Aphasia --> what?
March 3, 2011 1:20 PM   Subscribe

Based on the limited information that I have, is there any way to predict the progression of my mom's symptoms?

My mom (68 years old, very overweight and out of shape) had been talking more slowly and slurring her words slightly for months before I finally got up the nerve to ask her about it a few weeks ago. I had assumed that she must have had a mini-stroke, but she told me that she had been to a neurologist about it and stroke was ruled out. She underwent an MRI of the brain which showed significant cerebral atrophy. All she knows is that she has aphasia and it wasn't caused by stroke. She doesn't want to know anything else.

I understand that it's the cerebral atrophy that is causing the aphasia, and I think I have a handle on the possibilities as to may be causing the cerebral atrophy in her case (Alzheimer’s disease, Pick’s disease, or fronto-temporal dementia). What I don't know -- or know if it's possible to know -- is what I can expect next. Will she lose the ability to speak? How slowly or quickly will that happen? Will there be other symptoms? Will confusion and dementia begin for sure at some point? When?

I have to respect that she doesn't want to know what's wrong with her in this instance, since she can't do anything to stop any of the possible diseases. I did get (and pass on to her) some advice from a neuroscientist friend of mine, who said she should make sure that infectious disease is ruled out, and recommended eating healthier and exercising more. But it is hard for me to be in the dark about what I can expect next and when. I suspect that there's really no way for me to know, but I can't seem to find anything definitive online. Throwaway email: aphasia.askme@gmail.com
posted by anonymous to Health & Fitness (6 answers total) 1 user marked this as a favorite
If you're willing to ask your mom to do the paperwork, she should be able to sign a release form with her neurologist's office that will let them talk to you about her condition and prognosis. Obviously they can only tell you what they know, which may be limited if your mom doesn't want to undergo further testing. But they may be able to tell you more than your mom could remember or explain to you herself. They may want you to make an appointment to see the doctor if there's a lengthy discussion to be had, since they don't get reimbursed for phone calls -- if that's the case, they're not being greedy, they're just trying to keep the place afloat financially like any other health care provider right now. Sorry I can't offer any insight into what the future will look like for your mom, but I hope this might help you get more info directly from the source.
posted by vytae at 1:37 PM on March 3, 2011 [1 favorite]

Ask the neurologist for the consent form, to make sure it is the one they will accept. They deal with this all the time.
posted by yclipse at 2:00 PM on March 3, 2011

that sounds similar to what my mom has: OPCA/MSA. no one's ever heard of it, at least no one who isn't already a doctor. so when people ask me what she has, I say OPCA, which means nothing, then follow that by describing it as something similar to Parkinson's and MS. there is no cure, it is progressive and degenerative, and the best any doctor can do is treat the symptoms. i am not a doctor and don't mean to diagnose your mom. only that this is similar to how my mom's disease began to show.

my mom reacted the same way. she wouldn't tell us. pretended nothing was wrong. i'm sympathetic to that now.

try this: http://www.alyshia.com/OPCA/name_article.pdf and see if it matches up with her symptoms.
posted by ninjew at 2:48 PM on March 3, 2011

IANAD. This sounds similar to what happened to my mom, so maybe this is one story about what you might expect. Brains are weird, though, so don't think this is confirmed; it's just one anecdote.

About 4 years ago her speech started being slow/slurred/hesitant. Stroke was ruled out, there was some cerebral atrophy.

As the aphasia got worse, it made it seem like her brain knew what she wanted to say but her mouth didn't know how to do it; she needed to really think about each word that she wanted to say and force it out. Which I guess is one of the definitions of aphasia. For about a year or two she worked hard to force out speech, but she eventually gave up and just used yes/no and basic words to communicate. We tried using speech boards and software on the iphone to select pictures which would translate to speech, but her fine motor skills weren't good enough to use them.

During that time, her right arm/leg started to show the same thing, like her brain knew what to tell the limb, but the limbs didn't know how to respond. She had some physical therapy at this point - if you could get her to think consciously about each step, she could lift her foot properly and step, but if she was just walking (with a walker) down the hall, the foot dragged a lot.

Those symptoms got worse and worse over the next 3 years. In the last few months before she passed away, she was unable to walk, speak, use the restroom, use her right arm/hand in any way, use her right arm/leg to provide support for holding her body up while sitting, etc. Like she used to be able to use her right elbow against the arm of the chair to help someone boost her up and into the wheelchair; she lost that, and she started tipping over a lot while sitting.

There was once a diagnosis of frontal dementia, but we could still talk to her, see the light in her eyes and get her to answer to yes/no questions, so the family does not really accept that diagnosis. Right up to the last few weeks, she was still able to play cards (with a table-top cardholder) and dice games, use a spoon (with left hand), listen to a CD player, and things like that. I did notice with the card games that she started to lose some of the concepts of the rules, so we played open-handed and helped each other, like you would do for a little kid. She never did get confused or demented, though there were more and more times when she was "zoned out" and you had to get in her face to get her attention back.

I hope this helps, though you probably hope it doesn't :-) Memail me if you have any questions.
posted by CathyG at 2:49 PM on March 3, 2011

I am the OP... Just wanted to follow up and let those of you who kindly replied know that my mom was diagnosed with ALS (aka Lou Gehrig's disease) in July - that's what was causing the aphasia. It's probably the worst possible scenario, but at least we know what's going on now.
posted by amro at 5:11 PM on August 14, 2011

Sorry to hear about the difficult diagnosis. I'll be sending good thoughts your way.
posted by vytae at 7:09 PM on August 15, 2011

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