Multiple Sclerosis

Friends in Low Places

I’ve loved hearing about Robin’s (Julie's mother) attitude towards combating ALS.  Dealing with a neurological challenge as the diagnosed, or as a supporter, is never a welcomed challenge, but it can bring small gifts such as hope and a desire to push ourselves just a little bit harder.

Outdoor Mindset members are a tough bunch. Our group includes people with Parkinson’s who are learning to run, people with MS who will crutch for miles driven by their passion for the outdoors, people who are adjusting their love of skiing or biking by learning to use equipment that allows them to keep moving, and more. We are a group that does our best to always keep going, and encourages others to do the same. 

I can see that determination in Julie’s mom. In this next entry, as Robin rounds the kitchen island with a hero’s determination, she keeps going as best she can, in the best way she knows how- with friends, family, and laughter surrounding her.  

I can also see that determination in Julie. As she runs and writes, she opens up and develops her understanding of how her entire journey with her mother is shaping her into who she is today.

Week of August 27: 
The Baltic Sea
I'm out there running on the rim of the Baltic Sea. It's possibly the most motivating place to run. It's pretty dark and cold here in the winter so when summer comes and it's finally warm it's so freeing to be outside. It's the perfect time and place to start this running adventure of mine.

I spoke to Jan, my Outdoor Mindset running buddy. It's so nice to have support from her about what to expect on my long runs, how my body will feel and what to do about it. Today was a long one so not only did I pull from her training tips but also from her strength as a woman who has also dealt with ALS with her Mom. She's an inspiration and it just makes me want to run longer to do all I can to help.

As I run, I know my Mom is there looking down on me. That may sound weird but I do go into that sort of deep thought as to why I'm doing this while on mile six when my legs aren't loving me. She'd be the loudest screamer for me on the running path. She was my biggest fan when I was a swimmer growing up. I swam all the time; it was my passion as a kid, my sport. I wasn't the best at it but I tried to be. I still have video of my old swimming days and her in the background screaming. Kinda funny. You would think I was about to win the Olympics at how loud she could get those pipes going. But to her it was her kid about to beat another kid in a race, period. It mattered to her.

Yep - Bubble Butt!
My mom was using a walker for a long time and eventually graduated to a motorized wheel chair. Every day she would try and walk with the hope of not needing either eventually. We had this island in the middle of the kitchen and she would do “laps” around it: trying not to hold on. One day one of her friends, (we called her friends “sisters” or “circle of friends”) came over with a little bubble machine that was this funny contraption of a guy that pulled his pants down and shot bubbles out of his butt. Immature but it made us all laugh.  So, she would round the table and get back to the end where bubble butt was and laugh again at the success of her rounding the table, at bubble butt. This is a new definition of “friends in low places” thank you sisters!

So this was her exercise. Her biggest obstacle in life. Her hope. If she rounded that table without holding on somehow she thought (and therefore we all thought) perhaps this is just a funny phase in life and will pass. Perhaps it's just an ailment for this month and each day she'll round that table again and again until she's back to normal. Perhaps.

She tried each day. Each day my Dad would be grounded, positive and take it moment by moment and hope. Each day her friends showed up with a new trick up their sleeve and we laughed.  Each day they showed up with hope, ready to make her laugh, ready to listen, ready to hug away her tears and fear.

So I continue to run.  It makes me realize that I'm not sure I could live sanely without some sort of exercise in my life. It keeps me whole and centered. And wanting to help others fighting a neurological disease, get outside and benefit from that feeling.  And I'm feeling good. I think it's due to my overpriced fancy new running shoes. But they are cool. Stay tuned.....

Thanks for reading.
Julie

Can Do? YES YES YES!

We are so excited to announce a new partnership with Can Do Multiple Sclerosis, an organization we have greatly admired from our creation and along every step of the way. Can Do MS

is a leading provider of innovative lifestyle empowerment programs for people with MS and their support partners. Leveraging the powerful legacy and principles of former Olympian and organizational founder Jimmie Heuga, Can Do MS has helped thousands of people living with MS reclaim a sense of dignity, control and freedom by empowering them with the knowledge, skills, tools and confidence to transform challenges into possibilities.

What inspires us most about Can Do MS, and probably what connects us most deeply, as well, is their positive outlook on living with a neurological challenge. They say that by focusing on what you can do, their programs can provide a whole new way of thinking about and living with MS. And now, as a partner of Outdoor Mindset, we can focus on ways to do this together to serve all of our members!

We've made some great strides on being able to serve our community of MS Members, and our partnership with Can Do MS is going to provide us even more opportunities and insights on where we should go next. 

Here's a great story from one of our Outdoor Mindset Members and Guides living with MS, with a serious 'can do' attitude, who recently enjoyed a great hike with through OM Meet-Up Groups:

Sandy joined Outdoor Mindset looking for some hiking partners. Sandy is a massive and serious hiker and after being diagnosed with Multiple Sclerosis, continued her hiking passion using forearm crutches (along with doing some other awesome adaptive sports like monoskiing and handcycling!) She says she's still a pretty serious hiker, although she's had to adjust her expectations a bit with a slower pace. She's had trouble finding hiking partners because her pace is a little slower than the average hiker, however she can seriously hike all day - like 11 miles!

Sandy attended a recent Outdoor Mindset Meet-up Group doing the Twin Lakes Hike near Boulder, and here's what she had to say after:

"It was so wonderful for me to have such great company for a hike in one of my favorite places in the world. And I think we were so well matched as far as hiking ability! And how wonderful to have hiking companions that were not freaked out by my crutches and I wasn't the weird, disabled one trying to keep up with the able-bodied folks. Instead, I just was one of the group and it was so very lovely. Thank you so much for setting this up!"

And Sandy wasn't the only one feeling inspired that day. Another hiker from the Meet-Up group wrote in:

"It was good to spend time with others who have similar conditions.  And what an inspiration Sandy is -  wow."

I'd say that was a pretty exceptional day for all! We are SO thrilled to be able to help nurture this experience between our Members and can't wait to spread the love with Can Do MS, as well!

Don't forget to check out our Meet-Up Groups in:

Boulder, CO 

Hanover, NH

Cincinnati, OH 

...and more to come!

Jill