One of the first questions I always get when people find out I have ALS is: how did I get here? Well, it's not an exciting story, sorry. In April 2013 I was playing intramural softball with a staff team at WC and while warming up with a friend my glove kept falling off. Since … Continue reading May 21 – Diagnosis
May is ALS Awareness Month
May 20 – Home Remedies
I have always been a hot body, putting off unnecessary amounts of heat while others around me are freezing. Since starting Riluzole, I am internal combustion hot, always. It is miserable, especially when I'm in places where I can't control the thermostat. MDA put out an article titled "Tips for Coping with Summer's Heat" and … Continue reading May 20 – Home Remedies
May 19 – Family
I've told you before and I'll tell you again: Team SunnyStrong is absolutely amazing. Don't believe me? Click any of the links below to join us at an event to see for yourself. ALSA spotlights the faces of ALS, and their stories of hope and fear as they navigate through this disease. Read more about … Continue reading May 19 – Family
May 18 – Baloo
Kenneth and I have been blessed with the sweetest baby, Baloo. The founders of IDEA Service Dogs believe that many physically challenged people can achieve improved quality of life through the addition of a service dog, which they raise and train themselves through a comprehensive program designed specifically for their needs. You can read more here … Continue reading May 18 – Baloo
May 17 – MDA
Did you know that 12,000 individuals with ALS have access to MDA ALS Care Centers? And that I'm one of them? See more about clinic here, here, and here. Since MDA was founded in 1950, life expectancy and quality of life has vastly improved for individuals with neuromuscular diseases. Children and adults are living longer … Continue reading May 17 – MDA
May 16 – ALSA
I challenge you to go to their site: http://www.alsa.org/about-als/ and post something that you didn't already know about ALS - it can be anything! By educating ourselves, and those around us, we will become a stronger, more unified community. I can't beat this disease by myself, so I need your help to become a better advocate for … Continue reading May 16 – ALSA
May 15 – Did ya know, that?
"The newest and most popular comfort height is typically around 16 1/8” floor to rim. The standard ADA (Americans with Disabilities Act) height toilets must have, a 17”-19” floor to bowl rim height, including the seat." - Mansfield Plumbing and Kenneth and I just got two brand spank'n new ones thanks to Mah and Mitch! … Continue reading May 15 – Did ya know, that?
May 14 – Breakthroughs
RADICAVA has been demonstrated to slow decline of physical function by 33 percent MDA 5/5/17 "The FDA has granted approval of edaravone (brand name Radicava) for the treatment of ALS. It’s the first drug to be granted FDA approval to treat ALS in the United States in more than 20 years. Radicava is thought to … Continue reading May 14 – Breakthroughs
May 13 – Medications
I think we can all agree that ALS sucks. One of the cruelest jokes of this ridiculous disease is that as I progressively lose control of my fine motor skills, and hands in general, the more medications I take on a daily basis. I’ll be the first to admit that I’m not the best at […]
May 12 – Clinic
ALS sucks, but clinic days at Texas Neurology are wonderful! This trip brought 3 first timers: my Thindy, my Wendy, and my Jimbobble. MDA clinic takes a multidisciplinary approach to monitoring the progression of my ALS which is not only efficient but really, really fun. My team is amazing and makes this ridiculous disease somewhat […]
SunnyStrong 