Last week, I had the opportunity to listen to an exciting and encouraging webinar on “Exercise and ALS: A Discussion of Research and Practical Recommendations.” Of course, I realize that exciting and encouraging don’t always show up in the same sentence with exercise and…
A musical instrument that can be played only with brain activity may empower and rehabilitate patients with ALS and other motor diseases. Invoking brain scans known as electroencephalograms, University of Washington researchers have dubbed the musical device they created an Encephalophone. The article they wrote about it, titled “A Novel Musical…
The Orlando-area medical marijuana company Green Relief is reminding Florida residents that the state no longer requires a 90-day waiting period before a patient with a serious disease like ALS can receive treatment. Florida lifted the 90-day requirement June 24 with rules that implemented changes in the state’s medical marijuana law…
In this video from ITV’s This Morning, television presenter Charlotte Hawkins talks about her father’s journey with motor neuron disease (MND), which is also known as amyotrophic lateral sclerosis (ALS). She highlights how lonely people can feel living with the disease, particularly when they lose the…
Like so many who live with ALS, I have weak muscles in my lower legs that limit my mobility. To help me roam through the house, I rely on a walker with wheels. I also use it for covering short distances when my husband and I are out running errands.
Speech-language pathologists (SLPs) or speech-language therapists (SLTs) do much more than help people with speech problems such as stuttering or mispronouncing words. For children and adults with neuromuscular disorders like spinal muscular atrophy (SMA), muscular dystrophy (MD) and amyotrophic lateral…
Amyotrophic lateral sclerosis (ALS) is a progressive muscle-wasting condition. Although it can affect each patient in different ways, as the condition worsens many may find it increasingly difficult to eat and drink. Common issues can include difficulties chewing and swallowing as the muscles of the throat and mouth weaken. The…
H.P. Acthar Gel (repository corticotropin injection) is an investigational treatment for amyotrophic lateral sclerosis (ALS) being developed by Mallinckrodt Pharmaceuticals. It is administered as an injection. The drug is currently approved to treat various other conditions, including multiple sclerosis (MS). How H.P. Acthar Gel works ALS is a…
If you are active on social media and have a chronic illness, you’ve probably come across the term “spoonie.” The word comes from a woman’s explanation of how she has to manage her energy levels each day. As she was in a cafe at the time, she grabbed a bunch of spoons to…
While living with a chronic illness can be challenging, there are ways that you can make life easier and live a happy and fulfilling life. Establishing good habits and routines takes time, but as Gunnar Esiason points out in his blog Own It, there are some “common sense approaches” to…
