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.

 

[BluesBucksNHuskers]

Figured I'd give a bit of an update here. The video game idea was good for a couple hours of really good laughs for us, but his left hand isn't very responsive and has a hard time pressing buttons so while being hilarious, I doubt will help much.

Took him golfing with me every day for a week, we played best ball and whenever we were in a flat spot and he'd be able to get to it he'd hit. Every now and then I'd open my club face a little bit and let my shot sore off into the desert so we could use his shot 🤣, he'd smile ear to ear every time. He's hit a Nike Mojo (awful golf balls) for 20 years so I bought a big sack of Mojos and when we'd drive by a pond you have to hit over, or a canyon I'd toss a Mojo in and say "Look dad, it's like you're golfing just like you used to" - got some good laughs out of him that way.

He's working on a small live edge coffee table for me and we've got everything he needs set up to be easily accessible. He got to teach me about wood-working some and it was awesome. After he finishes that up he's going to make me a chess set - that should keep him busy until I get back down there.

Also, we always wanted to do an Alaskan hunting/fishing trip, while that's not possible we got him and his wife booked on an Alaskan Cruise in May that will have plenty of help to get him around - have plenty of crown royal for him and he'll be able to see Alaska while we still have him.

Appreciate all the Ts&Ps from y'all. This shit isn't easy and the goodbye this time was probably the most excruciating moment of my life so far, one of the symptoms of ALS is your emotions have a much more dramatic range - so when he'd laugh it would be this loud belly laugh that was just awesome, but when I was leaving he broke down into tears and I had to catch him from falling. I wouldn't wish this god awful disease on my worst enemy.

 

[Huskerbuck85]

I’ve been debating making a post on this for a year now. My Mother was diagnosed with Bulbar ALS Feb 3 last year. Man we can go down several rabbit holes on this so I’ll do my best to try & not go in circles. Feel free to reach out and keep hitting back with questions.

I searched ALS on fb and found many helpful groups. Those led me to groups that look at it from another angle….Lyme disease & Co-Infections, Mold, metal, toxins, etc…

My Mom was ultimately diagnosed at the Mayo Clinic where she tested negative for Lyme and also two times prior, one being her neurologist in Lincoln. IMO the neurologist will be more interested in telling you about his pier reviewed research papers and giving you meds that will “give you more time” than actually fighting to help you find solutions. Yes I know not many diagnosed ever find solutions. (Look up Deanna Protocol). There are also other protocols out there.
Join fb groups about ALS and also Lyme disease and healing ALS.

We went and saw a functional medicine Dr and did a blood test that tests much deeper and insurance doesn’t pay bc as we all know, big pharma controls everything!!$$$.

She tested positive for Lyme and all the other shit I mentioned above. We then started seeing an LLMD (Lyme literate medical Dr) in Olathe Ks. She took a different blood test and again tested positive for all that shit so Mom started this big protocol. While she did lose her speech and eating ability she was still driving and working up until her massive heart attack on Thanksgiving. Currently she had to stop all protocol supplements except the Deanna protocol as she now fights for her life due to the heart attack. She’s in great spirits but she’s having so many setbacks since the heart attack.

Interesting info: Lou Gehrig had a house in Lyme Connecticut. Guess where Lyme disease got its name due to its prevalence???

I truly believe there is hope for your dad if you’re willing to go after it and I hope nothing more than that he beats this!!!. It’ll take money, time and patience. A lot of faith and most of all, he needs to keep the anxiety and stress down.

Needs to make huge commitments to getting his gut and liver right and then start in on the rest. It’s all part of the protocols out there.

I know some ppl have a gene and one other thing that show up as being common with als but then there’s those with no explanation at all. Fight it my man. As long as you can and pray for the best!!

 

[BluesBucksNHuskers]

I’ve been debating making a post on this for a year now. My Mother was diagnosed with Bulbar ALS Feb 3 last year. Man we can go down several rabbit holes on this so I’ll do my best to try & not go in circles. Feel free to reach out and keep hitting back with questions.

I searched ALS on fb and found many helpful groups. Those led me to groups that look at it from another angle….Lyme disease & Co-Infections, Mold, metal, toxins, etc…

My Mom was ultimately diagnosed at the Mayo Clinic where she tested negative for Lyme and also two times prior, one being her neurologist in Lincoln. IMO the neurologist will be more interested in telling you about his pier reviewed research papers and giving you meds that will “give you more time” than actually fighting to help you find solutions. Yes I know not many diagnosed ever find solutions. (Look up Dianna Protocol). There are also other protocols out there.
Join fb groups about ALS and also Lyme disease and healing ALS.

We went and saw a functional medicine Dr and did a blood test that tests much deeper and insurance doesn’t pay bc as we all know, big pharma controls everything!!$$$.

She tested positive for Lyme and all the other shit I mentioned above. We then started seeing an LLMD (Lyme literate medical Dr) in Olathe Ks. She took a different blood test and again tested positive for all that shit so Mom started this big protocol. While she did lose her speech and eating ability she was still driving and working up until her massive heart attack on Thanksgiving. Currently she had to stop all protocol supplements except the Deanna protocol as she now fights for her life due to the heart attack. She’s in great spirits but she’s having so many setbacks since the heart attack.

Interesting info: Lou Gehrig had a house in Lyme Connecticut. Guess where Lyme disease got its name due to its prevalence???

I truly believe there is hope for your dad if you’re willing to go after it and I hope nothing more than that he beats this!!!. It’ll take money, time and patience. A lot of faith and most of all, he needs to keep the anxiety and stress down.

Needs to make huge commitments to getting his gut and liver right and then start in on the rest. It’s all part of the protocols out there.

I know some ppl have a gene and one other thing that show up as being common with als but then there’s those with no explanation at all. Fight it my man. As long as you can and pray for the best!!

Damn man, first sorry for the battle you're going through. I have some reading to do today.

 

[Huskerbuck85]

Damn man, first sorry for the battle you're going through. I have some reading to do today.

Thank you and God bless my friend and pace yourself. You can read and ask questions till you’re blue in the face. I encourage it but just piece things together as they come, take notes , call places, talk to people in those groups that are currently living it, etc….nobody deserves to suffer like that!

 

[God is a Husker]

Interesting info: Lou Gehrig had a house in Lyme Connecticut. Guess where Lyme disease got its name due to its prevalence???

I think we are like 2 weeks away from the Federal Government finally declassifying that modern Lyme disease as we know it was a bio weapon leak from our Lab.

similar type western hemisphere diseases have been known and studied since the 1600s but the modern strain that's so potent was never seen prior to the 1970s when it first hit the public outside of a secret island Federal bioweapons R&D facility outside of Lyme Connecticut that was tasked with "studying" new world tick transmitted diseases

But hey, it might just be a coincidence like Covid was when it started in a city that has a bioweapons R&D lab that exclusively "studies" novel Corona viruses.

 

[Huskerbuck85]

I think we are like 2 weeks away from the Federal Government finally declassifying that modern Lyme disease as we know it was a bio weapon leak from our Lab.

similar type western hemisphere diseases have been known and studied since the 1600s but the modern strain that's so potent was never seen prior to the 1970s when it first hit the public outside of a secret island Federal bioweapons R&D facility outside of Lyme Connecticut that was tasked with "studying" new world tick transmitted diseases

But hey, it might just be a coincidence like Covid was when it started in a city that has a bioweapons R&D lab that exclusively "studies" novel Corona viruses.

You aren’t wrong. We can only pray that someday there is a stop to the madness and a solution that’ll save everyone that’s being victimized by it.