When I learned I had ALS, my whole world changed, because on that day, I officially became an ALS patient. My husband’s world changed as well because, just as suddenly, he became my caregiver. I appreciate his taking on this challenging responsibility more than he’ll ever know.
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Amyotrophic lateral sclerosis (ALS) is a severe neurodegenerative disease characterized by the progressive loss of motor neurons, nerve cells that control the voluntary muscles. This leads to symptoms that include overall muscle weakness, causing difficulties with moving, breathing, eating, and speaking. There is no…
Amyotrophic lateral sclerosis (ALS) is a condition that is challenging to diagnose because it shares many common symptoms with other diseases. Blood tests are used to look for evidence of diseases, the symptoms of which are similar to those of ALS. They can help, therefore, to…
Amyotrophic lateral sclerosis (ALS) is a progressive neurological disorder that leads to the loss of nerve cells. The disease is caused by genetic mutations, but also may be caused by environmental factors such as smoking or alcohol use. Diagnosing ALS can be difficult and multiple tests usually…
Amyotrophic lateral sclerosis (ALS) is a progressive neurological disease that affects motor neurons, which are the nerve cells that control movement. Evidence of lower motor neuron degeneration is one of the El Escorial criteria for ALS diagnosis. Lower motor neurons are those that go from the spinal cord…
Amyotrophic lateral sclerosis (ALS), a progressive neurological disorder, can be challenging to diagnose because its obvious symptoms are common to other neurological conditions. A thyroid function test can help in a search for evidence of other conditions with shared symptoms and to rule out ALS, which is not associated with…
Living in the present has always been hard for me. I had such grand dreams for my future. It is hard to come to terms with the fact that I won’t go on a camel trek in the Sahara and spend the night under the most beautiful…
Columns
5 Things That Keep Me Motivated
Living with ALS presents many challenges, and staying mentally motivated is right at the top of the list. Being proactive to prevent our emotions from spiraling downward is easier than picking ourselves up after we’ve hit rock bottom. So, I want to share the five things I…
In amyotrophic lateral sclerosis (ALS), patients experience progressive muscle weakness and a decline in motor control due to the death of nerve cells in the central nervous system that control the voluntary muscles. This can result in the patient experiencing a range of symptoms, including difficulty walking, muscle…
News
#NORDSummit – Major Issues on Table for Rare Disease Patients in US as Midterm Elections Approach
With the U.S. midterm elections now less than two weeks away, patient advocacy groups are solidly focused on a range of hot-button issues, from the Orphan Drug Tax Credit and affordable health insurance to future funding for rare disease research. Yet “whether Democrats take over the House or Senate,…