randall's ALS diary (3 Viewers)

higgins said:

 I’m so sorry to read this. I remember years ago being a n00b on these boards and Randall (with Magnum as his avatar) welcoming me (with Higgins as my avatar). Thoughts and prayers. 

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Thx little buddy. My avatar is still Magnum, just the new one. I’m sure no one would mind if you switched to the new Higgins. Wa wa WEE wa

Doctor Detroit said:

Thank you for sharing this, it takes a lot of courage to talk openly about such a bad beat. I wish you and your family the best. 

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Greetings Dr Death!  I knew you’d come along at some point. 

Don’t know what to say other than I’m sorry and good luck. 

I read this late last night, and went into deep thought about you. When I looked back at the clock, almost an hour had gone by. I decided to go to bed, and post today. You were in my dreams last night, and all I can remember is that a bunch of people were at a tavern in Rhode Island hanging with you, Good Vibrations was playing in the background, and although I have never met you in person, you were wearing a Duke shirt and you looked like Tom Selleck. Randall, I am really sorry about your diagnosis.  I have always liked you a lot, and I think highly of you. It takes courage to share with us something so private. I hope it serves as therapeutic for you, and if it does, I hope that you continue to share your thoughts and feelings through your journey.  I agree with the above sentiments that your story does make us pause and examine our own lives. Thank you for the self check.

You're in my thoughts, and I reckon my dreams too.  There are so many things I wish for you on your journey.  Keep on keeping on the best you can, and soak up the love that surrounds you.  

I'm so sorry.  Best wishes to you and your family.

Randall, thanks for sharing. This is a bad break and all of my best wishes go to you & yours. There are a ton of good folks here to bounce things off of (or scream at, should venting be required). 

So sorry to hear this. Wishing you and your family strength and peace as you deal with your illness.

I can’t add much except to just be one more of the FBG family to let you know I’ll be thinking about you. Thank you for sharing your story - I wish the best for you and your family.

Otis said:

I have to say it’s pretty amazing how strongly you seem to be taking this.  Most of us would be a sobbing lump in a corner. 

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Ive definitely had a few sobbing episodes. Mostly thinking about my kids. I remember probably an hour straight last week of repeatedly wailing “I don’t know what to do, I don’t know what to do. I feel so bad for them”

My wife has gotten me through those, staying calm and holding me and talking me through it. She running the whole operation, arranging my appointments, talking to Blue Cross, figuring out who gets told and when. 

She’s getting a really nice necklace with an anchor pendant for Christmas. 

p and s she just walked by as I was posting this. I told her I was posting about it here and people were saying nice things and remembering stuff from years ago. I held her through a short little sobbing session of her own

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.

Randall, I just wanted to add to the sympathies already expressed, and that I'll be keeping you and yours in my thoughts and prayers. I find it really brave that you're sharing this, and I hope it gives you a sense of catharsis and peace to do it. For me, it really drives home the point of not sweating the little things in life and lose focus on the people who are most important.

I am going to pray that God gives you more grace to handle this, but, from the telling, it sounds like you and your wife are already doing amazingly well. My best to you and yours.

T & Ps to you and your family.

We have people that complain about this forum on a daily basis and some of those days I’m the one complaining.  But most of us keep coming back because it’s a unique little part of the internet where we share our lives and commiserate with people that we mostly don’t know because they are going through similar things in life and life is meant to be shared.  

I sit here reading this story about a brave man I’ve never met and probably will never meet.  Someone I respect as being smarter and more patient than I’ll ever be.  And I sit here in tears typing this, I realize there’s nothing I can do other than offer my sincere hope that you beat this mother####er.  That you and your wife and boys have many more years together.  That you know that this little part of the internet has your back and is wishing nothing but the best for you.  This place is special because of people like you Randall.  

Will be thinking of you and your family. Whenever I hear of ALS I always think of a coach who was diagnosed with ALS at my moms old school she retired from. He went through all of the emotions of it only to find out later they’d misdiagnosed him and he had Lyme Disease instead. 

Ahh ####, Randall.  So bummed to hear this -- my mom's brother and father had ALS.  Do what you can/need to do to take care of yourself.  You're in my thoughts.

Damn... This sucks to hear, Randall. You're a great dude, someone I respect a ton on here. You and your family didn't deserve this.  ####### Bull####.

Wishing you and everyone close to you the strength to get these trying times. 

Thank you for sharing your journey through this diagnosis. The FFA can be a great place for support, information and even humor. A place where you can share your vulnerability while trying to remain strong for those around you IRL. We are here for you Randall. Lean on us. 

So sorry to hear this Randall. You’re in our thoughts. I wish you the absolute best of luck in your battle. May sound stupid, but I light candles for people in my life that are in bad spots. I will fire one up for you tonight brother. Stay strong. 

Thank you so much for sharing this with our ridiculous and ridiculously close community. 

We're about the same age and I've got a couple of young kids too...and I'm struggling to even find the words to say- I can't imagine what you're going through and thopraw to you to continue the courage and grace you've already shown.

I know if there's anything you need, we're all here for you- however small, goofy or important.

Very sorry randall.  Thanks for taking the time to share.  You know everyone here is pulling for you.

Sorry to hear this, wishing you the best.

Very courageous to share your journey - thanks! My prayers are with you and your family! 

Add me to the list of people who are sorry to hear this. Enjoy Christmas tomorrow. Thanks for sharing your story

I'm so sorry. Hoping that you and your family find peace and joy tomorrow and are able to push this aside for a bit and truly enjoy each other.

So sorry to see this. I lost my Mom to this years ago. Best of luck to you.

Sorry to hear gb. Enjoy your Christmas with your wife and kids and forget all this for a while. Merry Christmas 

higgins said:

 I’m so sorry to read this. I remember years ago being a n00b on these boards and Randall (with Magnum as his avatar) welcoming me (with Higgins as my avatar). Thoughts and prayers. 

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I remember that too.

God bless, Randall.  We're all behind you here.

So sorry Randall. My Niece's husband was just diagnosed with ALS last month.  Let me repeat what someone else suggested, the alsforums.com website is excellent.  

I don't really know you, sir - and that seems to be my fault - but thank you for sharing. I'm so sorry. This sucks royally.

I'm sorry Randall.  I have some family and friends who have been through this.  I'll be keeping you and your family in my thoughts.  Thank you for sharing.  

Thanks for sharing your story, randall - I hope this helps you, and I know it helps us understand and sympathize with people with ALS.

From what I've seen, your boys will be better people for this.  They'll have more sympathy and will be eager to help you out with anything you need, and that's likely to extend to the rest of their lives.

I'm sorry this happened to you, Warlight buddy.

Thank you for the updated post and Merry Christmas to you and your family.  The courage and strength that you have dealing with this all is clear and transparent.  Make no mistake--you can and will have weak moments.  When you do--do not hesitate to come here.  Reading through this thread makes it obvious that you have an army of people in your corner sending you all of the love, support and positivity that you need in those moments.  

Sorry to hear this.

So sorry to hear about this - I appreciate you documenting your journey.  Best wishes to you and your family

thinking of you.  

TP.  sitting here thinking of you and your family.  i am sending all my karma that i have been storing to you.

I'm speechless here.  Sent you a PM.  

be strong fight it like hell and live one hell of a life around it and i wish you the absolute best 

A couple of years ago my wife got me a Gleason “no white flags” flag for Christmas. It’s been in my house since then. 

It will be flying under my American flag from now on in your honor, Randall.  It isn’t much of a gesture, but it’s one I can stick to. I wish you love and time.  As much of both as can be.

Just like everyone else, thoughts and prayers to you and your family through this difficult time.  

Just checking in after the holiday, and saw your post.  I have a friend in the late stages of ALS.  T&P's GB

Thanks for sharing.  I wish you all the courage in the world for this difficult journey you are about to endure.  Hopefully, posting here can be therapeutic and help you in some way.  If at the very least knowing you have a message board full of people thinking about you and hoping for the best.  

I’m so sorry, man. I do think that if I had to pick someone on this board who I think I would be likely to continue living a meaningful life with this type if diagnosis, you’re on the short list. Obviously, it’s different, but my Mom has had a lot taken from her in the last 35 years by MS, but it hasn’t taken the core of who she is. 

AAABatteries said:

We have people that complain about this forum on a daily basis and some of those days I’m the one complaining.  But most of us keep coming back because it’s a unique little part of the internet where we share our lives and commiserate with people that we mostly don’t know because they are going through similar things in life and life is meant to be shared.  

I sit here reading this story about a brave man I’ve never met and probably will never meet.  Someone I respect as being smarter and more patient than I’ll ever be.  And I sit here in tears typing this, I realize there’s nothing I can do other than offer my sincere hope that you beat this mother####er.  That you and your wife and boys have many more years together.  That you know that this little part of the internet has your back and is wishing nothing but the best for you.  This place is special because of people like you Randall.  

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I don't do words good. But AAA pretty much summed up my thoughts. Continued thopras to you and your family. Please continue to share if you can.

That was heart breaking to read.  I simply cannot imagine going thru something like that with my wife and kids. 

Wish you and your family the best and you all will be in our prayers.  

Speechless here.

I'm so sorry for you and your family. You will be in my thoughts and prayers. I will pass your name to a relative of mine who is a nun and she'll put you in their prayer list.

I have seen you be nothing but a thoughtful, polite and classy person since I’ve read you on these boards. I am truly sorry for what you and your family are going through. This community is what it is because of people like you, and I thank you for sharing that spark with us. You are in my thoughts, man. 

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

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.