Saturday, October 29, 2016

This Week in My Life: Week 43 of 2016

Another week, another lack of a symptoms series post. It's been a rest-and-recover week after my last trip and before my next trip, and there have been several days of really bad pain. :-( I promise to get up at least one of the remaining three posts in the countdown before the next TWIML post.

The view from here:

don't be afraid to stand out

voting absentee is awesome

this was not fun

What I made this week:
a different elephant model

probably the last lemon garlic grilled green beans of the season. :-(

roasting marshmallows in the dark wearing a headlamp as one does 

wrapper from delicious cone wanted to become a bird.

a big order of white elephants for a store window display with a "white elephant gift" theme

What I read this week:

It was the anniversary of Paul Wellstone's tragic death this week and a handful of Facebook friends posted something about it. Having a vague memory about him having MS, I decided to look it up and was pretty alarmed at what I found. Every news story (from Minnesota Public Radio to the New York Times) said that he had been diagnosed with a very mild form of MS - primary progressive. Ummm, what? Primary Progressive is the worst form of MS, as far from mild as it gets. There were also some bizarre statements from his doctor (a neuro, but not an MS specialist, from the Mayo Clinic) about predicting how his MS would progress:
Bartleson says while he can't predict with certainty, he says the most that should happen is Wellstone's right leg will remain weak. He says he doesn't expect the MS to spread to other parts of the body. At the most, he says Wellstone's left leg could be affected sometime over the next six years.
Seriously?! Pretty sure prediction of MS symptoms isn't really something you can do, especially like that. First, he says the most that should happen is one leg will stay weak, then he says the most that could happen is his other leg could have issues too within the next 6 years. No wonder people's understanding of this disease is so murky or just plain wrong, when stories like this about public figures are so full of misinformation.

I enjoyed this post from Katie Jennings that talks about navigating the tricky road of when and with whom to talk about your MS and how truthful you should be. Like her, this is something I think about a lot and always struggle with.

This post about anxiety over being a burden also resonated with me.

This story and video is exciting and full of heartwarming feels, and it's MS-relevant in that they mention MS a few times and this kind of technology could certainly help people with certain MS-related disabilities. As a musician and someone who worries about what this disease could potentially take from me at some point, I really loved this story.

1 comment:

Traci said...

Eyeroll about all of the mis-information that gets recorded and published about MS. It always seems to come out with celebrities.

Also, I was enjoying the steady she goes blog (was clicking on random posts). But she stepped away and isn't updating anymore, as I'm sure you know. Bummer! Don't do that with yours! You have readers!