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  • 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.

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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 …

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Russ Newton
Russ Newton
02. nov. 2021
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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!


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