Updated: Nov 3, 2020
I was diagnosed on 11/01/19 so I am one year into my ALS journey. At this point I have no physical symptoms, muscle loss, loss of coordination, stumbling etc... I do have difficulty breathing and eating and I am meeting with a Gastroenterologist later this week to discuss a feeding tube, but I can still take food orally, (though I must be more careful to avoid chocking I admit). I have always been a data/facts guy so here are the facts on Bulbar onset ALS.
(From US National Library of Medicine National Institutes of Health) The median survival time from onset to death ranges from 20 to 48 months, but 10–20% of ALS patients have a survival longer than 10 years. Older age and bulbar onset are consistently reported to have a worse outcome.
(From ALS Treatment.com) In the form of ALS known as bulbar onset ALS, these symptoms tend to appear in the beginning. This is also associated with a shorter rate of survival.
(From ALS Treatment.com) Most ALS deaths result from respiratory failure, something that happens over the course of several months. Medications can help in relieving fear, anxiety, and discomfort. Family members often describe the death as peaceful. (HA! how does the patient feel about this is what I want to know!)
(From ResearchGate.net) The median time to symptomatic progression beyond the bulbar region was approximately 1 year, with equal proportions progressing to the upper or lower limbs. The median interval from onset to anarthria (speaking difficulties) was 18 months, and to loss of ambulation 22 months. There was a close correlation between the two (r(2)=0.6) and median survival from loss of ambulation was only 3 months.
So I have time to parse all of this data and here is what I see. Bulbar onset from Diagnoses (11/01/19) to death is 22 to 25 months. And in fact, it was going to be less than that for me because I was dead set against a ventilator. But everything I read tells me I should have started to see muscle weakness and loss of coordination by one year and I have not see that yet.
So, I have to update my thoughts on the matter and now I am leaning toward getting a ventilator. Because if I am mobile I can still have a quality of life, limited but still worth living. Not a final decision, I could still have a sudden collapse of motor function, but where I sit now I am thinking I may be around a little bit longer.