randall's ALS diary (1 Viewer)

randall146 said:

I've been meaning to give an update and have some time, so here goes.

First, another grateful thanks to everybody here for being so supportive with words and $.  One of the most amazing things about this illness is it's opened my eyes to the goodness and generosity of my various communities - internet, defense bar, law enforcement, people I grew up with, people in my town.  It's been overwhelming, sometimes literally.

A lot has changed but a lot is still the same since my last update.  Physically, I've continued to deteriorate slowly.  I now need a cane to walk anywhere, and sometimes that's not enough.  I'm thinking of moving to a "Rollator" which is a four-wheeled walker that also has a seat when you need one.  Mentally I really don't want to move to that since in my mind those are strictly for old ladies.  But it seems inevitable.  I also walk MUCH more slowly.  I now use flexible orthodic braces too - they have a plastic sole that goes under the foam insert in my shoes, and then firm plastic bars that run up my ankle and strap around my calves.  I've only had them for a few days but they keep me more stable, keep my toes lifted so I don't trip as much, and even have a little bit of bounce to them so I use less energy walking.  The downside of the braces is it takes even longer and is more tiring to get dressed in the morning.  In fact, most things take longer.

The other physical difference is I feel my arms and hands weakening.  I drop things frequently.  Typing is becoming more difficult.  I've made a few short attempts at using voice recognition software but haven't given it enough time yet, so I'm not sure how that'll work for me.  I also plan on doing voice-recording soon so that my digital voice is still available when/if my real voice goes.

One awful thing I've been having to come to grips with is that certain things are just gone from my life.  My hobbies and favorite pass-times are watching my kids sports, playing sports, working on my aquarium, playing guitar/drums, singing, hiking, and body surfing. Other than watching my kids' sports, I will never be able to do any of those the same way again.  I can't hike.  My legs won't kick in water and I won't be able to stand in waves, so I can't body surf.  I can't hold chords or move my hands or feet quickly, so playing instruments is becoming more difficult.  My voice can't reach or hold notes that used to be no problem.  I can't carry water around to clean my aquarium the way I'd like.

Most of these things don't impact my daily activities.  On a moment to moment basis I can accept all of them and not be upset.  It is what it is.

But sometimes when I have time to reflect it creeps in that so many of the activities that make life great are just gone.  The thought that I'll never run again is simple, but sad and deep.  It sucks.

On a positive note I can say that my wife and kids continue to be amazing.  I spent a lot of this morning thinking about my 15 year old (16 on Saturday) and looking at pictures of the two of us.  I got myself pretty upset and ended up texting him a bunch of the pictures.  From class he texted back "best 1-2 combination ever."  I wrote back that I was thinking about him and how much I loved him and how proud I was.  So then he writes back "Love you too dad, many more of those pictures to be taken." 

Last week I had a bad fall in the kitchen when my dog walked under my feet.  I fell hard, hit my back on a door frame, and had the wind knocked out of me.  My 9 year old saw and was pretty upset.  As I lay there before getting up my 15 year old laid down next to me and calmly started just joking around, making both me and the 9 year old feel instantly better.  He's never seen me or my wife do anything like that - it's just instinctual, which is amazing.

I think that'll be all for now

-randall

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Tiger Fan said:

Did you ever get around to recording your voice?  If not, please do ASAP!

https://twitter.com/SteveGleason/status/1123419798900281344

Recently diagnosed with ALS, and planning to live? I would urge you to record your voice in as high quality of a situation as possible. @TeamGleason can help from that point. It is one of my best decisions & I'm seeing too many people unnecessarily using generic voices.

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randall146 said:

That’s on my agenda for next week - thanks!

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Judge Smails said:

Randall, are you sharing your journey on patientslikeme?

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Tiger Fan said:

awesome!

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The Z Machine said:

Right now I'm pulling for Brighton to stage a comeback in the second half against Manchester City.

Do it for Randall, ya seagulls!

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ConstruxBoy said:

 Not around here much anymore so just seeing this. Thoughts and prayers. Always enjoyed your thoughts in the ACC basketball threads. You were one of the classy, rational Duke fans. Certainly more classy and rational than I was as a UNC fan. 

Good luck and keep fighting and posting. I think I saw the Go Fund Me link above so I’ll visit that. 

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El Floppo said:

Thanks for the updates Randall- crazy how much I think about a random good dude from the infowebz... ... but I do- and continue to think/wish all the best for you and your family. and the hot wife.

just occurred to me- with the voice recordings... are there adjustments/apps for working a keyboard too? 

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randall146 said:

Slight delay (on my part), but Team Gleason approved funding for my voice recording today. I’ll start recording sometime this week!

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randall146 said:

Thanks Z - I feel no disappointment in a 97 point runner-up season. Liverpool appears well positioned for the next few years, and the CL final. 

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randall146 said:

Slight delay (on my part), but Team Gleason approved funding for my voice recording today. I’ll start recording sometime this week!

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randall146 said:

Thanks Contrux - there were only 2 unbearable posters in those threads, and neither was a heels fan. Everything else was shared fandom of great rivalries. 

I don’t know if you read further up, but I recently took my 16 year old on college tours of Duke, UNC, and Wake. He didn’t care for Duke or UNC, but loved Wake. 

He did spend some of my money on UNC gear though :shudder:

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randall146 said:

Getting dressed for my first court day in a wheelchair (actually an electric Scooter-type chair).  Also my first day driving the chair around the financial/court district in Providence. 

I’ve been dreading people I know professionally seeing me in the chair. I fear they’ll feel sorry for me, but also think less of me. After 20 years I’m something of a senior member/leader of the criminal defense world (in my tiny little pond) but I should only be halfway through my career. I think people are naturally going to see me as a has-been when they see me in a chair, needing extra help, extra time, etc. Everyone has heard that I’m sick, but this will be a lot of people’s first time really seeing/getting it.

However, today’s an important day to go, because it’s the day of our re-entry court program, which provides extra services and supervision to defendants re-entering society after long jail sentences. These are guys facing a ton of hurdles getting back to “normal” life (addiction, housing, employment, drivers license, old court fines, family court issues) and I think it would benefit them to see me persevering through my health issues. 

So that motivation is helping me overcome my fear of people seeing me out there disabled. Once I get through that first day, I figure I’ll regain my confidence and be ok with it. 

Also, it’s my job and I need the money. 

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Joe Bryant said:

You go Buddy. 

One thing I've learned is heart trumps talent. Especially physical talent. Or ability. And that holds true for the entire spectrum of physical ability.

We've all seen it where the scrappy guy with less physical ability outworks and out hustles the more physically talented guy. I'm not trying to paint a happy face on this. But I want you to know my guess is it'll be human nature (and I'm pretty good at predicting human nature) that while you think these folks may be seeing you as "less than", the reality is they're going to be seeing you as badass. You're showing them you're fighting. You're showing them you're overcoming.

And for the defendents getting back to society who very likely feel the deck is stacked against them and it's "not fair", what an incredible image for them to see in you. Wow.

You may not even realize it but you're delivering a huge message just being there and doing your job. You're showing them and living out an example of your words. Your message is powerful. Rock on Buddy.

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ProstheticRGK said:

I don't think i can express this anymore eloquently than Joe. I've been reading this thread since the beginning and am impressed with your grace and humanity and courage and strength.

i'll share something with you that I haven't been wanting to share on the internet, because I hope maybe it can be as inspirational to you as it was to me and so many others. My wife just passed yesterday, after a 14 year battle against breast cancer. The last few years, the cancer had spread to her brain. She fought like a warrior. She never gave up, remained a devoted mother to our boys and was a constant inspiration to everyone around her, because she never played the victim.

I thought of you and your family and this thread often over the last few months. She lost her ability to walk without a walker. She stopped being able to drive. Eventually, she couldn't get around without a wheelchair. She had to have me help her onto the toilet. Towards the end, she couldn't even feed herself, and had to wear adult diapers. She had her moments with me when she broke down and got frustrated and angry- she wouldn't have been human without those times. But, she always maintained an otherworldly grace and strength, even in the face of the greatest indignities and the betrayal of her own body. She fought hard until it was time to rest.

I'm sharing this with you, specifically, because you are that inspirational to everyone here. You seem otherworldly and possessed of a grace and strength we can't even imagine in your courage. Clearly, there is a lot of fight left in you, brother. And you are definitely up for it. I offer my condolences to your family, and my gratitude that people like you are strong enough to share your story, because it reminds all of us of what it means to be human. Be gentle with yourself and those you love for your humanity and frustration and doubt and pain in the coming times. And continue to be strong and inspirational. My heartfelt prayers and love for you and yours. 

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ProstheticRGK said:

I don't think i can express this anymore eloquently than Joe. I've been reading this thread since the beginning and am impressed with your grace and humanity and courage and strength.

i'll share something with you that I haven't been wanting to share on the internet, because I hope maybe it can be as inspirational to you as it was to me and so many others. My wife just passed yesterday, after a 14 year battle against breast cancer. The last few years, the cancer had spread to her brain. She fought like a warrior. She never gave up, remained a devoted mother to our boys and was a constant inspiration to everyone around her, because she never played the victim.

I thought of you and your family and this thread often over the last few months. She lost her ability to walk without a walker. She stopped being able to drive. Eventually, she couldn't get around without a wheelchair. She had to have me help her onto the toilet. Towards the end, she couldn't even feed herself, and had to wear adult diapers. She had her moments with me when she broke down and got frustrated and angry- she wouldn't have been human without those times. But, she always maintained an otherworldly grace and strength, even in the face of the greatest indignities and the betrayal of her own body. She fought hard until it was time to rest.

I'm sharing this with you, specifically, because you are that inspirational to everyone here. You seem otherworldly and possessed of a grace and strength we can't even imagine in your courage. Clearly, there is a lot of fight left in you, brother. And you are definitely up for it. I offer my condolences to your family, and my gratitude that people like you are strong enough to share your story, because it reminds all of us of what it means to be human. Be gentle with yourself and those you love for your humanity and frustration and doubt and pain in the coming times. And continue to be strong and inspirational. My heartfelt prayers and love for you and yours. 

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ProstheticRGK said:

I don't think i can express this anymore eloquently than Joe. I've been reading this thread since the beginning and am impressed with your grace and humanity and courage and strength.

i'll share something with you that I haven't been wanting to share on the internet, because I hope maybe it can be as inspirational to you as it was to me and so many others. My wife just passed yesterday, after a 14 year battle against breast cancer. The last few years, the cancer had spread to her brain. She fought like a warrior. She never gave up, remained a devoted mother to our boys and was a constant inspiration to everyone around her, because she never played the victim.

I thought of you and your family and this thread often over the last few months. She lost her ability to walk without a walker. She stopped being able to drive. Eventually, she couldn't get around without a wheelchair. She had to have me help her onto the toilet. Towards the end, she couldn't even feed herself, and had to wear adult diapers. She had her moments with me when she broke down and got frustrated and angry- she wouldn't have been human without those times. But, she always maintained an otherworldly grace and strength, even in the face of the greatest indignities and the betrayal of her own body. She fought hard until it was time to rest.

I'm sharing this with you, specifically, because you are that inspirational to everyone here. You seem otherworldly and possessed of a grace and strength we can't even imagine in your courage. Clearly, there is a lot of fight left in you, brother. And you are definitely up for it. I offer my condolences to your family, and my gratitude that people like you are strong enough to share your story, because it reminds all of us of what it means to be human. Be gentle with yourself and those you love for your humanity and frustration and doubt and pain in the coming times. And continue to be strong and inspirational. My heartfelt prayers and love for you and yours. 

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randall146 said:

My god - I’m so very sorry for your loss and all your family went through. Thank you for sharing it.

I’m sad for you and your boys but hearing all you went through also makes me feel stronger to go through my own similar experience.

And I take solace in the fact that your experience with your wife seems to have made your relationship that much stronger.

Illness is an awful thing but also an opportunity to forgive our faults and imperfections and just be human with one another. 

Anyhow, I don’t know what else to say other than I’m so sorry for your loss and thankful for your sharing it. 

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ProstheticRGK said:

I don't think i can express this anymore eloquently than Joe. I've been reading this thread since the beginning and am impressed with your grace and humanity and courage and strength.

i'll share something with you that I haven't been wanting to share on the internet, because I hope maybe it can be as inspirational to you as it was to me and so many others. My wife just passed yesterday, after a 14 year battle against breast cancer. The last few years, the cancer had spread to her brain. She fought like a warrior. She never gave up, remained a devoted mother to our boys and was a constant inspiration to everyone around her, because she never played the victim.

I thought of you and your family and this thread often over the last few months. She lost her ability to walk without a walker. She stopped being able to drive. Eventually, she couldn't get around without a wheelchair. She had to have me help her onto the toilet. Towards the end, she couldn't even feed herself, and had to wear adult diapers. She had her moments with me when she broke down and got frustrated and angry- she wouldn't have been human without those times. But, she always maintained an otherworldly grace and strength, even in the face of the greatest indignities and the betrayal of her own body. She fought hard until it was time to rest.

I'm sharing this with you, specifically, because you are that inspirational to everyone here. You seem otherworldly and possessed of a grace and strength we can't even imagine in your courage. Clearly, there is a lot of fight left in you, brother. And you are definitely up for it. I offer my condolences to your family, and my gratitude that people like you are strong enough to share your story, because it reminds all of us of what it means to be human. Be gentle with yourself and those you love for your humanity and frustration and doubt and pain in the coming times. And continue to be strong and inspirational. My heartfelt prayers and love for you and yours. 

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randall146 said:

Quick check in to observe that my current cold/allergies are the worst of my life. Not because it’s particularly bad on its own, but ALS has amped up all my reflexes, most notably my gag reflex.

On an ordinary day I dry heave or even throw-up with very little trigger. One trigger is not being able to breath. Now that I’m stuffed up, I can’t blow my nose without a body- jarring gag reflex and coughing spree. If I’m standing, I come very close to falling. 

Plus I have no energy usually, and now I’m at man-cold levels

Super fun times with ALS

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randall146 said:

Quick check in to observe that my current cold/allergies are the worst of my life. Not because it’s particularly bad on its own, but ALS has amped up all my reflexes, most notably my gag reflex.

On an ordinary day I dry heave or even throw-up with very little trigger. One trigger is not being able to breath. Now that I’m stuffed up, I can’t blow my nose without a body- jarring gag reflex and coughing spree. If I’m standing, I come very close to falling. 

Plus I have no energy usually, and now I’m at man-cold levels

Super fun times with ALS

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randall146 said:

Quick check in to observe that my current cold/allergies are the worst of my life. Not because it’s particularly bad on its own, but ALS has amped up all my reflexes, most notably my gag reflex.

On an ordinary day I dry heave or even throw-up with very little trigger. One trigger is not being able to breath. Now that I’m stuffed up, I can’t blow my nose without a body- jarring gag reflex and coughing spree. If I’m standing, I come very close to falling. 

Plus I have no energy usually, and now I’m at man-cold levels

Super fun times with ALS

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