Wednesday, December 10, 2014

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

Sunday, November 16, 2014

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

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

Saturday, November 1, 2014

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 .

Sunday, September 7, 2014

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

Wednesday, September 3, 2014

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:

Wednesday, August 27, 2014

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



Wednesday, August 13, 2014

Follow my blog with Bloglovin

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. 

Follow my blog with Bloglovin

You Might Also Like: