To kick off MS Awareness Month, MSAA released the new video Changing Lives Monday to Sunday to show the impact the organization has on the MS community, and to showcase our commitment to our mission of Improving Lives Today.
Now, meet Cathy, Sara, and Simone – the three MSAA clients featured in the videos:
Hear from Cathy whose MS was causing heat sensitivity that drained her energy and kept her indoors in the air conditioning. Cathy decided to reach out to MSAA about our Cooling Program and received a cooling vest that allows her to get outside and feel re-energized.
Sara talks about how her diagnosis and subsequent disease progression left her feeling overwhelmed and uncertain. In order to get the MRI to prove that her disease was progressing and her symptoms were a result of her MS, Sara applied for MSAA’s MRI Access Fund which helped to pay for her necessary test.
After her diagnosis in 2015, Simone wanted to find a way to take care of her whole self, but she also wanted to help others with the same diagnosis. In her search for volunteer opportunities, Simone came across Swim for MS and dove right in, not only raising money for the MS community, but also finding support for herself and the freedom swimming gives her.
To learn more about any of these programs, please visit mymsaa.org
Summer is a double edged sword for many with MS. Making the monster happy is a battle. While winning the war may not come until a cure, small victories can be celebrated.
Heat is a battle most of us fight. Staying cool is essential. Cooling vests with the ice packs work well. I don’t enjoy looking like someone on safari suffering from some weird allergic reaction, but it is better than the alternative. Lumpy ice packs stuffed into a vest are not a fashion statement anyone wants to make.
Stick to a routine, as much as possible. I know having kids home for the summer is like herding drunken cats. As a mother of three boys and being a frequent wheelchair user, I am very familiar with the struggle. Pick an activity indoors, like bowling. It is cheap and you can bask in the A/C with caffeine and cheese fries. You can still participate from a comfy chair.
Fatigue it my number one enemy. It cuts me down with one swoop and then stabs me to be sure I stay down. Coffee and soda are the poison of choice for many. But, as caffeine is a diuretic and liquids have to exit the premises, these are not always good options for those of us dealing with tight time limits on the bladder. The caffeine crash is another unsavory blow.
I have found timing is everything. Time medication and naps to your daily needs. My secret weapon is caffeine gum. Chewing caulk-like gum is gross, but it gives me a wee kick without frequent trips to the potty. Using the potty, for me, has its own gymnastic routine. It also means using precious energy. I feel like a gnat in winter already. I cannot afford to use energy on potty breaks.
Take summer slow. Summer days drift away so fast, but enjoy it too. MSers are great at balancing. Enjoy what you can, when you can and however you can. Sitting in a lumpy cooling vest chewing caffeine gum is far better than missing out.
Several members of the MSAA team traveled down to Dallas, Texas last week for the 2014 meeting of the Consortium of MS Centers (CMSC). The meeting had approximately 2,000 registered participants (the largest CMSC ever) ranging from doctors, nurses and researchers, to nonprofit organizations like MSAA.
MSAA set up our booth and reached out to attendees to try and ensure that providers are aware of our services and can refer to them as needed.
Some of the partners MSAA works with were also in attendance, including the vendors who work with MSAA on our Cooling program:
The annual CMSC meeting is one of the best opportunities for education, sharing, and collaboration for professionals who serve the MS community. MSAA staff attended a number of helpful classes, lectures, and interactive sessions on everything from research and study updates related to causes and treatments to efforts to improve quality of life and comprehensive MS care.
Stay tuned to MSAA for more information and knowledge learned at the 2014 CMSC.