Wednesday, September 12, 2012

Understanding

When I read this next blog from Julie, I was reminded of how important it is to have a varied support system for the person who is going through the neurological challenge, as well as for those who are providing support.  By varied I mean a wide circle that can help tackle the complexity of feelings, provide entertainment and distraction and even encourage strength and growth through the changes that a neurological disorder can bring.

One of the things that I admire most about Julie’s family is that they kept the door open and invited people in as they faced one of the toughest medical diagnoses there is to face. But, as in most life challenges, even with an enviably wide circle of friends, most of us will at times feel alone at some point.

It was years after her mother passed away that Julie was looking for additional support.  Living overseas, with all of the busyness and joys of a young family, she realized that she needed a connection that would help her work through the complexities of grief.  Through Outdoor Mindset, she has found a friend who is cheering her on as she runs and raises awareness and funding for ALS research.

Even if you already have a strong support system (which statistically speaking, most of us do not) it’s important to round it out with whatever other channels you need - professional or non. And of course in our opinion, the best environment for that support is outdoors and while being active!

Week of September 3:
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Have you or someone you loved ever been affected by a neurological disorder? If you're out there, keep reading; Outdoor Mindset is here for you.  They are a group of wonderful people that understand, that care about what you've been through and can even make you smile.

I remember my Mom would want to get out of the house every day and that wasn't so easy but we had the support to do it.  She has tons of friends that came over every day. We kept our doors unlocked and people would just sort of show up. It kept our family sane too to have so many people help, want to help, need to help and we allowed it. We were (are) a very open family. We let people in. It worked, they wanted to come over and see us, we wanted them there.

We would get her in her wheel chair, down the elevator, out the door and into a new van set up for wheelchairs and we would take her riding. She would get out and we would all figure out a way to laugh, to eat ice cream, to have adventures, to have an Outdoor Mindset, to breath again. I remember driving after we had ice cream and there was a load full of her friends (we called them all “sisters”) that were in the back of the van all eating ice cream and she was thirsty. But she couldn't hold a cup and straw on her own anymore so this thirsty thing was not as easy as it seemed. I couldn't just hand her some water. We pulled over and her friends in the back, all goofy, funny ladies were laughing about something, telling stories, just having a grand ol time. We stopped, I gave her a drink and held it in her mouth for her while she drank and these girls were still talking away and of course making her laugh. She was now snorting the drink, whatever it was, out of her mouth, nose, ears if it could go that way. Laughing, all of us laughing. It was great. I guess what I'm trying to tell you is that perhaps if you're reading and you need support, we can help - just like my mom's friends helped her laugh during her struggling times.

My friend Jan and I are two people connected by this wonderful group and were two caregivers for loved ones with ALS. We nurtured and loved our Mom's through it. She's not only someone I've shared my story with but she is also a runner and helping me now power through my first half marathon. She is getting me mentally through some of the tough parts of this running thing that I'm brand new at. She is my supporter, an inspiration with her own ALS experiences in her family and a friend from across the world.

Personally, for several years I was reluctant to talk about it - I was exhausted from it. Now I'm ready to help those dealing with it or those who are caregivers and perhaps don't want to talk about it but would like to know that a community exists. We, OM, can provide you with support. When I was in the thick of care giving, the last thing I would've wanted to do would be to read anything about ALS. I was living it, breathing it and wanted it to end. Sort of a league of its own and well, if you're reading, we, I understand. OM understands. We can just be there for you if you are ready for us.

Thanks for reading.
Julie

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