My mother-in-law was just diagnosed with PLS

[WorriedGirl]

So this is all very new to me. Her symptoms seemed to have progressed very rapidly (she's gone from slightly off-balance in November 2009 to needing a walker and slurring noticeably by October 2010). In hindsight, perhaps some more mild symptoms (trouble swallowing/choking, random bouts of uncontrolled laughing, etc.) may have been evident a few months in early 2009, but we just wrote it off as weird, isolated events.

So, a few questions:

I read several posts where people say that think/fear a case of PLS "has turned into" ALS. Can this happen? Or is this just shorthand for "they diagnosed it as PLS, but it's actually ALS?" I'd like to feel confident in my MIL's diagnosis, because she rec'd it from an ALS Center of Excellence, but should I worry (that is, worry more than I already am?)

What is the best thing I can do to help my MIL? She's a very determined and stubborn woman and she hates being fussed over.

How can I support my husband and my siblings-in-law, who are obviously worried about their mother?

What's the best way to explain what's happening to Grandma to my children (who are 12 and 5)?

Thanks for listening!

 

[joelc]

Sorry about the diagnosis. PLS is a disease that only affects the UMN (Upper Motor Neurons). ALS affects both the UMN and the LMN. She was not likely misdiagnosed, PLS can sometimes turn into ALS if the LMN's start to be affected.

The best thing to do is try to treat her as normal as possible. Most people appreciate it when you do this. Remember, she is still the same person she always has been. It you see things you could help with don't ask, just do them.

As far as your children, tell them a little about what is happening, don't unload all the details all at once. They will come back and ask more questions later. You know your children better than anyone and know how much they can handle right now.

 

[AKmom]

Welcome to the group!
Joel gave some very excellent advice. I have found that some people (the ones who are not members of my direct family) will make me feel like a complete invalid when I can still do things. I do need help with some things like some of the housework (cannot scrub floors or walls anymore...not enough strength) but I can still manage quite a bit of things. If I need help I will ask for it. Its not being stubborn...its being me.

I suppose someday that maybe my desease will decline to the point of needing constant help but that day hasn't come yet, so I will do as much as I can to overcome my challenges. Don't want others to push me that way.

Its awesome you want to help your mil, I think the best way to help her is to talk about it with her and let her tell you what she would like help with if anything. Then just let her know you are here for her if she needs anything.

 

[Tokahfang]

The single most important piece of advice I can give is this: take no for an answer!

If you "ask" to help, and then get told no, but push your way through and do it anyway, you demean her choices, her personhood, and make your question a lie. When she does need help and realizes it, she certainly won't ask you given any choice at all! We crips spend a lot of time figuring out new ways to do stuff, and we need space to do that. But do ask if she wants help, or offer specific services, it makes asking you later easier. Oh, and assume she CAN do stuff/participate/etc rather than "its too bad we can't do BLAH anymore.... dramatic sigh!" She can back off when she needs to.

In full truth, the docs themselves aren't sure how the PLS-ALS thing works. Some docs see them as seperate diagnoses, and so if you end up with LMN trouble, then you were misdiagnosed. Some see PLS as a variant of ALS, others as a variant of spastic paraplegia. Its all a bit ideological, I'm afraid! What we can say for sure is that some percentage of people with PLS diagnoses (the percentage wildly varies depending on country, it seems) end up diagnosed with ALS later on. The switch generally occurs within 5 years, after that they feel you're pretty safe.

Many PLSers have periods of very slow or no noticeable progression, so don't lose hope for you MIL. We are all on very different rollercoaster tracks, and just need to take life day by day as it comes.