OT: ALS (Advice Needed)

[BluesBucksNHuskers]

Probably not the place for this but I'm striking out finding much . My dad was recently diagnosed with ALS. He's struggling a lot with not being able to do the things he loves to do - 3 years ago we went on a back country backpack hunting trip together, up until a few weeks ago he was still golfing every day and he loves to do giant wood working projects. Mentally he's just having a really hard time because he just feels like he's sitting there and rotting away now.

Has anyone gone through this or something similar with a loved one and found ways to keep them motivated and their minds busy? Or really any other advice, I'm just really struggling with watching him struggle and running out of ideas. My brother and I are on a rotation of flying down to see him every couple weeks and bringing the grandkids every other trip so we can see him and to give him something to look forward to.

 

[cwessel76]

I’m so sorry. I can’t really offer any advice but I wish your dad, you, and your family comfort and people. Sounds like you’re doing all you can right now from a logistics perspective and that’s awesome.

Does he like video games or movies? The video games don’t have to be shooters or anything but strategy games or card/board games could help pass the time.

 

[BluesBucksNHuskers]

I’m so sorry. I can’t really offer any advice but I wish your dad, you, and your family comfort and people. Sounds like you’re doing all you can right now from a logistics perspective and that’s awesome.

Does he like video games or movies? The video games don’t have to be shooters or anything but strategy games or card/board games could help pass the time.

haha not a bad idea, he used to sit there and play "Sky Shark" for hours until he beat it. I'll bring something down with me and see if it can peak his interested

 

[Juro]

No experience with it, but my fraternity raises money for Lou Gehrig’s disease.

First, really sorry to hear that. This disease and cancer are the worst. If your dad knows the details of what’s to come. And this is pretty normal for what to have go through your head knowing that.

He needs to see a therapist or something. The quicker he can come to acceptance, the more he’ll live out his life better.

Being in fear of death is one thing; knowing your clock and what your body will go through the last parts is the worst.

Sorry man. For him, you, and your family.

 

[cwessel76]

haha not a bad idea, he used to sit there and play "Sky Shark" for hours until he beat it. I'll bring something down with me and see if it can peak his interested

View attachment 49238

My stepdad and I would play this game together when I was a kid. Good times.

 

[RedSavage]

That's real tough, sorry to hear that. I have a friend who is 34 and has already exceeded his life expectancy from the initial diagnosis. Took them over a year to diagnose him as it's so extremely rare to find it in someone so young. He has a machine that he uses daily that does something along the lines of re-generating your cells (i'm blanking on what it's called) - not specific to ALS. It runs about $10-$15K new I believe but he swears by how much it helps. Might be worth looking into and if you would like, I can find out what it's called.

 

[BluesBucksNHuskers]

That's real tough, sorry to hear that. I have a friend who is 34 and has already exceeded his life expectancy from the initial diagnosis. Took them over a year to diagnose him as it's so extremely rare to find it in someone so young. He has a machine that he uses daily that does something along the lines of re-generating your cells (i'm blanking on what it's called) - not specific to ALS. It runs about $10-$15K new I believe but he swears by how much it helps. Might be worth looking into and if you would like, I can find out what it's called.

Yeah if you could find the name of it I'd love to look into it. He's 72 so a bit on the older side and symptoms are getting pretty tough but if it could give him a little hope and help with symptoms I'm sure we'd jump on it.

Getting it that young is crazy

 

[Alcaus]

Probably not the place for this but I'm striking out finding much . My dad was recently diagnosed with ALS. He's struggling a lot with not being able to do the things he loves to do - 3 years ago we went on a back country backpack hunting trip together, up until a few weeks ago he was still golfing every day and he loves to do giant wood working projects. Mentally he's just having a really hard time because he just feels like he's sitting there and rotting away now.

Has anyone gone through this or something similar with a loved one and found ways to keep them motivated and their minds busy? Or really any other advice, I'm just really struggling with watching him struggle and running out of ideas. My brother and I are on a rotation of flying down to see him every couple weeks and bringing the grandkids every other trip so we can see him and to give him something to look forward to.

I've gone through something similar and I really don't have an answer, unfortunately.

I'm sorry your dad is going through this.

 

[1HuskerDad]

Probably not the place for this but I'm striking out finding much . My dad was recently diagnosed with ALS. He's struggling a lot with not being able to do the things he loves to do - 3 years ago we went on a back country backpack hunting trip together, up until a few weeks ago he was still golfing every day and he loves to do giant wood working projects. Mentally he's just having a really hard time because he just feels like he's sitting there and rotting away now.

Has anyone gone through this or something similar with a loved one and found ways to keep them motivated and their minds busy? Or really any other advice, I'm just really struggling with watching him struggle and running out of ideas. My brother and I are on a rotation of flying down to see him every couple weeks and bringing the grandkids every other trip so we can see him and to give him something to look forward to.

I am so sorry your dad is dealing with this along with your family. I don’t know where your dad lives but there is a group here in Nebraska who helped a good friend of mine when he was diagnosed with ALS. They can help with medical equipment but probably also with support for you and your family.

Home : ALS in the Heartland

alsintheheartland.org

Even if he is outside of their area, they can network with other organizations that might be near where he lives.

I hope this helps somehow.

 

[2010sarenevercomingback]

Sorry to hear - prayers for your family, that's a tough road.

Only thing I've heard about ALS is that there's a higher incidence with statins, so if your dad is taking those, you may want to look into alternatives.

Beyond that, naturally regenerative things like sunlight, walking outside barefoot, laughter, etc. are all low-effort and enjoyable. Sometimes they help physically and/or psychologically, and there's really no downside to trying them.

 

[Jim14510]

That sucks. I'm sure you already are but brain some ideas of hobbies that don't require as much physical activity. Woodworking with smaller projects. Indoor plants/gardening, aquariums or other pets, video games already mentioned. Maybe find some podcasts that he'd like and show him how to listen.

Even if the hobbies requires a bit of physical work he can do most of it.