From the Desk of Linda's Voice Blog Desk: Living with ALS

 

Living with ALS 

It's no fun.  You lose a lot,  actually you lose just about 99% of things.  Lose family and just about all your friends.   It's a very lonely life.

Family:

You can lose family.  For example son who is married.  Wife don't want husband taking care of his mom cause he's a Christian and his wife and family are first on the list.  His family on the bottom on the list depending on if she likes your mom and siblings, etc.  Same beliefs,  same politic, etc. also becomes an factor.

Daughter can lose too if she strong enough for the challenges.  She can vent to her family, friends about you but if she finds out you vent to someone closer to your age about her your feelings and frustration about her cause you accidentally sent her the text meant for your friend.   Oh boy!!  Hard for the daughter to care for her mother, terminal illness mother.  So it can go good or go bad.  She's always right, your always wrong,  that's why I made it to 70 yrs old!  You are passive aggressive,  your manilative, that's why your son don't want you in his life, okay for her express feelings not okay for you, etc.  So ANGER, FEAR comes in arguments. Be careful in giving the power to attorney to your kids, boy they can the power to hilt.  You have no life but they make sure they have a life and do things that you wish you do and is taken away from you.  Depressing living in your bedroom 24/7, etc. only tv to watch.  Don't have friends to pay me a visit while your family does, etc.  Miss my independence,  my freedom,  no one telling me what to do, Living in your own place doing what you want, etc.  No one listens to you.  ALS takes your voice away.  Sure you have other ways to communicate but it's not the same with using your voice.  Still not being listen to. 

Friends:

You lose your best friend cause they married, don't have time, etc.  They slowly go away, etc.They get busy and have other friends that are more fun and no health issues.  They say you in their prayer, let me know what I can do for you, etc.  When take them up on it you find they have excuses.  You find most people are selfish, etc.  I am a very empathetic person.  I  care too much, I give to much of me, think of others over me, and so on.  It's a curse. I try my best to good friend etc.  I am not perfect but will do my dames to be better.  That isn't always enough for other people.   Your true intentions with your heart not enough. 

Now I see how depression and suicide can happen.   I am feeling it.  I am not getting a quality of life whatever left of my time.  Only way anyone understand is to go through what you are going through.   Be in your shoes, etc.   Then it is too late.  Sucks being a burden.  I even reaches out to Bill Winch, a religious man, a Mormon, etc.  I  vented out my feelings did I hear back nope.

I lost my positivness, my faith in God, my faith in miracles,  God abandoned me, probably mad at me etc.  Somehow I keep hoping why heck if I know.  I keep getting knocked down when I do.  

THIS IS LIVING WITH ALS LIKE