How are things going for you? I miss my dad who had to move to Dallas because we couldn't find adequate care for him in his home town in Illinois. He is currently living in a assistant living facility but it has more care then others. Dad can eat still on his own but basically needs help with almost everything else. Take care, Kim
How are you doing? My dad isn't good by any means but seems to be staying stable with his progression lately. I am sad because we couldn't find any adequate care for him in our small town . So, her currently moved to a facility in Dallas near my brother and sister. He is adjusting pretty well but it's still not home to him. Fell free to write me anytime. Kim
In regards to your Dad rejecting Tracheostomy, I think that is a personal decision by him. Tracheostomy (also known as Vent) puts a lot of burden to caregivers and the ALS patient alike.
If I were you, I would discuss the pros and the cons of a Tracheostomy at the ALS Clinic where he attends to. Just do not forget that ultimately the decision whether to Vent or not lies on him.
I, myself haven't made any decision in regards to Vent but...whatever I decide, I hope my family will respect it.
Take care and, if you need more help just leave another message.
I am sorry to hear that, apparently your Dad ALS is progressing rather quickly.
What you mention about throat spasms are actually Laryngospasms and they can happen even to healthy people. I don't think they are related to Bulbar problems. I might be wrong, though.
Though it can be scary while it's happening, laryngospasm typically goes away within a couple of minutes. There's no effective medication to relax the vocal cords more quickly. However, sitting down and trying to relax your whole body during an episode may speed recovery.
I really don't know how one gets into a clinical trial because my sister took care of most of that. Unfortunately, my dad was unable to get in one due to his progression. So, sign up for it quick. Start a thread and asked. I'm sure more members on here would know. I don't really do dad's caretaking but do spend as much time with him as possible and do errands or what I can for him. Take care and be strong. Kim
Please have your dad be extra careful that he uses equipment as needed. My dad didn't use a walker soon enough and had some nasty falls with just using his cane. Luckily, he never broke anything but just got badly bruised up. Dad would be walking just fine and his legs would just give out.
Also, I would strongly recommend your dad drink something like Boost or Ensure to help keep his calories up and supply him with vitamins.
Take it one day at a time and don't try of absorb all the info on here at once. Hopefully, your dad can possibly get into a clinical trial? They are making alot of breakthroughs with them lately. Dad is basically too old and to progressed at this time to be participate. Check into and get your dad on a list as soon as possible.
Take care and feel free to drop me a line anytime and tell me more about yourself and family. Kim
Jenn, just read your post about wheelchairs. Typically, the ALS clinic would help your dad choose one. Many start with manual chairs initially. Some can be borrowed from ALS closet. I suggest you wait until he meets with his care team. There are many variables and options in choosing just the right fit. You will need a professional hands on person to help you. However if he is falling frequently, suggest you rent one short term.
Jenn, go to YouTube and search " ABC's of ALS". It's a must see 3 part video seminar. My entire family watched it. It explains everything and is presented by the Norris ALS centre. Comprehensive and sensitive delivery of information. Do not watch other videos right now!