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“I’ve noticed a decline in my <a href="https://alsnewstoday.com/als-mental-health/">mental health</a> this week,” my husband, Todd, observed after a week of being quarantined in his office. Our daughter had a bad cold, and Todd hoped to avoid the bug that would have threatened his life. He rarely leaves our home, anyhow, but he missed being able to roll down to the dining room for his meals and engage in family banter.
His world got even smaller.
Todd has <a href="https://alsnewstoday.com/what-is-als/">ALS</a> and is paralyzed, and his lung function is so low that he needs <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">noninvasive ventilation</a>. His neck is too weak for him to comfortably ride in his van, and he feels self-conscious wearing his ventilator in public.
As Todd’s caregiver, my world has also shrunk. For me, the day-to-day sameness of life is one of the most difficult parts of this stage of the disease — apart from when I’m in <a href="https://alsnewstoday.com/columns/preparing-respiratory-emergency/">crisis mode</a> trying to clear his lungs so he can breathe.
Gone are the days of <a href="https://alsnewstoday.com/columns/husbands-als-progression-takes-us-different-season-life/">heading out in his wheelchair-accessible van</a> together to see one of our kids perform in a band or choir concert, or going on a <a href="https://alsnewstoday.com/columns/living-life-precautions-virus-exposure-coronavirus-compromised-immune-system/">family outing to watch Michigan Tech hockey</a>. Gone are the days of driving to a nearby larger city for vacation. Gone are the days of meeting friends for dinner at a restaurant.
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Todd doesn’t grieve the loss of these activities so much anymore. He says the hardest losses were the ones that came on suddenly, like when he first realized he couldn’t get off the ground or squeeze a mustard bottle. But his health has been compromised for so long that he has no desire to go anywhere, and the increased difficulty of leaving the house was so gradual that he didn’t feel a sudden loss. But he can normally motor around the house, and so being relegated to the back of the house is stifling.
I can understand how he feels, in a way, because when I’m sick with a bad cold or the flu, all I want to do is sleep. I’m not thinking so much about what I’m missing out on because I first want to feel better. But I pay a mental toll when I can’t do things I&#8217;d like to do because of our circumstances.
Just a little change of scenery from one end of the house to the other is enough to put Todd in a better mood.
<h3>The joy of seeing new things</h3>
I was struck by how my mood improved with an unusual change of scenery last Saturday. To close out the season, our local ski hill set up a slush pit filled with water, and skiers and snowboarders attempted to skip across it to the other side.
Our teenage son had wanted to go, and the timing ended up working out with Todd’s care so that I could watch him try to ride across it on his snowboard. I stood with other spectators at the bottom of the hill and chatted with another mom who has a son close in age. We watched several skiers and snowboarders attempt and fail.
“I have never seen anything like this,” I said as I watched in disbelief.
It was 36 F out — not bad for a March day in Michigan’s Upper Peninsula, but still much too cold to get wet. Sure, my daughter and I partook in a polar plunge in January, but they had several saunas heated and available for participants to warm up. But these skiers and snowboarders were hardcore.
Some made it across, but many sunk into the water partway across. Coast Guard members decked out in waterproof gear waded into the pool to help some of them out. One snowboarder made it across, managing a 180-degree turn in the process and spraying water on the spectators. Some of the participants were dressed in costumes: a hot dog, a chicken, and a hunter in blaze orange. One couple failed spectacularly strapped onto one set of skis with double bindings while holding kayak paddles; they didn’t make it more than 6 feet.
<figure id="attachment_90422" aria-describedby="caption-attachment-90422" style="width: 500px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-90422" src="https://alsnewstoday.com/wp-content/uploads/2024/03/Joyful-Sorrow-Slush-Pit-1.jpg" alt="Two people on skis attempt to cross a slush pit lined with a blue tarp. Several spectators are visible in the background." width="500" height="240" data-wp-pid="90422" /><figcaption id="caption-attachment-90422" class="wp-caption-text">Skiers attempt to cross the Mont Ripley slush pit. (Photo by Kristin Neva)</figcaption></figure>
Our son made it about a third of the way across because he didn’t have enough speed from where he started. It was a good attempt for his first try, but he was soaking wet and cold, so he decided to wait till next year to try again. He plans to bring multiple changes of clothes.
As healthy as I am, I would never try it, but it improves my mental health when I can see new things and experience a change of scenery. As for Todd, it lifted his spirits when our son returned to the house soaking wet. Todd laughed out loud, and he enjoyed watching videos of the event.
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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.

A change of scenery is helpful for mental health with ALS

Every once in a while, I step onto my soapbox (mine has special safety rails) to voice my view about an important issue in the ALS community. This time, I’m here with praise for &#8220;<a href="https://alsnewstoday.com/als-mental-health/">ALS and Mental Health</a>,&#8221; an article recently published in <a href="https://alsnewstoday.com/">ALS News Today</a>. In my opinion, it not only validates the elephant in the <a href="https://alsnewstoday.com/what-is-als/">ALS</a> patient exam room — feelings of depression, grief, and anxiety — but it also offers us concise and useful resources.
<h3>It hasn’t always been this way</h3>
Newly <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed</a> patients might think, “Well, hasn’t emotional health always been included in patient care discussions?” No, it hasn’t.
When I learned I had ALS in 2010, a solid 13 years ago, the prognosis was only two to three years of life following diagnosis. This shortened timeline emphasized how to deal with the progression of <a href="https://alsnewstoday.com/symptoms-of-als/">physical symptoms</a>. I was handed a thick manual filled with photos and descriptions of medical equipment I could expect to use. My husband and I were told to check if our home had enough room to accommodate a <a href="https://www.hoyerlift.com/">Hoyer lift</a>, a hospital bed, and me rolling throughout in a power wheelchair. All very good advice, but it didn’t leave much time to have a conversation about how I was feeling.
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The usual parting suggestion was that I could be referred to a grief counselor or to someone in hospice to talk about death and dying, if I felt I needed it. Those are good resource people, but I needed help developing coping skills, balancing my well-being, and strengthening my emotional resilience.
“We all have an end,” school psychologist Amanda Sifford, who has ALS, says in the article. “Unfortunately, when you have an ALS diagnosis, it just feels like it’s hanging over your head — at least, until you adjust and accept the situation.”
<h3>Adjust and accept</h3>
I found it challenging to process my condition through the stages of grief and finally feel ready to accept my new circumstances. Along the way, I read blogs written by ALS patients. Most expressed their anger, shock, and sadness while posting photos of their slow demise.
Meanwhile, I pieced together a simple formula for daily living, one that combined my knowledge of wellness with the adjustments required to <a href="https://alsnewstoday.com/living-with-als-2/">live with my ALS</a>. I decided to add my voice to the ALS community and began my &#8220;<a href="https://alsandwellness.blogspot.com/2015/01/welcome.html">ALS and Wellness Blog</a>.&#8221;
<h3>Do ALS patients feel depressed?</h3>
Still, I noticed the ALS medical community was slow to recognize the need for mental health resources and offer them to patients and caregivers.
Four years ago, <a href="https://alsnewstoday.com/columns/als-depression-link-anxiety-prognosis/">I wrote this column</a> about my surprise that the medical community was only beginning to identify depression among ALS patients. I wondered why we needed multiple studies to ascertain if having ALS caused patients to feel negative emotions. Really? 
Almost <a href="https://pubmed.ncbi.nlm.nih.gov/36066075/">one-quarter</a> of ALS patients experience depression. The <a href="https://n.neurology.org/content/86/24/2271.abstract?ijkey=2ce9afd889a33617f013836cc1ca65eab9cc2c83&amp;keytype2=tf_ipsecsha">risk of depression</a> is often highest immediately before a person is diagnosed and <a href="https://www.massgeneral.org/neurology/als/patient-education/symptom-management">soon afterward</a>. Really?
We need information to help us deal with anxiety, depression, and apathy. Information to help us cope and thrive. You’ll find it all in the ALS News Today article. That’s why I’m applauding this website for adding this excellent resource. If you&#8217;re a patient, caregiver, or in a circle of support, I encourage you to bookmark it.
Because this resource is one more valuable way we can learn to live well while we live 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 <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: mental health

A change of scenery is helpful for mental health with ALS

Voicing my approval of a mental health resource for those with ALS