March 3, 2020 at 9:00 am #14674
Keeping with my theme this week to focus on our emotional well-being, let’s look at ways we can find humor in living with ALS.
Hold on! Is there humor in ALS? I think so, especially if you allow your mind to relax, look at situations from a different perspective and even, think about the impossible, improbable, but funny situations.
Humor helps us face the challenges of living with ALS.
In this week’s column, I look at the ALSFRS-R through the lens of humor: Stepping onto the ALSFRS Rating Scale; (you know, those 12 questions we have to answer at every ALS Clinic visit!).
Do you have a funny ALS-related story to share? Whether it happened at home, a clinic, therapy session or just going out and about, we enjoy sharing a chuckle. Let’s help our fellow pALS “find the funny – – even in ALS.”
March 4, 2020 at 11:34 am #14714Cyndi ZachParticipant
I laugh at myself every morning when putting a bra on; I can really work my way into some pretty funny positions.
I also had a good laugh with myself one day trying to pull a hooded sweatshirt on. It was like being in a straight jacket! I really thought for a few minutes I was going to have to call 911 to rescue me. My arms were caught halfway in the sleeves, but I couldn’t get the shirt to move down past my shoulders, and of course, the hoodie was caught over my head and face. All the while, I was standing in a bent over position trying to work my way into it. Even in my feelings of desperation I had to laugh at myself. Needless to say, no more hooded pullovers.
March 4, 2020 at 3:16 pm #14721
OMG Cyndi – – you had me laughing! I thought I was the only one who had experienced a sumo wrestling match with a hooded sweatshirt…..oh, the agony & irony of it all!! 🙂 🙂
March 5, 2020 at 2:24 pm #14732DanDParticipant
~ Cowboy’n For Dummies ~
I retired from my government job in Arizona (architectural designer) where I prepared the construction drawings and specifications for the remodeling of state owned buildings and moved to East Texas (Bulah, TX, 8.4 miles south of Rusk on FM 23) with my “Cowboy’n For Dummies” book 4+ years ago to become a real cowboy.
I had so much to learn and it wasn’t easy switching from a computer to a tractor. I asked a lot of questions, my neighbors were very friendly and my pet cows were very forgiving.
I spent my days pretending to be a cowboy, walking around my small 19 acre ranch enjoying the beautiful rolling hills, creek, large trees, pond, my pet cows and baling the hay. Loving every minute of it there enjoying the simple things.
I really did enjoy my job there though the economic downturn forced me to take a second job. My primary duties, my 1st job was setting on the back porch and watching the sunrise. Then after spending the day in the sunshine pretending to be a cowboy I had to report to my 2nd job also in the same area of expertise, I would move to the front porch and watch the sunset. The job did not pay well and the hours were long but the benefits were fantastic.
No I’m not a real cowboy yet. This cowboy stuff is fun and very hard work but I am getting better at it. According to my neighbors there I was doing the work of 3 men out there on the ranch (That’s right 3 men!) a Moe, Larry and Curly. I’m not sure who those three men are but I am flattered to be associated with what must be 3 great legendary Texas Cowboys.
Moe, Larry and Curly?
Are you a Texan? Do you know who those 3 legendary cowboys are my neighbors associated my skills with?
March 5, 2020 at 3:28 pm #14734richard fredericksParticipant
At some point, all men have the, “oh my God, I’m becoming just like my father” experience. Dad was an only child and the product of the male-centric 40s and 50s. He brimmed with confidence and thrived on the attention that he catalyzed. Asking for things was simply a cultural reflex, as natural as breathing. I was frequently the askee. It drove me a bit crazy and I resolved to never become that person.
But ALS changes things. At 67 years of age I’m comparable to my father at 90. I have become the asker. To properly obsess about this, I maintain a scorecard. I shoot for a maximum of 10 “asks” a day. I even have a “no ask Saturday”. (Generally, I hold out until about 8:30 AM.) Allison, my askee, is frustrated. She loves caring for me. I am actually reducing her sense of usefulness.
My perspective needs to change. Turning into my dad is not all bad. His rearview mirror focused on a life lived well. Nothing but high notes. Ultimately, he was simply a nice guy – the bringer of jokes, the provider of a good word, and completely in love with those around him. Perhaps I can flip the script. It is not too late to be just like the old man. I might even learn to ask for a little help.
March 8, 2020 at 12:25 pm #14748
Richard, you hit the nail on the head! I think one of our other members said, “sometimes I don’t know if it’s my ALS, or my aging body.” You’ve added the question of, “am I turning into my Mom/Dad?”
I don’t think you should compare the reasons why he asked for help, with the reasons why you do it. Big difference.
Yes, asking for help is OK. I think pALS need to remember that it’s the way we ask, that makes a difference: with frustration or with care. Maybe these short post I wrote will be of help to you or our forum members who struggle with the same issue:
March 8, 2020 at 3:35 pm #14749Diana BellandParticipant
Dagmar, thank you so much for reminding forum members of your wonderful column, “How to Coach the Coach.”
My husband and I returned two days ago from a ten day cruise which was enjoyable but physically demanding for both of us. My husband is getting over a bad cold, and we are both in “recovery” mode, i.e. exhausted! Misunderstandings have been occurring and feelings, especially on my part, were getting “easily bruised.”
How serendipitous to find that you had just today addressed the issue of how pALS and caregivers can handle stress! I re-read your column and then read portions of it aloud to my husband. He sometimes hears my “instructions” about how to help me with a task as “criticism,” and I tend to assume he will know instinctively what to do which can lead to irritation on both our parts. He loved your “sandwich” idea, and I promised him I would use it!
We both feel immensely better—-many thanks!
March 8, 2020 at 3:40 pm #14750
Diana, Welcome back! Good news to learn you are home safe and sound (especially during this tense time where cruise ships are “under the microscope”).
I’m so glad my suggestions pushed the right buttons 🙂 Rest up 🙂
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