Bulbar ALS

[Tomswife]

Richter. Sorry you were ill and then had to retire before you had planned. Take time to reflect, look into volunteering, hobbies, sports, and walking.

ALS is like a whack in the head. Unplanned retirement can feel like you woke up one morning and found yourself in a boat. Drifting. Unmoored. But you have your inner compass, and your unique spirit to live as best you can and enjoy life. Dont focus on doing. Focus on being. You will find small joys in each day.

There is a website
Onlyinyourstate dot com
That has articles about places to visit in your home state. When you feel like doing something.

 

[Tomswife]

I have been thinking about vulnerability. Having stumbled upon the work of Brene Brown. There are many aspects of vulnerability that she teaches that may be applied to living with ALS.
Some quotes I find helpful.

"Vulnerability is not weakness, and the uncertainty, risk, and emotional exposure we face every day are not optional. Our only choice is a question of engagement. Our willingness to own and engage with our vulnerability determines the depth of our courage and the clarity of our purpose; the level to which we protect ourselves from being vulnerable is a measure of our fear and disconnection.'”

“There’s a crack in everything. That’s how the light gets in."

“Yes, we are totally exposed when we are vulnerable. Yes, we are in the torture chamber that we call uncertainty. And, yes, we’re taking a huge emotional risk when we allow ourselves to be vulnerable. But there’s no equation where taking risks, braving uncertainty, and opening ourselves up to emotional exposure equals weakness.”

 

[SeaGunny]

My wife was diagnosed in January 2021 after seeing specialist all over the state of Texas. I am also reading over this thread. Prior to her diagnosis, she thought it was Acid Reflux and one doctor told her, from everything the doctor knew, it was all in my wife's head. You have a tough road ahead, Prepare now and gird your loins. It does not get easier. God Bless. If I can somehow help, I will try and give others some issues that I have tried to overcome.