Planning and Preparing Help Me Live With ALS

Dagmar Munn avatar

by Dagmar Munn |

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Even though I believe I’m a pretty good planner and can strategize with the best of ‘em, last week threw me into a planning frenzy. I was anticipating my first in-person ALS clinic visit after nearly a year of online appointments with my neurologist.

Pre-pandemic, I had many in-person visits under my belt. But now, I was out of practice in preparing for the three-hour visit. Would I forget to bring something important? What would be different this time? Would the clinic team include the same people as before? And what if they told me my ALS symptoms had progressed?

After taking a few deep breaths and making a list, then breaking everything down into smaller tasks, I felt back in control.

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Living with ALS certainly forces us to develop our planning skills. Patients and caregivers alike gain the expertise of choreographing a marching band with the observation of an air traffic controller.

Of course, my planning involves only me — I’m a party of one. Whereas fellow ALS News Today columnist Kristen Neva, one of my ALS heroes, is a caregiver for her husband, who has ALS, plus Mom to their young children. She experiences planning challenges day in and day out.

For me, planning and preparation are essential for not only major activities in my life, but the daily, mundane things as well. For example, due to my ALS symptoms, certain expressions have dropped completely out of my vocabulary — phrases like “jump out of bed” or “throw my clothes on” or “dash out the door.” Even “oops, I need to go back, I forgot something.”

Nope, everything needs to be planned out, laid out, or at the ready.

How did the ALS clinic visit go?

It actually went very well. I knew it would be a three-hour visit, so I brought a drink in a travel mug, dressed for comfort, and anticipated sitting in hospital-grade air conditioning. I always bring a scarf!

Once there, after navigating the new COVID-19 rules at the check-in station, I felt relief seeing the familiar faces of the clinic team. They were their same friendly, helpful selves.

Then, we began the testing: the push, pull, deep breathing, and demonstrating how I could walk the entire length of the hospital lobby with a rollator and wearing my AFOs.

Throughout it all, I realized another phase of my planning was paying off. By spending all those months at home following my various exercise routines and treating my ALS clinic visit like an Olympic challenge, the team agreed that my symptoms hadn’t progressed since the previous year. I was maintaining!

What if …?

Is there room for spontaneous moments with ALS? Yes, but I still have to somewhat plan ahead. My mobility scooter is always charged. I dress in clothes ready for a day at home or a ride out and about.

What if things go wrong? When life throws a curveball, I rely on my mental games. I imagine I’m in a driver’s ed training film, or I’m the action-hero having to face challenges coming at me from the left, right, and center.

Try it yourself

Rather than viewing the planning of every detail as a hassle, try embracing the task. You’ll be doing a favor for your future self, reducing potential stress, and will be less of an emotional burden for those who love and care for you.

You will be expanding your positive living skills and learning how to live well while living with ALS.

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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. 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 Services, and are intended to spark discussion about issues pertaining to ALS.

Comments

Laura Campos avatar

Laura Campos

Wonderful article, I only wish I had read it a year ago.
Laura

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Dagmar Munn avatar

Dagmar Munn

Laura, thank you... hopefully, my other columns have been of help to you...you can access them here:https://alsnewstoday.com/author/dagmar-munn/

Margaret Rhoda avatar

Margaret Rhoda

Dagmar you & Kristen are my heroines. I'm the caregiver for my husband, who has had ALS for 3.5 years now. I am a retired health care worker so l know some "tricks of the trade". Even so, l have to think out each excursion & allow plenty of time. Not easy sometimes!

Reply
Dagmar Munn avatar

Dagmar Munn

Margaret, at least you'll know that you're not alone in having to do mental gymnastics throughout the day ;-) I am high-fiving you across the miles!

Kim avatar

Kim

Hi great advice! Curious as to you exercise regime. I have a very regimented schedule but always wonder about others. Also would be helpful, if you’re willing to share , to know your level of ability …. Helps to relate the exercises you are doing.
Thanks for considering :)

Reply
Dagmar Munn avatar

Dagmar Munn

Kim - - I am happy to share ;-) If you hop on over to my ALS and Wellness Blog, I've written many posts about my exercises: https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html

Basically, I do about 1-1/2 hrs/day - - but broken up into 4-5 15-min sessions throughout the day. 1. Laying on my bed, 2. in a chair, 3. standing, 4. walking on my rebounder, 5. on the floor. Descriptions are on my blog.

Tom Hehir avatar

Tom Hehir

Terrific piece Dagmar. You help to keep me optimistic . I like your problem-solving approach to ALS and will take your advice as I prepare for my clinic visit next month.

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Dagmar Munn avatar

Dagmar Munn

Thank you, Tom. Wishing you a well-prepared and positive outcome clinic visit! ;-)

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