MS = never forgetting your sense of humor

It's MS Awareness Week! And, today MS= never forgetting your sense of humor! This was recorded at the breakfast table as we asked our nephew "do you know what MS is?" Click here to hear Gavin's message.


Best,
Christie

10 Things You (Do Not) Say to Someone Who Has Multiple Sclerosis

Hi Everyone,


I just came across this post via facebook and thought I would share. I don't hear these things often from my loved ones but I suspect other MSers do. No bueno. When someone close to you says these kinds of things, it can hurt.


*10 THINGS YOU (DO NOT) SAY TO SOMEONE WHO HAS MULTIPLE SCLEROSIS*

10. MUST BE NICE TO SLEEP ALL DAY
9. YOU'RE LUCKY YOU DON'T HAVE TO WORK
8. I CAN RELATE
7. JUST TAKE SOMETHING
6. JUST TRY HARDER
5. JUST BE POSITIVE
4. YOU JUST WANT ATTENTION
3. IT'S ALL IN YOUR HEAD
2. IT COULD BE WORSE
1. BUT YOU LOOK (GOOD)


Next week is MS Awareness Week. Give your MSer a hug.


Best,
Christie

The MS Buzz #9

The MS Buzz #9 now available! Last week’s chatter? Cognitive disfunction, CCSVI, speech difficulties and new hope. Click here to check out the tweets!  

Staying in work with MS - Marlo Donato Parmelee

I just love Marlo! This is a great video she made on working with MS. As many MSers know, it can be challenging to "come out" at work. I have not told my employers that I was diagnosed with MS (unless, of course, someone at my office is reading this very post right now then the cat's out of the bag). Yet, if I watch this video over and over, I suspect I will find the courage to talk about my MS more freely at work. Marlo is super strong!  I am always so impressed with her strength and dubbed her one of my heros after reading her book "Awkward Bitch", in which she talks a lot about her experience with staying in work with MS. What a super hero!


Best,
Christie

The MS Buzz #8

The MS Buzz #8 now available! Last week’s chatter? PML infections, MS in the workforce, and the geography of MS. Click here to read more.

How I Met Flo Fox

Well, I didn’t actually meet Flo Fox but did recently read about her and grew a particular fondness for her. You see, Flo Fox is a photographer (like me) who lives with MS (like me) in New York (that’s where I’m from). Sure the similarities stop here. I wasn’t on an NBC talk show, I haven’t had Joan Rivers visit me in my apartment and I wasn’t a friend of Andy Warhol. No matter, this is beside the point. After reading her story in the NYDailyNews.com article written by Clem Richardson, she became one of my heroes because she does not let MS get in the way of accomplishing what is most important.

Here’s how.

Flo Fox’s MS has confined her to a wheelchair and she cannot hold her camera because her fingers have frozen over themselves. She is also blind in one eye. But a photographer she still is because she gets folks to click the shutter for her, under her direction. She simply tells whoever is with her how to shoot and from what angle.  Cool right?

I haven’t shot many pictures lately and I really have no excuse. I think I have told myself over and over that my hand hurts too much, that I will drop my camera, that I cannot see properly to shoot effectively. Flo Fox, my new hero, has taught me that you must work through the challenges and not let MS get in the way of doing what makes you happy.

She is absolutely right. 

Do what makes you happy and do not let MS get in the way. 

Thanks for the inspiration Flo Fox!

Trying Their Wings, (c) 1986 Flo Fox

Some of my favorite quotes from Flo Fox:

“You know my greatest loss when I became disabled? I can’t even give people the finger anymore”. 

“I’m still alive. When you become disabled, you don’t waste time. You only do what is important”.

“A doctor told me that when you are diagnosed with MS, you can either get depressed or be euphoric. I decided to be euphoric”.

”People can be strong no matter what. I try to set an example by taking the negative and making it positive – both in life and in my work.

“There’s a lot of heaviness. You just take a deep breath, take funny photos, and not give a shit.”

And, check out her NBC interview with Tom Snyder: Tomorrow Show with Tom Snyder

  

The MS Buzz #7

The MS Buzz #7 now available! Last week’s chatter? Non-traditional MS treatment, Vitamin D, Flo Fox and more famous folks with MS. Click here to read more:  The MS Buzz #7.