Diagnosis: amyotrophic lateral sclerosis

Here’s what’s got me upset. About two months ago, my mom started having trouble with speaking. It’s gotten worse, and she has trouble swallowing sometimes now too. She’s been to see the doctors and they mentioned a couple of possible causes. None of them were pleasant, but most were fairly benign. So my mom told me.

I freaked out a bit when I first heard her with the lisp. She sounds like she’s had a stroke or down’s syndrome. But she was upbeat and said it wasn’t any big deal. This was before the conversations talked about in the previous paragraph.

My mom let me know today though that the preliminary diagnosis is amyotrophic lateral sclerosis. Also known as A.L.S. or Lou Gehrig’s disease.

It’s nearly always fatal, though around 10% of patients live around 10 years. There’s no cure. 50% of patients die within 18 months of diagnosis. 25% of A.L.S. patients have a form called bulbar A.L.S., which is the form that attacks the speech functions first. It’s known that bulbar A.L.S. has a faster progression than limb-onset A.L.S.

I’ll probably write about it here. I do not want to answer incessant questions about how me or my mom are doing, or deal with a billion I’m sorry to hear thats. Even if it’s just one question from a single person, it may come after I’ve answered the same question for another 10 people. I don’t want people to have to walk on eggshells around me, but please get attuned quickly to my body language around this. Yeah, it’s all kind of contradictory. Sorry, when I’m upset I’m even more difficult than normal. I could use a lot of support, but that can be best accomplished by just including me in normal activities a lot and just letting me lead any conversations around the topic. If I’m comfortable talking about it, I’ll bring it up. If not, be circumspect. I may need to talk then too, but it’ll be rough going.

Lastly, please don’t talk about this with anyone who doesn’t already know for the moment. In particular, isn’t on this filter. If my mom hasn’t told her yet, I don’t want her hearing through the grapevine. I suspect they’ve already talked, but I forgot to ask. Probably after Easter, all the people who need to know directly will, and I’ll open this and future entries up.

22 thoughts on “Diagnosis: amyotrophic lateral sclerosis”

  1. You have my sympathies, Phil – I’m sure the next several months will be difficult. I will remember you and your mother in my prayers.

  2. Phil, you have to do whatever you have to do to help yourself handle/get through this time. If you need me, you know where to find me. Remember, if you need someone to lean on, I may be short, but I’m strong. Much love to you.

  3. You are in my thoughts, Phil. Let me know if you need to get out of town and into the woods again soon, too.

  4. I’m very sorry to hear that. I had a patient who wrote diary of her experience with this, when she 1st started having problems. It was quite a read. I’ve been down this road with folks. I hope you are seeking out support systems. If you have questions, or need to chat, I’m availible. *Hugs*

  5. if it will cheer you up a bit, i will send you more boobie pictures.

    because i’m a helper.

  6. Oh, wow. It’s not my area of specialty but I do have good contacts in the medical community and can ask around if you need anything.

  7. Your mother called us yesterday and we told her that we would be there for her. Of course that includes you & your brothers & sister & Andy too. We have considered your family as part of our family for many years & we have also felt part of yours. You know that we love your mom & dad very much & we also think that all of their children are pretty special also. Your mother has such a strong spiritual connection & she has always had a special glow that shines from within to all she meets.

  8. This may sound kind of off-topic, but Stephen Hawking is scheduled for zero-G flight training, to prep for space travel.

    As you know, he’s got ALS, and I think has had it for more than 10 years, so there’s someone in that 10% category.

    Call me stupidly optimistic, but if I see one example of someone with a nasty disease fighting like a mo-fo and doing amazing things, it inspires me to think anyone with a nasty disease can still do amazing things, or at least ordinary things. Handicapped does not have to mean crippled, imho. Besides, she’s still ambulatory, it’s something we generally take for granted but now you get a new appreciation for simpler things.

    I remember recently catching a trailer on Apple’s trailer page, about 2 brothers, one with ALS and the other working like mad to find a cure. There’s still no cure, but I remember it looking inspiring.

    Does she live near? My mom has MS, and she’s scared to travel from Minnesota to come to my wedding. If your mom is not near, convince her to move close early rather than later.

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