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randall's ALS diary (4 Viewers)

I would definitely dial back work and enjoy some time with family. Life is all about the experiences not things.....create some great memories and do whatever you want to do that you haven’t. 

Appreciate you sharing this, it’s natural to doubt yourself but you are clearly a brave guy who will handle this as well as anyone can. Embrace the good things in your life like the great family you have and hang in there buddy. 

 
Because I think about death a lot I always planned to make tape recordings (like the mini hand held ones) for my kids and grand kids. It would be of random thoughts, opinions, and advice that they would be happy to have (or understand me better) when I was gone.  

  I would probably carry one around and just talk when random thoughts pop into my head.  I think Sarah Connor did it in Terminator, but this would be without the time travel element.  

  Anyway I just wanted to throw that out there for everyone.  

 
Sad and shocking news to hear. You and your family will be in my thoughts and prayers. I also want to thank you for sharing your story. I wish I could do more to help you and can’t imagine what you are going through. 

 
Big hugs to you. You are loved and have everyone's support here. Your kids and wife want you around. We want you around. I pray for internal strength to make it through each day remembering the love and support you have from everyone around you and online.

My dad says the same thing about what do his coworkers think when he falls or drops something. What must they be thinking. Any decent human being would be thinking how can I make it easier on you. Thankfully there seems to be a lot more supportive people than uncaring #######s. It's still a work in progress after 2 years to get dad to look at it as people care. Chances are very high they really do. Many people just don't know what to say or do fearing you'll take it the wrong way.

What is helping my dad cope with the yet to be confirmed PLS diagnosis is his PT is also a Buddhist who is working on his thinking and relaxation exercises. It's a lot of work because dad's not into eastern teachings, but slowly he's feeling a little better mentally over time. It's up and down, we just focus on trying to keep him up. He's naturally a depressed person so it's even harder to do.

You are coming from a place of strength. Praying for continued strength and peace.

🙏🏻 🧡

 
PIK95 said:
Because I think about death a lot I always planned to make tape recordings (like the mini hand held ones) for my kids and grand kids. It would be of random thoughts, opinions, and advice that they would be happy to have (or understand me better) when I was gone.  

  I would probably carry one around and just talk when random thoughts pop into my head.  I think Sarah Connor did it in Terminator, but this would be without the time travel element.  

  Anyway I just wanted to throw that out there for everyone.  
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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. 

 
I would definitely keep it informal and positive.  I would have 100 tapes because I have opinions on everything.  I know they would want to hear what dad thought, even after I am gone.  They wiil laugh and disagree, but it will give them a point of reference or some sort of center.  I like how that makes me feel too.  Like I gave them everything I could.

 
CurlyNight said:
So very sorry to hear. My father may have PLS so in my attempt to learn about motor neuron diseases, I found a forum of folks sharing info, what helps them, tips, everything. They were very kind in answering my questions. The sticky threads are very helpful. I will keep you in my thoughts and prayers.

http://www.alsforums.com/forum/

Xxx
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Sorry about your dad. I wasn’t familiar with PLS and just looked it up. The two diseases sound very similar but apparently the EMG test can distinguish between the two. My EMG made the doctors certain I have ALS

I’m getting a 2nd EMG in mid-January - maybe it’ll turn out the first one was misread and I have PLS. 

Weird that I hope your dad doesn’t have it, but it’d be a miracle if I did. 

 
I’m so sorry about you’re diagnosis. I’m 49 with a 13 and 15 year old. I’ve been thinking lately how fast life goes. How we all take for granted things and get upset or worried about stupid stuff.   I tell my kids to always spend their time with people they enjoy because it’s too precious to waste on losers. 

Reading your posts only encourages me to try to live by the words I tell my children.  Thank you for that. 

 
I found a lot of comfort and catharsis from posting here after my medical ####. I'm truly sorry to hear about this but I really encourage you to continue here for as long as you feel comfortable talking about it. It has personally helped me a lot to share and in the end, I say take what you can get my man.

 
randall146 said:
Sorry about your dad. I wasn’t familiar with PLS and just looked it up. The two diseases sound very similar but apparently the EMG test can distinguish between the two. My EMG made the doctors certain I have ALS

I’m getting a 2nd EMG in mid-January - maybe it’ll turn out the first one was misread and I have PLS. 

Weird that I hope your dad doesn’t have it, but it’d be a miracle if I did. 
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They say PLS is slower both to diagnose and to take it's toll. We're still holding out it was a stroke but the clear MRI makes it unlikely. So it's a wait and see thing as only time really rules out the motor neuron diseases as other mnd are crossed off.

I certainly can understand hoping for the lesser of the 2 evils. PLS can turn into ALS and sometimes ALS is misdiagnosed for PLS. The fact it's not a bulbar onset gives a better chance of misdiagnosis since PLS usually doesn't really affect your swallowing and diaghram. Keep the faith. Keep positive no matter what. A healthy mind is key to getting through such difficult diseases. Xxx

 
TripItUp said:
I lost my mother to ALS 18 months ago and I was primarily responsible for managing her care.  

Let me know if I can be of any help or if you need some advice.

the ALS association was an amazing group that assisted our family.   If there is a chapter near you Id recommend connecting with them if you already havent. 
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Man I can’t imagine how hard that must have been for you emotionally. That’s truly heroic.  I feel like I have the easy part, my wife has (and you had) the hard part

We do have an ALS chapter in R.I. that’s not to far from my town. I was actually shocked to find out that a pretty good friend of mine is on the board there and does a ton of volunteer advocacy work. Funny/sad how I had no idea about this passion of his until I got the disease. 

I do need to connect with them. I went there the day after my diagnosis but I think I was in total shock and didn’t really take in anything they said to me. 

I’m hopeful that they have resources like talking me through what resources are out there financially, equipment-wise, etc. 

 
Ralph Furley said:
Randall, I sincerely wish you (and most importantly your wife and family) the best. 

My grandfather lived with ALS for close to 30 years.  I have fond memories of him, pre-ALS, however the bulk of my memories stem from post ALS, as I was maybe 7-8 when he was diagnosed.  Watching him slowly degrade over a two year period, from a 6 foot strapping man, to being confined to a wheelchair, than ultimately bed...was very difficult for my family, especially my grandmother.   

That said, they made a choice to live with ALS, and for that, me, my siblings and cousins are forever thankful.  Although he could never do the physical activities he used to do, he was a huge part of our lives. He was there for all of our family celebrations, able to witness, and participate ( as best as he could) in our daily lives.  He saw all his grandchildren graduate high school, college, and more. He comforted me when I was diagnosed with cancer as a young man.  He gave me strength I never knew I had.  Unfortunately, he never got to see his great grand children, however they know him better than they could have if he was able bodied.  They know him for his fearlessness, lust for life, and strength.  He is my hero, and in many respects theirs too.

Although I had great memories, i must say it wasn’t very easy....there is no sugar coating this disease...it sucks. Challenges no person should ever have to endure.  But, they (my grandparents) accepted the challenges, and embraced them.  My grandmother wouldn’t let go; she dedicated her life to him...literally. Sacrificed everything they knew, for the unknown. They were a living example of love, and sacrifice...real love...real sacrifice.  But, most of all, they learned to live with the disease, and they made it work.  They were happy, really happy.  Happy to be together.  Happy to look into each other’s eyes, heart, and soul.  They found a new love; a love that didn’t require words, a whole other plane.  It was theirs, and theirs alone.  They were special, their love was special; it was the most unfortunate gift, but they made it theirs, and for that I am truly blessed.

When I am going through a tough time, I look to him ( and my grandmother) to give me their strength, their courage.  I hope you find peace with this horrible disease.

God Bless You
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Thanks so much for this - I find it very reassuring. I have a fear (irrational I think, but still a real fear) that my kids will see my physical decline as weakness, not strength, and become ashamed of me. For example, not wanting to bring friends to our home, or not wanting me in my wheelchair at their games. 

I hope I can find the happiness and content your grandparents managed, and I hope my kids find strength and inspiration like you did

 
AcerFC said:
I have a place in Ocean City Maryland. If you want to swim in the ocean, let me know and ill send you the keys. 
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Thanks man - I’m booked in the Outer Banks in April. It’s freezing, but it’s still ocean swimming. 

And if my legs make it to the summer, I’ll be in the R.I. ocean as often as possible. 

Most of my self-euthanasia fantasies involve me “accidentallly” driving my wheelchair off back of the Block island Ferry

 
randall146 said:
And if my legs make it to the summer, I’ll be in the R.I. ocean as often as possible. 
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Bonnet is pretty easy to park and hit the ocean and it's pretty dead on week days.  Let me know if you want some passes when it's closer and I'll hook you up.

 
PIK95 said:
Bonnet is pretty easy to park and hit the ocean and it's pretty dead on week days.  Let me know if you want some passes when it's closer and I'll hook you up.
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It also has pretty flat sand so if my wheelchair really got going I may be able to get a few feet deep before anyone noticed

 
Last thing I’ll add for tonight - a couple of you actually know my real life identity, and anyone with a decent notebook and google could figure it out

If you do know who I am IRL, please don’t tell anybody my situation, or that I post here. Like crossing the streams, that would be bad. 

 
  i told my wife about you sharing your story.   she thinks we are a bunch of maroons.  but, she also can't believe how much we actually give a #### about each other.  keep posting whatever the hell you want to.  and imho, it's completely normal to consider ending it. know this though, i care.  and i don't even know you ;)  

and don't wait until summer.  f the money, fly somewhere tropical and get in that water.  

 
randall146 said:
Man I can’t imagine how hard that must have been for you emotionally. That’s truly heroic.  I feel like I have the easy part, my wife has (and you had) the hard part

We do have an ALS chapter in R.I. that’s not to far from my town. I was actually shocked to find out that a pretty good friend of mine is on the board there and does a ton of volunteer advocacy work. Funny/sad how I had no idea about this passion of his until I got the disease. 

I do need to connect with them. I went there the day after my diagnosis but I think I was in total shock and didn’t really take in anything they said to me. 

I’m hopeful that they have resources like talking me through what resources are out there financially, equipment-wise, etc. 
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Honestly, It was the most difficult experience  I’ve ever had.  She had always been the most important person in my life.   Raised three of us on a single income etc etc.

As far as the ALS association, they help in several ways including:  

1) navigating healthcare options

2) books/literature 

3) equipment(probably the biggest help)

4) connection to Discussion groups/emotional support 

They have been helping thousands of families like yours and mine for decades and they had a profoundly positive impact on our experience. 

Feel free to PM me if you have any questions too personal for the forum.  There is a lot more advice I can give and a lot more detail I can share but I think I know where you are at...it can take time to digest it all.  

You are doing all the right things and showing great courage.   

 
randall146 said:
Thanks so much for this - I find it very reassuring. I have a fear (irrational I think, but still a real fear) that my kids will see my physical decline as weakness, not strength, and become ashamed of me. For example, not wanting to bring friends to our home, or not wanting me in my wheelchair at their games. 

I hope I can find the happiness and content your grandparents managed, and I hope my kids find strength and inspiration like you did
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Your fear is not irrational, it is certainly a reality with this disease.  

At first, when it became “real”, I was uncomfortable around him, but I was very young, and back then (late 70’s), outside of Gehrig and Hawking, ALS was not well understood or discussed as commonly as today.  Over time, I became more comfortable with him, and found ways to communicate.  It never got any easier, but I, and my siblings and cousins, worked through OUR issues.   Over time we developed a unique relationship.  I would sit with him, share my stories, and confide in him, in ways I wouldn’t with an other family member.  To this day, I still remember sharing my cancer news with him, both the bad and the good news.  He was my champion, always there for me when I needed him.  He didn’t have to say anything...I knew he was there for me.  ALS transcends life in ways only those living with it can truly understand.  You will never be a burden, as long as you allow your family to help you, and most importantly, let them love you.

I wish you the best, and just wanted you to know that you can live with the disease, if you choose.  

 
Hi @randall146

I'm sorry I missed this earlier. I'm amazed at your grace and poise here. And I'm sure it's not all like that but thank you for giving us an example of what that can look like. 

I've found it ironic that while I make a living writing about people most of the population would call heroes, I'm infinitely more impressed by people like you. 

I'm praying for you for peace and grace and healing. I'm praying for your family as well. 

Know this one thing - We're With You.

I can't imagine what you're dealing with but I'd guess it can be lonely. Don't ever feel like you can't share here. Let us help however we can. 

Ram Dass has a line I love - "We're all just walking each other home at night". Let us walk with you. 

 
randall146. I hope you make it to the beach and into the ocean a thousand more times, GB. No matter where you happen to be physically at any given moment, though, you're always an inspiration. You're loved here very much. I hope you'll continue to share whatever you're comfortable with, and know that we'll promise not to make fun of any typos. I don't know how to express how strongly we're all on your side.

 
This place is so ####### goofy that I can't imagine trying to explain it to anyone else.

Yet I sit here and am profoundly moved by your openness and courage and willingness to be human despite the darkness.  And moved by people who know the road ahead and are willing to carry a light for you.  And moved by the genuine kindness of strangers willing to share the load in whatever small way.  And most of all just from being able to imagine the weight you're carrying with such grace right now -- I know I'm not that strong.

So I wish I could say something useful randall (my #1 pick in the FBG lawyer draft!), but I'm daunted by circumstance and can't imagine what those words would be.  But I meant it when I said you were in my thoughts, and you'll stay there.

 
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Late to the thread and echo all of off the thoughts shared so far. Let us know what we can do to help you. Put up the good fight and we wish you well. 

 
I have no words to add, at least nothing that hasn't already been said, but I hope & wish the best for you in your journey forward. the fact that you're sharing all shows how strong & courageous you are, so keep up that attitude. don't give up the fight, and use all the resources available to you.

and if you wanna swim in the ocean, #### waiting for summer. book a flight to Hawaii right now and go swim in that b####! no time like the present!

best of luck to you, man.

 
Randall, I send my best wishes to you, your strength, decency and humaneness shine through here. You have my prayers and offer to reach out to talk whenever you need it. Hang in there. - SID

 
Not on the FFA as often these days and I don't have much to offer other than I will keep you and your family in my heart, Randall.  Thank you for the courage to share your story with this amazing disfunctional (and wonderful) e-family.  All the best.

 
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. 
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I forget the guy's name, but one of the old CNN sports anchors had terminal cancer. He made pre-recorded tapes for his kid(s) for life's important future events that he would miss. In fact I think he made a tape for each birthday up to some age. I thought it was one of the most thoughtful things he could do for his children. It's incredibly sad, but what a wonderful thing for a kid to be able to have a moment with a parent that they lost long ago. I hope you give this some thought.

 
randall146 said:
Thanks man - I’m booked in the Outer Banks in April. It’s freezing, but it’s still ocean swimming. 

And if my legs make it to the summer, I’ll be in the R.I. ocean as often as possible. 

Most of my self-euthanasia fantasies involve me “accidentallly” driving my wheelchair off back of the Block island Ferry
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I am by no means suggesting anyone do this, and I only think about these things for when I will need this information in my own life, but... one can purchase all items for no-pain self-euthanasia at Party City.

 
randall, I've watched and admired your posts here for a long, long time, and now I know for certain why.  Your courage and bravery are remarkable.  If there is anything I can do to help you, please PM me.  I have a very strong feeling, though, that you’re going to be the one offering inspiration and hope around here for a long, long time.  May God bless you and your family.  

 
Wow, I'm so sorry to hear about this, randall.  To reiterate what others have said more eloquently, you've been a great poster and all-around great guy here for a long time.  Thanks for sharing your story.  

 
Hopefully this will give you some encouragement.  A "gym' friend of mine has had als for over 20 years.  This guy  was an avid runner and he said at times he would start stumbling for no reason..he just put it on getting older and trying to run too fast.  Then he actually fell a few times while running on flat ground..still thinking it was just age catching up he again put off going to the doctor..he was 35 at the time.

Eventually he realized something was wrong and was diagnosed with ALS..that was over 20 years ago.   This guys still goes to the gym 4-5 days a week and although it has progressed he credits his workouts with keeping him strong and able..he looks great and is able to do most everything he always has done..  At times he has his moments but otherwise he has overcome everything in his path and credits never giving up his exercise routine..just changing and adapting it.

Randall...I pray that you find something that works the same for you.    

 
randall146 said:
SWC said:
be strong fight it like hell and live one hell of a life around it and i wish you the absolute best 
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What I get one terminal illness and I’m not a bank-taking bromigo anymore?
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hey randall you can take anything to the bank on me all the time in truth i just dont type that when i am trying to convey that i am being 100 precent serious which i was i honestly wish you the best and hope you stay strong and that my friend you can indeed take that to the bank brohan

 
randall146 said:
Thanks all for the positive thoughts.  Henryford, flying the no-surrender flag is one of the nicest things I've ever heard. 

I hope I have the strength to keep fighting, but I have to say that, even at this very early stage I doubt myself every day.  There are so many discouraging things that happen, and so many times I'd just assume give up.  Getting dressed takes forever.  I have bathroom accidents frequently, including during the day at the office.  My secretary has had to rescue me, and so has my best male friend.  It's just so embarrassing/emasculating.  The walk from my parking lot to my office takes 5x as long as it did before, which is discouraging way to start the work day.  My energy and patience at work is low.  Those of you who are lawyers know that one of the worst parts of any day is fighting with clients about what is possible or impossible, what is reasonable vs. unreasonable.  In my case I'll get a couple client calls from prison when I first get to work, and by 10:00 I'm just exhausted from the battle (against my own clients).

Then there's knowing that people are seeing me limping, deciding whether to tell the truth or lie when they ask.  There's knowing people feel sorry for me, but also knowing how much worse it's going to get.  Right now I can still walk, talk, drive, type, and usually take a successful trip to the bathroom.  I'm absolutely dreading when I can't do those things and/or need help with those things.  I'm dreading looking like a vegetable in a wheelchair, and people will either ignore me or talk to me like a baby, but I'm still smart and observant and tentatively sane.

I'd definitely be lying if I said I don't think about giving up.  I huge part of me wants to stop going to work and just stay home, or do other stuff.  Everyone who knows me says "You'll be miserable if you stop working" and I'm forced to agree with them, but in reality I can't or am afraid to explain the fear and frustration and exhaustion.  And that's just work.  Another part of me thinks about giving up altogether.  If I didn't have my wife and kids I'd be fine checking out at any time.  I feel like for sure I'll want to end things before it would come naturally, but the cruel thing about that is that by the time I'd want to kill myself I won't be able to do it myself - So do I do it before I lose all my limbs?  Or do I wait it out until the end?  Or do I figure out some kind of euthanasia option while I can still fully communicate and people will believe what I want?

I'm not going to actually do it any time soon.  I'm 100% in this for my kids.  It's just something I think about regularly.

Over the past couple weeks I've increasingly felt like my left hand is starting to go.  I'm clumsier.  I make frequent typing mistakes.  When I yawn/stretch my left forearm shakes like a dog scratching itself - far faster than I could do intentionally.

I know this is new to all of you, and also that my doctor said he thought it was progressing (hah!) slowly to moderately, but to me it feels pretty damn fast.  One of my secret goals is to get to the summertime before I'm in a wheelchair, because I want to be able to swim in the ocean again.  Every day my leg strength gets worse I get more pessimistic about that goal.

I look back at what I've written so far this post and know there's so much more to it.  There's other considerations - like getting paid, keeping life insurance, planning so that my family can stay in our house and in our town and still go to college.  And there's plenty positive going on too - People offering help, my court going way out of its way to make work better for me, and you guys being so supportive and complimentary and encouraging me to vent and express myself.

So it's not all bad.  I'm just feeling down right now.  The holidays are always tough - this year it's just something extra.

On the plus side, Liverpool goes into 2019 six points atop the table.  Eat it Mancs.
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Gut-wrenching.  Stay strong, brother.  Any time you feel like giving up, please come here to talk.

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

 
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

 
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!!

 
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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