January 22, 2013

Impaired social cognition in multiple sclerosis


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.

January 14, 2013

"Sticks! Sticks!"

I just came back from five days in Havana Cuba. I'd gone down with my kids with the idea that they could help me muddle through the city, push me in a wheelchair if needs be, do all that stuff.
They were immeasurably helpful, and I'm grateful they were with me, given the potent mix of fatigue, sun and rum that was coursing through my veins (with a few prescribed medications that were labelled firmly 'do not take with alcohol!') Suffice to say my liver is having a pleasant little detox right now.

One of the best things I did was bring my Nordik Poles with me. I used them for balance and to give me a little push at the end of the day when walking was too hard. Or in the middle of the day, ditto.
My bearded boys, one son's gorgeous red headed girlfriend, and little ol' grey-haired me with my sticks made quite an entourage as we walked through the old town. Handsome Cuban men called out to us - "Hey, Gringa! Sticks!" as I wandered by.
I think they thought I was on some sort of mad fitness regime, taking ski poles through Havana.
Still, they worked very well, and I recommend them highly.
The wheelchair less so - the cobblestone and damaged roads in Havana would likely have vibrated my fillings out as I went by, or put my spinal column into shock.
My sticks and I, though, we made it.

Then I came home and slept for a week. But at least I'd seen Havana.

January 9, 2013

Being a bad patient

I've never been what anyone would call "cooperative". I'm far too mulish and convinced of my own intelligence to go along with anything without some resistance.

But around the MS thing, I do try and be a good patient.

Because I worked in primary care, and I know well how bad patients get treated. Non-compliant patients get treated like scum. No one asks if the patient had good reasons for not taking the prescribed medication - or if anyone ever asked him. No one likes the patient who misses appointments (in primary care in Ontario, three such misses without good explanation meant you got dropped off the doctor's list. But who determines if the explanation is good?)

Patients who argue with their doctors get branded with the "personality disorder" moniker and then get pushed to the bottom of the list.

So, as a nurse, I've always tried to be endlessly polite and then do my hollering AFTER I got off the phone. I take my medications (mostly) like a good girl, and try to be responsible about self-care.

Today I nearly lost it, though.

I was booked for a pelvic ultrasound for this morning at 9:50. They told me to show up 15 minutes early, but I'm wise and didn't. I drank water on the way so I wouldn't be frantic with the need to pee. I'm not pregnant but I suspect looming fibroids and my MS has tinkered with my bladder sensation and control.

I walked through the maze of the local children's hospital, where I sat and waited for my number to be called. It was. At that point I was able to register. I went back and sat down. And waited.

I was surrounded by pregnant women, alternately breathing and crossing their legs. If you've never been pregnant, you can't possibly appreciate what it's like to wait for a pelvic ultrasound. You are nervous, want to see the baby, and the same baby is tapdancing on your filled bladder.

With my middle child, I was so full by the time they took me, they told me I had placenta previa - when really I had too much pee in my bladder.

So I was sending soothing and understanding glances at the pregnant woman while gradually getting more and more uncomfortable myself, as the HOURS passed.

Eventually  - a full hour + after my appointment and with three more people to go before I could be seen - I couldn't bear it any longer. I went to the desk and politely told the lass that I had to go (in both senses of the word). She whispered she'd try to rebook me. Much was made of the fact that I'd already registered - perhaps that gets fed back to some assessment?

Anyway, my rebooked appointment is at the end of APRIL. In four months. Surely to God they had an opening before then. Not that I'm in any hurry to recreate this experience.

You can't tell me that wasn't punishment for me leaving.

And now I'm mad.