When a family first receives a muscular dystrophy diagnosis, the news can be overwhelming. Families suddenly find themselves faced with the need to learn about the disease, how to manage their loved one’s care, how to find the right resources, and how to plan for what lies ahead. Even those who have traveled this road . . .
The more I do with MDA, the more I learn about all that MDA is doing behind the scenes for our families. The 2016 Clinical Conference is a great example. The conference convenes world-renowned medical professionals to share best practice and discuss research advances — all for the benefit of MDA families. To attend as . . .
Editor’s note: This blog is adapted from remarks Joe delivered today at the opening session of the 2016 MDA Clinical Conference MDA has been a part of my family’s life ever since I was diagnosed with SMA Type 2 at the MDA Care Center at Children’s Hospital Colorado, and being a part of the MDA family has . . .
During the last few years, we have witnessed unprecedented progress fueled by an astounding volume of research and improvements in care for kids and adults with muscular dystrophy, ALS and related muscle-debilitating diseases that take away strength and mobility. I have been working in the neuromuscular community for more than 15 years, and I am energized . . .
It’s Christmas baking day today. Actually, the preparations started a few days ago, with a shopping trip, of course. Then, last night, Katherine helped me make a batch of Shortbread Cookies using my grandmother’s recipe. We also made a batch of pastry dough for the mince tarts and butter tarts planned for today. So now . . .
Dear Grandpa, I have been thinking about you a lot lately. I miss you. You died a few months before my 20th birthday. Two-thirds of my life here on earth has been without you. So many of the people I love never knew you. Actually, though, I only knew the last 20 years of your . . .
My ALS progression may be slow and the changes I notice may be quite small at this time, but they’re there. Subtle or not, I am aware of the changes. A small change that makes me sad is losing what remained of my speech. I keep trying. But it’s really gone. I miss it most . . .
The other day a friend complimented me on my positive attitude and asked how I managed to “find the funny” in everyday things. My reply? “I don’t go looking for it — it finds me! To help you understand, I’ll share a couple of stories from some of my past medical visits to the ALS Clinic. . . .