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randall's ALS diary (1 Viewer)

Hope you're doing well and would love to know your opinion of the Duke coaching change? Were you happy with it "staying in the family?" To be honest, I'm not happy that the Heels did that. Guess we'll see. 

Thanks and take care. 

 
Thinking of you and wishing you a Happy Father's Day - I lurk on here from time and time and you always inspire me to work harder at being a better Dad - you're awesome!

 
Happy to see you are still posting in here.  I have been thinking about you as usual, and I am curious how everything is going.   Hope you are as ok as possible. 

 
Would be great to hear an update Randall when you have a chance, including on how well you think this new drug may be working. Be well brother. O

 
Hey everyone, just a quick note about my condition and why I stopped updating. 

I'm still hanging in there, though I'm nearing total functional paralysis. I'm in bed all day most days, except for the commode and a shower. I'm on a bipap except for eating and drinking, though I can't eat or drink much except for shakes , soups, ice cream and pudding. 

I'd like to say more about the hardships, the guilt, my relationships with my wife and kids and dad, and the decisions I'm working through. But my family are all smart enough to find my account if they haven't already, and I don't want to make a mistake or joke, or an exaggeration that I can't explain after I'm gone. 

So I won't be posting much or at all in this thread anymore. I thought it would be a good way for me to work through this and count my blessings. and it did for a couple years. But at this point I mostly have hardships, and I don't want Internet posts that make my kids think anything other than how much I love them and appreciate how much they helped me through this. 

 
randall146 said:
Hey everyone, just a quick note about my condition and why I stopped updating. 

I'm still hanging in there, though I'm nearing total functional paralysis. I'm in bed all day most days, except for the commode and a shower. I'm on a bipap except for eating and drinking, though I can't eat or drink much except for shakes , soups, ice cream and pudding. 

I'd like to say more about the hardships, the guilt, my relationships with my wife and kids and dad, and the decisions I'm working through. But my family are all smart enough to find my account if they haven't already, and I don't want to make a mistake or joke, or an exaggeration that I can't explain after I'm gone. 

So I won't be posting much or at all in this thread anymore. I thought it would be a good way for me to work through this and count my blessings. and it did for a couple years. But at this point I mostly have hardships, and I don't want Internet posts that make my kids think anything other than how much I love them and appreciate how much they helped me through this. 
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@randall146 - please know what an inspiration you have been to many of us.  I can say with a lot of confidence that I wouldn’t handle things the same with the grace and dignity that you have.  While your updates will be missed it’s completely understandable.

While I’m not sure I can openly root for Liverpool or Duke, I will secretly being rooting them on for you.

Much love GB.  

 
randall146 said:
Hey everyone, just a quick note about my condition and why I stopped updating. 

I'm still hanging in there, though I'm nearing total functional paralysis. I'm in bed all day most days, except for the commode and a shower. I'm on a bipap except for eating and drinking, though I can't eat or drink much except for shakes , soups, ice cream and pudding. 

I'd like to say more about the hardships, the guilt, my relationships with my wife and kids and dad, and the decisions I'm working through. But my family are all smart enough to find my account if they haven't already, and I don't want to make a mistake or joke, or an exaggeration that I can't explain after I'm gone. 

So I won't be posting much or at all in this thread anymore. I thought it would be a good way for me to work through this and count my blessings. and it did for a couple years. But at this point I mostly have hardships, and I don't want Internet posts that make my kids think anything other than how much I love them and appreciate how much they helped me through this. 
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Sending you and your family peace and love. 

 
randall146 said:
Hey everyone, just a quick note about my condition and why I stopped updating. 

I'm still hanging in there, though I'm nearing total functional paralysis. I'm in bed all day most days, except for the commode and a shower. I'm on a bipap except for eating and drinking, though I can't eat or drink much except for shakes , soups, ice cream and pudding. 

I'd like to say more about the hardships, the guilt, my relationships with my wife and kids and dad, and the decisions I'm working through. But my family are all smart enough to find my account if they haven't already, and I don't want to make a mistake or joke, or an exaggeration that I can't explain after I'm gone. 

So I won't be posting much or at all in this thread anymore. I thought it would be a good way for me to work through this and count my blessings. and it did for a couple years. But at this point I mostly have hardships, and I don't want Internet posts that make my kids think anything other than how much I love them and appreciate how much they helped me through this. 
Click to expand...


Yeah, please don't feel that you owe us numbskulls anything.  

It's a great credit that you're still trying to make this easier on your family.  But I also hope you cut yourself some slack.  Though it's no comparison, my Mom has had severe MS for 30 years.  It has definitely, at times, been frustrating for her and for us when we've had to take care of her or try to make sure she's being taken care of.  We've all let each other down dozens of times.  But it's never made me doubt that she loves me, and I hope she feels the same.  There's no perfect way to handle this.  And you're allowed to be human.  As is your family.  They understand that there will be times when you're just frustrated.  Any human would be.  

 
As someone who lost family to this horrible disease know your family is in my thoughts and prayers. You are an inspiration to many.

 
I don’t know what to say but I wish and hope you still have a few more good days and warm family moments. You’re a good man and best wishes. 

 
randall146 said:
Hey everyone, just a quick note about my condition and why I stopped updating. 

I'm still hanging in there, though I'm nearing total functional paralysis. I'm in bed all day most days, except for the commode and a shower. I'm on a bipap except for eating and drinking, though I can't eat or drink much except for shakes , soups, ice cream and pudding. 

I'd like to say more about the hardships, the guilt, my relationships with my wife and kids and dad, and the decisions I'm working through. But my family are all smart enough to find my account if they haven't already, and I don't want to make a mistake or joke, or an exaggeration that I can't explain after I'm gone. 

So I won't be posting much or at all in this thread anymore. I thought it would be a good way for me to work through this and count my blessings. and it did for a couple years. But at this point I mostly have hardships, and I don't want Internet posts that make my kids think anything other than how much I love them and appreciate how much they helped me through this. 
Click to expand...
I have been wondering how you have been.  If your wife or kids ever have any questions about anything, please send them my way with a DM, especially if they see this later.  I'll always have your back, and I think I could give them peace better than anyone here.  Feel free to give me an Eff You lol, but I have seen you here for a long time. I also hear/see a lot locally, and keep quiet tabs even though I never say.  I am always watching, but keep quiet out of respect and sadness. My wife was doing the same in town.  Anyway, we Ilove you guys, and are praying for you and your family.  I don't know what else to say.  

YNWA 

 
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Ramsay Hunt Experience said:
Yeah, please don't feel that you owe us numbskulls anything.  

It's a great credit that you're still trying to make this easier on your family.  But I also hope you cut yourself some slack.  Though it's no comparison, my Mom has had severe MS for 30 years.  It has definitely, at times, been frustrating for her and for us when we've had to take care of her or try to make sure she's being taken care of.  We've all let each other down dozens of times.  But it's never made me doubt that she loves me, and I hope she feels the same.  There's no perfect way to handle this.  And you're allowed to be human.  As is your family.  They understand that there will be times when you're just frustrated.  Any human would be.  
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Thanks for this. Definitely some perspective I need. 

 
PIK95 said:
I have been wondering how you have been.  If your wife or kids ever have any questions about anything, please send them my way with a DM, especially if they see this later.  I'll always have your back, and I think I could give them peace better than anyone here.  Feel free to give me an Eff You lol, but I have seen you here for a long time. I also hear/see a lot locally, and keep quiet tabs even though I never say.  I am always watching, but keep quiet out of respect and sadness. My wife was doing the same in town.  Anyway, we Ilove you guys, and are praying for you and your family.  I don't know what else to say.  

YNWA 
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Thanks brother, although this sounds like the end of Monsters Inc. 

 
randall146 said:
Crap I just realized I'm gonna have Michael Bolton on my island..
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All the best to you, here and hereafter. 

I may be the only person to chuckle when the name Michael Bolton comes up, but thanks to you its a reality. 

For context, we did a desert island music draft a long time ago of Billboard #1 songs. A few of us went all the way until every song was drafted. This is the moment randall realized he would have the last pick and it was When a Man Loves a Woman by Michael Bolton. 

 
als is a rough go, all power and support to those sharing, remember the mind and love is there, and eternal, no act of love is too small, Peace from an als family...D.

 
Wishing you all the best GB!  I can also appreciate that perspective you wrote.  

What a nasty condition...  I work in biotech and I do think we'll get this one eventually (ALS), but it can't come soon enough.  

Take care...

 
randall, 

Thank you for including us in part of your journey.  Learning about ALS through your eyes has been enlightening, heartbreaking, and most of all inspiring.

I do hope you cut yourself some slack as Scooby mentioned. It's ok to express that it ####### sucks.

If this is the last page in your diary, I want you to know that you are indeed the cat's meow, and I will never forget you. Peace and love to you and your family.  :heart:

 
randall146, 

I never really frequented this thread as I'd lost a formerly close collegiate friend to ALS, and I had a feeling how tough this would be. I was scared because I thought that through your journey, I would enter a potentiality of reliving her life as it wound down, something to which I had not been privy. So I lurked and saw the bumps, but never really commented like others. It was too painful. 

If you check this, please know that you're in my thoughts and prayers and always have been. It might be weird to speak up now, but any comfort I could possibly give is worth looking foolish. You've been there all along, every time I see the thread bumped or just think of the sufferers of this disease through thoughts of my friend, which hit me harder than I thought imaginable.

My best goes out to you and your family. I hope when they read this thread that they know there were people online that cared, deeply, and that they always wanted the right things for you. I hope you are at peace. 

Bless you, 

RA 

 
Last edited by a moderator:
randall146 said:
Hey everyone, just a quick note about my condition and why I stopped updating. 

I'm still hanging in there, though I'm nearing total functional paralysis. I'm in bed all day most days, except for the commode and a shower. I'm on a bipap except for eating and drinking, though I can't eat or drink much except for shakes , soups, ice cream and pudding. 

I'd like to say more about the hardships, the guilt, my relationships with my wife and kids and dad, and the decisions I'm working through. But my family are all smart enough to find my account if they haven't already, and I don't want to make a mistake or joke, or an exaggeration that I can't explain after I'm gone. 

So I won't be posting much or at all in this thread anymore. I thought it would be a good way for me to work through this and count my blessings. and it did for a couple years. But at this point I mostly have hardships, and I don't want Internet posts that make my kids think anything other than how much I love them and appreciate how much they helped me through this. 
Click to expand...


Thank you @randall146  The grace and dignity which you've carried yourself through all this is an inspiration. 

Mad respect and much love for you. 

J

 
randall146 said:
Hey everyone, just a quick note about my condition and why I stopped updating. 

I'm still hanging in there, though I'm nearing total functional paralysis. I'm in bed all day most days, except for the commode and a shower. I'm on a bipap except for eating and drinking, though I can't eat or drink much except for shakes , soups, ice cream and pudding. 

I'd like to say more about the hardships, the guilt, my relationships with my wife and kids and dad, and the decisions I'm working through. But my family are all smart enough to find my account if they haven't already, and I don't want to make a mistake or joke, or an exaggeration that I can't explain after I'm gone. 

So I won't be posting much or at all in this thread anymore. I thought it would be a good way for me to work through this and count my blessings. and it did for a couple years. But at this point I mostly have hardships, and I don't want Internet posts that make my kids think anything other than how much I love them and appreciate how much they helped me through this. 
Click to expand...
Much love your way buddy. I've enjoyed your posting since the Rotojunkie days and always respected your candor. 

I'm sorry to hear about the state of things, but while I hate you're suffering, I'm very happy you've had the opportunity to reflect and attempt to right any matters. That's a blessing many don't get. 

Cheers :banned:  

 
randall146 said:
Hey everyone, just a quick note about my condition and why I stopped updating. 

I'm still hanging in there, though I'm nearing total functional paralysis. I'm in bed all day most days, except for the commode and a shower. I'm on a bipap except for eating and drinking, though I can't eat or drink much except for shakes , soups, ice cream and pudding. 

I'd like to say more about the hardships, the guilt, my relationships with my wife and kids and dad, and the decisions I'm working through. But my family are all smart enough to find my account if they haven't already, and I don't want to make a mistake or joke, or an exaggeration that I can't explain after I'm gone. 

So I won't be posting much or at all in this thread anymore. I thought it would be a good way for me to work through this and count my blessings. and it did for a couple years. But at this point I mostly have hardships, and I don't want Internet posts that make my kids think anything other than how much I love them and appreciate how much they helped me through this. 
Click to expand...
I'm so very sorry this is happening to you and your family. As you know, my dad has PLS but seems to be going to ALS slowly. It's extremely difficult for all involved. What to say, how to say it. What to do, not to do. Everything felt like walking a thin line until now where he too needs assistance with everything and prefers lying down over the recliner or wheelchair. It has gone from trying PT/OT to comfort care with lots of love. 

I wish you much peace and comfort. You have been a great example of handling this with dignity and grace. And always remember how much all of us here admire and love you. Xxx

 
Thank you for sharing your experiences here- and for just being a remarkable and standup i-friend on this board. It's been astonishing seeing the grace, humility and humor with which you've handled this... really awe-inspiring for me. You're a great dude, regardless of this crap situation you're in... the board is lucky to have you. 

All the love, respect and best wishes for continued happiness, grace and peace to you and your family from the Floppo household in the Lower East Side.

 
I don't have anything to add that others haven't said much more eloquently.  You're a great guy, Randall, and this community is better off for having had you as part of it.

 
The way you carry yourself you are the ultimate role model for your family and someone we all look up to. Be proud and if there’s anything we can help you and your family with please let us. You have a big family here that cares about you friend.  :hifive:

 
I was asking my buddy today if he heard from you recently.  I hadn't seen you online.  

I can't get past the providence journal pay wall, but it's in the paper that Olin passed today everyone.  Just saw it.

So crazy you were on my mind today ORand.  You will be missed.

 
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