Thursday, June 4, 2015

Nani's MSBS

I never intended to take a long foray into medical blogging. Sorry if you are here looking for cute baby pictures. I hope this makes up for it. 

                                          She still really likes the fan. If she got her shoulder a little more exposed this could be a true 80s photo.

I promise to wrap it up soon, but fist a correction. The other day was INTERNATIONAL MS Awareness day. Not National. No idea how I got such an auspicious occasion pegged wrongly. Actually I have lots of ideas. They mostly start with "Mom!......" and end with "So what?"

Flippancy aside, I had considered this post's title as  a separate site to catalog some interesting things I've come across along the way to nowhere and which I might want to keep an eye on in the 'what is happening to my brain?' department. Along with some personal  updates for my records which are to date loosely kept in my head.  Which is not a super secure or reliably easy accessible location these days.

The latter reason I feel a bit funny about ( no one wants to hear about your hurty knee). But I've found over the years I appreciate learning  from other's experiences, research, experiments,  or mistakes. Why not add my own? And I'll promise to keep it clean, Though if you've read some of my kids' antics and you've come back, I think there is not much of a problem with what you can handle.

So first in the fascinating field of research, is this new discovery. Which could lead to new mechanisms for delivery and therapies for a host of diseases. Which is great news considering this study. Though technically previous studies would have put me firmly in the progressive and wheelchair bound camp  several years ago. So I take them all with a grain of  salt.

And when studies are given grants to study the prevalence of falls in the MS community, I kind of wonder about the seriousness of the researchers. Let's  take a group of people prone to balance issues, sensory issues, and feelings of not knowing where their limbs are in relation to anything else in the world and see if they fall down. A lot. Sounds like a prank more than a study. Wish I could get my hands on some grant money for a study or two. I'd find a way to work kiwi mojitos and white sand beaches into it for sure. And I would sacrifice myself for science and offer to be a guinea pig. (As the parameters of this study have not been set,  please do not send applications at this time. Donations? Why not?)

Its a fun game of extremes I often play. Something new will pop its head up and present  limitless rabbit holes of research and articles to follow. And for a second I feel a glimmer of, wait , what's that? Could it be, hope? And after weeks of excavating and spelunking I come up for air and realize, no. It was just the triple cream brie smooth talking, and now its gone. And all that's really left is a host of poisons that may or may not help me before they kill me. And the cheese rind.

But since we've come back to reality, we need groceries, and obviously more cheese. So then it's head down and back to the daily grind until the next shiny object  appears. Tune in next week for More of What Is Not Here That You Hoped Was and Most Likely Never Will Be. Amen.

Generally when I start these meandering journeys I  often get inspiration from Wheel Chair Kamikaze
Also when I come across something I don't quite understand, like most of it, I think 'I'll just wait until Mark explains it.' Sometimes it helps. Or I think it does and that's enough for me to go running to my neurologist asking for her thoughts secretly hoping it will earn me points in the 'sure her brain is atrophying, but she's still really sharp' department.  I don't know if it works or she silently adds points to my EDSS rating with each new discovery. Ignorance is bliss. I'm happy.

I am actually planning on picking her brain, ha ha, seems only fair, on the discovery of a  lymphatic network in the brain. Maybe she'll write back its old news, or junk news, or only pertains to mice and we're back to square one and mai tais.  Or maybe the discovery could shed light on how rogue immune cells get to the brain to attack the myelin. Not a porous blood brain barrier but a secret backdoor through the lymphatic system. But I still have my skepticism (I have  a lifetime supply) Are  the cells there to destroy the myelin, which has been the current thinking ,or to clean up what is already falling apart? Which has been bandied around for a little bit. But  since there is an Internet and no answer that has produced a cure, anything is  fair game in my book. Or blog.

No comments: