This is double-pronged, Reader-land. So, you know how I’m sick and all that, and everyone gets sentimental around the holidays. So I thought I would just update everyone.
First off, let me just share how awesome Mel is. As I progress, her workload goes up. And it’s not an easy action. Do you realize how hard it is to put clothes on an adult in a wheelchair? What about making sure he doesn’t drool everywhere while dressing? Getting up on a Saturday to get me up because I woke her up? Crushing pills, picking my nose, giving me showers and preventing me from falling as we transfer chairs, and wiping my eyes. I am completely dependent on Mel, even more so than the kids! They can feed themselves! So a huge thank you to Mel for showing me what matrimony is all about!
Secondly, I have had some weird realizations with ALS. One, you do not lose feeling anywhere. You feel everything. You have to train yourself to ignore itches and stuff, and if something catches the bottom of your foot, all the muscles spasm. Two, things hurt that you don’t expect. Seriously, why do my hips hurt? And one thigh is always in pain. And three, things are really tiring! Just holding my head up to type, or trying to interact with people, or even worse trying to talk without Tobii, it’s tiring!
Because of increasing pain, a palliative care specialist came out, and she was great! She listened, and came up with a medication plan for me. Unfortunately, I reacted poorly.
My stomach is still in knots, and I now have painful stomach gas, the pain got worse, and so we discontinued two of the meds. The third is helping me with saliva, so we are keeping that one. Oh, and palliative care is not hospice, ok?
Otherwise, I am progressing. Nasal drainage in the back of my throat makes it hard to breathe. My right arm is weakened so I can’t drive Lively. I can’t hold my head up for very long. My hips, thighs, and back always hurt, and my breathing is shallow. I’m not complaining, but instead sharing valuable information for those who may follow!
They never tell you what to expect. Oh, every case is different, but every time we call up it’s like they are checking a box of anticipated symptoms. “Oh, hips hurt? Yeah, that is normal.” So I am sharing my symptoms with the world so that anyone can learn what to expect. How noble of me.
Otherwise, I’m in trouble. This marks the first medicine that I have agreed to that I did not ask if it could be taken with alcohol, and I didn’t care either. That must mean I’m further along than I thought! When I no longer ask for something I enjoy because I need to dull the pain, something is wrong!
Back to regularly scheduled hijinks after this. I still have letters to write!
Joe's ChronicALS 
Thanks for the update. I hope there are other meds to try, and that you’re up to it. Still catching up on the last meditation post.
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Joe, thank you for giving me a picture of what you are experiencing. I wish I could have known what to expect when my son was handed back to us after being diagnosed with brain damage at three months of age. He would have seizures and pass out in my arms, turn blue and then grasp for breath. When his ribcage started to look like they would break through his skin the doctor told me not to worry it was only due to his spine becoming out of shape, I know what it is to change an adult, bath and feed an adult because I worked as a care giver. I understand but I think you are a very courageous man that God is using you just for this, Our son lived for six years and God taught us what love is.
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Hi, Joe! You do not know me, but I sure know you. Thank you for sharing about life with ALS. My friend, Lisa, showed me your blog. I helped care for my dad for four years until ALS finally got him this past March. Those were hard years, but the most amazing, as well. I can say that because Jesus walked alongside me. Dad did not share a lot about his physical challenges (how did he ignore those itches?!?!) … he just boldly pushed through it while humbly accepting any and all help! The picture of meekness.
Just like you.
I feel closer to the dad I miss whenever I read about how you are living with ALS. Part of me wants to run away from that “season” of life and avoid blogs like yours. I hope to never confront ALS that closely again, yet I am forever changed because of my dad and how he lived a full life knowing his body was failing him daily.
I am babbling.
Thank you. You are one of my heroes.
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I cannot agree with this last enough….”Thank you. You are one of my heroes.”
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Thanks, Joe. These posts paint a picture. thank you and Mel for being a wonderful example to us all.
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