Does anyone suffer from Aphasia?

@jakedduck1 Hi Jake, losing words and the ability to understand others is really frightening. My daughter’s father-in-law was recently diagnosed with Primary progressive aphasia (PPA). It’s the second major form of frontotemporal degeneration (FTD) that affects language skills, speaking, writing and comprehension. PPA normally comes on in midlife, before age 65, but can occur in late life also.
It’s very rare and not curable. However he is being seen at Mayo where they’re working with him to slow the progression. I know he has a speech therapist and I think some other cognitive specialists helping him with activities to offset some of his inadequacies at this point. It’s early in the game right now.

However, the most interesting part of this is that this mentally degenerative disease was thought to be progressing much faster that it really was. While undergoing all of diagnostics, he was found to also be needed hearing aids! That has made a significant difference in his communicating. Because part of his symptoms was just tuning people out. Not responding to comments or did so inappropriately. He was growing distant and incommunicative.

Needing hearing aids was a lightbulb moment…have you had your hearing checked?

@loribmt
I'm sorry to hear about your daughter’s father-in-law.
Fortunately, I have only minor hearing problems with low-frequency sounds which Idont notice. My hearing tests haven’t changed in many years and at my last appointment I asked the doctor and hearing technician specifically if I needed a hearing aid, and they said no.
hopefully whatever is going on isn’t serious.
Thank you for your reply, it's very much appreciated.
Jake

@jakedduck1
Hi Jake, Good Evening
I am sorry to hear about that. Do you have it after a seizure or at any moment?
After my late forties, I started to have those symptoms after my seizures, not being able to speak and understand well some people after a seizure. If it is a mild seizure, it takes today around 15 minutes to be able to fully recover my ability to speak and understand well others, but I had already strong seizures that left me very confused and without being able to communicate well for one hour.
I also remember that some AEDs I have tried in the past have impacted both my capacity to communicate clearly and to understand well people.
I do not know any treatments for that, I am learning about it right now in your post. I thought that the aphasia I had after my seizures were a consequence of the seizure itself, just impacting those capacities when having seizures. But reading Lori's comment (@loribmt), I do understand that Aphasia is something that develops with time in a person with a certain kind of epilepsy. Sorry, I can not remember now, what is again your type of epilepsy? Mine is temporal lobe epilepsy.
In April I will have an appointment with my epileptologist and will ask him about aphasia, sharing it here with our group in case I get interesting information about it.
Sorry for not being able to help much Jake!
Santosha

@santosha
Thank you for your response. Like you, I also had what I believe to be “Epileptic Aphasia” episodes after Tonic-Clonic seizures which is very common but it goes away.
My current episodes are sporadic and don't last long but seem more frequent. It may not be Aphasia but the symptoms are the same or very similar.
Jake

Good Morning Jake (@jakedduck1)
Thank you for your answer. It is already distressful to have such episodes after a seizure! Thank God your current episodes do not last long.
Have you checked about that with your neurologist/epileptologist? I will also ask my neuropsychologist about Aphasia in my next session with her and I will share it here with you. Doing some search, I have just discovered this site: https://www.aphasia.org. I have not yet had the time to look into it, but it might be helpful. I have also looked into the Epilepsy Foundation. Aphasia is most common in people with a lesion in the left temporal lobe. I understand you do not have any lesions in this brain area, do you? Medications (like Topamax) can affect this zone in our brains.
Curiosity, how often are those episodes occurring in a month? You said they do not last long. How long, 10 minutes? If I remember well, you are seizure-free nowadays :-), but when you still had your seizures did you experience an increase in epileptic aphasia when getting older? When much younger, I could fully recover from a seizure right after it, not having any aphasia after the seizure was over. But nowadays, as already shared, I always experience some aphasia after my seizures. And with age, this aphasia has increased, I feel.
Stay strong, Jake!!!
Good Morning Lori (@loribmt)
I am very sorry to hear the story of the daughter of your father-in-law. I do hope that this treatment with a speech therapist and cognitive specialist does bring her some benefits, fingers crossed! As you said it is frightening. Please continue to share her updates with us.
I imagine she did many exams to be diagnosed with Aphasia. Do you know what kind of exams is specific for the diagnosis of it?
You have remembered me to take care of my hearing, thank you. According to exams, my hearing ability has already decreased (family heritage). But when this is still mild, there is a therapy that can help. Thanks for this reminder, I need to give some focus to that as well.
I wish you both a good day!
Santosha

@santosha
I currently don't have a Neuro. My Neurologist (best one yet) recently passed away. No, I didn't mention it to him, probably forgot, don't have a new one yet. As far as time is concerned, if in a room with multiple people talking it lasts as long as I'm in there but for the most part I avoid small enclosed places. However watching tv it last only seconds, making me think it was my hearing. I thought it may be something age-related and also wonder if it could be a concentration issue. It often happens daily but sometimes I may go a few days or a week without experiencing it.
I'd think if it Aphasia it would be more consistent.
Jake

Hi @jakedduck1
I now understand better your scenario. Even if it is mild, if I were in your place, I would investigate that with a doctor. I will bring that up in my next appointment with my epileptologist in April and start seeing how to prevent my epileptic aphasia to evolve as I do have a lesion on the left side of my temporal lobe.
I am sorry to hear that your neuro has passed away. If I were in the US, I would recommend my epileptologist to you, I like him much. Perhaps people here in the group can give you some help in this respect? In which city are you? If you wish, I can check with another group with whom I have close contact and meetings once a month, if they have someone nice to recommend.
Santosha

@santosha
Thank you for your efforts.
I'm in the middle of California (Modesto) I wonder if I have a touch of TLE because of the déjà vu episode? Associated?
Jake

Hi Jake,
It might be associated. It is hard for me to express any comments, the best would be to see a doctor to investigate.
Santosha