As a youngish and dating woman with MS, one of the things that has filled me with the most despair over the past several years is my loss of sensation in the...ahem...sexual areas. I consulted with my docs, whose recommendation was to place a bag of frozen peas over the...ahem...area in question and that that would help me feel increased sensation.
Well, I dunno about you guys, but frozen anything DOWN there doesn't sound too enchanting for me or the fellah involved. As one friend said, it's like going swimming in the Atlantic Ocean - cold at first, but okay once you're in...
Yikes.
Now, other than developing a jaundiced eye whenever I see a bag of frozen peas in the market, I haven't had much success with that advice. A friend of mine (who works with people with disabilities and their sexual health) and I got to talking. What if we combined the power of her knowledge of everything sexual and battery operated, and my nursing knowledge and the experience of someone living with MS, and we put together a helpful book?
Not a deadly boring one, but a light, useful one, with advice and drawings and some laughter and fun. That. we figured, could be a help to other people like me.
After all, MS is being diagnosed earlier and earlier, and it sounds gruesome to be sentenced to years and years without any idea of how to have a rewarding sex life. We deserve one, no?

But maybe that isn't what's needed. So we thought we'd ask you. In a short little survey, with no chance we can identify you, compiled on machines somewhere in the deep dungeons of the internet, impossible to trace. Well, maybe not completely impossible to trace, but I've got better things to do than find you. There are all those other frozen veggies to experiment with...

Here's the Blurb:

Dorothyanne Brown, a person with MS, nurse, and epidemiologist, and her
writing partner Karen Kalinowski, a Natural Health Consultant and Sex and Kink Awareness Educator, are collaborating to create a resource for people with MS and their partners about sexual intimacy. 

We've created a short survey, ten questions, to get a feeling for what your
needs are as a person with MS or a partner of a person with MS.

The survey is completely anonymous. We have no way to figure out who answers
it, we plan no cross linkage to any database or physician services. 

It will help us create a resource that will be most useful to you. 

Just click on this link and you will be taken to the survey:
http://www.surveymonkey.com/s/LSLN9XN

Please share widely with others with MS or their partners. Help us create a resource that will work for you.
Questions? respond here or email msandintimacy@gmail.com
And thanks!

Fog Horn

I am lucky enough to live near the sea - right near Halifax Harbour. It's fabulous. There are two sounds that make me smile every time I hear them - the noon-day gun, and the foghorns.
I wish I had one of those. I'd like to be able to blatt it out whenever I go to do something without thinking. Which is a lot of the time these days as my MS-brain gets more muddled.
Like when I signed up with my local newspaper (a shameless rag). I didn't realize I had agreed to subscribe in perpetuity. So when I changed my credit card and they sent me a note saying that my credit card had been declined and if I wanted the newspaper I should call them right away, and I didn't call, I ASSUMED that meant they'd discontinue my paper. Not here in nice NS. They ran it on for another month. Then charged me. Now I don't feel like I should pay for the newspapers I didn't ask for, but who really knows what went on? I surely can't remember.
Or when I go to buy something and buy it without realizing I have no money to pay for it.
Or when I send in a writing entry filled with errors and spelling and grammar mistakes cos I just don't see them.
That's when I want to pull the chain and blatt out a big foghorn warning for everyone who has to deal with me - but for me, too. For now, I'll just have to hope it stays foggy around here and pretend the ones I hear are meant for me...

Word Salad, Or gazing through a diver's mask...

The other night I headed out for dinner with some friends despite my feeling of overwhelming fatigue after the holiday. I was glad I had a sweetie to drive me because for most of the evening I felt as if I was wearing a diver's mask - one of those ones where you can just see out a tiny glass screen, while the rest of your head is surrounded with copper. I couldn't understand my voice level - I was sure I was shouting and kept trying to bring my voice down. I have no memory about our conversation; I barely remember what we ate except that it was delicious and so is stuck in my sensory memory. All the time I spoke I felt like I'd been heavily into the wine - my mouth needed thought to form words and they seemed to come out mushy and drunken.  Muscles for speech were sluggish and sullen.
We staggered home - me tacking heavily to the right and left (again, thank heavens I wasn't driving) and I fell into bed to sleep for 12 hours straight.
It's probably the worst I've been cognitively for some time, and reminded me of how I felt after a couple of days at work. It amazes me I was even able to show up. Small wonder I seemed like an idiot to others, or a grump, or a bitch. Who knew what my voice was doing? Or my mouth? I certainly didn't. I feel like I should apologize to everyone.

Being positive and all that crap

Well, it's sunny.  I am wearing my favourite turquoise shirt. I can still see well out of my left eye. I'm almost done a huge project. I managed to make goodies for church. People seemed to like them.

I did bring the goodies half an hour late, though, having forgotten the time of church. Because I've only been about 10 times already. Last week, though, I had a meeting a half hour later, so that information supplanted what I had had in my brain.

I got the results of my neuropsych assessment the other day. The results weren't that surprising, but the "instructions to employers" made me want to sit down and cry. Apparently I am so distractible I need small chunks of information as a time. I need people to look me in the eye to ensure I am paying attention. I can't be expected to do boring jobs. If I have a project, I should plan to do it in 10 minute segments, alternating with other jobs and breaks, so that I can maintain focus.

Well, heck, I've been doing that for ages, just not deliberately.  I start something, get distracted, start something else, realize I've forgotten to finish the other thing, and so forth.  I frantically try to order my environment, but I get distracted and put down a paper here, my glasses there. Then I can't see, so I go looking for my glasses.  And after I find them I have no idea where the paper is. Maybe the dog ate it. At least I think I have a dog. He's here somewhere.

Some days, as they say, it isn't worth chewing through the restraints.

Today, walking without my cane and experiencing total fallabout by the time I'd got halfway around the route, I wished for restraints.  And a comfy bed.
Today, as I hustled into church late, I wished for restraints, or a calendar that beeped at me more regularly. I need to put alarms on EVERYTHING and that is annoying.  Especially as I forget to enter stuff into my calendar or add the alarm.
And then there are those moments of "inappropriate sharing", when I wish my mouth had a bit of a restraint. But that would require the memory to remember what effect my talking had had before, plus the ability to read others, which I seem to be losing.
Aw heck.  Better go out the dinner on, and then sit right by the oven, so I don't set fire to it. It's just SUCH a good mental day.
And we won't get into the pain. I wish I could forget THAT.
Oh Goethe, you rock.

Examining the brain...

Went for my neuropsychiatric testing the other day - a full day of brain tests and questions of vocabulary and memory things and attention stuff. Was totally exhausting, and I could barely drive home - arrived back, called the kennel to take care of the dog for another night, and sat, too tired to eat or move for the evening before I fell into bed.
So, what are the tests?
Some of them were silly for someone with MS - depression inventories aren't accurate if fatigue is your constant companion.  You do sleep more than usual, you do cut back on social activities, you do lose interest in sex and other things you enjoy just cos you are pole-axed tired most of the time.
Some of them were silly for someone with an extensive vocabulary and multiple degrees. Defining words that are monosyllabic is not a challenge, even if I am slipping. Reading familiar words aloud would only be a problem if I had severe muscle involvement or significant dementia.
Math - more challenging.  Trying to figure out patterns - difficult.  Understanding instructions for one test was almost impossible for some reason - I started off wrong, and when the kindly psychologist explained it again to me, I still had difficulty processing what I needed to do.
Paired words weren't too hard, although it took me 4 tries to get most of them. What was most astonishing was the complete vanishing of the information - usually one has a "tip of the brain" phenomenon, where you try to retrieve things and a variety of options present themselves.  No options presented themselves. It was dark inside there. I could hear crickets.
Counting backwards was tough until I figured out the pattern.  Took me a while, and if I did the math correctly, the letters I was supposed to remember were not available to my conscious mind - yet I could say them, often. Weird. It's like when I type and words come but my mind is blank. Very very strange.
I think, generally speaking, I did okay on most things, but it wasn't fun. If I had had to do anything after the testing, I would have crashed. I was almost in tears by the end of the day.
I should point out kindly Psychologist did offer to break the session if I was tired, but I wanted to get an idea for how I would perform after a full day. I'm still tired now, two days later.
I get my report in a couple of weeks, just before I leave. I'm wondering what they'll show.

my brain aches....

Just had phase two of my cognitive testing for a study being done here in Ottawa - it involved one testing session, a second two weeks later, and a third in three years. It's supposed to evaluate cognitive changes in MS over time.
In some ways it was reassuring - I can still add most numbers, can think of new ways to combine sets, can tap the space bar at a certain rate. I failed utterly at the "reorganize the discs on the pegs" task and realize I need more time in kindergarten and soon before my abilities to grasp spacial solutions leave me entirely.
Remembering words, numbers, story elements - tasking! I had to close my eyes and block out all other stimulation to focus.  Wonder if I could do this during meetings at work?
Of course, got home and my blood sugar was a mere 2.8, which might have accounted for some of my fogginess.
It's difficult tracing the effects of different chronic diseases, and also I am wondering about the effects of medications and the causation of various troubles in my body. Where does one disease begin or end?  Where do the medication side effects become enough to discontinue them? What causes what?
I am so confused, and it's not just from the testing....


Curious about how you'd do?  Try going to this test site -there's a quick little test you can do that gives you a bit of an idea about some of what I did. http://www.neurology.ufl.edu/memory/cognitivetest.shtml

I am slowly going crazy, 1,2,3,4,5,6, switch

crazy slowly going am I, 6,5,4,3,2,1,switch....
as Sharon, Lois and Bram would have sung....
So here's the thing. Last year at this time I was barely coherent, exhausted, challenged with walking, numb, intellectually slowed.
This year, I'm the same, but my wobblies are a bit better, and now they are gesturing at me with the whole, maybe it isn't the MS causing the problems thing. Because I don't have a lot of spots on my brain. And, I suspect, because I am fifty and overweight. Oh, and I have grey hair.
So, I feel completely inconsequentialled out of life, while still left with the disability.  Which of course I'm starting to think must all be in my head, right?  Since I am not actually falling down and all. My arsehole neuro actually wrote several "supposedely"s in my history - ouch! So now I'm just making this up?
And then my disability cheque goes walkabout, and all I can think is oh GOD they are going to bounce me just cos total numbness and overwhelming fatigue and all that isn't enough, despite thinking it was enough before, and then I think, what about if they viewed my trip as a reason to punish me off...
And then I wonder if I really AM crazy and if my fatigue after almost any activity is just me being lazy or depressed or some such thing.
It's making me feel awful. Help!

I'm exercising doc, honest!

Brain Fitness Software Improves Cognitive Function in Multiple Sclerosis Patients Submitted by Denise Reynolds RD on 2010, March 18 - 14:53 All about: Brain & Nervous System 3Share Cognitive dysfunction is a common, often scary, symptom of Multiple Sclerosis. Cognitive evaluation techniques and neurorehabilitation studies have been used to greatly improve the dysfunction. A new brain fitness software by CogniFit Inc. May help improve cognitive function and skills of multiple sclerosis patients. Multiple Sclerosis (MS) is a chronic inflammatory disease that causes lesions in the brain and nervous system. It is reported that about 50% of people with MS admit to experiencing cognitive problems, such as the ability to pay attention, learn and remember information, solve problems, and use language to express ideas. Mood disorders and depression are also common which can exacerbate the cognition process. Some of the specific cognitive deficits observed in people with MS are: • Memory Dysfunction. This is the most commonly reported cognitive dysfunction in MS and occurs in 20 to 44% of people with MS. The type of memory deficit most often reported is free recall of recently learned material. Free recall is the ability to get to a memory instantly. • Verbal fluency is affected in some people with MS whereas verbal comprehension appears undamaged. Verbal fluency deficits usually take the form of slowed free recall of words that describe concepts and less often words that name objects. • Cognitive Fatigue. On average, people with MS tire more quickly during psychological tests. Patients appear to lose the ability to hold attention for a long period of time. • Impaired Planning Ability. One study reported that 40% of people with MS are less able to plan things than healthy controls. The independent study, published in the journal NeuroRehabilitation, found that CogniFit Personal Coach brain training software resulted in a significant improvement in 10 fundamental cognitive skills. Memory skill showed the greatest improvement, with a general increase of 21%. Visual working memory and verbal-auditory working memory improved by 20%. Other skills that showed improvement included naming speed, speed of object recall, focused attention, visuo-motor attention, and visual spatial working memory. Patients with MS can also use other techniques to help cope with cognitive dysfunction and memory loss: • Write everything down. Keep a diary, organizer, or notebook handy to make lists. Keep one calendar for all appointments and reminders of special days or tasks. • Organize the environment so things remain in familiar places, such as a fixed spot for car keys. Encourage all members of the household to do the same. • With communication, ask people to keep directions and instructions simple. Carry on conversations in a quiet place to minimize distractions and maintain eye contact. Repeat information to ensure it was heard correctly. • Keep the mind fit by doing puzzles, problem-solving games, etc.

Tightening circles

I am afraid, yes, as my friend Paula and I used to say to one another.

MS is sneaky. It makes you feel "almost normal from behind", another favourite family expression. I think I am the same as I ever was. But I'm not, and I find that inescapably hard.

No, it's not the physical symptoms. Of all the things I miss, it's the mind I miss the most...

Just had a lengthy talk with my ex, a man who knew me (as much as he was capable of) for the last 26 years. He tells me I've changed, that I am emotionally swinging back and forth on a rollercoaster, up and down, unpredictably so. He tells me I am not the same, should not trust myself in public, should warn those who deal with me that unexpected things may happen.

Normally, I'd tell him to get stuffed (I mean, my reactions to an ex are often different than they would be to another person), but he makes a good point. Before I left my job, I knew I had to leave - I was weeping uncontrollably, high as a kite one minute, low as a turtle's underbelly the next. I felt bipolar. It was the fatigue and the lesions seem to be in my mood area, perhaps.

I'm still the same - even his slight criticism of me has made me weepy. Why? Because I was offered the chance to do something interesting, and although I realized it was probably too much to take on, I was talked into a smaller role. Thinking about it now, I know I won't be able to handle it if I am challenged, which I probably will be. My memory losses are legion. Presenting is a terrifying thought, keeping track of conversations is impossible. I can focus for one to 15 minutes - but an entire half day? And remember things? In a crowd of 40 people with opinions of their own? And all the noise?

And imagine if I should break down and cry? I would DIE of embarrassment.

So I'm sad, because I realize I can't do this interesting thing. My circles of operation tighten around me. I feel my MS pants tightening around my body, making it harder to breathe.

It's a grief process every time, because I play with the idea that I can be somebody and then realize that that's all in the past. Now I will be a somebody, but a smaller one, more peripheral, girded about by my MS cerebral hug. Or is that a smothering?

Feeling the need to get drunk....;-) thus killing even more brain cells!

Fortunately I've lined up a helper who may be able to help me redefine myself. I just hope like hell she doesn't tell me to just think positive and do these things. I am too self-aware to do this, amongst my former colleagues. I still have a bit of my pride....