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randall's ALS diary (2 Viewers)

Somehow missed this thread until now - can't even begin to express my sympathies Randall.  I have thoroughly enjoying reading you over the years and always considered you not only amongst the brightest, but also the most empathetic and well rounded posters in our community.  If you posted something I disagreed with, I had to self reflect, b/c you're as good as it gets.  

As others has mentioned, I hope you lean on us as much as possible.  You are loved here.    

 
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Mr Anonymous said:
I just wanted to help in any way I could. Once I found the right campaign, I weighed whether or not to share it. But hey, its GoFundMe - it's meant to be public. Everyone here is going way above and beyond what I did and should be proud of themselves. I'm glad to be a part of it. Most importantly I'm happy that something nice is being done for a fellow FBG. It's neat to see the total grow.

That being said, since the link is on page 4, and for the sake of convenience, here' randall's GoFundMe page fresh with another donation...

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

This time I added my FBG name. :)
This is awesome.  Another donation made.

And thanks @Joe Bryant & @David Dodds.  You guys are ####### awesome.  

 
I don’t think I can until I’m actually disabled - as in not working. Is that wrong?  Would Medicare benefit me now even if I could get it?  My wife’s medical insurance is excellent and covers many things Medicare doesn’t

You are right that ALS auto-qualifies for disability and Medicare once I do apply. 
In order to qualify for SSD, you need a 80% loss of income. You don't  have to completly cease work.

 
Another FFA donation. Put my FFA ID in the notes.

T&Ps. If there is anything more that you need, let us know. Never surprised with what this place can do!!

 
You've obviously been doing right by others for many years to receive this level of outpouring.
Well said. 

Picked a square in a SB pool in another thread on this board to throw in the bucket. None of the individual numbers in your screen name were available, so I added 14+6 and took the 20th square. 

 
Just saw the thread. Sorry to hear about your diagnosis. It totally sucks.
Had a very good friend that got it then died from it in 1993, two and a half years after diagnosis. He was 40. He was very active
and it was a total shock to hear about. I was with him when he first had symptoms and he knew something was wrong.
His wife remarried and he died Tuesday at 62. No idea what of. 

Good Luck. Don't give up

 
You've obviously been doing right by others for many years to receive this level of outpouring.
I had the same thought - not only because of the donations but the outpouring of kind words people have been writing on the page.  Obviously a great dude (who outkicked his coverage).  Hell, I may even root for the Patriots*

*to lose by 20 and not 50

 
Thanks all. I’m going to get to an update one of these days. Still mired in seemingly endless Dr and lawyer and nurse and PT and contractor meetings, while trying to do my full time job. 

Also, we’re really only about $2k from the goal. One of my friends asked for donations for me for her birthday and that mini-GoFundMe is at around $2,500. Unbelievable. 

Edit - Actually only $1600 away

 
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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."  :crying:

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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I'm torn between saying how difficult/sad that is to read and how inspiring it is.  Just know that you are thought of often by many here and I truly hope we can give back to you here.

 
Whoops - I forgot to mention a couple good things coming up.  In a few weeks my 12 year old and I are going to spring-training for a couple days.  I've never been there before, but have wanted to for a long time.  I'm going to try to do stuff that's been on my list and this is one of them.  And I'm trying to do some special individual stuff with each of my kids.

My 12 year old is the one most like me - introverted and calm, likes peace and quiet instead of noise and action.  He's the one who likes nature walks and fishing and crabbing and stuff, so he's a natural fit for this slow boring baseball trip.  I really can't wait.  I think we'll get some beach time too.

Then in April we'll go on our annual Outer Banks trip with three other families.  It'll be nice to sit in the sun.  There are plenty of the usual activities that I won't be able to do (sand sports, cornhole, quick swims in the freezing cold waves), but I hope I'll  be able to do some simple pier fishing and just enjoy the time with people I love.

 
I

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."  :crying:
Im crying

 
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."  :crying:

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, makking 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.
How proud you must be to have raised an awesome kid like this. You are clearly a superlative father. Enjoy the warmth and boredom at Spring Training!

 
As I lay there before getting up my 15 year old laid down next to me and calmly started just joking around, makking 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.
This is awesome!  But I can't read your thread any longer while I'm at work it got really dusty in here just now.

 
There is no one word to describe how much I admire you're strength. There are plenty of words to describe how much I hate this disease. I am so glad you have a loving family by your side along with everyone who knows you. Speaks volumes to the person you are. May the ups outweigh the downs. 🙏🏻♥️

 
can we trade kids? inspiring all the way around- and I'm genuinely appreciative that you're sharing this here. 

all the best to you and that amazing family, randall.

 
Whoops - I forgot to mention a couple good things coming up.  In a few weeks my 12 year old and I are going to spring-training for a couple days.  I've never been there before, but have wanted to for a long time.  I'm going to try to do stuff that's been on my list and this is one of them.  And I'm trying to do some special individual stuff with each of my kids.

My 12 year old is the one most like me - introverted and calm, likes peace and quiet instead of noise and action.  He's the one who likes nature walks and fishing and crabbing and stuff, so he's a natural fit for this slow boring baseball trip.  I really can't wait.  I think we'll get some beach time too.

Then in April we'll go on our annual Outer Banks trip with three other families.  It'll be nice to sit in the sun.  There are plenty of the usual activities that I won't be able to do (sand sports, cornhole, quick swims in the freezing cold waves), but I hope I'll  be able to do some simple pier fishing and just enjoy the time with people I love.
Sounds like an awesome trip.  And very cool of your older son doing that for you and the younger one.  Seems you raised him well.

Continued well wishes to you and your family.

 
Reading about your 15 year old; the #2 of the “best 1-2 punch ever”....... laying down beside you, well my eyes got pretty watery after reading that! You should be very proud!! Keep making great memories with your family! Enjoy spring training!! 

Prayers from Ohio!! 

 
Whoops - I forgot to mention a couple good things coming up.  In a few weeks my 12 year old and I are going to spring-training for a couple days.  I've never been there before, but have wanted to for a long time.  I'm going to try to do stuff that's been on my list and this is one of them.  And I'm trying to do some special individual stuff with each of my kids.

My 12 year old is the one most like me - introverted and calm, likes peace and quiet instead of noise and action.  He's the one who likes nature walks and fishing and crabbing and stuff, so he's a natural fit for this slow boring baseball trip.  I really can't wait.  I think we'll get some beach time too.

Then in April we'll go on our annual Outer Banks trip with three other families.  It'll be nice to sit in the sun.  There are plenty of the usual activities that I won't be able to do (sand sports, cornhole, quick swims in the freezing cold waves), but I hope I'll  be able to do some simple pier fishing and just enjoy the time with people I love.
Love this. Rock on, Buddy.

 
Went to donate, and did so just before posting this - which I mention only in case Messrs. Bryant and Dodds are still matching. 

Best wishes, Randall.  Thanks so much for the update. 

 
Recovering from a total knee replacement and one of my first things to catch up on is how you are doing. I hope to hear you're on a nice trip with your family. Always thinking of you with prayers and love. Xxx

 
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I was really having a crappy morning and feeling sorry for myself..reading some of your posts was very uplifting and made me feel thankful.  I pray and hope for the best for you Randall..you truly are an amazing person.

 
Update time. I’m writing from a Duke student center of some kind while my 16 year old is on an admissions tour. Later today we visit Wake, and tomorrow UNC. Who knows if he’ll apply or get into any of them, but we thought a couple extra days tacked onto our OBX vacation made sense. It’s a good way to start looking at colleges and a great way to spend some time with him. 

Durham has REALLY changed since I was here 20+ years ago. Tons of new commerce and construction. It’s really beautiful. We went to a Liverpool bar in Raleigh for yesterday’s match, and a Durham Bulls game last night. 

Our week in Duck was mixed. It was great for the kids, but bittersweet for me. There’s just a lot I can’t do now. My days of walking are pretty much done, but I haven’t moved to a full wheelchair. I’m using an electric scooter chair, which is great in that it conserves a lot of energy, but nothing in my world is handicapped friendly. The house we were at wasn’t, so I could use the chair on the main(2nd floor), but had to really think about going anywhere else.

I couldn’t go on the beach. I had to really struggle to get to the sun deck where we always have our coffee in the morning. I couldn’t really participate in our annual cornhole tournament (I can throw the bag around 10 feet, and not at all accurately).

And I was constantly battling between asking for help and just not participating. I have great friends and they’d do anything for me, but, for example, I don’t WANT them to have to carry me up and down steps. I’m not ready to be that needy. But, truthfully, I am that needy. 

Highlights of the week included fishing (not catching) off Jennette’s Pier, lots of cards and laughs, and some outstanding bbq in Chesapeake VA on our way to a Norfolk Tides game. 

I also told you guys about my spring training trip with my middle son. It was just great all around. We saw some games, had some good meals, saw some nature, and went to the beach. 

I was still walking at that point so we could do a little more. Unfortunately my legs had already lost my ability to swim. I borrowed a life vest from a ski-doo rental place and was able to spend some time floating in the water, which was actually really nice. I needed help getting to and into the water. My son was clearly a bit embarrassed to support my walking initially, but he got over it and eventually he relaxed and we had some fun. 

This whole thing has been a tough learning experience for them. They’re being stretched but becoming better stronger people. 

That’s all for now. I’ll post some work and health updates sometime soon. 

 
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Good to hear from you Randall.  I spent Easter with my niece's husband who has ALS.  He's really lost his mobility quickly.  Five months from first symptoms to being in a wheelchair and unable to lift his arm high enough to feed himself. He got results back from the genetic tests and he was positive for one of the markers.  

Stay strong Randall.  Lots of support for you here if you need some.

 
Hey Randall, 

Sorry for all you're going through, its just not fair GB.  My father in law was just diagnosed with ALS about a year ago.  Day to day he's using a rolling walker with a seat but can't get very far with it anymore, the electric scooter option sounds interesting.  Last summer we did a family trip to a condo in OCMD because the high rise had an elevator but he had trouble getting out onto the beach with us and the kids and only made it out once with help.  Last month we took another family trip with him to Siesta Key, FL near Sarasota.  One of the reasons was we could rent a house with its own elevator and pool.  When we got down to the beach we found the coolest thing though, there was a company renting basically motorized chairs with treads to get around on the beach...  Tracked Mobility   I don't know if its an option in many other places but it was a big help on the beach.

 

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