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!

Dating and the Sow

It's a challenge, this whole dating world and the Mad Sow. It isn't easy to not bring it up. I'm rather young to be retired, I obviously don't go to work, and I look relatively fine.  Questions arise. I've taken to telling people I'm a writer but I need some more publications if I am to sound persuasive about it all. Maybe I can just say I have an inheritance that doles me out a dribble of money each month?

But the question is always there - how bad is your illness?  How bad is it going to get? If I fall in love with you, will I be saddled with a cripple? Harsh, but reality is many women with MS are left by their partners. And vice versa, though less frequently. Chronic disease is no picnic to think about. And though I deal mainly with crushing fatigue and numbness now, who knows what tomorrow may bring? I don't. My neurologist says my disease looks relatively quiet. That's nice and I'm grateful. The fact that I was diagnosed older than is common could be good or bad, depending on which study you read. I take my meds, I try to eat properly, I exercise madly when I can. I'm doing everything I can to keep well, but my brain might have different ideas.

But, let's be honest here.  I'm over fifty.  Almost everyone in my age group has at least one chronic disease. Many of them don't know they even have it. Many of them will die well before me of high blood pressure or stroke or diabetes or cancer. It's the idea of having MS that scares people - the image of wheelchairs and walkers and trembling limbs and spasms. Heck, that scares me, too.

The other diseases aren't as visibly disabling in people's minds. But as a nurse, I can see them.  I can see the smoker, coughing, and visualize their lungs, see the COPD waiting ahead.  I see people who don't exercise or who are scarfing down mallomars, and I know what they'll likely be told soon.

So I get slightly crusty when I'm quizzed about my MS. I'm good now, I tell people. I have no idea how I'm going to be tomorrow.  And neither do you know how you will be. Let's just pretend we are all healthy and live the life we have, right now.