A nice weekend has slipped by. Monday has dawned cloudy. Paul is at work. Caroline is in Helena for Closeup. I just heard Dolan stirring at 9:30. I've listened to NPR news, played Words with Friends, Trivia Crack, and Candy Crush. (My achievement? Passing a level I was stuck on for months.) Now I'm listening to classical music on Yellowstone Public Radio.
On NPR, they had a segment on standing desks, and saying the science wasn't conclusive that these desks were important, but that sitting no longer than 45 minutes duration was the key to health. Really. And here I have been lying in the same position since 9:45 last night. 12 hours. Hopefully soon to get ROM and out of bed to sit in my powerchair for the day. So clearly I am on a unhealthy path.
I could have gone to Helena for Youth of the Year events today. I just didn't have the energy to plan ahead for a long day of meetings and an evening at the Governor's residence. I used my connection with Steve and Lisa to secure the location and Lisa as a judge, but a long day away from home intimidates me now. Still, I am a bit sad at not making the effort, as this will be the last time for me.
I think that is my hardest challenge: deciding what I really don't have energy for when I know I will not likely get another opportunity to do something. The annual Mansfield-Metcalf dinner this past Saturday was another event I opted out of due to not wanting to be at a dinner I couldn't eat and where people would have talked to me a lot and expected me to converse with them.
But this means I am isolating myself. There is no going back on this, as my energy will decrease as the disease progresses.
What if I could just get up and go to work? That would be such a treat. Even on a gray Monday morning.
I'm so sorry you have to go through this my friend. I'm glad you shared your posts, they sure make me think. I am praying for you. Please remember I live close by, so if you need anything, message me. I love you!
ReplyDeleteFrom Chris Parsons
DeleteLove you too, Chris!
DeleteI am glad you had a nice weekend!
ReplyDeleteI truly wish you were able to get up and just go to work as wanted!
I so hate you like ALS and I hate that my sister has also!
She is getting a 2nd opinion in April, she lives in Nova Scotia and will be visiting her son in London, Ontario around the end of April and will see supposedly one of the best neurologist's in Canada.
I am praying she could have something else as I have seen a few miracles happen with my husband when he was gravely ill twice in his lifetime!
I will keep you in my prayers!
Thank you, Margy. I hope your sister gets good news.
DeletePam my name is Ramiro (Ram) Barrera. I was diagnosed w/ALS 8/29/12 then again on 10/31/12 (like once wasn't enough). I was healthy my entire life with maybe a cold every 5 years. I was/am pretty tough guy but ALS has made me tougher... Your blog came to me via Facebook, you appeared to be positive at first but not so much anymore.
ReplyDeleteI'd like to share story that convinced to make adjustments unlike most I want to live years not months, I have a 12 year old I want to stick around for college graduation, walk the isle maybe even meet more grandkids.
I resisted cane, walker, wheelchair, peg tube, AVAP even hospital bed. My doctor compared me to a boxer that doesn't train to fight although works out everyday, the minute he gets in the ring he's knocked out. He lacked preparation to fight, I was doing same thing going against ALS and ALS was going to win.
I got peg and gained 24 pounds in 6 months just by adding whey protein shakes via peg to my regular diet that I still enjoy eating by mouth.
I got wheelchair and stopped falling then started using AVAP at night for breathing and I had more energy all day long. I even started using my Tobi to communicate with now I have a voice again, text, phone and email too.
Sure I realize my inevitable defeat but not going down without a fight.
I'm nobody to judge or question your decisions however live up to your title, "each day is joyful". Newly diagnosed pALS need joyful news not end of the world, the sky is falling reminders!!!
I'm not sure if I'll find my back to read any reply you may have so here's my email if you're interested in contacting me ...
barreralsrb@sbcglobal.net Best to you and your family
I'm sorry you don't feel I'm living up to the title I chose as a newly diagnosed PALS. I try to be positive each day, each second, but I want to be honest about my feelings as my family and friends are my main audience.
ReplyDelete