My Recovery Plans Come to the Rescue

Dagmar Munn avatar

by Dagmar Munn |

Share this article:

Share article via email
living well with ALS | ALS News Today | Banner for

If you happened to read my column last week, you’re probably thinking I’m writing this while sitting on a sunny beach, gazing at the ocean, and sipping a tropical drink with a little paper umbrella in it. That’s because I wrote about my busy month filled with ALS-related events, from getting bloodwork at my local lab to a long afternoon at my ALS clinic.

I also shared how after each event, I’d be depending on my recovery plans to help me feel refreshed and renewed. While there’s no ocean view in front of me and I’m doing my relaxing at home, I’m glad I built this downtime into my calendar. It’s given me valuable time to reflect and set new goals.

How did the clinic visit go?

It’s been six months since my last trip to the ALS clinic, so when all was said and done, I felt relief when my neurologist announced “no change.” In ALS-speak, no change is a good thing. My high scores, along with her assessment, meant the past six months of my daily exercise and self-care were worth the effort.

Plus, since this is my 12th year of attending these clinics, I was looking forward to seeing the familiar faces of the staff. Over the years, we’ve gotten to know one another, and we’ve enjoyed discussions about all sorts of things and shared many humorous moments.

Recommended Reading
pediatric ALS | ALS News Today | illustration of clinical trial

FDA, Amylyx Meeting to Review AMX0035 for Possible Approval

But time marches on, and I found a few new clinicians there as well. It seems the pandemic has motivated several of my buddies at the clinic to opt for early retirement. Others simply moved on to employment elsewhere.

While trying to remember the new names surrounding me, I made an effort to let each one know I was an ALS patient who came with an open mind and a positive attitude. I was there to listen and learn.

What am I doing now?

The past few days of self-imposed R & R have been good. Besides letting my muscles recover from all the push-pull and lift-and-lower tests at the clinic, my mind is busy reviewing all the suggestions the clinic staff gave me. I’m also setting new goals.

For example, I have several new exercises to improve my hip strength, specifically my gluteus medius. I have yet to figure out how to incorporate these exercises into my current routines. Plus, I need to be more diligent about doing my breathing drills.

Hey, let’s agree, those breathing drills are boring! More than once, just before dropping off to sleep at night, I’d think, “Whoops, forgot ’em again.” But I’ve made a promise to myself to do them as directed — I promise.

It’s a good feeling to have these major events in my rearview mirror. And although I don’t have an ocean view, I can pretend. I’ll just click on the tip I shared in this column and enjoy the view from someone else’s window. It’s one more way we can learn how to live well while living with ALS.


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, and are intended to spark discussion about issues pertaining to ALS.

Comments

LIZ avatar

LIZ

MY SISTER HAS BULBAR ALS AND HER CLINIC TELLS HER NO EXERCISE

Reply
Dagmar Munn avatar

Dagmar Munn

I'm sorry your sister has Bulbar onset ALS. And that's also unfortunate that her clinic is advising her not to exercise. Over 10 years of research on ALS patients has shown that moderate, gentle exercise is beneficial for ALS patients... and can even help slow down the progression of symptoms. However, her doctors and clinic staff may know of other conditions she has that preclude her from doing exercise. Or, you may opt to share with them this column I wrote about how I fit movements into my day: https://alsnewstoday.com/columns/2019/11/12/movement-exercise-daily/
My best wishes to you both. Dagmar

Christine avatar

Christine

I’m a little lost as to what exercises and other self care activities I should be practicing each day. Can you share a little bit about what you do each day?

Reply
Dagmar Munn avatar

Dagmar Munn

Certainly! Here are two of my blog posts to help get you started:

My Tricks for Adding Movement to My Day

With ALS, Self-Care Isn’t Selfish, It’s Essential

Elizabeth Sheridan avatar

Elizabeth Sheridan

My apologies if I offend anyone, that is not my intention. I absolutely love my Neurologist and staff at my ALS Clinic, and have certainly gained knowledge on these visits. However, Dagmar, you stated it perfectly, the recovery time after the visit is tremendous. These visits can sometimes last several hours in the clinic, and I question are they really worth it. For me, I have now started virtual online visits (by product of the pandemic) with my clinic. Speaking for myself, these zoom virtual visits work great for me, but certainly may not work for other PALS on navigating through this disease. I still get to enjoy seeing all the wonderful Doctors and staff, as well as possibly gain some new knowledge. And when finished with my appointment, having it in my rear view mirror feels good.

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.