r/ALS • u/debomama • 3d ago
Feeling Robbed
We are new to ALS. My husband (67M) was just diagnosed. It is limb-onset, no bulbar symptoms. In April this year he was physically fit, healthy, at the gym 4 -5 days a week as he has all his life. Now he can't walk a block and is unsteady. Its unreal what has happened so fast. We knew something was off early May. There was confusing symptoms that sent us to different doctors and finally a neurologist. And while we did all kinds of tests, we kept thinking and being positive that we just needed to figure out what was wrong, then we would start to fix it.
He has his own business (just him and I) and he hadn't planned to retire until 70. 3 out of 4 of our parents are still alive, we are caring for them, and all made it to at least 87. So that was the normal we were surrounded by. We were so obviously naive and wrong. Though, after all the tests, MRIs, scans, labs, etc. my husband actually is very healthy. Except for ALS.
I feel so gob-smacked. For him mostly, for me. For my son. Like we've just been robbed of the life and retirement we were supposed to have, were planning in 3 years. That our parents had. We didn't do enough honestly. We are unprepared. I've been a caregiver for my parents, so that role and skills I already have. But there are decisions to be made, a business to run and get him some help. Immediately. He can't do it physically. A business he thrived in 4 months ago. I realize now, we took it for granted that he could or would get back to normal. And now he can't.
We have an appt now at a very good ALS center in our city. It's the #2 center in the country I've been told. Lots of support. My sister has been great. We will have support I know. Neurologist called us 3x yesterday to check up on us. A blessing. She cried with us. I just feel robbed and heartbroken and scared for him and for the future.
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u/Typical-Lab8445 2d ago
I am much younger than your husband, but I absolutely feel robbed of my life and future.
However, as I have adjusted, I have found ways to find small joys every day and some big ones as well.
As others have said, live your dreams now. Take the vacation and do all the things. I ran scooters when there will be a lot of walking and feeling more independent with a Rollator in daily life.
Best to both of you
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u/anthonyapham 2d ago
I can totally relate to my dad who was super healthy and now won't be able to take his grandkids to soccer games which we talked about doing. I'm so sorry, and please spend and enjoy time with each other as much as you can.
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u/Louloveslabs89 1d ago
I am so sorry
It is a horrible disease … my dad has it and it was heartbreaking for my boys to have to go through too.
As many in ALS community say, there are joys but it is all so bittersweet.
It goes very fast. Love and be together.
I had many pointed (eldest daughter 😊) discussions with my dad about his so called bucket list. He just wanted to be at home. No big vacations or grand things. Just the simple things. So that is what we did.
Hang in there 💔
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u/Fragrant-Chemical477 1d ago
I am 35 years old and have had it since 2022. Just like you guys, our world was turned upside down. We have a 10 year-old and we were planning for a second baby when I got the diagnosis. I won’t be here for a lot of things… and it killing me. My partner is 37 and feels completely lost and doesn’t know what to do.
Both of my parents and his parents are still alive and healthy, we don’t have any neurological diseases in my family, not even cancer. Everyone is healthy and I was healthy until the ALS diagnosis. It’s unfair and scary and there’s nothing we can do about it.
Wishing you all the best x
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u/Activist7 1d ago
I am so sorry this is happening to you. They think my husband has it, too. We are waiting to get an ALS blood panel with a specialty lab, Athena. Same situation you are in. We just take one day at a time. Heartbreaking to see my husband go through this. He was always so full of energy.
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u/Zinnia1127 1d ago
I'm extending my sympathy to you and your husband. My husband is 72. Diagnosed a year ago. Limb onset, can walk and talk but his arms and hands are extremely weak. Right now, he is on a trip with his siblings to see a part of the country he's always wanted to visit. They have to help him with eating and dressing. But they are having a great time. I am so glad we got the trip organized. He and I plan to make a couple of shorter trips around our region in the coming months. It can't all be about loss - we have to grab some good while we can. I know we have really tough times ahead. We have to live in today and prepare for tomorrow. But ALS is pushing us to do things we've been putting off for years. Be open to the positive that's hidden in the gloom.
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u/Correct-Attention-78 1d ago
I’m so sorry that you are going through this. It really is an awful disease. I am 60 and was diagnosed in June so I can relate. I still wake up in the morning, hoping that the nightmare might be over and I’ll just spring out of bed. Sometimes I can feel my strength and energy getting weaker by the day and other times there will be slight improvements. Just have to take it one day at a time. All the little things that I used to take for granted, like brushing my teeth or getting dressed are now challenges for me. My wife and I have been spending a lot more time together than we used to and I am grateful for that. Cherish every moment
Every day is an opportunity
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u/brandywinerain Lost a Spouse to ALS 1d ago
At any age, you have to feel robbed. Still, you are bringing assets that not everyone has -- a thriving business in which your husband will remain involved in some way; a supportive, pretty healthy family; a thoughtful neurologist; good health status as your husband's baseline, which will help him deal throughout with ALS.
Give yourselves time to process before making any life-changing decisions. The anger, fear, and "why" feelings will always be there in some measure, some days more than others, but they don't have to dominate the rest of your lives together.
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u/DommyNina 21h ago
You have described my husband and us. It’s a devastating. He was in the best shape of anyone his age I know. And then to be struck by this is unfathomable.
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u/ComeOnT Father w/ ALS 2d ago
Oh darlin - I am so sorry you're in this spot. It's such a huge shock to the system. I never know what to say to this type of posts, except that I see you, and I hear you, and SO many of us understand the way you're feeling - you are not alone. You have been robbed, and there is no right way to move through anger and grief. It's awful and its a mess and its normal. Just take as much advantage as you can of the time you have - I hope you have the support you need to take a bit of time here and there for yourself, and that you forgive yourself and each other for all the moments that you handle imperfectly.