Two year anniversary of my diagnoses of Bulbar Onset ALS.
A date I didn't think I would make. On the day I was diagnosed, I had 22 months to live according to the National Library of Medicine.
Patients with bulbar amyotrophic lateral sclerosis (ALS) are often referred to the otolaryngologist/head and neck surgeon and speech pathologist for evaluation and management of dysphagia and dysarthria. These patients comprise an unusual group because of the progressive and multi-system nature of their illness. The neuromuscular disabilities associated with bulbar ALS cause a myriad of related symptoms associated with swallowing, speech, and respiration. Although the rate of progression cannot be predicted, a general pattern of progression is noted. Bulbar disease accounts for the majority of the worst symptoms of ALS. The loss of the ability to swallow changes eating from a pleasurable task to a burden of survival. Loss of communication effectively imprisons the patient in a state of isolation. The progressive weakness of respiration, predominantly a spinal rather than bulbar manifestation, is the cause of death for nearly all ALS patients.
And I decided early on I would accept a feeding tube but I would not accept a ventilator. And the use of a ventilator was in the 22 month survival rate. So I never thought I would hit this day. Hurrah he says weakly. But I can't eat or speak and definitely feel Isolated by not speaking. And while the picture is somewhat disturbing, that is what is happing to me. I can't not move my lounge at all and I bite it and the side of my mouth ten times a day. Not sure why since I am not taking any nutrition by mouth.