Monday, March 24, 2014

Seeing MS - Exposing the Invisible Disease

"Most symptoms of multiple sclerosis go unnoticed by everyone except the person living with them. One day they can alter your memory, the next your vision. Striking without warning and leaving no trace, they are invisible." – Seeing MS

I recently came across this amazing creative project, hailing from our friends down under at the MS Society, Australia: Seeing MS. It features the work of nine photographers who worked with MSers to portray the invisibility of nine MS symptoms: fatigue, blurred vision, numbness, brain fog, spasticity, hot and cold, pain, dizziness and loss of balance.

We often talk about the invisibility of Multiple Sclerosis and this MSer: Photographer collaboration successfully and powerfully illustrates MS symptoms through photography. It is so difficult to describe what we live with and understanding our symptoms can be difficult for others, or non-MSers. These photographers have done a dynamite job depicting what the invisibility of MS feels like, a truly incredible accomplishment.

Take a moment to watch the video below, read through their site and download the app (cool filters!) to create your own image of what your MS symptoms are like.

To see the whole project and to make a donation to the MS Society, Australia, check out their site

Take care!


Saturday, March 22, 2014

Let go of what you can't change

Photo courtesy of Finer Minds
I really like this quote and it serves as a great reminder for me to think about letting go of stuff I cannot control. But, I will admit, I find it difficult to do this sometimes. Do you find this to be true, too?

Letting go. Exactly how does one do this? I try my best to move through the bad stuff, like fatigue, but sometimes I just have crummy moments, sprinkled with a bit of self-pity. I try to acknowledge these moments and accept that this is just how it will be, for the time being. I try my best (practice to progress, not to be perfect) to look forward to a new day tomorrow. 

I cannot control that I live with Multiple Sclerosis but I can control how I deal with it. Sure, it’s not easy but I must at least try. So, I write, I work, I play, I garden, I shop, I laugh, I photograph, I read, I cycle. These are all things I do that make me happy, that make me forget that I am someone who lives with MS, if even for just a few moments.

So, I guess my way of letting go is turning to things that I enjoy doing, trying to move on with life. How do you get through bad moments during your life with Multiple Sclerosis? How do you let go?

Hope you’re well.

Best always,

Thursday, March 6, 2014

7 days of MS Awareness Week – Day 4

"We Write for the Fight"

Extra, extra, read all about it. "Something On Our Minds: An Anthology to benefit the National MS Society" is now available! This is a great book filled with stories written about MSers and those who love us. I've got my copy and it's really good. 

The best part (aside from the wonderful writings of course)? 100% of proceeds will be given to the NMSS. Buy your copy today: Something-Our-Minds-Anthology-Sclerosis

Press Release - We Write for the Fight

Hope you are well this MS Awareness Week, take care!


Wednesday, March 5, 2014

7 days of MS Awareness Week – Day 3

"Why do you connect?"

Every connection really does count and the National Multiple Sclerosis Society (NMSS) is running a great campaign this week, asking MSers and their loved ones to share connection stories with others. 

Here's my submission: 

So, on this 3rd day of MS Awareness Week, I invite you to think about why connections are important to you and share your story. Simply go the NMSS website here:

Cheers and hope you are well this week.


Tuesday, March 4, 2014

7 days of MS Awareness Week – Day 2

Special Report from Multiple


Our friends over at put together an incredible report, "Special Report: Oral Treatments for MS". It’s based on the recent MS in America 2014 survey completed by over 5,000 respondents.

Two things popped out to me as being pretty significant:
  1. Did you know that oral meds are used by nearly a 1/3 of MSers?
  2. Did you know that over 50% of people using injectable medications for MS are considering making the big switch to oral meds?

Why not take a few moments to check out their presentation? It's full of good information about the mindset of MSers and the decision to take new oral therapies to treat MS.



Click here to read the full report: Oral Treatments for MS
“Special Report: Oral Treatments for MS”, February 28, 2014, from MS in America 2014 survey,

Monday, March 3, 2014

7 days of MS Awareness Week – Day 1

“You’ve got this.”

MS Awareness Week kicks off today and will last through March 9 2014. So, what better way to kick off this important week than with a little video?  As part of a project hosted by Healthline called “You Got This”, I created and submitted a video about the four things I did when first diagnosed. Below is a recap of my chat.

Top 4 things I recommend when newly diagnosed with Multiple Sclerosis:
  1. Gather information. I spent a good part of my early years with MS doing a lot of research. I read books, articles and surfed the web for information. It was important and remains important that I understand how those pesky lesions along my spinal cord will impact my life.
  2. Start treatment, promptly. First things first, sign up for a Disease Modifying Therapy (DMT) regimen. I was urged by my neuro to start DMT right away and was on treatment within a month of diagnosis. Slowing down the progression of MS is my main priority.
  3. Seek support. This is so important. I sought and still seek the love and support of my loved ones. And, I really appreciate the support from my MS friends, on and off line. Thanks you guys, for making me feel less alone.
  4. Do something you love, everyday. There’s something to this. Trying to do something that gives a bit of pleasure really helps me, reminding me that there is more to life than an MS diagnosis and doing something I love takes me away from dwelling on MS stuff. Great advice from a great friend.
The best part of creating the video? Healthline donated $$$s to the National Multiple Sclerosis Society (NMSS) and they are doing this with each video posted on their site. Awesome!


If you’d like to make a video yourself, have a look here:
You've Got This via Healthline.

How about you? What’s on your list of advice to someone newly diagnosed with MS? What have you learned through the years? Stop by and leave a note.  I would love to hear from you.

Best always & hugs!


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