PPA (primary progressive aphasia) - a type of Alzheimer’s

hsabrams

my sister, age 77, has been diagnosed with “logopenic PPA” and Alzheimer’s - and is living at home with her husband. She can do all the ADL’s, is working out, socializing and seeing a speech therapist. She has no memory loss but struggles to find words, has trouble writing and reading. On Aricept today, however her neurology team at MassGeneralBrigham (in Boston) has recommended Lecanemab - every other week infusions for 18 months.

I would like to hear from anyone who has or knows someone with this diagnosis. Has anyone with PPA had Lecanemab? I live very close to my sister and I talk to her every day. Would love to learn more and talk about others’ experiences.

Note: I noticed word loss about 3 years ago but she wasn’t officially diagnosed until this year.

harshedbuzz

There's some evidence that Leqembi is not as effective in women. In balancing the risks and costs (time/money/inconvenience) this is a conversation to have with prescribers.

HB

GothicGremlin

Hi there @hsabrams

I can't speak to the Leqembi, but my sister had early onset Alzheimer's as well as FTD/logopenic Primary Progressive Aphasia. Her doctor told us that the logopenic PPA is the rarest form of PPA.

Reading and writing were the first skills that my sister lost ….

hsabrams

https://alzconnected.org/discussion/comment/238938#Comment_238938

hello GG - it’s exciting to find someone who is dealing logopenic PPA. HOW FAR ALONG IS YOUR SISTER? Did she eventually develop memory problems like the majority of Alzheimer’s patients? Did she have a speech therapist and did that help? Can she still speak? How is she dealing with the loss of words? As you can see I have a lot of questions. Hope you don’t mind.

GothicGremlin

Hey there @hsabrams - sadly, my sister passed away this last year, but I'm happy to discuss any aspect of her diagnosis, if it can help you.

To answer some of your questions:

Peggy had early onset, which tends to progress faster - I don't know why. She lived 5 1/2 years after diagnosis.

She had memory problems, but she remembered me, my brother, and her best friend from high school until the end. In fact, she remembered most people until the last few months of her life.

One of my cousins is a speech therapist, so my sister had her. I can't say that it helped. She was able to speak until the last few months, but I think that was because by that time she was on hospice and the anti-psychotic drugs impaired her even more. Even then, every once in awhile, she'd get a couple of coherent sentences out.

The loss of words was really difficult. I used humor a lot to keep her stress level down (from not being able to get a word out). I'd start with 'is it bigger than a breadbox?" She'd laugh, and that would break the ice a bit, and sometimes help her with speaking. Sometimes I'd guess at what she was getting at, sometimes I'd just agree with her even if I had no clue what she was talking about. I used different strategies as she progressed.

Not being able to remember nouns was really frustrating to her. She also lost the ability to read fairly early on, and that was frustrating for her. The thing that usually worked with her was for me to act as if everything was fine and normal - and to keep that poker face on. Early on I asked if she'd like me to supply words if I knew the word she was looking for. She said yes, so that was also a default behavior for me. I often read to her.

I think it's great that you talk to your sister every day — I also spoke with my sister every day. I think it really helped me to keep a handle on the progression, so that I could relay that info to doctors. Plus, it was just nice to talk to her, even if I had to guess at the nouns.

I hope this helps as a start.

hsabrams

https://alzconnected.org/discussion/comment/239007#Comment_239007

it helps a huge amount. I’m going to be with my sister when her daughter and 3 grandsons arrive from Chicago tomorrow. That’s the best therapy of all for now. I hope you don’t mind if I stay in touch as questions and experiences arise. And thank you for taking the time.

GothicGremlin

@hsabrams Oh, good, I'm glad it helps. It's all so very difficult, please feel free to ask me anything.