During my first year living with ALS, I spent a lot
of time researching and learning whatever I could about the disease. I came
across long lists of medical equipment that patients like me could expect to
use when ALS symptoms progressed.
...Books written by medical experts with in-depth
explanations of the effects symptoms had on the body.
...And patient blogs sadly chronicling the progression of
their own ALS symptoms.
At the time, nothing addressed my burning question: “What can I do right now?”
Through much trial and error, plus connecting with like-minded ALS patients around the world, I developed a personal plan that worked for me. It’s one that I believe can be of help to you, too, no matter if you are newly diagnosed or have had ALS for the past few years.
My plan follows a thought process similar to what goes into preparing for a natural disaster. We hope they don’t happen, but if a hurricane, flood, fire, and yes, even ALS symptoms are on the way, advance preparations are advisable. Preparation is important, but so is holding on to the mindset of prevention.
ALS symptoms progress differently for each person, and we may not be able to prevent the inevitable, but there’s a lot of research pointing to ways to slow down symptom progression. So, I included these in my plan as well.
The 1st step: Prepare
I began by drawing a line down the middle of a sheet of
paper, and on the left, I listed all the areas of my home that I used. My list
included the bathroom, bedroom, dressing area, kitchen, entry doors, and even
transportation.
Then, for each area, I asked the question, “What if?” As
in, “What if I had trouble walking, balancing, or standing? What if I had to
use a walker or a power chair, or relied 100% on a caregiver in order to use
this space?”
As I thought of possible answers or solutions, I jotted them down on the right, next to the area in question. These were the modifications or changes in that area that needed to be made (short-term and long-term) to prepare for the eventuality of my ALS symptoms progressing.
For example, my husband and I decided to install grab bars in the bathroom. We also added an ADA-height bidet toilet and remodeled the shower area to accommodate a roll-in shower chair. Next, I added a chair to the area where I dressed, and I moved all the clothing I wore most often to be within easy reach.
In the living room, side tables and chairs were spaced to allow easier access for a rollator to move through. Then, I moved my laptop computer from a small space in our office area to the dining room table. This gave me more space to have a rollator nearby, plus, I could sit on a sturdier chair. And so on. We continued making small changes throughout our entire house.
Over time, I’ve really appreciated the various modifications we had made early on. They helped ease my anxiety as my symptoms progressed and made the transition to using a rollator much easier.
The 2nd step: Prevent
As I mentioned earlier, research exists on ways to slow down ALS symptoms. These are so simple many patients overlook them entirely, but I encourage you to include them in your daily routine. I followed four strategies and wrote about them in more detail in a previous column on ALS News Today.
·
Medication: Follow your doctor’s
advice and take all prescribed medications.
· Mindfulness: Practicing mindfulness has helped me feel that I am in control, have more awareness, and am moving
safely.
·
Motion: Moderate exercise can improve
life span and ease ALS symptoms.
· Mood: When I notice that I’m having
trouble coping with change, I ask myself what has changed, what I need to do,
or who can help me.
Now, 13 years later, I’m still researching the latest information on ALS, but I’m doing it with the knowledge and confidence that I’m prepared for future changes — and doing what I can to slow down those changes. Take a test run with my plan, it just might be a perfect project for you whether you’re newly diagnosed or, have been living with ALS for some time.
My wish for all my readers is: Let’s keep learning to live well while living with ALS.
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FOR MORE MOTIVATION ON THIS TOPIC, I SUGGEST THESE POSTS
Mental Space (and closet Space) https://alsandwellness.blogspot.com/2015/03/mental-space.html
Banishing My ALS Thought Loops and Living One Day at a Time https://alsandwellness.blogspot.com/2022/08/banishing-my-als-thought-loops-and.html
And, check out my index of over 100+ posts: https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html
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| Dagmar Munn ALS and Wellness Blog |
Keep calm and plan on
Anonymous
A version of this post first appeared as my column on the ALS News Today website.
Hi Dagmar, I just have to comment and tell you you are one of the most positive people I have learned about since my husband was diagnosed with ALS January of this year. His wife of 36 years as well as his caregiver, I love all the positive things you post about living well with Als. I am familiar with a disease because my uncle died from it 21 years ago, and he lived with it for over eight years when there was only religious zeal available. Unfortunately, my husband, no relation to my uncle won the lottery and happens to have an a Ataxin 2 gene mutation. and although people that have that one gene mutation do not always get ALS. He was one of the unfortunate ones that did. As his caregiver, I look forward to all the positive things with ALS because sadly, there are so few of them so I appreciate reading all the positive articles that you write and I thank you thank you so much because it helps me bring some positivity to him, he unfortunately looks at things like a glass half empty and I look at a glass half full it’s all in perspective again, thank you for your wonderful articles.
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👏👏👏👏👏👏
ReplyDeleteHi Dagmar, thank you for the positive aspects you are bringing in even in the difficult situation. I am newly diagnosed. My doctor says Radicava is not doing anything much , so he left the choice to me whether to go for it or not. I am completely new to this and request your suggestion.
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