update and question

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suziQ

Active member
Joined
Oct 30, 2021
Messages
33
Reason
PALS
Diagnosis
10/2021
Country
US
State
MI
Moved from my third floor apartment to a first floor one. While not handicapped it should work for me for a while as my legs are strong. Eating had gotten tougher but i can still do it. Getting a feeding tube the end of the month. Might have to stop taking Riluzole, blood work shows some abnormalities and a hematologist thinks it's related to the Riluzole.

Will also be start using a bipap.

My biggest fear is losing the ability to swallow. I don't so much care about eating, just swallowing. For those of you who had lost that ability can you tell me anything to alleviate the fear and anxiety?

Did not qualify for either of the studies I applied for.
 
I am sorry you didn’t qualify for studies

what are you afraid of with the swallowing? That you will choke on saliva? Mostly it seems like it is a nuisance more than a danger. You will find lots of threads here about handling secretions with lots of tips medicinal and other
I know your voice is affected. do you have communication alternatives set up?
 
i have a lot of sinus drainage and have always choked on it at times, afraid if i can't swallow i will choke on it. i hard swallow when i think a choke is coming on. Trying flonase but it's making my dry nose worse. I have seen things on here about suction devices but not sure if that is a solution for sinus drainage. Some of my fear might be just a generalized anxiety about all of this
 
SuzieQ, have you tried using Mucinex? When I feel excess phlegm or my sinuses are draining I use Mucinex Fast Max. It thins and loosens Mucus. Then I will use a cough assist machine. A PEG should relieve your anxiety.
If you find your voice is changing I encourage you to start voice banking. You can contact the Gleason foundation and they will set you up and walk you through the process.
Also, I find that using the trilogy at night drys me out alittle. Another tip is if your open to Medical Marijuana I use the tincture which also helps me with excess phlegm and saliva. There are many different options but you'll have to find what works for you and what your comfortable with. Everyone here will try to help you with what works for them.
 
All good ideas . Also if you haven’t done it consulting an ent and or allergist might be an idea
 
i use to take mucinex a lot and then stopped. When i took it the last time it seemed to make me groggy but I couldn't sleep with it. Will try it again. Will also look into a Marijuana tincture. i am in Michigan so i don't really need a prescription but plan to travel so if it works for me i will get a prescription.

i started voice banking but my voice isn't good enough for it now. not sure it was when i started. I have a text to voice app and always have paper with me. My friends and family can still understand me but sometimes when i have to give my phone number or address, i write it down.

Thank you Lisa and Nikki
 
No problem SuziQ, I hope you find something that works for you.
 
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