My husband has bulbar onset ALS and it took a year and five months to diagnose. The doctors first thought he had Bells Paulsey . This started April 2021, he was diagnosed September 2022. By the time we knew what was going on you could not understand anything he was saying. I urge you to bank your voice! Tobi-Dynavox got us the tablet/computer that could have banked his voice but it also will allow him to text and when his fingers don’t work anymore it has eye gaze on it so he will still be able to communicate.
Have you thought about starting a go fund me? I’m sure there would be a lot of people who would love to help you and your family. Keeping you in my thoughts
I don’t want personal financial assistance. I’m still working and want any funds to go to ALSA to find treatments and a cure. Hopefully I never need personal financial help.
@@scootsalsstory7456 ok good! You seem like a really great person and I want you to feel the best you can. My dad was diagnosed with ALS and I’ve seen how difficult and painful it can be, both emotionally and physically. All I can offer are a few words of encouragement, it’s not much but I hope i can at least make your day a little more positive. Take care :)
the taste is the tip of the iceberg. lol the side efffects arent tolerable to me, especially with no positive effects. and "maybe" it slows it dowmn. but thank u for the ide.
@scootsalsstory7456. I was diagnosed last April with slow progressing ALS. Videos like this help me a lot. How long has it been since your diagnosis? And how are your arms and hands? Thank you.
Brotha , I've been following you for a while. Saw your videos once I was glancing down a wormhole about ALS and have been hooked since. I truly truly hope you keep fighting the good fight. You're an inspiration to me for sure. Keep fighting brother. ..sending love from California
God bless you man, you gave me a good laugh that sense of humor is still shining bright, love from Ireland
My husband has bulbar onset ALS and it took a year and five months to diagnose. The doctors first thought he had Bells Paulsey . This started April 2021, he was diagnosed September 2022. By the time we knew what was going on you could not understand anything he was saying. I urge you to bank your voice! Tobi-Dynavox got us the tablet/computer that could have banked his voice but it also will allow him to text and when his fingers don’t work anymore it has eye gaze on it so he will still be able to communicate.
5 months today ALS take my husband life , no one deserved this.. prayers for you 🙏🏻
Thank you for updating us. What state do you live in?
What other systems are you having?
Voice banking -that’s really cool
Have you thought about starting a go fund me? I’m sure there would be a lot of people who would love to help you and your family. Keeping you in my thoughts
I don’t want personal financial assistance. I’m still working and want any funds to go to ALSA to find treatments and a cure. Hopefully I never need personal financial help.
@@scootsalsstory7456 i keep saying the wrong thing every time I comment on your posts lol I apologize again. I suck at being supportive
@@courtneybazinet7824 ur doing just fine. I promise I took no negative vibes from u.
@@scootsalsstory7456 ok good! You seem like a really great person and I want you to feel the best you can. My dad was diagnosed with ALS and I’ve seen how difficult and painful it can be, both emotionally and physically. All I can offer are a few words of encouragement, it’s not much but I hope i can at least make your day a little more positive. Take care :)
You can hold your nose. It’s impossible to taste while you hold your nose
the taste is the tip of the iceberg. lol the side efffects arent tolerable to me, especially with no positive effects. and "maybe" it slows it dowmn. but thank u for the ide.
@scootsalsstory7456. I was diagnosed last April with slow progressing ALS. Videos like this help me a lot. How long has it been since your diagnosis? And how are your arms and hands? Thank you.
@@carriekraft8034 it’s been one year since diagnosis but first symptoms were 2016. Arms n legs still functional but weaker than a year ago.
It IS a horrible disease. May I ask if you know Jesus? Our life HERE is very short. But eternity is a very long time. Everyone lives forever somewhere
I appreciate all ur words but I am not a religious person.
Brotha , I've been following you for a while. Saw your videos once I was glancing down a wormhole about ALS and have been hooked since. I truly truly hope you keep fighting the good fight. You're an inspiration to me for sure. Keep fighting brother. ..sending love from California
@@Mondo-jo8my thanks my man. It’s hearing encouragement from people like u and my support group that keep me going