Review: Lorenzo's Oil

I just watched Lorenzo's Oil on Netflix. If you haven't seen it, you definitely should! The film is the true story of a family whose son gets ALD, a rare, devastating disease that affects young boys, progressively destructive in every possible way and leading to death. The parents refuse to accept the directions of the medical community (basically that nothing can be done) and insist on learning everything possible about the disease themselves until they ultimately discover and invent a treatment that has been miraculous for many sufferers of the disease.

WATCH THIS MOVIE!!

Reasons MS-ers Should Watch Lorenzo's Oil:

1. It's really good. Fabulous acting. Nick Nolte and Susan Sarandon are great. One scene in particular where Nolte's character sobs in utter anguish and despair in a stairwell is heart-wrenchingly powerful. 

2. ALD destroys Myelin, so this story is of interest to all of us with demyelinating diseases.

3. After discovering/developing/inventing the treatment, the next goal for the family was to find a way to reverse myelin damage, a goal that should be of MAJOR interest to all of us with such damage. The Myelin Project funds significant research in this area, so if you're looking for an organization to support, this would be a good one! The dream of repairing the damage that has been done is a huge one for me, as the chronic pain I live with would not at all be missed and there are so many people out there with disabilities far beyond mine that I so wish could be reversed.

4. The film contains some HUGE lessons on being an empowered patient (and/or empowered parent, caregiver, friend, etc.) on how to respond to illness, how to interact with your disease community, and how to interact with the medical/scientific community. The part of me who as a junior-high through high school age kid that was planning to be a doctor and who loves and is good at science is somewhat inspired to dive into research and find my own cure. (But then the part of me that is always fatigued and that likes the stuff I spend my time on now says, how exactly do you plan to fit the years of studying and intense thought into your life? And then we argue until we forget what we were arguing about.)

So watch this film, check out The Myelin Project and support them if you can, and be an empowered patient!

Good Vibrations

Headline from the awesome Lifehacker blog this week: "Phantom Cellphone Vibration is a  Sign You Need a Tech Break." This is when you feel your cell phone vibrating in your pocket, but when you check it you realize there was no vibration - or even worse, your cell phone isn't even in your pocket! So-called Phantom Cellphone Vibration is not a sign of psychosis, but rather an addiction to technology. The cure - take a break!

Tech Addiction or Something More Sinister??

Or - speaking from experience - I suggest it could also be a sign you have MS. During my early days of violently ignoring a range of symptoms from total limb numbness to constantly having to pee to an insanely itchy itch that could not be scratched to jittery, bouncy, jackhammer legs to falling down, I often felt this so-called Phantom Cellphone Vibration. I assumed I was going crazy. I was eventually diagnosed with MS, which explained most of the symptoms. But I still assumed the Cellphone Vibration phenomenon was a sign of being nutso and/or hyper-aware of the idea of receiving calls. When a few months down the line, I finally saw an MS-specialist neuro as opposed to a garden variety neuro I was stunned, startled, and amazed to discover that this was just another quirky MS trick. The neuro showed me that I had failed to realize the connection between head movement and this vibration experience. No phone calls for me - just Lhermitte's sign!

Magazine Monday: Ann Romney

I try to tune out much of the political scene, beyond researching the issues that are important to me and knowing generally where relevant candidates stand. I find politics and the associated media circus to be an energy sucker. I hate all the negativity and general ridiculousness. Beyond reading headlines, I'm pretty out of the loop when it comes to the current presidential campaign situation. So I was pretty surprised to learn that Ann Romney has a MS, a fact I discovered in the brief profile on her in a list of fierce women in MORE magazine. (Which is an awesome magazine! It's for the "mature woman" which is a bit beyond my demographic, but I find it to have much more substance and relevance than most other women's magazines.)

from May 2012 MORE mag: profiles of fierce women

Anyway, Ann has MS and I suddenly find her more interesting. Will I follow her husband's campaign more closely? Probably not. But if any of the headlines I browse reference Ann and/or Mitt + MS or healthcare in general, I might just click on and read. Here is a brief news clip of Ann discussing how MS and fatigue have affected her on the long, tiring days of the campaign trail:

On Motivation

Lately I've been struggling to feel motivated to start or finish various projects that need my attention. Maybe you've been feeling the same way? Check this out for some you-can-do-it power:

Now, if even that doesn't help, you should probably just give in to the feeling, take the suggestion of my amazing niece Kylie, and just grab a coloring book and crayons:

Kylie's hit new spur-of-the-moment composition "Color the Day Away"