I also wonder if my slow progression is picking up its pace. Lynne gave voice to this thought the other day, after my pity party. The left hand and left foot changes being so noticeable make us wonder if perhaps the progression is changing a little. God, I hope if it changes, it gets slower, not the opposite.
I've also been thinking it might be helpful for you to see some of what I see daily, which alternately lifts and lowers my feelings. The PLM forum is full of useful, if not pretty, information from PALS for PALS as we make our way. So, without further ado, some highlights (both recent and of particular interest to me). NB: These are unedited and, except for the first two, unrelated to each other.
"My arms are slowly starting to weaken and lifting a fork to my mouth is getting harder. I love sandwiches and burritos etc. It is easier to eat with two hands. What I was wondering was how do you eat when you can no longer lift arms to mouth, but you can still swallow?Are you limited to people feeding you? Can you still go out to eat?"
"I have crossed that threshold and cannot feed myself anymore. While I am home visiting, my mom feeds me. We go out to eat with no problem. Just last night, we went to Outback and I had an awesome center-cut fillet, medium rare, loaded baked potato, and a beer. When I return to Boston next month, I'll have no one to feed me and will have to rely on tube feedings. Worse than having to be fed is giving up eating."
"Yesterday saw yet another fall for Dad, he's getting worse, his speach is nearly gone he's getting stiffer and lossing more and more upper body function. Saliva is an issue and depression has hit an all time high, not only for him but for everyone around him. This christmas came and went, and yet again I found myself looking at the man whom I used to stand in his shadow, now that this big strong influential mountain of a man has been reduced to a husk of a being that is constantly staring out the window lamenting what he once was. This man, my hero and father whom I never once saw cry now just dribbles away the day crying at the state he has found himself at. My mother who is 70 spendes the day caring for her husband. Now at the end of their lives when they should be laughing and playing with their grandchildern all she does is dress bathe and wait for the next failure in body function when she'll have to wash and clean him, now she feeds him and has to treat him as an infant, and she constantly wonders what they have both done to deserve this?"
"Condom catheters may be more comfortable for him than adult diapers."
"I fell twice in two weeks. First fall came from trying to transfer from scooter to wheelchair. I use the scooter to walk my dog. After trying to get up on my own for an hour and completely exhausted, I spent the next hour trying to retreive my cell phone to call my wife at work. My tailbone still hurts from the fall. This morning I fell while on the toilet. My caregiver was late and the phone rang, so thinking it was her, I got up to reach my phone and my feet slid out from under me so there I was on the floor with my arse exposed and my pants down around my ankles. Lucky for me the call was from the company my caregiver worked for and they sent someone right over to help me up."
"I had a bad day, yesterday. I try to live my life with positivity but this ALS thing tests every bit of me, mentally, emotionally, spiritually and physically. I've had thoughts of whether death would be the best decision but I couldn't kill myself if I tried and I'd never be able to put my family through that and yet, I don't want to put them through watching me turn into a quadraplegic. I've decided to have a PEG inserted because I'm losing weight and that's no good. Everyday it seems my mind changes. I ask those with this for 5+ years, do these thoughts ever cease? Do you even have these thoughts?"
That's plenty. Does that give a little insight into what fills my head?
No comments:
Post a Comment