Sunday, March 31, 2013

Top 10 things that happened during MS Awareness Month

It’s a wrap! March 2013, MS Awareness Month, is over. And, so many important things happened in the MS community. Like, really big things!

  1. The biggest news? The FDA nod for BG-12. Whoop! Whoop! This is going to make a lot of MSers very, very happy. Why? Because this is another oral treatment for RRMS. Read, no injections and no infusions. Be sure to talk with your neuro about this, to see if it’s the right med for you. Good luck with the possibility! P.S. I think they changed the name to Tecfidera, something to be aware of, if you try searching out info on Google.
    Whoop, whoop! FDA nods Tecfidera!
  2. Jason Da Silva met 100% of his goal to help get his documentary, “When I Walk”, into theaters! Another whoop, whoop! Jason’s film is an emotional and inspirational film about living with MS and disability. It’s an incredible achievement and I, for one, can’t wait to see it!

    "When I Walk" meets 100% of goal! (c)

    "... honestly, the making of this film helped get me through the past seven years. As my physical body changed, it acted as an emotional and creative support system..." - Jason Da Silva
  3. We know a lot more about the relationship between salt and MS. Who knew? Read here about the suggestion that dietary salt can stimulate the development of MS. I know, I know. It’s a study about mice, not people, but still serves as great foundation to fuel additional studies to better understand the correlation.
  4. Our friend Kate Milliken is putting emotion first in the MS community through her work on My Counterpane. She’s “… building a tool called the Moodifier for patients and caregivers to connect them by their similar illness and how they feel about it.” If you are interested in supporting this cool project, you may do so here. Neat stuff, right?
  5. And, another one of our friends, Amy Gurowitz, has Robbie Benson talking about MS Soft Serve. Amy’s doing great work in rallying support for her project, MS Soft Serve. Please take the time to check out what she’s doing:
  6. The 13th Annual UCSD MS Symposium in San Diego was a great event that featured two amazing people at the podium. The overall message? First, Dr. Jody Corey-Bloom talked about symptom management, including understanding the side effects of your meds before attributing what you feel to MS. And, second, Dr. Timothy Vollmer talked about new paradigms in MS treatment and advised the audience to “…not treat on where are you today with your MS but based on where you night be at age 65.” Now if I can just get a copy of the presentation. So much good info but impossible to jot it all down in my notebook!
  7. celebrates huge statistics during its month of debut. This amazing new site reached over 16,000 “likes” on Facebook. Whoa.  Do go out there and check out it out. It’s a great space. And, who knows? You may see a friendly and familiar!
    Check out this amazing new site!

  8. One a personal note, my latest MRI showed no new lesions! Yes! Tysabri? Keep up the good work.
  9. And, my latest JC Anti Virus test results were negative. Tysabri? Carry on and get down with your bad self.
  10. Yet, my vitamin D levels are too low.  This means more 15-minute sun sessions, but certainly not running around naked.  
So as we bid farewell to March 2013 and MS Awareness Month, let’s not end our effort in increasing awareness about Multiple Sclerosis. Let’s continue to get out there, spread the good word about how to live a positive life despite the challenges of this debilitating disease. Let’s continue the dialogue about living with MS. You with me? 

And, if I missed important news this month, jot me a note here on the blog.

Best always,

Wednesday, March 27, 2013

Wednesday Wisdom - Don't Give Up

Courtesy of Los Angeles Chinatown Firecracker Run via Facebook 2013

Sunday, March 24, 2013

Handicapped vs. Disabled vs. Impairment

I have been thinking a lot these last few days about the word ‘handicapped’, ever since reading my buddy Cathy’s article on, “Language: From Handicapped to Disabled and Beyond”. In it she wrote about how using the ‘h’ word is unacceptable because of the negative and offensive connotation. The stigma stems from the original phrase ‘hand in cap’, involving the image of a beggar, injured from war and deemed helpless.

Cathy also described how MSers are “…generous, intelligent and hardworking people who deserve equal access, equal treatment and equal acceptance.” Cheers to that! Whoop, whoop! Cue in chants, “What do we want? Equal rights! When do we want it? Now!”

Let's disable the 'h' word
from our vocabulary

Photo: (c) 2012 C Germans
Yet, reading her article caused me to niggle a bit (well, honestly, it caused me to niggle a lot, I never seem to worry in small doses). I niggled that I might have used the ‘h’ word myself, right here on this blog. I asked myself, within moments of reading Cathy’s article, “Have I ever used the ‘h’ word? I certainly hope not. Yet, if I have used it, are people mad at me? Have I offended someone? Anyone?” It was impossible to remember, so I searched The Lesion Journals’ space for the word ‘handicapped’ and, sadly, discovered that I have used this word in my post about getting the disabled persons parking placard. Crap. My stomach hurt, full of regret. My cheeks flushed with shame.

I quietly niggled, to myself, “It must be clear in the article that my only objective was to describe the struggles of coming to terms with a disability. Right? I certainly had no intention of causing any harm. I just wanted to talk about my decision to get the blue placard and share my feelings of doubt, fear and guilt. What on earth was I thinking, using the ‘h’ word? This is no bueno. After all, I’ve lived with disability all of my life.”

I was born with a hearing impairment, ‘nerve damage’ they cited, in both ears. We (my parents, loved ones, teachers and the audiologist) always used the words ‘hearing impairment’, ‘hearing loss’ or ‘hard of hearing’. I never heard the other ‘h’ word uttered in reference to my hearing. Well, maybe it was said but I certainly didn’t hear it! Yuck, yuck, chuckle, chuckle. Get it? Seriously though. What gives? Why did it seem okay for me to use the ‘h’ word following my MS diagnosis?

Is it cultural? Ignorance? For a long, long time it seems that it has been socially acceptable to use the ‘h’ word in reference to someone who lives with disability or impairment or injury or loss or weakening or deficiency or incapacity or ill health or restriction or hindrance*. I’ve heard the ‘h’ word, you’ve heard it, we’ve all heard it. And, certainly, no harm was or is intended. Most people, by nature, are good people. Yet, cars have driven past the blue painted parking spots, those spots close to the front entrance of a building, and people have said, “Don’t park in the handicapped spot.” So, it comes down to education right? And, exactly how does one do this? Or, are we as human beings overreacting about the word and becoming too sensitive? What is the true action here?

For me, my first action is to forgive myself. I totally see the harm in using the ‘h’ word and will go about things differently. This leads me to my second action: spread the good word about disabling the ‘h’ word from our vocabulary and begin finding new, respectable ways to communicate with one another. What do we want? Just a little respect and kindness. When do we want it? Well, now.

How about you? What has been your experience in hearing or using the ‘h’ word? What do you feel about it? I’d love to hear from you.

Hope you’re well.


*Source: my computer’s ‘Reference Tools’ when I look up the words impairment and disability in the thesaurus. I tried looking up “handicapped” but nothing showed up. Seems like my computer has caught on, knowing not to use the ‘h’ word. So smart.

Tuesday, March 12, 2013

#LivingwithMS Tweet Chat

Our friends over at @Healthline, @MS_Focus and @MattCavallo hosted a great Tweet Chat this afternoon and linked below is the transcript. I invite you to read through this as you might find some good information, tips and other things about living with MS. 

Here are the topics discussed: 

Q1 What would you say is the most difficult aspect of living with Multiple Sclerosis?

Q2 How have you adapted to or managed the difficult aspects of living with MS

Q3 With any disease, it’s crucial to weigh benefits vs. risks of specific treatment options. Have you discussed meds with doctor?

Q4 Where have you found emotional support for dealing with MS?

Q5 What advice would you give to someone who has just been diagnosed with MS?

Hope y’all are doing okay.


Wednesday, March 6, 2013

The Buenos Aires Toothpaste Incident

I’ve got some very solid advice this week. Free, from me to you. This is all going to seem soooo obvious but, alas, I ran into a situation that I’d like to share with you, an incident that occurred during a vacation in Buenos Aires.

My advice? Do not brush your teeth with face soap. Here’s what happened:

The day was spent walking the uneven and sunny streets of BA (bee-ay), enjoying porteños dance the tango (yes, this really happened, practically at every street corner) and hanging out with Evita. Like good tourists, we ate steak for dinner and enjoyed some wine.

The uneven and sunny streets of BA

I began getting ready for bed at around 10PM, seriously early for Argentines, who are known for going to bed at 4AM (something about dancing and clubbing into the wee hours of the night), but seriously late for me.

After injecting my daily dose of Copaxone, I went to the bathroom to begin brushing my teeth. It was a perfectly normal routine. I simply squeezed a dollop of “toothpaste” onto my toothbrush and brought it to my mouth. Tube, check. Squeeze, check. White paste on brush, check. A perfectly normal routine. I’ve done this like 30,000 times in my lifetime already. This is a real number, believe me, I’ve done the math. After all, I am a number cruncher by day.

Within seconds of brushing I began to gag and realized that something had gone horribly wrong. Tears swelled in my eyes, the gagging continued and then the real fun began, I began vomiting. Ugh. Disgusting. And then it hit me. I brushed my teeth with my face soap. What?!? How on earth? And not just any soap; I brushed my teeth with exfoliating face soap designed to remove my age spots. Awful! I seriously gagged and vomited for several minutes and at some point during this horrid incident I thought about children going through this kind of torture when a bad word has been uttered. “Unimaginable”, I pondered, “Does this type of punishment really work?” After I dried up my eyes and rinsed my mouth, I contemplated how it was at all possible that I grabbed the wrong tube and brushed my teeth with face soap.

Now. I swear my sloshy brain state was not the result of the Malbec we drank that night. I asked myself, “Did my MS brain misfire and send the wrong signal? It is totally natural for me to think this, right? Why shouldn’t I attribute the Toothpaste Incident to my MS?” Call it brain fog, cognitive dysfunction. Whatever. I convinced myself that my MS really played a number on me that night, forcing me to choose face soap instead of toothpaste to clean my choppers.

Case of mistaken identify? 

Fast forward to the present. I’ve had some time to reflect and realize that it is so far fetched for me to blame my MS for not being able to (safely) identify toothpaste. Yet I find myself wanting to attribute my MS to every little physical and mental mishap. Yet, and you’ll likely agree, the Buenos Aires Toothpaste Incident was really just a simple case of mistaken identity.

Or was it?

I am sure I am not the only one who is always second-guessing things and attributing every single mishap to Multiple Sclerosis. Have situations like the Buenos Aires Toothpaste Incident ever happened to you? I would love to hear from you.

Hope you’re well.


Monday, March 4, 2013

Dance in your heart

Photo Credit: (c) Felicia Reinhard

You’ve gotta live with what you’ve got
Know what you can change
And what you cannot
And if your world falls apart
Dance in your heart

-Jay Alan Zimmermann, Incredibly Deaf Musical

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