Yup, it’s that time of year again — lag time! We’re in that weird space in time that’s just after all the holiday hoopla and before the “next big thing” comes along. It’s a time to catch up, reflect, and take a well-earned breather. And for those of…
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“Reports of my demise have been greatly exaggerated.” —Mark Twain, in a letter to The New York Sun I spent the better part of November under the weather. I am always taken aback by the “uncommon” havoc the “common” cold can wreak on someone with the deficit baseline…
Columns
The Power of One Resolution
The new year is just beginning, and my email inbox is already overflowing with suggestions about the importance of setting goals and resolutions. But for many living with ALS, traditional goals and resolutions for self-improvement can feel empty and useless. In truth, most of us are just…
Columns
Trying the Self-care Power Hour
When I look back at 2018, I feel pride. I fought my ALS hard. I forced myself to finish all my meals, even when I had zero appetite, to minimize weight loss. I made it to all my appointments, though I had to reschedule multiple times. I asked…
Cash-strapped governments across the 28-member European Union are struggling to control runaway healthcare expenditures — at exactly the same time as the promise of new but expensive therapies to treat rare diseases has never been greater. That’s the paradox faced by pharmaceutical companies as well as patient advocacy groups in…
A new research project that will investigate the seemingly unrelated mechanisms between neurodegenerative diseases and infections has been awarded $2.5 million from the Chan Zuckerberg Initiative (CZI). The funding was awarded to Ivan Marazzi, PhD, assistant professor of microbiology at the Icahn School of Medicine at Mount Sinai in New…
It’s hard to live in the present when the past feels as close as my shadow. I can’t stop thinking about the things I have lost. I’m nearly immobile, so the things I miss most are physical. I miss my feet touching the ground. I miss the…
Amyotrophic lateral sclerosis (ALS) is a progressive neurological condition that affects motor neurons. Motor neurons are nerve cells that control the movement of voluntary muscles, including respiratory muscles. Respiratory failure is the most common cause of death in ALS patients. Lung function tests are used to assess the risk…
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease, and inheritance is thought to play an essential role in its less common form, called familial ALS (FALS). A genetic test is usually only performed on individuals with a known family history of ALS. Familial versus sporadic ALS The…
Amyotrophic lateral sclerosis (ALS) is a disease characterized by the progressive loss of the nerve cells that control muscle movement. There is currently no cure for the disease, but there are a number of treatments that can delay the progression of symptoms. Some…