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randall146

randall's ALS diary

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Randal you are in my thoughts. Like I said my cousin suffered from ALS and we were very close.  While this was long ago so the technology was not where it is now

Just know a small silver lining is you keep your mental faculties for the most part.  Like you said the technology is there.

My cousin LOVED playing poker and even though he couldn't move etc - he'd still be sharp as a tack.

I don't know if it helps at all, just trying to give you some peace

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Late here as well. Echoing others, sending warm thoughts and prayers. You sound like a very strong man and I wish you and your family the very best!!

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I’m at the hospital getting my first infusion treatment of Radicava . It’ll take an hour so I figured it was a good time for an update. 

FYI Radicava is the 2nd of the only 2 FDA approved drugs to treat ALS. There are mixed opinions on it but some studies show that it can slow down progression 10-20% in people like me - relatively young and in the early stages. So that converts on average to an extra year of life. I’m not sure if the theoretical extra year comes now, at the end, or gradually over the course of things. 

Things are still a whirlwind of good, bad, and ugly. My wife is in a big hurry to get our future finances straightened out so that we can figure out if we can add on an easy access 1st floor master suite to our house. An addition was always in the plans but this is much sooner than we figured and now it needs to be 1st floor and handicapped accessible. Plus paying for it is worrisome given my unclear work situation

Based in part on encouragement from you guys, I’m working with some close friends to plan a Florida or Caribbean trip in Jan or Feb. it’s complicated by the fact that I have to get these daily infusions, and may be entering a clinical trial in Boston as soon as in a few weeks

The good news is that my kids seem to be adjusting well. My 15 year old is opening up and asking more questions, which is great. My 12 year old seems better too. My 9 year old is oblivious, which is fine with me. 

I think over the next few weeks the utter shock will be wearing off and we’ll be entering a much more pragmatic period. If we can afford an addition it can include a small office and I think I can manage approval to mostly work from home. That could extend my income for hopefully years, so I suppose it pays for itself in a year or two, assuming survival. 

That’s all for now, and I think that’s good. I’m definitely transitioning from “learning terminal diagnosis” to “living with debilitating illness”

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On 12/30/2018 at 8:47 AM, PIK95 said:

I won't be on this site anymore.  I sent you my cell, text me if you ever want to talk.  Liverpool, eh?

Thanks bro - sorry to see you go, and thanks for the offers of support

My 15 year old and I went up to Murphy’s in Providence to watch the Arsenal Liverpool game the other day with the RI Liverpool club. Good times

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On 12/31/2018 at 3:50 PM, belljr said:

Randal you are in my thoughts. Like I said my cousin suffered from ALS and we were very close.  While this was long ago so the technology was not where it is now

Just know a small silver lining is you keep your mental faculties for the most part.  Like you said the technology is there.

My cousin LOVED playing poker and even though he couldn't move etc - he'd still be sharp as a tack.

I don't know if it helps at all, just trying to give you some peace

Yeah I’m not sure if that’s a bug or feature to this disease. Probably a bit of both

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2 hours ago, randall146 said:

Things are still a whirlwind of good, bad, and ugly. My wife is in a big hurry to get our future finances straightened out so that we can figure out if we can add on an easy access 1st floor master suite to our house. An addition was always in the plans but this is much sooner than we figured and now it needs to be 1st floor and handicapped accessible. Plus paying for it is worrisome given my unclear work situation

Any thought of downsizing to a house that is already wheelchair-friendly?

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47 minutes ago, [scooter] said:

Any thought of downsizing to a house that is already wheelchair-friendly?

I’ve considered that but don’t want to uproot the kids or squish us all together even more. 

We’d have a lot of work to do to get our house in selling condition anyway, and I’m in no shape to do it

Edited by randall146

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I hope the treatment helps.  Here is a partial list of things that helped when my wife was going through a serious health issue.

1.  Try and find someone to be the family personal assistant.  Someone you can say "I need X" and they find someone to get it done.  Also get a back up to this person.  I didn't have the time to listen to someone say that they would love to help, but couldn't because of...  and how terrible they felt for not being able to help.  All that did was to delay me getting what I needed, and keep me from concentrating on taking care of my wife.  I had my sister do this for me and it relieved a lot of the stress.

2.  Make sure you have all the legal stuff updated.  General POA, medical directives etc.

3.  Passwords to computers, phones, websites that have important information.

4.  You may want to contact your disability insurance company, and also apply for social security.   

5. Really, get the personal assistant.

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On 12/26/2018 at 9:23 PM, randall146 said:

I like that idea, but it also seems eerie to me. I’ve also considered taping messages for my kids at various stages of life - learning to drive, high school graduation, college graduation, real job, kids - but I don’t know if that makes things worse, or even if it’s presumptuous to assume I’ll “know”, for example, my currently 9 year old when he’s graduating college and I may have been gone for years already. 

One cool tool they do have now is recording you’re voice, while you still have it, to create a word bank for after you lose your voice. Then software can speak for me through a keyboard, or eventually eye recognition technology. That’s so much better than a random computer voice speaking for me. 

It'd be hilarious if I could get Morgan Freeman to do my word bank so it was always him telling my kids what to do. 

Sorry to hear your diagnosis.  Thanks for sharing.  Prayers for you and your family.  

My half-brother-in-law died 6 months ago from ALS.  His family did the bolded.  It was really cool.  

Their local ALS chapter was a big help for them and let them use a special bed and motorized chair.  Look into that when the time comes.  

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@randall146 I wish you the best. I can't imagine what I can do for you but I'm a pm away brother. :brohug:

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26 minutes ago, CurlyNight said:

Thinking of you with much ❤&🙏🏻.

been thinking of randall too- but not maybe the double squares. wishing him and family all the best. 

randall- if you need an architect to look over stuff for you in regards to the addition, pm davinci. 

 

 

 

 

or me. any time- seriously.

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Just now seeing all of this.  Honestly, for a long while I avoided such threads and preferred to keep the personal distance from this place.  Sort of an online distraction rather than any personal connection.  But as I’ve posted stuff over the past few years after losing my parents...it’s been good to read the personal experiences of others that chime in and the kind thoughts and words.

I wish you and your family the best as you go through this and the treatmemwnts and thank you for sharing your thoughts on here. 

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On 1/2/2019 at 12:03 PM, randall146 said:

I’ve considered that but don’t want to uproot the kids or squish us all together even more. 

We’d have a lot of work to do to get our house in selling condition anyway, and I’m in no shape to do it

I'm sorry I missed this post.  There are organizations that give grants to people trying to modify their homes to make them disability accessible.  

Here's a list I found, I don't know that it's comprehensive but it's a start.  Might be local things in your area.

https://www.homeadvisor.com/r/grants-for-home-modification/

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Thanks Henry - I don’t think I’ll qualify for any of those but it’s worth a look. My friends are putting together a GoFundMe for me which I’m hopeful will pay for most renovation costs, and I have hooked up with a great organization that provides new or gently used equipment. 

Heres a brief update: I’m going back to the Mass General ALS clinic tomorrow for the first time since my diagnosis confirmation. I’m still feeling ok but have noticed some spreading of symptoms over the past few weeks. I’ve had a few bad calls, and strained my elbow and shoulder during one of them.  My hands are shaking more and I occasionally drop things.  My walking is moderately worse.

As far as my clinic visit, my wife and I are making a nice day of it in Boston. She got us a nice hotel room with a saltwater pool, which is so thoughtful. Looking forward to that. 

My friends are really stepping up with the help. This weekend more than 10 of them came and painted, cleaned out the basement, and did a bunch of other stuff. They’re planning on doing that again in a few weeks. 

We’ve met with contractors and a designer to plan out a first floor master suite addition. 

And, the GoFundMe. They put that together without my involvement and I know it’s a good idea and people want to help, but there’s definitely a part of me that is embarrassed to be asking. And, my wife tried to show it to me and I saw a photo of me and my wife and sons, and read around half a sentence talking about myself and just started bawling. I’ve seen those kinds of charity pleas a million times and it’s really upsetting to see yourself in one. It brought home the reality of how serious this all is, and that my family will lose me at some point. 

But, aside from that moment and an occasional breakdown, I’m surprisingly optimistic. I’d say 8 out of 10 days I just feel positive, which is very much out of character for me. This disease has definitely started to change my perspective on things. 

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5 hours ago, El Floppo said:

been thinking of randall too- but not maybe the double squares. wishing him and family all the best. 

randall- if you need an architect to look over stuff for you in regards to the addition, pm davinci. 

 

 

 

 

or me. any time- seriously.

Thanks - I may take you up on that

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1 hour ago, AAABatteries said:

I think I speak for everyone when I say please share the GoFundMe if you are so inclined - even if that is through PMs.

Agree, please share. 

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I'm 99.9% sure I found the right campaign on GoFundMe. If you read the description it would seem somewhat unfathomable that this isn't our randall146...

https://www.gofundme.com/thompson-family-fund-eg

Either way I just went ahead and made the first donation. I know what this place is capable of.

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22 minutes ago, Mr Anonymous said:

I'm 99.9% sure I found the right campaign on GoFundMe. If you read the description it would seem somewhat unfathomable that this isn't our randall146...

https://www.gofundme.com/thompson-family-fund-eg

Either way I just went ahead and made the first donation. I know what this place is capable of.

I think you're right. Donation # 2 made.

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6 hours ago, Mr Anonymous said:

I'm 99.9% sure I found the right campaign on GoFundMe. If you read the description it would seem somewhat unfathomable that this isn't our randall146...

https://www.gofundme.com/thompson-family-fund-eg

Either way I just went ahead and made the first donation. I know what this place is capable of.

That is awesome,how did you do that? Great work, I’m on it when I get to the office. Let’s fill this thing up!

 

Randall if it’s a different one point us in the right direction buddy. 😁

Edited by GoBirds

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4 hours ago, GoBirds said:

That is awesome,how did you do that? Great work, I’m on it when I get to the office. Let’s fill this thing up!

 

Randall if it’s a different one point us in the right direction buddy. 😁

I went through every Rhode Island GoFundme campaign. And while there are many RI campaigns, there aren't many that were started in the past week with a father of 3 boys, with a picture showing a father, his wife, those 3 boys, a man active in his community, who is a Public Defender, was recently diagnosed with ALS, and is getting treatment at Mass General. As a matter of fact, there's only one page like that.

https://www.gofundme.com/thompson-family-fund-eg

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6 hours ago, GoBirds said:

That is awesome,how did you do that? Great work, I’m on it when I get to the office. Let’s fill this thing up!

 

Randall if it’s a different one point us in the right direction buddy. 😁

Planning to contribute once this is :confirmed: 

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2 hours ago, Otis said:

Planning to contribute once this is :confirmed: 

I figure go for it, hopefully it's him but maybe randall doesn't want to confirm to maintain some anonymity and we help someone else.

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16 hours ago, Mr Anonymous said:

I'm 99.9% sure I found the right campaign on GoFundMe. If you read the description it would seem somewhat unfathomable that this isn't our randall146...

https://www.gofundme.com/thompson-family-fund-eg

Either way I just went ahead and made the first donation. I know what this place is capable of.

That’s me all right. This is shocking to me because I hadn’t given the go ahead to publish it. But, apparently it’s done. 

@Joe Bryant please let me know if it’s not ok to have this up here

everyone else, thanks so much for any donations. 

Peace and Love, randall146 

 

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5 hours ago, Mr Anonymous said:

I went through every Rhode Island GoFundme campaign. And while there are many RI campaigns, there aren't many that were started in the past week with a father of 3 boys, with a picture showing a father, his wife, those 3 boys, a man active in his community, who is a Public Defender, was recently diagnosed with ALS, and is getting treatment at Mass General. As a matter of fact, there's only one page like that.

https://www.gofundme.com/thompson-family-fund-eg

Wow. Good notebooking. 

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2 minutes ago, randall146 said:

That’s me all right. This is shocking to me because I hadn’t given the go ahead to publish it. But, apparently it’s done. 

@Joe Bryant please let me know if it’s not ok to have this up here

everyone else, thanks so much for any donations. 

Peace and Love, randall146 

 

I’ll burn #### down if Joe says no!!*

 

*Theres zero chance Joe does anything other than donate himself

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5 hours ago, Mr Anonymous said:

I went through every Rhode Island GoFundme campaign. And while there are many RI campaigns, there aren't many that were started in the past week with a father of 3 boys, with a picture showing a father, his wife, those 3 boys, a man active in his community, who is a Public Defender, was recently diagnosed with ALS, and is getting treatment at Mass General. As a matter of fact, there's only one page like that.

https://www.gofundme.com/thompson-family-fund-eg

Great work man, appreciate you making the effort for a great cause. 

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22 minutes ago, randall146 said:

That’s me all right. This is shocking to me because I hadn’t given the go ahead to publish it. But, apparently it’s done. 

@Joe Bryant please let me know if it’s not ok to have this up here

everyone else, thanks so much for any donations. 

Peace and Love, randall146 

 

For sure Buddy. More than fine. 

In fact, let's do this - Honor system here but Footballguys will match up to $2,500 of money the forum raises. Let's give it a couple of weeks (or hours depending on what you guys do) and we'll match up to $2,500 for what you guys donate. 

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26 minutes ago, Joe Bryant said:

For sure Buddy. More than fine. 

In fact, let's do this - Honor system here but Footballguys will match up to $2,500 of money the forum raises. Let's give it a couple of weeks (or hours depending on what you guys do) and we'll match up to $2,500 for what you guys donate. 

That’s extraordinarily generous. Thanks so much

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14 minutes ago, randall146 said:

That’s extraordinarily generous. Thanks so much

You're more than welcome Buddy. 

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Yet another FFA dork outkicking the coverage with amazing wife and family.

Wish I was bezos rich and gates charitable.... but I gave what I could, gb.

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@Joe Bryant If you're matching fbg donations only, please note I'm Shonta. I didn't post fbg in my name. Thanks!

Edited by CurlyNight
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2 hours ago, Joe Bryant said:

For sure Buddy. More than fine. 

In fact, let's do this - Honor system here but Footballguys will match up to $2,500 of money the forum raises. Let's give it a couple of weeks (or hours depending on what you guys do) and we'll match up to $2,500 for what you guys donate. 

Then I cop to donation #3 for $100.  Let's ggggooooooooooo!

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I wish I knew you were a Pats fan beforehand.....

Edited by belljr
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$100 more FBG bucks to add to the total. 

randall146 - you've always been one of my favorite posters here, and one of the reasons I've lurked around these boards for over 10yrs. Best wishes to you and your family from Portland, Oregon - I'm pulling for you. And thank you for sharing this diary!

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8 minutes ago, CurlyNight said:

Make sure you put fbg or use your name here so your donation will be matched!

I'm pretty sure it's 100% FBG so far  :whistle:

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On 1/28/2019 at 6:22 PM, randall146 said:

Thanks Henry - I don’t think I’ll qualify for any of those but it’s worth a look. My friends are putting together a GoFundMe for me which I’m hopeful will pay for most renovation costs, and I have hooked up with a great organization that provides new or gently used equipment. 

Heres a brief update: I’m going back to the Mass General ALS clinic tomorrow for the first time since my diagnosis confirmation. I’m still feeling ok but have noticed some spreading of symptoms over the past few weeks. I’ve had a few bad calls, and strained my elbow and shoulder during one of them.  My hands are shaking more and I occasionally drop things.  My walking is moderately worse.

As far as my clinic visit, my wife and I are making a nice day of it in Boston. She got us a nice hotel room with a saltwater pool, which is so thoughtful. Looking forward to that. 

My friends are really stepping up with the help. This weekend more than 10 of them came and painted, cleaned out the basement, and did a bunch of other stuff. They’re planning on doing that again in a few weeks. 

We’ve met with contractors and a designer to plan out a first floor master suite addition. 

And, the GoFundMe. They put that together without my involvement and I know it’s a good idea and people want to help, but there’s definitely a part of me that is embarrassed to be asking. And, my wife tried to show it to me and I saw a photo of me and my wife and sons, and read around half a sentence talking about myself and just started bawling. I’ve seen those kinds of charity pleas a million times and it’s really upsetting to see yourself in one. It brought home the reality of how serious this all is, and that my family will lose me at some point. 

But, aside from that moment and an occasional breakdown, I’m surprisingly optimistic. I’d say 8 out of 10 days I just feel positive, which is very much out of character for me. This disease has definitely started to change my perspective on things. 

Did you apply for social security disability yet? ALS gives you immediate Medicare I believe.

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