I have diaphragmatic paralysis due to my CMT, I go to a reapirology clinic that specializes in non invasive ventilation. They work with many ALS patients, and have been a godsend for my care plan. I have been having more and more difficulty having a productive cough, and right now I am at a stage where I don't need a trach ❤️ im glad to see the conversation around ventilators, we are still people, just bionic now
I'm a patient who is on a ventilator, uses Oxygen, a Cough assist machine, a suction machine, and a nebulizer. I'm unable to leave the house, because of those machines, and many more machines. If I could get a VOCSN ventilator, that'd be such a blessing. I use a Trilogy for portable use, and LTV for bedside use. I can go out for small outings, but going overnight doesn't happen. I've had friends asked me to have sleep overs with them. With all of the machines that I need, that's not happening. I have tried to get a VOCSN, but my durable medical equipment provider does not have the VOCSN. They created an account with the company, but 1: those machines are on back order, and 2: I don't see the company ordering one. I did something yesterday, and called my Pulmonologist to see if she'd write a script and send it to my durable medical equipment provider, and so hopefully she will, and if she does, I'm wondering if they'll be FORCED to order a VOCSN with the order faxed to them for specifically a VOCSN. I HOPE, because I'd like to go overnight somewhere for a change.
Thank you for doing what you do! I stumbled upon your video while looking for supplemental material to give my students to review. I'm now subscribed and look forward to more videos. You're both amazing!
This is a great video. My husband cant tolerate being disconnected from the vent while hooked up to something. He has the inline suction catheter. For us this is super easy and he's never disconnected except for a second when I switch him to his back up vent to change all his circuits weekly. He has the separate machine but we dont use it.
Cracked up at your “ used condom comment! “ It’s refreshing to hear sarcasm from you both surrounding tricks of the trade with coping with every day life with basic care to keep up in the game of life. I think it’s very helpful for those folks who might be intimidated by the responsibilities surrounding caring for an individual with a tracheotomy. Thank you for your uplifting and hilarious videos.💜
Humor is important. We were so intimidated when leaving the hospital. We understand the learning curve is tough...and intimidating. Only 10% of ALS patients choose life when faced with the decision to trach. I can't help but wonder how much intimidation plays into that decision. We are going to be putting out some more videos soon.
I have a separate cough assist and we leave the inline suction on it so I don't have the condom on my chest all day. However, most of the time not much comes up with the inline after using cough assist.
How does a hole in your throat feel? Does it hurt? Are you afraid that you’re going to get something caught in it do you have a cover for it? Did the surgery hurt? Did the tracheostomy hurt? What medication’s did you take after your surgery to make you feel better and not be in pain after your tracheostomy?
awesome. I wanted to get the VOSCEN but wasn't sure of the breathing comfort as with the triology 100 ventilator. How did it feel when you first change from the other ventilator? We travel a lot for thousands of miles sometimes.
It felt a little strange for the first hour. But it is really a phenomenal piece of equipment. I have one on my chair and one on the night stand. We have done multiple road trips with no issues at all.
@@ALifeStoryFoundation awesome! I am going to order two of them and see. By the Way, which DME did you get them through? I am with Apria who doesn't carry them. And we have to get together one day soon, what say you ?
@@cardelanthony Absolutely. We would love to meet you. We ran into the same issue with our DME provider at first. But now they have tons of them. Where are you located?
@@ALifeStoryFoundation We live in Miami near the Hard Rock Stadium. Between 199 and 441, this makes me so happy! I will let Sheila and your beautiful wife make the arrangements. And then we will have some fun God willing.! we love you guys and your beautiful little Princess! so what is the name of your DME? Maybe I could get the VOSCEN from them. Do they take BCBS insurance, and or Medicaid?!
@@ALifeStoryFoundation Maybe I haven't seen it but how you feel and what if any your struggles are as a care giver for your husband and being a mom. My father had AlS and that was one topic that just was not discussed. How he felt how we felt. My heart is full for you both because of the love that radiates out of these videos for us all to see. 💙💜
I was diagnosed in November of 2022 with ALS Lou Gehrig. Disease. I had COPD before ALs Since 1994. Now since my ALS I'm having trouble trying to cough or blow my nose. I don't have enough strength to cough or blow my nose. My lungs won't expand enough. To cough out mucus or food that gets in to my air passage way. When I'm trying to eat or drink liquid. Do I have to get doctors approval for this cough assistance unit?
this is great! it's good to see these kinds of devices being demonstrated by someone that requires it. thank you to both of you for sharing.
I have diaphragmatic paralysis due to my CMT, I go to a reapirology clinic that specializes in non invasive ventilation. They work with many ALS patients, and have been a godsend for my care plan. I have been having more and more difficulty having a productive cough, and right now I am at a stage where I don't need a trach ❤️ im glad to see the conversation around ventilators, we are still people, just bionic now
I'm a patient who is on a ventilator, uses Oxygen, a Cough assist machine, a suction machine, and a nebulizer. I'm unable to leave the house, because of those machines, and many more machines. If I could get a VOCSN ventilator, that'd be such a blessing. I use a Trilogy for portable use, and LTV for bedside use. I can go out for small outings, but going overnight doesn't happen. I've had friends asked me to have sleep overs with them. With all of the machines that I need, that's not happening. I have tried to get a VOCSN, but my durable medical equipment provider does not have the VOCSN. They created an account with the company, but 1: those machines are on back order, and 2: I don't see the company ordering one. I did something yesterday, and called my Pulmonologist to see if she'd write a script and send it to my durable medical equipment provider, and so hopefully she will, and if she does, I'm wondering if they'll be FORCED to order a VOCSN with the order faxed to them for specifically a VOCSN. I HOPE, because I'd like to go overnight somewhere for a change.
Great job on both sides of the camera, Mrs. Swan!
Thanks, Kev!
Thank you for doing what you do! I stumbled upon your video while looking for supplemental material to give my students to review. I'm now subscribed and look forward to more videos. You're both amazing!
This is a great video. My husband cant tolerate being disconnected from the vent while hooked up to something. He has the inline suction catheter. For us this is super easy and he's never disconnected except for a second when I switch him to his back up vent to change all his circuits weekly. He has the separate machine but we dont use it.
Cracked up at your “ used condom comment! “ It’s refreshing to hear sarcasm from you both surrounding tricks of the trade with coping with every day life with basic care to keep up in the game of life. I think it’s very helpful for those folks who might be intimidated by the responsibilities surrounding caring for an individual with a tracheotomy. Thank you for your uplifting and hilarious videos.💜
Humor is important. We were so intimidated when leaving the hospital. We understand the learning curve is tough...and intimidating. Only 10% of ALS patients choose life when faced with the decision to trach. I can't help but wonder how much intimidation plays into that decision. We are going to be putting out some more videos soon.
😂😂He loves that shit.....I love his humor...✌
A wonderful video. Easy to understand. The coughassist is a great machine. Thank you
Seems like that would help decrease incidence of pneumonia.
Absolutely. Clear lungs are happy lungs!
I have a separate cough assist and we leave the inline suction on it so I don't have the condom on my chest all day. However, most of the time not much comes up with the inline after using cough assist.
Ah em! Pull out the craft materials kids 😂😂😂
Remember all the gifts we gave you? All made from recycled cough assist tubes. LOL How is 'west siiiiide?'
How does a hole in your throat feel? Does it hurt? Are you afraid that you’re going to get something caught in it do you have a cover for it? Did the surgery hurt? Did the tracheostomy hurt? What medication’s did you take after your surgery to make you feel better and not be in pain after your tracheostomy?
you guys are amazingly awesome! thank you for sharing...so generous and helpful for so many sharing your journey. xoxo
If life gives you lemons, whip up a batch of lemonade for your friends!
@@ALifeStoryFoundation Thank you for that...sounds like you are coping the best way possible, with spirits high. Bless you!
@@suessosimplesogoodrecipes5410 Likewise!
Thanks
I love u Kevin Swan
awesome. I wanted to get the VOSCEN but wasn't sure of the breathing comfort as with the triology 100 ventilator. How did it feel when you first change from the other ventilator? We travel a lot for thousands of miles sometimes.
It felt a little strange for the first hour. But it is really a phenomenal piece of equipment. I have one on my chair and one on the night stand. We have done multiple road trips with no issues at all.
@@ALifeStoryFoundation awesome! I am going to order two of them and see.
By the Way, which DME did you get them through? I am with Apria who doesn't carry them.
And we have to get together one day soon, what say you ?
@@cardelanthony Absolutely. We would love to meet you. We ran into the same issue with our DME provider at first. But now they have tons of them. Where are you located?
@@ALifeStoryFoundation We live in Miami near the Hard Rock Stadium. Between 199 and 441,
this makes me so happy! I will let Sheila and your beautiful wife make the arrangements. And then we will have some fun God willing.!
we love you guys and your beautiful little Princess!
so what is the name of your DME? Maybe I could get the VOSCEN from them. Do they take BCBS insurance, and or Medicaid?!
@@cardelanthony Good to know! We use Millennium Respiratory. They definitely service Miami!
💚🧡 I am so glad he loves that sh#@!!🤣 First time I have heard of this machine. Thank you for Sharing
Right?! He does and thanks so much for watching! Any ideas for more videos!?
@@ALifeStoryFoundation Maybe I haven't seen it but how you feel and what if any your struggles are as a care giver for your husband and being a mom. My father had AlS and that was one topic that just was not discussed. How he felt how we felt. My heart is full for you both because of the love that radiates out of these videos for us all to see. 💙💜
I think that cough Assist helps with getting pneumonia and I have a lot of secretions too and it is gross so you need to have something done about it.
I chose this video to learn about using a cough assist with my son...I ended up cracking up! Hopefully he'll love this shit too!!🤣
Чокнутый
where we can buy this cut able tubes ? what is it call? thanks 🙏
Do tracheostomy’s hurt?
Hi
How do you speak?
No gloves! Best way to spread infection.
I love that shit!
Something about loud voices how did Benji dweet? Que yo Benji?
Can he blow his nose?……
Kkkkkk
.
She looks clean but doesn't use gloves and then touches her own mouth truly gross
Ойй ужас,что же за жизнь😮😮😮😮😢
I was diagnosed in November of 2022 with ALS Lou Gehrig. Disease. I had COPD before ALs Since 1994. Now since my ALS I'm having trouble trying to cough or blow my nose. I don't have enough strength to cough or blow my nose. My lungs won't expand enough. To cough out mucus or food that gets in to my air passage way. When I'm trying to eat or drink liquid. Do I have to get doctors approval for this cough assistance unit?
great video, but my 9 yr old doesn't need to hear swearing, sorry just my opinion for community guidelines