Dear Lewis:

You are welcome and I am looking forward to reading from you again. I read more about the disease, ALS, being curious about it, and I thought that you are likely to share my interest, I thought it won’t hurt if I share the following with you. You are welcome to not read the following, of course.

wikipedia: 90% of ALS is sporadic, which means that there are no family members with the disease. The defining feature of ALS is neuron cells dying, both in the brain and in the spinal cord. This death of neurons start in a single location and spread from there, which means more and more neurons die over time, and as a result, more and more muscles no longer operate.

There are other diseases that are caused by neural deaths aka neurodegeneration, all are incurable and involve a progressive degeneration: Parkinson’s disease, Alzheimer disease, fatal familial insomnia, and Huntington’s disease. These diseases are similar on a sub-cellular level, meaning the neurons are damaged and die in similar ways.

* I personally wonder if severe anxiety in early life contributes to the onset of these diseases at an early age, such as in the case of Angelita. But what is certain is that neurodegeneration causes anxiety. ALS News Today: “Many ALS patients also experience anxiety and depression.. As in any serious illness, ALS has a huge impact of a person’s life as well as the lives of their family members and caregivers… Treatment is built on a combination of approaches, which include therapeutic counseling, and antidepressant medication… For the short-term treatment of anxiety, patients might be prescribed benzodiazepines in addition to cognitive behavioral therapy (CBT). CBT involves learning different ways of thinking, behaving, and reacting to anxiety- causing situations.”

The Mayo Clinic website on ALS: “As the disease progresses, ALS causes complications, such as: breathing problems: over time, ALS paralyzes the muscles you use to breathe. You might need a device to help you breathe at night.. The most common cause of death for people with ALS is respiratory failure. On average, death occurs within three to five years after symptoms begin. However, some people with ALS live 10 or more years. Speaking problems: Most people with ALS develop trouble speaking. This usually starts as occasional, mild slurring of words, but becomes more severe.. Eating problems: People with ALS can develop malnutrition and dehydration from damage to muscles that control swallowing. They are also at higher risk of getting food, liquids or saliva into the lungs, which can cause pneumonia. A feeding tube can reduce these risks and ensure proper hydration and nutrition. Dementia: Some people with ALS have problems with memory and decision-making.

I then read about perhaps the most famous ALS patient Stephen Hawking (1942-2018) in Wikipedia: in 1963, at the age of 21 he was diagnosed with ALS. He died at the age of 76, after living with the disease for more than 50 years. At 20, a year before his diagnosis, he met his future wife Jane, and the two got engaged to be married two years later, a year after his diagnosis. Hawking later said that the engagement gave him ‘something to live for'”. They married a year later and had three children born when Hawking was 25, 27, and 37.

When Hawking was in his late twenties he began using crutches and first used a wheelchair in his late thirties; at that time his speech deteriorated significantly. At 43 he required a nurse 24/7 and nursing care was split across 3 shifts daily. At 48, he told his wife that he was leaving her for one of his nurses, and moved out of the family home. He divorced his wife five years later and married Mason, his nurse, declaring: “It’s wonderful- I have married the woman I love”. There were allegations of Mason physically abusing and bullying Hawking. 11 years later he and Mason divorced, and Hawking resumed closer relationships with Jane, his children, and his grandchildren.

By his early 50s he was unable to use his hands to operate a wheelchair and by the age of 62 he wasn’t able to use his hand to control his communication device, so he used his cheek muscles with a rate of one word per minute. Near the end of his life, he experienced increased breathing difficulties, often resulting in is requiring the usage of a ventilator, and being regularly hospitalized.

anita

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