Still going strong

[Nighthawk]

@K Lynne T:

You husband probably needs a Cough Assist machine to relieve these episodes of he passing out when he tries to cough hard as his breathing muscles are not as strong as they were before the disease onset.
The Cough Assist machine would help him get rid of the phlegm that builds up in his chest caused by colds.

You could loan one of these Cough Assist machines from your local Chapter of the ALS Association "Loaner Closet". You may need to contact them to get it.

Hope this helps.

NH

 

[ECpara]

Hi K Lynne T. My husband doesn't pass out but he does have frequent lightheadedness or dizzy spells. His breathing is good so we're not sure what causes this. The other thing that scares me is the frequency of coughing up sticky phlegm, it makes his whole body shake. But he can cough, he sleeps like a baby, and no shortness of breath. Just a lot of fatigue.

I so miss talking to him. He can't speak anymore. We'll sit in the evening and converse via his iPad, but no more real spontaneous conversation. Car rides are silent if he drives. He has me drive more and more so he can at least speak via iPad if necessary. In company he misses being part of everyone's conversation, by the time he gets his point put down on the iPad or notepad, the conversation topic has changed. He's gotten mad over this a few times. Frustrating for him.

He's also lost muscle in his face and has a constant frown. Smiling is hard for him. A few times we have posted family pictures on Facebook, people (who don't know) have asked what he's so mad about.

So, yeah, I hate to think what else is ahead. But I consider him lucky when I see others with limb onset and all they have lost. I recently met up with a woman here in Thomasville whose husband is on a vent and has lost every function except the blinking of his eyes. I also have a friend whose husband passed away from limb onset ALS, he lost all functions within 2 years of onset, also only left with his eyelids for communication.

What a disease, huh? I will keep everyone on this post in my prayers. We're in this long haul together!

 

[EJTUNow]

"I hate to think what else is ahead"
Here is what I think is ahead
https://www.alsforums.com/forum/general-discussion-about-als-mnd/22145-propofol-therapeutic.html

 

[DawneO]

My friend is 1.5 years since symptoms, 4 months since diagnosis, no limb involvement. No PEG tube yet, would like not to need one. still maintaining weight with oral intake.