top of page
  • Writer's pictureRuss Newton

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.


555 views2 comments

Recent Posts

See All

Last update for a few days.

First, hydration works! No episode last night, what a relief. Now I just have to keep putting fluids in the engine to keep it running smooth. Taking off for the chilly North in a few minutes. Should g

Update.

So I hydrated like heck today. I took in two bottles of Pedialyte, 33.8 ounces each and 6 355ml of Jevity liquid protein and follow up with three 16 ounces of water. And not breathing difficulties to

2 kommentarer


offngon
offngon
01. nov. 2021

HI Honey, Thanks for the updates! Sorry we missed each other in August. While I was in WI my brother passed away. I'm the last one left. I hope your traveling companion is doing good. I am at Richard's and Julie's for 2 weeks, then they will take me to meet with Jackie and Sindy and back to home in MI. Getting a little homesick! Am excited about Thanksgiving and Christmas this year. This will be the first Christmas in 4 years I have felt good. I walk 2-3 miles a day, but that will slow down with the cold weather. Keep the blogs coming. I look forward to them. I love you lots and you are always in …

Synes godt om
Russ Newton
Russ Newton
02. nov. 2021
Svarer til

Aunt Jane,


Thank you for the update, sorry to hear about your brother, that is sad. Yes, Jim seems to be recovering nicely from his heart attack. I love you!


Russ

Synes godt om
bottom of page