Dear Lewis:

mi Angelita suffers from Amyotrophic lateral sclerosis (ALS). Wikipedia reads that 90% of all cases begin after the age of 45, and 1% begin before age 25 (juvenile ALS). People who develop young-onset ALS are more likely to have a slower progression of the disease.

Individuals affected may ultimately lose the ability to initiate and control all voluntary movement, although bladder and bowel function and the muscles responsible for eye movement  are usually spared until the final stages of the disease. Although the initial symptoms and rate of progression vary from person to person, the disease eventually spreads to unaffected regions and the affected regions become more affected. Most people eventually are not able to walk or use their hands and arms, lose the ability to speak and swallow food and their own saliva, and begin to lose the ability to cough and to breathe on their own. Difficulties with chewing and swallowing make eating very difficult and increase the risk of choking or of aspirating food into the lungs.

Most people with ALS die between two and four years after the diagnosis.. and about 20% of people with ALS live between five and 10 years after symptoms begin. (Cosmologist Stephen Hawking lived for 55 more years following his diagnosis, but he is considered an unusual case).

“Cognitive or behavioral dysfunction is present in 30-50% of individuals with ALS… Repeating phrases or gestures, apathy, and loss of inhibition are frequently reported behavioral features of ALS…  About half the people who have ALS experience emotional lability (exaggerated changes in mood or affect.. Sometimes the emotions expressed outwardly are very different from how the person feels on the inside.. The person experiencing emotional lability usually feels like they do not have control over the emotions).”

Her disease is very, very serious, and the prognosis is poor.

You asked: “How can I rebuild this friendship? Will it ever be the same? Will it ever be more? Will I find what I deeply desire and have done since my teens, true love? Where do I go from here?”

I will be glad to communicate with you further so that you will be able to answer these questions yourself. For that purpose, I ask: do you know the onset age of her disease; are you aware of how serious her disease is, that no one with this disease gets better over time, and that she is highly likely to need hospice care within months or a few years from now?

anita

• This reply was modified 5 years, 2 months ago by .

Dear Lewis:

“Where do I go from here?”

1. Continue your personal development.

2. Get involved/ improve your involvement in your children’s lives, so that you are a better father to them. If their mother is neglectful or abusive to them, legally and practically protect them. Otherwise,  do your best to get along with her for the purpose of participating in your children’s lives in a way that will benefit them.

3. In regard to mi Angelita:

“How can I rebuilt this friendship:

1. Resolve to do her no harm. She has enough of a struggle in her life, she can’t handle any more struggle. No matter what she says or doesn’t say to you, do not react angrily while in her presence (online, on the phone, or in person).

You have the right now and in the future to limit or end contact with her, but if you choose to have contact with her, and for as long as you do, see to it that none of it includes angry talk or action on your part, expressions of suicidal ideation, or anything that will cause her anxiety on top of what she is already experiencing.

2. Expect this friendship to be time limited as her symptoms worsen to a point where she will not be able to engage in a friendship, or any kind of a relationship with you.

3. Demand nothing of her and be willing to give her more than you receive.

“Will it ever be the same? Will it ever be more?”- if it will be the same or more, take it as a gift, a time limited gift, and treasure this gift, for as long as it lasts.

“Will I find what I deeply desire.. since my teens, true love?”- you already found this in her, this is why you started your personal development, inspired by her true love for you.

Take in her true love for you, absorb it, let it sink in and let it encourage you as you proceed to make better and better choices, making your life meaningful, as a man and a father.

In the future, you may get involved with another decent woman who will love you and who will be healthy enough physically and emotionally to carry on a love relationship with you.

For as long as you are in mi Angelita’s life, be good to her.

anita

• This reply was modified 5 years, 2 months ago by .

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

• This reply was modified 5 years, 2 months ago by .