Flo Fox, one of my MS heroes

Have you seen this short documentary yet? It's awesome. Living with Multiple Sclerosis since age 30, Flo Fox never let it stop her from doing what she loves most: taking photographs. Please take a moment to watch the clip, you'll be glad you did. And Flo? Thanks for being such an incredible hero for me. Hugs!

http://nyti.ms/1eFAB58

Stop smoking and get some Vitamin D, a theme from ECTRIMS

The sun vitamin has an impact
on the course of our MS
(c) cgermans photography, 2013

One of the three themes discussed during this year’s ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) was the “Environmental Triggers” of Multiple Sclerosis. Not surprising, more studies reveal that Vitamin D has an impact on disease course and smoking is really bad for our health, more so for our MS health.

Geez. This makes me wonder, “Good Grief!  Did I get MS because I was addicted to cigarettes for ten years?” Good thing I quite my habit of a pack a day of Marlboro Lights. And, while I am not necessarily getting more sun, I did start taking a daily dose of Vitamin D supplements. Hopefully this gets me on track to lessen the impact of my MS.

So, have a watch of this video, which features three prominent doctors in neurology. Dr. Lublin, Dr. Fox and Dr Wilner discuss the top advances in MS and the most interesting ECTRIMS presentations. You'll have to sign up on Medscape.com to watch the flick but it’s a good update on the chatter of this year’s event. 

Click here to watch the video: Top Advances in MS highlighted from ECTRMIS 2013.

Best always,

Christie

Sources:

Ascherio A, Munger K, White R, et al. Vitamin D as a predictor of multiple sclerosis activity and progression. Program and abstracts of the 29th Congress of the European Committee for Treatment and Research in Multiple Sclerosis; October 2-5, 2013; Copenhagen, Denmark. Abstract 96.

Hedström AK, Hillert J, Olsson T, Alfredsson L. Smoking and multiple sclerosis susceptibility. Program and abstracts of the 29th Congress of the European Committee for Treatment and Research in Multiple Sclerosis; October 2-5, 2013; Copenhagen, Denmark. Abstract 118.

Judy and Sophie's Story

From time to time we come across amazing stories and this one is no exception. Watch this video which captures the story of Judy, who lives with MS, and Sophie, a six pound capuchin monkey who helps her. I love what her husband says part way through the video, when he and Judy read on the web, "If you'd like a monkey, send us an email." Helping Hands? Keep up the great work!

Do you live a double life?

It’s hard living with a diagnosis of Multiple Sclerosis and even harder deciphering when to “come out” - who to tell, how and when. For me, telling my loved ones is easy and I’m very fortunate as I’ve read stories about how many MSers struggle with this, not getting the right level of emotional and physical support from friends and family. I feel lucky.

At work, however, I do not talk about my life with MS. So I’ve chosen to live a double life. By day, I work in an office (think Dilbert) amongst colleagues who do not know about my health status. By night, I live with MS amongst those who love and support me. 

It is exhausting being a secret agent. Hiding out in empty cubicles to make phone calls to my neurologist and discreetly leaving early for infusion, MRI and doctor appointments can be super difficult to cover up but I have chosen to hide my mission: do not reveal the MS diagnosis at work.

Read more about how challenging it can be to ensure my cover isn’t blown on Multiple Sclerosis.net. How has coming out with your diagnosis been with your friends and family? Work? Or, do you live a double life like I do?

Best always

Agent C.

Wordless Wednesday - Motivation

It’s not feasible for me to run around naked

I tried. I really did. Alas, sitting in the sun on my patio for 15-minute intervals twice a day did not fit into my busy schedule. Why would I do this? My Vitamin D levels are too low and, for MSers, this may not be a good thing.

Lots of neuros recommend that we get outside more often, to soak up that important sun vitamin, Vitamin D. They encourage this because a lot of research suggests that increased Vitamin D levels will influence our MS, positively. Yet running around half-naked is not gonna work for me.

Plan B.

4,000 iu/day of Vitamin D tablets. We’ll see what my levels are in three months, per doctor’s orders.

To read more about my story with Vitamin D and sun worshipping, check out this blog post on http://multiplesclerosis.net from a few months ago. Here’s an excerpt:

        “We don’t run around naked as much as we should”

I heard this during the 13th Annual UCSD MS Symposium in San Diego as neurologists fielded questions from the audience about the relationship between vitamin D and multiple sclerosis. And, they weren’t trying to be weird. Rather, these respected doctors encouraged us to monitor our vitamin D levels and get out in the sun more. Nothing new here, though, as we have all seen the same news bulletins: low levels of vitamin D may influence multiple sclerosis. And, there’s the hypothesis that supplementation with vitamin D may have a protective effect... [read more]

In the meanwhile, what has been your experience with the sun vitamin? Do you layout in the sun or take Vitamin D tablets? And, are your Vitamin D levels where you want them to be and, most importantly, how do you feel?

Best always,
Christie

In honor of 2,500,000 I ride

Who will y'all be riding for this event?
Me? I'm riding for the 400,000 MSers living in the US
and the 2,500,000 MSers in the world
Photo courtesy of Bike MS - Bay to Bay Tour