It blows my mind that in 2017 we still know very little about ALS or the brain for that matter. When I was first diagnosed, Dr. Phillip said I had 3 things to immediately consider: Did I want a second opinion? Did I want to go on Riluzole? (see Medications) Did I want to participate […]
May is ALS Awareness Month
May 10 – Technology
MDA.Org Today’s technology allows for mobility for almost everyone, no matter how few muscles remain functional. In the early stages, a cane or a supportive brace (“orthosis”) may be all that’s needed. An ankle-foot orthosis, or AFO, can keep the foot from dropping with each step and causing tripping while walking. Later, additional devices may … Continue reading May 10 – Technology
May 9 – Life Expectancy
ALS TDI: Most people with ALS live 2-5 years after their first signs of disease. About 10% of people with ALS survive at least 10 years. This variable rate of disease progression makes prognosis difficult to predict and therapies challenging to develop. I received my diagnosis in January 2015, with these statistics I won't be … Continue reading May 9 – Life Expectancy
May 8 – Why
ALSA.Org It costs $1-2 billion and can take up to 15 years to bring an effective ALS treatment to market. Through a strategic collaboration of research, patient care, and public policy initiatives, The ALS Association is working to accelerate development of new treatments and ensure access to them. People with ALS are at the core … Continue reading May 8 – Why
May 7 – When
Every 90 minutes someone is diagnosed with ALS, we need you NOW! Together, we can make a difference! 5 minutes. That's all it will take to learn about the issues affecting the ALS community, and take action in support of the brave individuals living with this disease. The actions of Congress and our elected officials have … Continue reading May 7 – When
May 6 – Who
MDA.Org ALS usually strikes in late middle age (the average age of onset in the United States and Europe is between 56 and 63) or later, although ALS also affects younger adults and even children, as well as very elderly people. Some genetic forms of ALS have their onset in youth. Men are somewhat more … Continue reading May 6 – Who
May 5 – Where
Muscle-controlling nerve cells, or motor neurons, are divided into two types: upper and lower. The upper motor neurons are located on the surface of the brain and exert control over the lower motor neurons, which are in the brainstem and the spinal cord. The lower motor neurons are directly attached to muscles through “wires” called … Continue reading May 5 – Where
May 4 – Wear Your SunnyStrong Shirts on Friday’s in May
Every Friday in May Team Sunnystrong asks that you wear your Sunnystrong shirts and post a picture! This is an easy way to raise awareness for ALS and share Sunnystrong with the world! Don't have a Sunnystrong shirt? Order yours today: https://sunnystrong.ecwid.com/ Orders will be taken through 9/1 and shirts will be available: For Pick … Continue reading May 4 – Wear Your SunnyStrong Shirts on Friday’s in May
May 3 – What
MDA.Org: What is ALS (amyotrophic lateral sclerosis)? ALS is primarily a disease of the parts of the nervous system that control voluntary muscle movement. The word “amyotrophic” comes from Greek roots that mean “without nourishment to muscles” and refers to the loss of signals nerve cells normally send to muscle cells. “Lateral” means “to the … Continue reading May 3 – What
May 2 – How You Can Help
"ALS is not an incurable disease. It is an underfunded one." - ALS TDI Now I realize not everyone has impactful amounts of money just lying around (call me if this is you), so for us regular (poor) folks this is how you can help: Melanie Tannenbaum wrote in Scientific American, “Based on everything that … Continue reading May 2 – How You Can Help
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