I'm conquering MS, 'wanna join me?

From time to time groundbreaking stuff happens on the planet that gets us really jazzed up and the launch of iConquerMS.org is no exception. As someone who lives with Multiple Sclerosis, this project is so very near and dear to my heart and I am super proud to be part of iConquerMS team and watch this go live.

So, you might be wondering, “Who/what exactly is iConquerMS.org?”

iConquer MS.org is a patient driven initiative that focuses on using ‘big data’ in the form of research suggestions and health data, to tackle all kinds of issues important to the MS community, including finding that cure.

Via an online portal, MSers will register, contribute information, and suggest ideas for research. Researchers will then review the idea, analyze the data, and gain important insights on varying aspects of Multiple Sclerosis. This MSer: Researcher collaboration may lead to better diagnostic procedures, treatment recommendations, and the ultimate goals of preventions and cures.

Yes! Throw confetti in the air!

After spending some time with the iConquerMS.org team, doing a bit of beta testing on the site, and registering myself, I am getting more and more excited about this project. Here’s why:

• iConquerMS.org is driven by folks living with Multiple Sclerosis. Yep, we’re steering the MS research ship. iConquerMS.org is an initiative by and for folks like us, living with MS, who truly understand the unique needs of MSers and want to contribute ideas and health data to fuel research. I love this because it’s patient driven, not a bunch of folks wearing goggles and white lab coats while holding test tubes in a back room laboratory, as my friend Stephanie Butler would say. 

• iConquerMS.org will really focus on the MS issues that matter most to us because research questions will be raised by the MS community. These questions may include: what causes the disease and what strategies might prevent it, cure it, or slow its progression; which treatments work best in which individuals; what factors affect the progression of the disease; and what insights can be found to enable new and more effective treatments to be developed. Yes! More confetti in the air!

• Things may actually move along faster. Advances in research may occur sooner as MSrs play a more active role by facilitating the use of our most personal asset – our own data, including lifestyle habits and health histories.

Please join us in this new way to fight MS. Let’s speed things up. Let’s use “big data” to truly make an impact. Let’s work closely with researchers to get closer to what matters most to us. Let’s work together on this important journey.

Simply go to https://iconquerms.org and click the “join now” button.

By the way, this amazing project is backed by all kinds of respected groups including: National MS Society (NMSS), and the Multiple Sclerosis Association of America (MSAA). And, Accelerated Cure Project for MS (ACP), Feinstein Kean Healthcare, and Arizona State University, and Patient Powered Research Network. Pretty hefty support.

Take care,

Christie

Walking around in style with my Top & Derby walking stick

Who says assistive devices have to be drab, ugly, and without color? Not me. And two award winning companies agree: meet Omhu and Top and Derby who infuse the mobility sector with color, design, and cool looking walking sticks. I jotted up a post a while ago about Omhu. They bring us totally rad canes, made from natural wood and high-strength bicycle-grade aluminum materials, in six gorgeous colors. Our friends over at Top and Derby make a great cane, too, and I think you’ll agree that this is a really nice departure from the usual cold and clinical ones.

Check it out.

Top and Derby feel like “…no one should be walking around with a gnarly looking cane…” and, thus, the entrepreneur, innovator, and designer collaboration of Matthew Kroeker, Gerrit de Vries, and Ben Grynol created their debut, the Chatfield cane. It’s both gorgeous and extremely functional.

The design and materials of Top and Derby’s cane are pretty amazing

To start with, the Chatfield has a distinct and intuitive handle, beautiful solid walnut shaft, and sneaker inspired tip (or, as they like to call it, shoe, since it’s a bit like a sneaker sole). Top and Derby do not skimp on quality either. The Chatfield handle is aluminum coated with silicon so your hand doesn’t slip while gripping and it totally absorbs vibrations while you walk. The solid walnut shaft is coated with a durable satin finish, and the shoe? It’s made of a durable thermoplastic rubber material. To top it off, it comes in three colors, all perfectly complimentary to the walnut and you’ll love their descriptions: Lights-out Black, Crybaby Blue, and On-the-vine Red.

"The Chatfield" arrives - thanks Top and Derby!
(c) cgermans photography 2014

I just bought a Chatfield cane and chose On-the-vine Red. It’s pretty sweet. I ventured out with it for the first time during a recent excursion around the coastal, walled city of Dubrovnik and the gorgeous island of Split, Croatia. What fun I had walking around as a wide-eyed tourist with a bit more support. Minus the lady who kicked the cane out from under me while we crowded outside at the airport terminal. Ha, ha! I’ve since forgiven her.

Yet, for me, using a cane is a vulnerable move

Buying the Chatfield was fun and easy (see aforementioned design shout outs and easy-to-use shopping site linked below) yet mustering up the courage to actually walk around with a cane is an entirely different story. It’s extremely personal. For me, using a cane releases some of the denial that’s been buried deep down for a while. The last time I used a cane was during a trip to Portland three years ago. I’ve since rested said cane against the wall and left it there. I haven’t wanted to admit that I need help. You know this denial I speak of, right? When you gasp, “oh crap, I cannot walk long distances without difficulty and really do realize that a cane will help and improve my life but I cannot muster up the courage to walk around town with a cane because what will people think and what if I see someone I know and then I’m exposed and then what?” the realization becomes all so real. I thought I was better than this.

The chances of seeing someone I knew while visiting Croatia, however, were pretty slim so I felt it was a good testing ground for me to try out the Chatfield. It was great! Super sturdy, very comfortable, and easy to use. With my Top and Derby cane in hand, I be-bopped along the stoned streets of Split, where Roman emperor Diocletian retired, walked the city walls of Dubrovnik while trying to catch glimpses of Game of Thrones filming (we saw Tommen!), and climbed seemingly thousands of steps as Dubrovnik is a very hilly town indeed. The Chatfield was my friend during these walks and gave me the support I needed.

Me and my Top and Derby "The Chatfield" while on holiday in Croatia
(c) cgermans photography 2014

Practice to progress

Using a cane is not a natural move for me, however, as I have the tendency to walk very quickly and without much focus. It took a bit of time getting used to but after walking more deliberately and slowing things down a bit, I grew to like the cane as it gave me the relief I needed. I felt empowered and so much happier because I was actually reserving energy by making it easier to walk. Except for those brief occasions when I accidentally kicked the cane in the same way as that lady at the airport. Gotta watch out for that. With less weight on my bad leg, I found I could walk more easily and more happily yet with cane in tow, I had to juggle other things like my camera bag, ice cream cones, and shopping bags and so I found it frustrating to only have one free hand. I did get somewhat used to it, though, and especially enjoyed having it with me as we approached very large tourist groups. It’s amazing how folks hop out of the way when they see someone walking towards them with an assistive device. Outta my way everyone!

So, with that, I wrap this up with a promise. I promise to practice to progress using a cane when walking longer distances. And, while we are certainly not happy to live with disability we may as well walk around with a bit of style. Agree?  What's been your experience with adapting to an assistive device? Any cool walking sticks out there that you like and would like to share with others? We'd love to hear from you. 

Cheers!

Christie

Check out the Top and Derby and Omhu products here:

Top & Derby: http://www.topandderby.com

Omhu: http://omhu.com

Tip: definitely follow their sizing charts, as you want to be sure you are properly fitted for your new cane.

My exams may be unimpressive but I feel pretty lucky

“Your exam is really quite unimpressive”, says my neurologist this past week during my annual exam. These are the words I love to hear. Having someone tell me I’m “unimpressive” otherwise may actually hurt my feeling (wait, what? I’m not special?) yet during my exam, I love hearing this. Unimpressive means no new lesions per my last MRI, a normal physical examination (for an MSer anyway) and validates that the big T flowing through my veins every month is working and doing its magic.

Yes! Fist pump in the air.

The physical examination* is pretty standard for MSers. I read tiny letters on a visual chart, blink a bunch of times, watch the wand my doc presents in front of me go forward and backward, touch my nose with my index finger and then touch his finger, fold my arms and try to resist his push and then, subsequently, try to push him away, I (try to) listen for his snapping fingers coming closer to my ears (this part I always fail since I’m hard-of-hearing, ha-ha!), he uses cool instruments to test sensation on my feet, hands, arms and legs (think tuning fork), he uses a soft hammer on my knee to test for reflexes, AND THEN HE SCRAPES THAT BLUNT OBJECT ALONG THE BOTTOMS OF MY FEET – YOWZA! I abhor this part yet my doc always stresses that it is very, very important*. Then, I do a little walk down the hallway and voila! We’re done. The verdict? A normal physical exam.

Sure wish I had sneakers on during
the "scraping of a blunt object along the
bottoms of my feet part" of the exam!

And so it goes this way for the last 2 ½ years - he hasn’t been impressed with me for a while. Another fist pump in the air!

During my visits, my doc also interviews me about my symptoms, we chat about life in general, and he gives me advice. It is during this part of my exam that we talk further about ensuring my quality of life is productive and happy. He is a huge advocate in empowerment and not letting MS get in the way of doing things we love.

Over the last couple of years, after walking longer distances, my right leg has been giving out and I have had more difficulty walking. It’s become annoying, as you might imagine, and we discussed my taking Ampyra ®. It is designed to improve walking for those living with MS. Anyone out there on this drug? I’m considering taking it so I can go back to enjoying my morning walks, which I love, love to do.

So, will Ampyra help me walk (or run)
more like these guys? If so, I'm in!

We also talk about the importance of exercise and I mention that I haven’t been in the saddle for a while as life got busy, stressful, and there seems no time to enjoy a solid bike ride. He reminds me that now, more than ever, is a great time to continue riding, as it will alleviate stress. Exercise? Good for my MS. I needed the reminder and intend to jump back in the saddle this weekend. Muchas Gracias Doc!

New this year is the discussion about the very important neuropsychological functioning tests I recently took to identify any memory/cognition issues. My experience with this deserves a separate post entirely so stay tuned. I’ll write about the test, the results, and why it is important for folks living with Multiple Sclerosis. Until then.

In the meanwhile, I hope all is well with everyone out there and feel free to leave comments about your experiences during your neurological exams. How are your visits with the doc? Have you been prescribed Ampyra ®? How does it work for you? Has anyone else out there taken the neuropsychological functioning tests? We’d love to hear from you.

Cheers!

Christie

P.S.  the main point of the MS physical exam is to always watch out for the following:

1. Irregular eye movement
2. Any changes in the way one talks
3.  Lack of coordination
4. Sensory disturbances or, lack thereof
5. Changes in reflexes
6. Any weakness in arms and legs, including spasticity 

P.P.S. the purpose of the scraping a blunt object along the bottoms of our feet is to test for abnormal response (or, the Babinski reflex), for damage to major nerve pathways. To read more about this and other details of the neuro examination, check out MultipleSclerosis.net here .

Clouds come floating in

“Clouds come floating into my life, no longer to carry rain or usher storm, but to add color to my sunset sky.” - Rabindranath Tagore

I just love this quote because it serves as a great reminder that, yes, the clouds will roll in, bringing in the darkness that MS sometimes carries, yet, somehow, through the storm, there is something good and positive to look for.

Dwelling on all of the bad stuff that may come with an MS diagnosis will really drive us crazy as we chant “why me, why me.” Some things are not meant to be understood and we should try to move on. I do this by focusing on doing things that I enjoy. Try as I might, it does work.

The stuff I love includes riding my bicycle really, really fast, taking pictures, reading, writing, planning a trip, wandering and exploring, gardening, laughing, watching movies and all kinds of other goodies. In doing this, I forget for a few moments, hours or days, that I am someone living with Multiple Sclerosis. Any darkness hovering over me lifts and I move on, enjoying the gorgeous colors of life. Corny, I know. But, it works.

You see, by focusing on doing the things I enjoy, the burning sensation in my legs drifts away a little bit, the numbing and pain seemingly weakens. The fatigue may stay awhile but when focused on doing things I enjoy, like watching an awesome movie, that feeling of “I hit a brick wall” diminishes. Do my MS symptoms go away? Nah. They simply fall to the background as I focus on doing stuff that deters me from constantly thinking about on the numbing and pain that I always feel.

Receiving an MS diagnosis can be devastating. No doubt. It brings hardships that can be very difficult to endure. I think lessening the load is important as we try to remember that there is so much great stuff in life that can really bring us a lot of joy.

How about you? What are some things you enjoy doing? To help brighten your days and help you dwell a little bit less on MS symptoms? Would love to hear from you.

Best,

Christie

What does an MSer need to know about financial stability? A lot

I was just made aware of an upcoming financial webinar series, "Financial Wellness Webinar Series", designed by the National Disability Institute, for those of us living with Multiple Sclerosis. This looks like a great resource with a focus on taxes, employment, social security and credit. No doubt we can all use financial advice from time to time and this is a great way to learn more about planning and maintaining financial stability. 

Did you know that a lot of MSers do not plan for our financial future? 

Based on a 2011 online survey of 3,000 MSers, 67% reported that their financial position declined after getting an MS diagnosis and 74% noted that they did not use financial planning programs/strategies to manage money. Plus, based on a very recent report by the National Disability Institute, 78% of people with disabilities had trouble making ends meet vs. 56% of people without disabilities.

All good reasons to register for the 4 free webinars that offer advice, tools and information to overcome financial challenges that are unique to us living with Multiple Sclerosis. Check out the schedule below and I'll see you there!

Register Today! www.realeconomicimpact.org/FinancialWellness 

Best always,

Christie

Sources:

online survey - the real economic impact.org

free webinar series! register here

national disability institute

Working It Out

Hello, hello! 

Below is another great video from our friends over at Shift.ms that talks about the challenges of MS in the workplace. They put together a great list of tips, too. Have a watch.

Take care!

Christie

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Good day all. I'm just playing around with this post as I just joined the Bloglovin community. Pay no mind unless you'd like to leave word and say 'hello, hello'. Hugs and hope y'all are feeling okay, as okay as it is possible. 

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Without you is something I cannot imagine

Hand Heart
(c) Claire Louise at www.puppyfat.com

Dear Friends,

Today is National Friendship Day and I want to celebrate you as I truly value our relationship. You are all important to me as we navigate, together, the journey of living with this intense neurological disease, Multiple Sclerosis. 

This blog started off as I place for me to express the emotions and feelings that came up for me during this “new normal”, as a sort of cathartic process. Turns out, I made a lot of new friends along the way, ones for whom I am truly grateful. 

So, thank you! Thank you for the love, support and hugs, as the months and years following my MS diagnosis have been challenging, scary, funny, frustrating, inspirational, adventurous, creative, interesting and rewarding. Without you is something I cannot imagine. 

Thanks for being there for me and I wish you all the best, always. 

Happy Friendship Day!

Hugs,

Christie

Top 5 Reasons Why MS SoftServe Rocks

Coming soon to a computer near you - MS SoftServe! In the event that you haven’t heard about the amazing work my buddy Amy Gurowitz is doing, here goes. Amy is running things over at http://www.mssoftserve.org and you’ll really be impressed. This will be the first website of its kind. Unlike any existing site with information, this site will be a completely customizable- individualized space for people to learn what they want, when they want about their unique version of Multiple Sclerosis.

Without further ado…

Here are the top 5 reasons why MS SoftServe rocks:

1. MS SoftServe will empower. After all, its main mission is to enable MSers to …”successfully cope with their disease through customized, online, active learning on a special website that meets their unique needs for learning.”
2. MS SoftServe will allow folks to share. The site will serve as a space for MSers to teach others about their version of MS without unnecessary information. This is key, right? Since all of us MSers live with a varying version of MS.
3. MS SoftServe is led by an amazing woman. Amy’s nature is to educate, soothe and speak to MSers with a compassionate voice, sprinkled with a bit of humor. She works tirelessly at MS SoftServe, to make life easier for those of us living with Multiple Sclerosis.
4. MS SoftServe benefits from an esteemed Board of Directors. The Board is a group of doctors, bloggers, writers, web designers, software developers, educators, filmmakers, social workers and radio show hosts... All of whom care about, care for or are people living with MS.  Did you know that actor Robbie Benson is on the Board? Pretty cool.
5. MS SoftServe will ultimately change how we learn about health on the web. We believe it will become a trusted resource for MSers. ‘Nuff said.

I’m on the Board of Directors for http://www.mssoftserve.org and you can imagine that we are all super excited to be a part of this landmark website. So, please join me in supporting MS SoftServe. Donate, Volunteer and/or Spread the word (here).

Oh, and do check out all of the videos – they’re very well done and you’ll meet everyone involved in this uber important project. 

Best always,

Christie

Made Strong

I recently met Dominick who is running things over at Made Strong, an apparel and accessories company with an empowering message. Not only are the shirts great, a portion of the proceeds goes towards our fight against Multiple Sclerosis. He jotted up the words below to describe Made Strong’s mission and inspiration. And, be sure to visit his shop (link below). I invited him to jot up a few words about Made Strong so be sure to have a read through his guest post below.  

Wearing my Made Strong bracelet during a ride - thanks!
(c) cgermans photography 2014

From Dominick, Made Strong, Inc.:

Though I don't have MS, the fight against it became a personal one. Here's why:

I was making designs for various causes and donating portions of the shirts sold to charity. I designed the Made Strong shirt for multiple sclerosis awareness. Soon after I started selling the shirt, I quickly became immersed in the MS community. I started hearing more and more stories of strong individuals who were battling MS. I became pretty close to some of my customers. I was incredibly grateful that this mantra could inspire someone in even the smallest way.

At the time, the name of the company was Nico Apparel but I changed it to Made Strong after receiving some really powerful messages from my customers.

I received a video from an individual with MS wearing a Made Strong sweatshirt. In the video she is walking with a cane for a few steps, she then drops the cane and continues to walk with no assistance. Another time, I got this email from a customer: "I choose to view life's challenges as opportunities. I let adversity strengthen my spirit. My body has gone through hell but my spirit is unbreakable. This is what Made Strong means to me."

I built madestrong.org to inspire individuals by selling cause focused apparel and accessories with inspiring messages. We spread awareness and we donate 10% of our profits to charity. So far we’ve donated just under $2.5K to the National MS Society and Race to Erase MS.

We are a customer obsessed little company. We do everything from customized apparel to helping people with medical bills. We’d love to have you be part of our little community…follow us on Facebook (Facebook.com/madestrongllc).

Stay strong.

Thanks Dominick - keep up the good fight! You rock. P.S. if you would like more info about Race to Erase MS, you can check them out (here) and (here). Race to Erase MS is doing fine work with their dedication to the treatment and eventual cure of Multiple Sclerosis. Thanks!

Best always,

Christie

Floating away...

THE LESION JOURNALS | 5/16/14

feelings

(c) cgermans photography 2014

Floating away...

When asked, "how are you feeling today", it can be difficult to describe MS symptoms to others. I think pictures can sometimes help. This photo captures perfectly how I felt after a stressful week of scorching temperatures and a state of emergency. My brain filled with immense pressure and left me with the feeling of floating away.

I snapped this photo at the car dealership, while waiting for service, and noticed this yellow balloon floating on its own, in a small patch of blue in the midst of smoke-filled skies. I thought to myself, "that's my brain today" yet seeing it in that one clear spot in the sky also gave me hope that I would feel better soon. This, too, shall pass.

Take care,

Christie

Citizen’s Arrest! Breaking down barriers, one parking spot at a time.

This year’s theme for World MS Day is “access” and it is a great opportunity for all of us to think about the key pillar of the theme: breaking down barriers and providing MSers with access to the same tools, services and facilities as those who do not live with Multiple Sclerosis. Seems easy enough, right?

You’d be surprised.

Sophie Paterson, over at worldmsday.org, jotted up some examples of access issues from around the world. Have a read below. MS is complicated enough and when compounded with accessibility issues, our lives can grow very frustrating and disheartening.

Examples of Access Issues

Courtesy of worldmsday.org (click here)

I recently came across an App that makes an attempt to improve accessibility with a dose of citizen’s vigilantism, one parking spot at a time. I read about it in Fast Company’s article, “Become A Vigilante With This App That Lets You Report Cars In Handicapped Spaces” by Ben Schiller, staff writer for Co.Exist (click here).

Photo courtesy of Parking Mobility app

Disabled parking is so very important and when we notice someone illegally parked in one of our spots, we fill up with feelings of frustration, anger, pain and fear. Mack Marsh, head of “Parking Mobility”, created an app that allows you photograph these offenders and report them to authorities (click here). Over 150,000 images have already been downloaded, in one county alone, and he hopes to spread this to more cities across America.

Hear the crowd roar!

After all, accessible parking does indeed give us access to the important services we all deserve: employment, medical treatment, entertainment and even shopping at Bed, Bath and Beyond.

Proost!

Christie

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 http://seeingms.com. 

Take care!

Christie

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,
Christie