Progressive Aphasia

Hi Roger,

from looking around on the internet it seems like there is progression, but that progression hasn't been formalized into numbered stages beyond something like 'early' vs. 'late'.

https://www.aphasia.org/stories/difference-alzheimers-disease-ppa/

I thought I'd add in my two cents ..

My sister, diagnosed with Alzheimer's, was also diagnosed with Primary Progressive Aphasia (PPI). It's a tough one to navigate.

For her, it did start out with the language problems, just like the definition that you found @SDianeL . I remember before she was diagnosed, she had lost her car (long story). I asked her to describe how it was parked and she said that it was parked linearly. In my head, I was like, "what does that mean?" It meant it was parallel parked, but she had forgotten the word "parallel", so substituted "linear" instead.

To get to the diagnosis, she first went to a neurologist, then she had a CT and an MRI. They were still unsure, so they did a PET scan. It was the combination of those tests that led them to the diagnosis.

I haven't seen a list of stages for PPI like I have for Alzheimer's, but it does get worse over time. Peggy's at early stage 7 now, and I can't tell anymore whether I'm seeing the PPI or the Alzheimer's.

Still, even at stage 7, she knows who we all are, but she's iffy on the time frames - like, she doesn't realize our aunt is 90 and not 30. She's unsure if our parents are alive or if they've passed away (they have). She is unable to name things like "chair" "table", etc., but if we point to a chair and ask her to sit down, she can do that, with help.

She still talks, but her vocabulary is tiny at this point, and I really have to pay attention to what she's saying and how she's saying it in order to figure out what she's trying to tell me. There are a lot of made up words.

Her vision is severely compromised, even with up-to-date glasses. Her vision was probably one of the first things to be compromised as I look back.

In Peggy's case that's what Alzheimer's and PPI look like. I don't know if this is helpful or not (I'm hoping it is!).

thank you. Very helpful. Hoping they will agree to a PET Scan at the VA. The Neurologist said that's maybe the next step.

I found this at healthline.com:

• Stage 1: Very mild: Symptoms may not be recognized and could be mistaken for stress or aging. They may be sporadic, hard to describe, and only recognized in hindsight.
• Stage 2: Mild: Communication difficulties and other subtle challenges in daily activities become noticeable to you and to others.
• Stage 3: Moderate: You might need help with daily tasks and could cease working. Communication difficulties might affect your goals and social interactions, leading to frustration.
• Stage 4: Severe: During this stage, communication might become significantly more challenging. Living independently could become difficult or impossible.
• Stage 5: Very severe: You may notice broader cognitive and behavioral changes and that meaningful communication becomes increasingly rare. You might require assistance with personal care and experience more pronounced physical symptoms (coordination, walking).
• Stage 6: Profound: At this point, communication may become nearly impossible. You might also find it challenging to respond to your surroundings and may experience a significant decrease in mobility.

After a PET scan this week, it seems like my DH might have PRIMARY PROGRESSIVE APHASIA, stage 2-3.