Odd Question on Mouth/Lung Issue?

[googie.cat]

Hi, all--

As I posted here a few weeks ago, my mother, age 72, has language-variant frontotemporal dementia and also suspected ALS (getting evaluated in early February). She has increasing trouble swallowing, and before her speech all-but-completely disappeared she was slurring and her speech was getting very soft. (doctor also detected some hyperreflexivity on her left side, but so far she doesn't exhibit any movement issues so far)

We haven't had her lung capacity tested yet--she walks for about an hour every day, and seems to do okay on that, though sometimes she will breathe in a strange audible way for a good while after she gets home (which includes walking up a big hill). Not big out-of-breath breaths, but almost humming with each breath.

Yesterday, at a birthday party, she picked up a noise-maker (one of those things that you blow in and it uncurls and then snaps back). She tried repeatedly to make it work, and never could. It seemed like she was getting her lips wrapped around the tube well enough, but she just never came anywhere close to exhaling enough to even start to inflate the curled-up tube, let alone uncurl it.

My question is: would it have been a function of issues in her mouth, or in her lungs? Or her brain being unable to tell her body what to do?

It's not a huge thing, it was just a little startling to see, and I'd like to mention it when she is evaluated, but I was wondering if people more in the know had any insight as to where the issue might be.

 

[cubcake]

Same with my husband, but his was a kazoo. It could be any of the things you mentioned. My husband can't blow his nose anymore, either. Now we are having issues with sucking from a straw. I tend to lean a little more toward the message being lost between the brain and the mouth with that because sometimes he'll sit and blow into the straw instead of suck, and then he's surprised that there are bubbles.

Eventually, it will be all of those issues. You just deal with them one at a time and find a work around. When was your mom diagnosed with FTD? My husband was 12/10. I haven't heard his sweet voice in over a year.

 

[googie.cat]

Thanks for the data points. Mom was diagnosed in February of 2012, so not quite one year ago. We noticed her "dropping words" here or there, like maybe once every hour or so, in August of 2011. Looking back, we can probably recognize some behavioral changes in the months before that, but nothing truly startling or that had us thinking anything was wrong. We did notice that she just seemed "less sharp," which was probably more that she wasn't talking as much about things other than what was easy for her to say. By Christmas, her speech was obviously affected, she was doing more talking around words she couldn't remember and relying on catch phrases.

Now, she can get something out if she really wants to--usually "I don't wanna be here" when she's at the doctor, LOL. But for the most part, she doesn't try anymore. Back when she was first diagnosed, we told her that the problem was that she had talked too much during her life and had used up her allotment of words.

I'm so sorry about your husband. This is hard to deal with in a Mom, especially a mother who was such a force in life, but I can't imagine going through it with your partner. I hope you're hanging in there.

My dad is at least now actively asking about getting some help to come in to relieve him, and so I think we'll be starting that process soon.

 

[cubcake]

I'm sorry for you, too, Googie. My husband and I haven't been together all that long (not nearly long enough!) as it's a second marriage for us both. When we first got together we would just talk and talk and talk. It was not uncommon for us to be doing the dinner dishes at 11:30 at night because we would just sit there laughing and talking. I always wonder if he knew, somehow, that he had a limited time to get everything out. It just breaks my heart that such a sweet person, with so much to give, is reduced to this.

I'm definitely hanging in there. I consider it an honor to be able to care for him. He's so loved at work that they are letting me telecommute everyday (I go in once a month) so that I can spend my time with him. I will hang as long as God lets me.

I wish you and your family peace and comfort, and a lot of patience, as you deal with these dreadful deseases.