What Happens When We Compare Our Lives With ALS

Kristin Neva avatar

by Kristin Neva |

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When our kids started school this fall, I had a sense of relief that my husband, Todd, made it to see our youngest begin middle school. He’s now at the same school campus as our 15-year-old daughter. I’m glad we’re dealing with a school transition while Todd is still with us, although his health is severely compromised due to ALS.

I hesitated in writing this, because I know too many families who have lost a parent before the kids were 12 and 15. My gratitude that Todd made it to see our kids this far could evoke in others a sad wistfulness for what might have been.

On some level, we all relate, because an ALS diagnosis is life-shattering, but there are subsets within the ALS community. People are diagnosed at different ages and life stages, and there is so much variety of disease progression. Some experience a quick, painful sprint toward the end. Others, like Todd, endure a grueling marathon with gradual loss followed by years of paralysis.

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People experience unique pathways of the disease and may lose the ability to speak or walk, or they experience other effects such as depression, emotional liability, or frontal lobe dementia. Each family has unique challenges stemming from what abilities are lost, or not, and the sequence of when they go.

People’s support systems vary. Some have friends and family who can help, while others have the support of the U.S. Department of Veterans Affairs (VA). Some have wealth and savings or a spouse with a good job, but even then they may be unable to find help due to a lack of nurses or aides.

I’m not shocked that I feel some envy when I see other families living normal lives by going to the beach, on a hike, or a vacation. But even as I interact with others in the ALS community, I’m surprised by how often I compare our circumstances.

If only Todd could still turn himself in bed or sleep independently.

If only our kids were older.

If only we had the support of the VA.

Comparisons can sometimes be beneficial. They can help us imagine a better way, such as knowing what to fight for with our Medicare system after comparing our healthcare to others who live in countries that provide more support to people with ALS.

I can gain perspective when I come across situations that seem worse than what Todd and I are experiencing. I read accounts on social media of people in other countries that provide even less support to those with ALS. I hear stories of spouses with the disease who disengage or get mean. I get to know people who were diagnosed really young, before they had time to find partners and build families. I am saddened as I hear their grief for what will never be.

On the other hand, comparisons can dampen my empathy when I think another person’s situation isn’t as bad as ours. While that may be objectively true or at least true from my vantage point, it can discount another’s pain.

Our kids were just 9 months and 4 years old when Todd was diagnosed. I wish this disease hadn’t consumed their entire childhood, and that their “normal” wasn’t growing up with a dad with ALS. But I can imagine what a shock it would be to teenagers in the throes of hormones and identity formation when a parent is diagnosed. That’s a different kind of hard.

And older people, who have banked memories of young love and middle age together, are devastated that their golden years will not be what they envisioned. They are lonely because their kids live far away and can’t or don’t visit, and they are burdened because they’re physically incapable of providing the necessary caregiving.

We all suffer in different ways.

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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

Margaret Rhoda avatar

Margaret Rhoda

Every time l read one of your posts, my heart goes out to you & your family. My husband was diagnosed almost 4 years ago. As a Vet, he gets lots of help from the VA. Thank God for them & for our ALS Center. They have been so supportive. Our kids are grown. He just turned 70 & we have been able to take some wonderful trips together. As a retired nurse, l know some tricks of the trade in caring for someone with disabilities. My husband's ALS started in his arms. He's a musician who can no longer play. While he can still walk, his balance is more precarious. I can see the writing on the wall, knowing the disease will only get worse. I'm so sad for people who have no resources or support systems. You seem to have so much strength even with all you have to deal with. God bless you and help you! My prayers are with you.

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Kristin Neva avatar

Kristin Neva

Thanks for commenting! I'm glad you have support for this difficult disease.

Shannon Ward avatar

Shannon Ward

Sometimes it can be hard to remember that we're all in the same boat when we're miserable in so many different ways. My husband was diagnosed with bulbar onset in May and he hasn't been able to speak or eat since then. It's just him and I so trying to figure out a meal for me that doesn't cause him grief is incredibly hard. Eating alone while he sits in another room is just as difficult. After almost 45 years of marriage it's terribly sad to lose so much of him every day. We do have VA support but I would trade it all to have his health restored.

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Kristin Neva avatar

Kristin Neva

So hard when a spouse can no longer speak or eat. Thanks for commenting.

Carol Law avatar

Carol Law

I read your pieces, hold you and yours in prayer often, also have ALS, am 66, a fellow Upper Midwesterner. As I try to bow out gracefully, I find myself about to welcome our first grandchild to this world of covid + ALS, and I firmly believe that great plans are at work for each of these precious young ones who cannot help but be profoundly influenced by such almost unspeakable suffering.

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Kristin Neva avatar

Kristin Neva

Thanks for commenting. Yes, I hope that our kids learn perseverance and compassion.

Mark Adair avatar

Mark Adair

It breaks my heart to see people with young children or young people dianosed with ALS/MND. I was 69 when diagnosed and my 11 "children" are all adults and have 24 grand kids. There is a lot of support here in Sydney, Australia and my wife is a great help. I pray for all those struggling with this devistating disease.

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Kristin Neva avatar

Kristin Neva

I'm glad you have support in Australia!

Trevor Bower avatar

Trevor Bower

Kristin,

Thank you for your column. It was spot on as they say with the reality we all face. Your last paragraph really hit home for my situation. I feel fortunate that I have some great neighbors that check on me daily and offer assistance. Without them, I don't know what I would do.
Trevor

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Kristin Neva avatar

Kristin Neva

Thanks for commenting Trevor! I'm glad you have good neighbors.

Carol Law avatar

Carol Law

You are one of the bravest people I know. I hold you and yours in my thoughts. I am 66, have ALS and until I qualified for Medicare struggled even more to find care. May the US begin providing medical care to its people like all the rest of the civilized world.

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Kristin Neva avatar

Kristin Neva

Yes, we need our healthcare system to cover caregiving hours!

Thomas Pritchard avatar

Thomas Pritchard

My speech started slurring two years ago. A brain MRI showed that I had two strokes, which I had been unaware of. I just turned 70 this summer and I finally got a definitive diagnosis of Bulbar ALS, 8 months ago, almost a year and a half after when it had started. I lost two first cousins, who were siblings, to ALS in the past decade. Mine is familial (5% to 10%), the first cousin was Bulbar, and he was classified as sporadic (90% to 95%) and his younger sister started in her lower limbs and she was classified as familial. My speech, swallowing, and excessive drooling have degraded since the diagnosis in February. I am on prescriptions that slow down the continuation of my ALS future but the terminal disease of ALS was identified 152 years ago, by the French Doctor Jean-Martin Charcot, who was also classified as the father of neurology. I have gone through confirming diagnostic tests: nerve, pulmonary, swallowing, genetic. My degradations used to be embarrassing but my family and friends have been very kind and accommodating to me. Even strangers are not repulsive. I have 5 prescriptions helping me and slowing down the progress of ALS. I have alerted my other cousins and suggested that they inform their children and grandchildren. The three of us who have or had ALS had or have the C9orf72 gene mutated. Potential cures are popping up lately but too late for me, thanks to the FDA. I had some hopes for my future which have been destroyed. I am reflecting on my life, which has been full. I water skied two summer ago, 50+years ago when I learned how to and had not had an opportunity to do it again. I resigned from two Boards and leadership roles. I used to and still submit Letters to the Editors and Op-Eds to newspapers. I am curious about why our creator, if there was one, why he/she/they/it created Mosquitoes, allowed degrading terminal diseases, and mean and nasty people. As we victims degrade we turn into diminished personalities and cost our societies a lot more money. I am working with several ALS Centers and with our local Hospice. I'm going to try to travel to some places where I haven't been to yet, if I can. I understand the shock of the victims and their families and friends. I extend my sympathy to my fellow victims and their families.

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Kristin Neva avatar

Kristin Neva

Thank you for commenting and sharing a bit of your life.

P J avatar

P J

"We suffer in different ways" cannot say more eloquently. Thank you so much for your articles, it will be year this November since losing Thanuja and yes there are times I remember all that you are feeling and then I also am filled with gratitude that there those rare few who understood what Thanuja me and kids went through and now what the girls and I are going through. we don't have care facilities that the west offered here in Sri Lanka. to add to that when Thanuja's family falls apart emotionally and keeps denying and giving hope through horoscope reading, all sorts of rituals and offerings to the gods it takes a toll on the caregiver/spouse , who knows where its headed. it was a very lonely journey for me beside him but he didnt want anyone else in his darkest of times, best of time and in between except me and when I read your articles I am reminded of that time I was given to care and just be there. I am grateful. Yes WE suffer in different ways, lots of love for being a such a brave soul.

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Kristin Neva avatar

Kristin Neva

Thanks for commenting. I'm sorry for your loss and encouraged that you feel gratitude on the other side.

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