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randall's ALS diary (1 Viewer)

Hard to believe I haven’t updated since June. A whole lot has changed. I’m much weaker physically, but more stable emotionally than earlier in this experience.

Physically I don’t walk at all, other than using a walker to get from the 2nd floor steps to my bed - probably 25 ft - and then getting from bed to the bathroom. I can’t really dress myself any more, and my hands are probably at 25% strength and dexterity.

My speech has also gone downhill- I try not to speak too much as my mouth and tongue and breath get tired quickly. I have to repeat myself more often, particularly with my 9 year old, which is frustrating for both of us

I don’t go to work much at all, and I should get my retirement paperwork in soon  I spend a lot of time watching tv, playing games, and watching my boys’ soccer.  All three of my boys teams are having great seasons, and I’ve gotten to see more of the weekday games than ever before, so that’s been great.  And the endless youth basketball season starts soon.

Thanks to you guys and my generous friends my home addition is coming along nicely. Hopefully it’ll be done by thanksgiving. It’ll be great to be able to live on one floor and have an accessible bathroom and shower. 

I also have a permanent wheelchair now with all kinds of comfort features. I’m deep into van shopping and should pick something in the next week.

I finished my 30+ week clinical trial (called “Centaur”) and now I’m in the “open label” extension, which is a continuation but I’m now definitely taking the real drug, whereas during the main trial 1/3 we’re getting placebo. I’d guess I was getting placebo due to my lack of apparent benefit, but that’s a total guess. I won’t know for sure until they compile the data, probably by the end of the year.

I’ll likely start a new clinical trial early in 2020. I’m also currently experimenting with different supplements that have had some success in some ALS patients, but I haven’t noticed any slowing of disease progression. It’s impossible to know though. Everyone’s course is different and there’s no way for me to distinguish between a permanent vs temporary setback, and no way to know what is disease vs side effect, and most importantly no way to know how much sicker I’d be without the drugs. All I know is something gets a little worse each day. Bummer.

What doesn’t get worse is the continuing support from our friends and community. People have been so generous with money and time and love. It’s been so eye-opening. I never lived in one town or state for very long as a kid, so I wasn’t familiar with life in a small(ish) town community,  so I’m constantly amazed by the support from my town, the RI legal community. People bring us dinner two nights a week. A big group of high schoolers woke up early on a Sunday to run in an ALS 5k. Each of the sports organizations our kids belong to have comped us registration and other costs, held fundraisers, or held workdays. It’s too bad I had to get sick to realize how amazing people are, but it’s been a great lesson.

And of course continued thanks to the FBG  ffa community. I don’t have the wenergy to post much anymore, but you know I wallow in the swamp of the politics forum daily. 

Bye for now

-randall 

 
Glad you are able to actively engaged with your kids' games. I hope they are doing okay with this. You continue to show great strength and perseverance. Wonderful ti have such a supportive community.
Political Forum is an odd tonic, but whatever works. ;)  

 
randall146 said:
Hard to believe I haven’t updated since June. A whole lot has changed. I’m much weaker physically, but more stable emotionally than earlier in this experience.

Physically I don’t walk at all, other than using a walker to get from the 2nd floor steps to my bed - probably 25 ft - and then getting from bed to the bathroom. I can’t really dress myself any more, and my hands are probably at 25% strength and dexterity.

My speech has also gone downhill- I try not to speak too much as my mouth and tongue and breath get tired quickly. I have to repeat myself more often, particularly with my 9 year old, which is frustrating for both of us

I don’t go to work much at all, and I should get my retirement paperwork in soon  I spend a lot of time watching tv, playing games, and watching my boys’ soccer.  All three of my boys teams are having great seasons, and I’ve gotten to see more of the weekday games than ever before, so that’s been great.  And the endless youth basketball season starts soon.

Thanks to you guys and my generous friends my home addition is coming along nicely. Hopefully it’ll be done by thanksgiving. It’ll be great to be able to live on one floor and have an accessible bathroom and shower. 

I also have a permanent wheelchair now with all kinds of comfort features. I’m deep into van shopping and should pick something in the next week.

I finished my 30+ week clinical trial (called “Centaur”) and now I’m in the “open label” extension, which is a continuation but I’m now definitely taking the real drug, whereas during the main trial 1/3 we’re getting placebo. I’d guess I was getting placebo due to my lack of apparent benefit, but that’s a total guess. I won’t know for sure until they compile the data, probably by the end of the year.

I’ll likely start a new clinical trial early in 2020. I’m also currently experimenting with different supplements that have had some success in some ALS patients, but I haven’t noticed any slowing of disease progression. It’s impossible to know though. Everyone’s course is different and there’s no way for me to distinguish between a permanent vs temporary setback, and no way to know what is disease vs side effect, and most importantly no way to know how much sicker I’d be without the drugs. All I know is something gets a little worse each day. Bummer.

What doesn’t get worse is the continuing support from our friends and community. People have been so generous with money and time and love. It’s been so eye-opening. I never lived in one town or state for very long as a kid, so I wasn’t familiar with life in a small(ish) town community,  so I’m constantly amazed by the support from my town, the RI legal community. People bring us dinner two nights a week. A big group of high schoolers woke up early on a Sunday to run in an ALS 5k. Each of the sports organizations our kids belong to have comped us registration and other costs, held fundraisers, or held workdays. It’s too bad I had to get sick to realize how amazing people are, but it’s been a great lesson.

And of course continued thanks to the FBG  ffa community. I don’t have the wenergy to post much anymore, but you know I wallow in the swamp of the politics forum daily. 

Bye for now

-randall 
Click to expand...
awesome....stay strong brother!

 
@randall146 i am so proud of you for spending so much time with your kids while you're dealing with your own treatment. I've always been a fan but you're showing character in the face of something really difficult. Good luck dude wish you all the best.  

 
Hate that I missed this thread until now.  Very inspiring stuff, Randall.  You're a source of strength for the rest of us.  Hope that home addition is complete. 

 
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Coming up on a year since you started this thread.  Hope you are ok.  Was just thinking of you guys.  

 
Randall it is an inspiration to see how you are handling this and wish you and your family a holiday season full of great memories. 

 
thinking of you Randall especially since ALS was in the news this week  with Calgary Flames Assistant GM Chris Snow being diagnosed.

Apparently researchers at University of Miami might have made progress and Chris Snow will undergo experimental drug trials there.

Wishing you and your family the best.

 
Wishing you and yours a very happy holiday season. Always 🙏🏻 that you have peace, comfort and love. Merry Christmas to you and yours. 🤗 xxx❤

 
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Thanks for the well wishes everyone. It makes me feel good!

Some updates:

-My renovation is almost done. We’re probably 2-3 weeks away. The drywall went up and got plastered yesterday. Big steps remaining are interior doors and trim, tiling, hardwoods, and painting. My builder has been awesome.  My wife is getting lots of bathroom furnishings and art for Christmas

-It’ll really be done just in time. I really can’t stand or walk without help anymore.  I’m looking forward to one floor living  

-Since I’m in a wheelchair permanently, we now have a wheelchair van, which is great.  I don’t go out much, but get to kids’ games every weekend, and have started going out every couple weeks to watch Celtics games with some buddies. I literally nurse a single coors light the entire time, but it’s still a blast.  

-It’s become too dangerous for me to be home alone, and I didn’t want to impose too much on my friends, so we’re having a home care aide come 3 days a week. He helps me with showering, dressing, bathroom, and food. Frankly it sucks to be so helpless and exposed all the time, but it saves my wife a lot of work and worry, so it’s worth it. He doesn’t have to wipe my ### yet, but that’ll be coming soon. That’ll be so emasculating, and a horrible milestone of loss of independence, but it’s inevitable if I want to keep living. Which, so far, I usually do.  

-Getting the home care should help my wife and I get our normal relationship back, but it’s honestly tough. I don’t want to really get into it here, but it’s been tremendously challenging to stay positive with each other. I’m just a lot of work nowadays, with not a lot of reward.    
 

-Last thing for now: the clinical trial I was in, and continue with still, is called Centaur. Last week the initial results were released, and it appears to work!  People on the drug had slower progression than those on placebo. Now, there’s still reason for restraint. I don’t know if I was on drug or placebo during the active trial, though I have now been on active drug for a couple months. If I was on the drug the whole time, then it either doesn’t work for me, or I’m already getting the benefit, but still progressing steadily. If I was on placebo, then maybe the drug can slow me down more. As I’ve mentioned before, one of the worst things about this horrible disease is that I never know if I’m progressing quickly or slowly. I never know if I feel bad that day because I’m tired or because I’ve permanently lost function. And, as relates to this drug, I don’t know if it can help, or if it’s already helping all it can. Downer of an ending, I know. 

-Bonus positive ending because I feel bad about the previous paragraph: despite all the difficulties, I and my family still have a ton of positivity and love in our lives. Tonight we had a family dinner together and absolutely laughed our asses off. My 16 year old then went out, but the rest of us are now snuggled up and cozy, watching Arthur Christmas. This stupid disease isn’t beating us yet, and I’m pretty sure we all appreciate what we have a lot more.
 

Happy holidays and continued love everyone

-randall 

 
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randall146 said:
Thanks for the well wishes everyone. It makes me feel good!

Some updates:

-My renovation is almost done. We’re probably 2-3 weeks away. The drywall went up and got plastered yesterday. Big steps remaining are interior doors and trim, tiling, hardwoods, and painting. My builder has been awesome.  My wife is getting lots of bathroom furnishings and art for Christmas

-It’ll really be done just in time. I really can’t stand or walk without help anymore.  I’m looking forward to one floor living  

-Since I’m in a wheelchair permanently, we now have a wheelchair van, which is great.  I don’t go out much, but get to kids’ games every weekend, and have started going out every couple weeks to watch Celtics games with some buddies. I literally nurse a single coors light the entire time, but it’s still a blast.  

-It’s become too dangerous for me to be home alone, and I didn’t want to impose too much on my friends, so we’re having a home care aide come 3 days a week. He helps me with showering, dressing, bathroom, and food. Frankly it sucks to be so helpless and exposed all the time, but it saves my wife a lot of work and worry, so it’s worth it. He doesn’t have to wipe my ### yet, but that’ll be coming soon. That’ll be so emasculating, and a horrible milestone of loss of independence, but it’s inevitable if I want to keep living. Which, so far, I usually do.  

-Getting the home care should help my wife and I get our normal relationship back, but it’s honestly tough. I don’t want to really get into it here, but it’s been tremendously challenging to stay positive with each other. I’m just a lot of work nowadays, with not a lot of reward.    
 

-Last thing for now: the clinical trial I was in, and continue with still, is called Centaur. Last week the initial results were released, and it appears to work!  People on the drug had slower progression than those on placebo. Now, there’s still reason for restraint. I don’t know if I was on drug or placebo during the active trial, though I have now been on active drug for a couple months. If I was on the drug the whole time, then it either doesn’t work for me, or I’m already getting the benefit, but still progressing steadily. If I was on placebo, then maybe the drug can slow me down more. As I’ve mentioned before, one of the worst things about this horrible disease is that I never know if I’m progressing quickly or slowly. I never know if I feel bad that day because I’m tired or because I’ve permanently lost function. And, as relates to this drug, I don’t know if it can help, or if it’s already helping all it can. Downer of an ending, I know. 

-Bonus positive ending because I feel bad about the previous paragraph: despite all the difficulties, I and my family still have a ton of positivity and love in our lives. Tonight we had a family dinner together and absolutely laughed our asses off. My 16 year old then went out, but the rest of us are now snuggled up and cozy, watching Arthur Christmas. This stupid disease isn’t beating us yet, and I’m pretty sure we all appreciate what we have a lot more.
 

Happy holidays and continued love everyone

-randall 
Click to expand...
I can relate via my dad who has Mills Syndrome,  the 1 sided PLS. He has part time caregivers too and every night they put him to bed with a condom catheter since his falls are mostly in middle of the night going to the bathroom 5 x a night. He's beyond embarrased. At least we all sleep better now. 

I pray there are treatments and of course cures coming soon. Do they tell you if you got any? I'm happy you are enjoying this season and living on the 1st floor is soon. God bless. Sending lots of ❤ &🙏🏻. Xxx

 
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Randall, you are the man.  Love how positive you and your family are staying despite some of the most impossible sounding challenges I can imagine.  That's the way to do it right.  Makes me realize what a complete and total loser I am for letting nonsense at work upset me, which is some of the most trivial garbage in comparison.  Keep doing your thing--hoping in the meantime for some minor miracles in terms of progress with the medicine.

O

 
Otis said:
Randall, you are the man.  Love how positive you and your family are staying despite some of the most impossible sounding challenges I can imagine.  That's the way to do it right.  Makes me realize what a complete and total loser I am for letting nonsense at work upset me, which is some of the most trivial garbage in comparison.  Keep doing your thing--hoping in the meantime for some minor miracles in terms of progress with the medicine.

O
Click to expand...
:goodposting:

Well wishes to you and your family for the holidays, Randall  

 
Thanks for the update Randall. Merry Christmas to you and your family! 

I pray I’d have half the courage and optimism you have shown if I were In a similar situation. 

Regarding the wiping comment, have you looked into the Japanese toilets? May lessen the need. Sounds like controlled with a remote so not sure if that will be feasible for you. 
 

https://www.google.com/amp/s/slate.com/technology/2014/04/toto-washlet-s350e-the-incredible-japanese-wonder-toilet-that-will-change-your-views-on-butt-cleaning.amp

 
Randall your family could not have a better role model, you should be proud. Hope you all have a Merry Christmas, enjoy this special time with family!

 
You're amazing Randall. Thoughts and prayers for you and your family. Happy Holidays. I hope you're able to create and share a ton of great memories. 

 
I’m awed by you, randall.  You are an inspiring person. I’m not sure I could do what you are doing under the same circumstances. 

Thank you.

My family sends best wishes and thoughts to you and your family for this holiday and beyond. 

 
Judge Smails said:
Thanks for the update Randall. Merry Christmas to you and your family! 

I pray I’d have half the courage and optimism you have shown if I were In a similar situation. 

Regarding the wiping comment, have you looked into the Japanese toilets? May lessen the need. Sounds like controlled with a remote so not sure if that will be feasible for you. 
 

https://www.google.com/amp/s/slate.com/technology/2014/04/toto-washlet-s350e-the-incredible-japanese-wonder-toilet-that-will-change-your-views-on-butt-cleaning.amp
Click to expand...
Good suggestion, and we do have one of these, and it’s pretty good. The problem is my legs don’t have the strength to stand from sitting anymore. I have a device that lifts me up, but you can’t have both devices on the same toilet. 

ALS aside, I wish I had known about the bidet seat years ago. You should all get one. 
 

 
randall146 said:
Good suggestion, and we do have one of these, and it’s pretty good. The problem is my legs don’t have the strength to stand from sitting anymore. I have a device that lifts me up, but you can’t have both devices on the same toilet. 

ALS aside, I wish I had known about the bidet seat years ago. You should all get one. 
 
Click to expand...
Do you mind posting what lift you use? Is it to get up from the sofa as well? Trying to think of things that could help my dad. Thanks so much. Xxx

 
CurlyNight said:
Do you mind posting what lift you use? Is it to get up from the sofa as well? Trying to think of things that could help my dad. Thanks so much. Xxx
Click to expand...
The toilet lift doesn’t have a name on it, but looks similar to the “EZ-Access tilt toilet incline lift” on Amazon. It wouldn’t work from the couch though. 
I have an easy chair with a standup function that looks like this which may be a good option for him. It doesn’t get me to a full stand, but probably 70%. That may work for him if he’s willing to move from the couch. It would certainly help his caregivers transfer him.

Does he have enough coordination to use a pee bottle in bed instead of the condom catheter?  I’ve moved to that and sleep a lot better not having to get up 3x a night. He might feel more independent using the bottle. There are some cool no-spill options

 
randall146 said:
The toilet lift doesn’t have a name on it, but looks similar to the “EZ-Access tilt toilet incline lift” on Amazon. It wouldn’t work from the couch though. 
I have an easy chair with a standup function that looks like this which may be a good option for him. It doesn’t get me to a full stand, but probably 70%. That may work for him if he’s willing to move from the couch. It would certainly help his caregivers transfer him.

Does he have enough coordination to use a pee bottle in bed instead of the condom catheter?  I’ve moved to that and sleep a lot better not having to get up 3x a night. He might feel more independent using the bottle. There are some cool no-spill options
Click to expand...
Thanks, Randall. My dad is 1 armed and 1 legged. His left limbs are useless. So far it hasn't crossed over to PLS or ALS which are both sides affected.  I'll talk to his PT to see if these would work for him. Many blessings to you. Xxx

 
i agree with the others that you are totally inspiring and i am really pulling for you.

I have questions that I would like to ask, but feel they might be impertinent.

 
🙏🏻❤ Hoping the new year finds you  now on the first floor and the renovations are complete. Many blessings to you and yours. Xxx

 
Missed your Christmas post- thank you so much for that. Inspiring doesn't even begin to explain...

Wishing you and yours all the loves, Randall.

And if for some reason the renovation isn't done yet and you an architect to yell at somebody....I'm in. Or if you and/or the Mrs needs any advice or decision making help with the goofy stuff, I'm your huckleberry.

 
CurlyNight said:
🙏🏻❤ Hoping the new year finds you  now on the first floor and the renovations are complete. Many blessings to you and yours. Xxx
Click to expand...
Thanks!  Not quite moved in. They finished painting today.  Just a couple lighting and plumbing fixtures to go, and then finishing the hardwoods.

it can’t come quickly enough  I know I’ve said I can’t walk in the past, but I REALLY shouldn’t be walking anymore (with the walker).  Being able to get all around the house, including bed, bath, and outside deck all in my wheelchair will be awesome.

I hope you and your dad are doing well 

 
El Floppo said:
Missed your Christmas post- thank you so much for that. Inspiring doesn't even begin to explain...

Wishing you and yours all the loves, Randall.

And if for some reason the renovation isn't done yet and you an architect to yell at somebody....I'm in. Or if you and/or the Mrs needs any advice or decision making help with the goofy stuff, I'm your huckleberry.
Click to expand...
Thanks Floppo. I should have taken you up on that offer months ago, but I’m really happy (ok, mostly really happy) with how it turned out

 
TripItUp said:
Randall, as you may recall my mother passed from ALS a few years ago.

Your courage and inspiration gives me fond memories of my mother's strength.

Thank you for this thread.
Click to expand...
Apologies- I didn’t remember that. I’m so sorry but I’m glad to hear you remember her strength. I’m so afraid my kids will remember only me at my weakest. 

 
We have a caregiver at my dad's on weekdays during his waking hours. When he falls it's always been a face plant so she is there primarily for safety when my bro isn't.  

I love your attitude. I wish my dad had it. People are different in how they handle things in their lives. Keep on keep on. When I think and pray for my dad, you are in it as well. God bless you and yours. I'm excited for you to be in your new set up soon! 🙏🏻❤xxx

 
randall146 said:
Apologies- I didn’t remember that. I’m so sorry but I’m glad to hear you remember her strength. I’m so afraid my kids will remember only me at my weakest. 
Click to expand...
I'm sure they won't. You push yourself to be present in their lives. Don't assume everyone does. Sadly many push friends and family away. You are remarkable, a great example of strength. Your kids may be too young to think about stuff like this right now but I'd bet my last dollar they will.

 
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