Status
Not open for further replies.
Cowboy,
Sorry to meet you here. This forum has been so good for me. I don't know about broken, but honest is more like it.

I also go to Barrow's. They are excellent and the doctors are all very good clinically but also very empathetic. If you would like, when you next come to AZ, I would enjoy getting together to say hey and grab a bite, or smoothie, or coffee. Dr. Ladha, Dr. Kneivil and Dr. Bowser are incredible. I don't know the others doctors there. I have heard that they may be a western trial site for a phase 3 trial.

I agree, our wives/spouses have it hard. Without our faith we would be lost. Like you, our kids have rallied around us. What a blessing they and our friends have been.

In Christ,
Doug
 
Dear Glenn, you are quite a guy! Loved your descriptions and proactive plans.
Just a thought- protecting your wife by keeping things to yourself will make for a lonely journey for BOTH of you and also may make it harder for her in the long run. I was grateful when my hubby shared those inner conflicts- including the tears! This truly is a SHARED family disease. Not to say you should share every negative thought, but don't think you are protecting her by shutting her out. It would have devastated me if my guy hadn't let me know his innermost thoughts, struggles because that sharing brought us even closer. Maybe you can ask her how she feels about this. Hugs to you both. This isn't an easy road but your strong spirit made me smile! (Be careful- you might get a lot of requests for those pine boxes! Lol). Donna
 
>My 3 kids are all in their 30's, and don't seem to have time for me, or even offer to help with anything. I guess what Harry Chafen sang way back when is true, "Cats in the cradle."

:)

https://youtu.be/7OqwKfgLaeA
 
That's a bad deal partner. Guess I jsut got lucky. I was a busy as the next guy while my kids were growing up...but I swear, the support I've gotton since I passed the bad new out, has staggered my imagination. I've 5 boys and a girl. The hardest thing for me is to speak to them.....my voice is going fast, and when I get emotional....it's physically impossible for me to form an intelligible sound. It's embarrassing. Just got to try and keep control. All my kids and 11 grandchildren will be totgether with me and Momma for a week in June. Our very first Full family reunion. WOW.
 
Have you recorded your voice at all? If it is getting tough you may not want to do modeltalker but even if it is not the old you record now for your family. Read a story for kids, record individual messages. It is so important to your loved ones
 
Last edited:
Welcome Glenn,
So sorry for your need to join us. But, you will get alot of support from this forum and good information. It's not all gloom and doom on here. Sometimes, we even managed to share a laugh or two. My dad turned 80 in September. He has limb onset ALS. It will be 3 years in May since he was diagnosed. He gets by each day by taking it one step at a time. He tries to live in the moment and enjoy it to the fullest instead of stressing out on what the future might bring.
It sounds like you have a loving family and deep faith. That will help you tremendously on this journey. Hugs, Kim
 
Thanks Kim, Your oh so right. Somebody once said that "God gives each of us a perfect day at one second after midnight, and from there it is up to each of us, what we end up doing with it". I've been doing my very best to make each and every one Great. I know full well, even with this crushing blow I've received, compared to so many, (with and without ALS) I am blessed beyond measure. My mission is to die well, and exemplify to all who come into contact with me, that through Jesus, even this journey is good.
 
Wonderful advice. I've already begun working (while I still can) in preparation for my end. Since I'm a hands on kind of guy, believe it or not, last week I got done making my own cowboy style pine box. Glenn

I love the idea of a simple burial. I would even prefer to skip the pine box and just be left in the woods to decompose into the soil. And probably provide a few meals to the critters and bugs on the way! But that option is closed these days. Maybe I should donate my carcass to one of those "Body Farms" where Forensic students learn about decomposition!

Mr. Handyman, now that you have your final piece of "equipment" ready, may I suggest working on some projects that will make caring for you easier for your wife? If you have a two-story house you need to plan for a bedroom or two on the main floor. Stairway lifts are short term solutions, and elevators are seldom affordable. Wheelchair ramps are the first thing, but having a bathroom you can get a power wheelchair into is next. A roll in shower isn't all that necessary but an overhead lift system will keep the need for a commode or bedpan at bay for a long time. A second lift over your bed will be invaluable to her! Widen doorways. Make sure she will have a place to sleep that will be near you if being in the same room makes it hard for her to rest.

You have a lot to do before you use that pine box!
 
You have a lot to do before you use that pine box![/QUOTE]

WOW......Your right, the more I learn, the more I see I better hurry up! Sort of like the ol' ant and the grasshopper fable! Also reminds me of that Brad Pitt Movie. Like Benjamin Button...I'm turning into a helpless infant. I want to do everything I can possible do to make it easier on my wife for those days.
 
As Nikki says, you should record your voice while you can. I am reading books for my granddaughters, and hopefully other grandkids form our other kids. I am using a simple Olympus device that has a removable SD card. I am in the middle of The Lion, The Witch and the Wardrobe. I wanted to do all of the Chronicles of Narnia, but that isn't gong to happen.

Doug
 
Hey Doug, I love your idea about reading for the kids. Afraid my voice is already too far gone for that. People can still understand me...but in order to communicate I need to speak very slowly. My big problem is if I get emotional, something happens in my pallet I guess...that makes it impossible to talk. It's really down right pitiful....like an animal crying in pain.

I am leaving a legacy however. I finished one book already. An adventure story of a survival ordeal I had in my late twenties. I just sent it off to be hardback bound and will give a copy each to my loved ones. I'm working on a second....the love story of my wife and I.

After that, it's my intention to write one about this journey I'm on. I've been wondering if doing so might end up being part of the plan I know God has for me?

At least I figure writing beats watching the news and the miserable state our country and world are in all day long.

Take care....God bless. Glenn
 
Even just a few sentences. Even if it does not sound like you.
We did not record my mom. Someone found an old home video with a few barely audible words last year. It meant so much to me.
 
welcome cowboy, i am also new to this nightmare. also have a farm and must start to give up the chores to others. i hate not being able to do things with my hands and legs but that's the way it is so i ask for acceptance every day. getting all the details in order is good as i have done the same as you. it should help our families later on. frustration is my down fall when i let it reign i actually feel the disease surge. staying calm and positive helps best. hope to hear more from you cowboy. later chally
 
welcome cowboy, i am also new to this nightmare. also have a farm and must start to give up the chores to others. i hate not being able to do things with my hands and legs but that's the way it is so i ask for acceptance every day. getting all the details in order is good as i have done the same as you. it should help our families later on. frustration is my down fall when i let it reign i actually feel the disease surge. staying calm and positive helps best. hope to hear more from you cowboy. later chally


Hello Chally, Sure sorry to find either of us here. A sad place with so many wonderful people. That's the hand we've been dealt however. I fully understand why "fits of crying" are considered a symptom of ALS. It would seem abnormal to me if folks like us, who are forced to ponder our mortality during every waking hour wouldn't give in to waves of depression. I'm awful new at this. Up until four months ago I thought I'd be recovering from a Crestor induced muscle myopothy. But no. I sure wish I had an answer to our universal delema concerning positive thought....but I sure don't.

Personally, leaning on my faith works best for me. When I pray, I don't ask for a miracle of recovery. I'm letting my family and friends do that. I ask the Lord for the strength and courage to face his will with dignity and strength. Then I try as hard as I can to try and remain pleasing in his eyes, remembering his promise to us....and knowing where I'm bound.

Yep, it's hard not doing the stuff I'm so used to....just the other day a grabbed up one of my favorite geldings who needs a clipping. I hobbled up to the barn with him and grabbed my shoeing tools. Even lifted up his front leg before I realized my left arm isn't strong enough to trim him. That stuff hurts. Keeping the sunny side up under that set of circumstances taxes me sorely. But.....what are ya gonna do?

We all just need to hang in there. God bless us all. Glenn
 
>We all just need to hang in there.

Ditto that! together!
 
Status
Not open for further replies.
Back
Top