What Happens When We Compare Our Lives With ALS

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.

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.

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.

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.

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

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.

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.

"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.