Is ALS painful?
ALS usually isn’t painful, but there can be pain/discomfort caused by secondary conditions such as muscle spasms, immobility, etc.jjbb
What do you miss most?
Soo many things! Simple pleasures, like babysitting my grandkids, going on a walk with my husband down our country lane, hand in hand. But I think what I miss most is being able to hug my loved ones!
Do you still get out much to do things?
Not a lot, but we are blessed with a handicapped accessible conversion van and my wheelchair locks right in the front passenger side. But it’s a chore to go anywhere! Usually just an occasional trip to church, or doctor’s appointments. I’m most comfortable in bed.
Who cares for you?
Mostly my amazing husband and two daughters. But we have two nurses that help us four days a week. I’m blessed with a wonderful family and caregivers!
What has been most challenging for you?
Everything! Each progressive loss was a challenge. But loosing the ability to swallow my saliva and dealing with constant drool has been especially difficult. I can’t swallow, but have had to swallow a lot of pride!
You said life expectancy is 3-5 years, but you’ve had it 6 years. Is that uncommon?
When someone chooses to get a trach and ventilator they can live much longer, barring any complications. Yes, I’m thankful I’ve passed my “expiration date”! I’m thankful for each day and only God knows the length of my days. I’m in His hands!
What have you been learning about God through your trial with ALS?
SO much! ALS is teaching me that God is trustworthy. When we rely on God daily we can experience the fruit of trust. And one of the best places to start is by deciding to declare our God is trustworthy, not determining his trustworthiness based on our circumstances. (So much more of what I’ve learned is weaved through my blogs!) Living, Moving and Being Blog Post
