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I love it when all of my planning unfolds exactly as expected, and at the end of the day, I can pause to exhale, smile, and tell myself, “That went extremely well.” I wasn’t always an avid planner, but I&#8217;ve become one. Planning is just one of the <a href="https://alsnewstoday.com/columns/strategies-improve-emotional-well-being/">many strategies</a> I now use to help me live with my <a href="https://alsnewstoday.com/what-is-als/">ALS</a>.
Occasionally, however, life throws a few speed bumps onto my path, and I’m forced to employ a different strategy altogether — to improvise!
Fresh in my mind is the holiday buffet we recently attended at a fancy-schmancy local hotel known for its lavish events. My husband and I went there for a Christmas Day meeting with several relatives we hadn’t seen for years. We both looked forward to it, and of course, I dove into a planning frenzy.
My clothes were selected several days ahead, I mentally timed out the sequence of getting ready so I wouldn&#8217;t feel rushed, and on the day of the event, it all seemed to be coming together like clockwork.
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<h3>A musical surprise</h3>
Arriving at the hotel, we met up with our relatives and found our table in the big ballroom that was already bustling with other diners. While chatting and sharing family memories, someone at our table complimented me on my speech. They were aware of my <a href="https://alsnewstoday.com/symptoms-of-als/">ALS symptoms</a> and told me that my pronunciation was very good.
My mind quickly recounted all the months of daily practice I’d put in to improve my <a href="https://alsnewstoday.com/speech-problems/">ALS dysarthria</a> — all the breath work, posture control, and repetition of sounds and words. Mentally, I gave myself a generous pat on the back.
But then, suddenly, the background music started up. Oh, my!
The lone musician had been on break when we arrived. Now fully rejuvenated, he energetically strummed his acoustic guitar, noisily filling the ballroom with jazzy selections from the &#8217;70s and &#8217;80s.
People around me didn’t seem to mind; they began talking louder, something I couldn’t do, as I was already at my full volume. Dismayed but not deterred, l improvised, adding facial expressions, big gestures, and creative body language to my words.
And you know what? It worked. I didn’t feel self-conscious, and those at my table seemed to appreciate my extra effort.
<h3>Buffeting the buffet line</h3>
It was soon time to fill our plates with holiday food. I learned long ago that riding a mobility scooter among people in a buffet line just doesn’t work well. It’s better that I stay at the table while my husband kindly fills a plate and brings it to me.
Planning for this event included checking the hotel’s website for its holiday menu and coaching my husband on the various selections I&#8217;d like to have.
A well-laid plan. Or so I thought.
The melody of the Eagles&#8217; &#8220;<a href="https://www.youtube.com/watch?v=09839DpTctU" rel="nofollow">Hotel California</a>&#8221; filled the room while I patiently waited at our table. But my husband returned with a frustrated expression and an empty plate. “They don’t have any salmon or mashed potatoes or Brussels sprouts, or that other thing you wanted. What should I do?”
Maybe they changed the menu, or maybe they ran out of my choices. Either way, I gathered my courage and promised myself to keep an open mind.
Slowly maneuvering my scooter toward the buffet line, I carefully avoided wayward children and distracted adults. Well-polished toes in sandals came dangerously close to being run over by my scooter’s wheels. As I peeked between bodies hovering at the dishes of food, my husband and I worked as a well-practiced tag team. I’d point to a steaming chafing dish, and he’d dash in to scoop a spoonful onto the plate he held.
And you know what? The food was great. The whole day was fun. As I fell asleep that night, I sighed and said, “That went well.”
That’s the thing about planning. I’ve learned it can help and bring me peace of mind. But I always have to be ready to improvise. It’s the same with ALS. Prepare, but be willing to go with the flow if ALS symptoms change. That helps me learn to live well while <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Improvising to go with the flow while living with ALS

My husband, Todd, is paralyzed because of <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, so I transfer him from bed to wheelchair, and from wheelchair to the toilet, using <a href="https://www.youtube.com/watch?v=Zie_EMU6LnI">a sling and overhead lift</a>. This morning, as I moved him from his bed to the wheelchair, he told me, “My fingernail is cutting into my hand.” I separated his hands and continued the transfer.
Multiple times a week he gives me or one of his nighttime caregivers similar feedback. “My finger is bent.” “Straighten my wrist.” “The sling is caught on the headrest.” At times, he&#8217;s communicated to prevent significant injury, as when he points out that the sling&#8217;s straps are not properly secured to the lift.
He&#8217;s expressed concern that he’ll get hurt during transfers if he can’t talk.
<h3>Preparing for communication concerns</h3>
To stay one step ahead of his disease progression, I try to track down equipment before Todd needs it. It&#8217;s best to start the process of ordering a wheelchair before a fall, and to plan for an accessible home and bathroom before total paralysis.
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A couple years ago, after Todd’s voice weakened, I was concerned that he wouldn’t be able to call me at night. Although he can’t press a button with his hands, I found the <a href="https://enablingdevices.com/product/twitch-switch/">Twitch Switch</a>, which could be taped to his forehead with the wire leading to a doorbell. He could thus activate the switch by raising his eyebrow. He hasn’t needed to use that yet, as he can still speak to call me or ask his Echo Show device to call me on our home telephone.
I know that people who’ve lost their ability to speak can use <a href="https://abc7chicago.com/eye-gaze-technology-celebrating-abilities-device/5703479/">eye-gaze technology</a> while in a wheelchair or even in bed, but I didn’t think that would work for our communication during transfers.
I asked for other ideas on an ALS Facebook forum. Most caregivers who responded have learned to pay close attention to hands and feet. Someone suggested using a voice amplifier, which could work as long as a whisper of a voice remains. Others use flashcards with various statements, and they ask yes-no questions to narrow down and select what the person wants to say. Someone with ALS who&#8217;s lost the ability to speak expressed frustration at having to make a noise and then hope the caregiver could guess what&#8217;s needed. Every transfer feels risky.
Thinking about future progression with ALS, including worsening communication, is overwhelming. I&#8217;m reminded of the anxiety I felt in the first few months after Todd’s <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a>. I couldn’t sleep as my mind raced with worry.
A counselor encouraged me to focus on the present and to train my mind to live in today. I got to the place where I could sleep again and function to take care of <a href="https://alsnewstoday.com/columns/preparing-children-deal-grief-diagnosis-parenting/">the kids</a> and Todd, but I had to learn to balance the counselor’s advice with making necessary preparations for progressive disability.
I have <a href="https://alsnewstoday.com/columns/preparing-respiratory-emergency/">flashcards ready</a> in case of an emergency, but they&#8217;re cumbersome to use, and I haven’t found a great solution for communicating during a transfer. Unfortunately, not every problem has a solution.
I&#8217;m trying not to dwell on it. Some people with ALS lose their voices, and others can speak in a whisper until the end. Todd might be in that latter category. We don’t know what&#8217;s going to happen, so I&#8217;m trying to take the words of Jesus to heart when he said, “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own” (<a href="https://www.biblegateway.com/passage/?search=Matthew%206%3A34&amp;version=NIV">Matthew 6:34 NIV</a>).
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Tag: planning

Improvising to go with the flow while living with ALS

Planning for future ALS progression while not borrowing trouble