Advice for Planning Ahead - Addressing Respiratory Changes in ALS - Video 12

[Music] donnie jan thank you so much for inviting me into your home to have the chance to talk with you about your journey with als what kind of advice would you give someone like me in fairly early stages of planning for issues related to respiratory issues what should i be thinking about what should i be weighing what choices am i going to be facing well um certainly you know you're going to get all the assessment done each quarter at your clinic and so following that keeping track of it you really need to be willing to uh embrace the technology that you have that's offered to you you need to not really fight it but see how you can work with it to make it work for you and everybody's different everybody progresses at a different rate and because of my uh seeming to be the last symptom onset is my ball bar i'm able to um manage the sip and puff people that you know have more uh nerve damage in their throats may not be able to use the sit and puff may have to wear their mask all day long or if they don't like that because they can't communicate or or it's uncomfortable or whatever there are other alternatives like a nose pillows or dreamweaver mask which doesn't go up over the nose and uh so it's it's really a matter of of being open to like say embracing the technology what are some of your greatest concerns in terms of caregiving with the respiratory technology one of my big concerns is if something happens to him and i'm not here or if something happens to him and i'm not able to help him or to advocate for him or to answer questions and talk with men with emergency personnel i need to know that they're going to know what to do and so one of the things we've talked about is we get a hold of our local fire department and talk with them about you know if we called 9-1-1 i can give them a code for the front door so they don't have to break the door down they need to know that he has als and that his lungs are healthy but his diaphragm is gone and so he can't move air in and out a bracelet yeah he has a medical alert bracelet on that says respiratory onset als i require mechanical assistance for breathing beg me but we've talked about what else can we do besides just that medical bracelet we need something so that the fire department and emt 911 would know if somebody comes to this address what specific support he needs and we even know um we actually even want him to go to a specific hospital because we want him to go to the hospital where the als clinic is because the respiratory people there have a little bit more awareness of als and what an als patient needs and we want to make sure he gets the right care i also add in there that on from my standpoint being able to alert jan to wake jan up in the middle of the night if i'm having breathing issues and so we've we've got a an alarm that's really i can loud move my head over and hit and we also use that during the day i can she put it in her pocket go out work in the yard and i can use my eyes on my computer to alarm her but we also know that alarm is not 100 perfect and so no matter what i'm doing i'm always circling back in and making eye contact with him you know sometimes i'm out in the front yard and just looking through the front window at him other times i actually just make a point of i go out i do something i come back to get something in here to say hi to him i go back out i just keep circling back because we can't just rely on on an alarm no matter what it's a risk yeah yeah and we can't we know that we chose to live with that risk with respiratory issues and respiratory technology you know the message that you're conveying is that you have to be mindful of it all the time it's not something you can walk away from and not pay attention to that really sounds exhausting over the long term for both of you um how do you work you grow into it though you don't you don't have to know it all at once so do you have help come in to give you a break uh yeah we have family members that come over we have some friends that come over um and we have it set up that once a week somebody comes over and i get to take off for a few hours and do what i want to do you two are living with this technology and the risks of the technology as well as the benefits 24 7. so you're experts in it when you do ask family members and friends to assist how long does it take for them to get up to speed on what needs to be done with each piece of technology in each scenario that could go wrong well we've got a pretty small group of people probably about six or seven all together that that i would actually trust them to be alone with donny and well we showed them and we always show them the equipment that he's using they know how to change the batteries they know where the backup is they know where the coffices machine is if he were to choke or have trouble swallowing or aspirate i've eaten and they're here for the last right yeah the bulk of the you can choose our times so so i'm not doing anything risky like eating you know that might cause me to choke so we try and not put that burden on them yeah we've talked about like what has something happened to me and that's actually our biggest concern because the people that come and help us do so in the middle of the day when his care needs are not great um and his sister has come and knows most of your night time she's a nurse yeah she's a retired nurse but nobody knows the whole morning routine and nobody knows the whole nighttime routine so and the boys have all said if you need us to we will step in and we will do that we'll do anything and we believe them but yeah if something were to happen to me like if i got really sick with the flu or something like that we've talked about how i'm the strongest link in his care plan and i'm the weakest link in his care plan it's beyond just you know the the happiness support it's really a lot of things it's it's the clinic and the support you get from the clinic and the doctors it's the um the therapy you know um it's the attitude that all of that plays together in being able to to manage these things thank you so much for the time you've spent with me sure thank you you're welcome happy to do it [Music] you

Channel: The ALS Association

Views: 2,915

Rating: 5 out of 5

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Id: uxAPOz61Mmk

Length: 7min 51sec (471 seconds)

Published: Mon Feb 01 2021