Being part of the MS Board of Directors over the past year has really opened up my eyes to realizing how MS affects many of those around us.
Some people believe that being diagnosed with MS “automatically” means a debilitating lifestyle. However, what I have found is much to the contrary.
The MS community (including those living with MS, their friends, and support networks) is incredibly resilient, motivated, and passionate. I have heard inspiring stories from many of these individuals ranging from the struggles of every day life to regaining the ability to walk.
So here’s to all of you in the MS community:
“Some days are tough while others are great, but know that they all contribute toward the success of your journey.”
The MS Society’s Atlantic Division hosted a webinar on Bladder Dysfunction with urologist, Dr. Ashley Cox. It speaks of important issues such as why it is important to identify and treat urinary problems associated with MS, as well as explain different treatment options. The 67 minute session was recorded using Adobe Connect and can be accessed at the following link. Please note that your computer must be able to support Adobe Connect/Flash Player.
Wendy St. Marie is determined to create more freedom and independence for people with different accessibility needs. Wendy is currently one of two leaders of the Kitsilano Self-Help group for the MS Society. She also serves as the Chair of the Board for HandyDART and is part of the Access Transit Board Committee. Wendy actively seeks opportunities to teach others about disability awareness by creating informative workshops for graduating Drivers of the Coast Mountain Bus Company, and hosting the “Scooter Rodeos” for people with mobility aides with the Collingwood Policing Department.
Greg Turnbull has been at the heart of Maple Ridge’s Hope and Balance Support Group since its inception in January 2012. “The group blossomed through serendipity,” says Greg, “one thing led to another and all these volunteers fell in our group’s lap.” Greg has seen the group grow from monthly meetings to include different health therapies and fundraising initiatives. Just last year, Hope and Balance raised an outstanding $5,000 for the MS Walk! Greg and his team of volunteers and community partners strive to provide a safe and inviting atmosphere for people to feel comfortable sharing the challenges that come with living with MS. For more information on the Hope and Balance Support Group please contact the Lower Mainland Chapter at 604-689-3144, or Hope & Balance at 604-895-8202.
Check out this link on gentle Yoga classes ideal for anyone with exercise limitations such as Multiple Sclerosis: TherapeuticYoga West Vancouver
As a Peer Support Volunteer, Sherri Allen offers her listening skills, positive outlook, and empathy to newly diagnosed peers. Sherri has had innumerable matches through the Peer Support Program and has even established great friendships with the people she’s encountered. One interesting bit about Sherri is that she and her sister starred in an episode of Crash Test Mommy! The entertaining episode was profiled in the MS Society’s BC and Yukon newsletter “MS Hope MS Heroes.”
The 37th Annual Vancouver Folk Music Festival is happening July 18-20th at the beautiful Jericho Beach Park. Over 60 acts will perform throughout the 3 day festival, including the spotlight acts Joan Baez, Frank Yamma, and Ozomatli. In addition, there will be an amazing Artisan Market, Folk Bazaar, and delicious food from around the world.
When: July 18-20th
Address: Jericho Beach Park 3941 Point Grey Rd, Vancouver, BC
Time: Friday 6-11pm, Saturday 10am-11pm, Sunday 10am -11pm
Cost: Weekend pass -$140, Friday pass -$45, Saturday or Sunday pass- $75 (early bird prices must be ordered by June 14, 2014). Tickets can be purchased online or at 100-2425 Quebec Street. Go to http://thefestival.bc.ca/ for more details.
Discounted tickets are available for people with disabilities. To order please contact Linda McGowan at firstname.lastname@example.org. Deadline is June 1, 2014.
I’ve had MS since I was 20 – well over half of my life. It would be easy to concentrate on what is lost – I try to, instead, focus on what’s gained.
The best parts are what my best friend and caregiver and I do:
Besides taking life a step at a time, we try to think outside of the box. She arranged for me to take the zipline (photos attached) at the 2010 Olympics and I for her to go paragliding last year. It sounds like she enjoyed it; this video records her fun as the pilot put the glider in a loop!
Having MS is very unpredictable. One day you might have energy the next day you may not.
When trying to describe what MS is like to people who know nothing about the disease, I ask them to relate back to being young and on a seesaw. When you first get on, your butt is on the ground and you have to work really hard to balance the seesaw with your friend. Then you have to continually be aware to keep finding that balance point, if you don’t, you will be back on the ground.
Having an MS relapse is like the seesaw, it’s hard work recovering. Some of us are fortunate to have relapsing remitting MS and we get to balance the seesaw, but you have to always be concerned with your energy levels and prioritize what is important to keep your MS balanced. Others have progressive MS and they are unable balance their seesaw, constantly fighting the uphill battle and their MS continues to progress.
I have found most people, even without a medical explanation, can start to relate to MS, when they understand how balancing MS is, like a seesaw. You are always working to keep your life balanced. Unfortunately relapses, do come my way, but I hope I continue to be able to find the balance point once again.
What MS Means to Me ….
“When I was first diagnosed with MS I felt overwhelmed and confused. I felt like I was a glass that was nearly empty”
“Then, after I joined a support group and built my support network, I felt like me glass had been filled up!”