Sunday, February 27, 2011

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!  

Saturday, February 26, 2011

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!


Monday, February 21, 2011

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.

Sunday, February 20, 2011

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 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


Monday, February 14, 2011

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.

Thursday, February 10, 2011

Go Outside!

"Go Outside" by Christie Germans

This past Sunday was one of those days I could have easily stayed home all day, in my comfy clothes. My symptoms flared up, rewarding me with brain fog and wonky legs, making me feel tired. And, I had tons of projects I wanted to hang out in my home office to work on not the least of which was getting starting with on-line traffic school.  And, I’d been in my PJ’s since Saturday. There’s nothing wrong with that right? I had assured myself that I was perfectly content in never leaving the house. Until my sweetie encouraged me to make a walk along the beach in the afternoon, if I was up to it. Yes, I was, but said, “If we don’t leave now, I’ll never go”. I knew that I needed to get outside and I knew that I would love being outside.  I peeled off my cozy clothes and put on a fresh set and hopped in the car.
It was gorgeous down by the beach! Blue skies, sunny and mild; a perfect San Diego day. We took off our shoes and spread our toes in the sand. Ahhh! So nice. So relaxing. “This makes me so happy” I thought.  While we walked down the beach, my sweetie and I talked about how important we thought it was for MSers to get outside, to get some Vitamin D, to get some fresh air, to clear the head and move our bodies.  After all, some studies suggest that high doses of Vitamin D may help reduce relapse rate of Multiple Sclerosis, right? This was my daily dose.  The sunshine of San Diego.  Alright. I know what you’re thinking. It’s so easy for me.  I live in sunny San Diego and the weather down here is awesome. But, no matter. I used to live in the cold, cold weather of NY and little RI so I know it can be done! So, in honor of this gloomy month of February, let’s bundle up and go outside! Call a friend, grab your mittens, don’t forget the dog and breathe in some fresh air. 


Sunday, February 6, 2011

The MS Buzz #6

The MS Buzz #6 is now available! Last week's chatter? MS Pain, 2011 Neuro Film Festival, MS Fatigue Webinar and Phil from the Amazing Race! Click here to read more: the MS Buzz #6.

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