PPA (primary progressive aphasia) - a type of Alzheimer’s
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.
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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.
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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 ….
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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.
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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.
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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.
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@hsabrams Oh, good, I'm glad it helps. It's all so very difficult, please feel free to ask me anything.
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My DH was diagnosed with logopenicPPA five years ago. Now he is unable to speak coherently except for very occasional phrases like 'Thank you' and 'Where are we going?' He understands very little of what I say, cannot use a phone, read, wash his hands by himself or follow the story line of a video. It is 3 am, and he has taken the sheets & blankets off the bed, and wandered the house for an hour. He gets angry when I try to make the bed again. He has no memory of where the toilet is, or what it is for unless I point to it and explain. He is an enthusiastic but messy eater. Two days ago he left the house barefoot at 6 am and walked a half mile before falling down onto a garden. I was following him on foot and a nice neighbor drove us home.
Speech therapy was never useful. We did not try medications.
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My DH refuses to see a neurologist so we don't have a formal diagnosis, but from what I read he has LvPPA. He just says it's Alzheimers. He's a surgeon, recently retired, and has a strong family history so he's pretty sure. No apparent memory or executive function problems yet but the word retrieval and using wrong words seems to be progressing pretty rapidly in the last 4-6 months. I just need to have community, really. My pressing question is about progression...what does it mean that he's sort of suddenly having more word retrieval problems, do any of you have insight into what to expect next? Because he won't go to a neurologist I just feel like I'm flailing without access to expert help.1 -
hi there @SheilaJoyce
It's really hard to say without tests (MRI, PET scan, etc) and a trip to the neurologist. But assuming that you're right about the PPA … if his progression is anything like my sister's progression, more words will be lost - prepare for a time when there will be no nouns left. My sister had spatial problems that got worse and worse over time. At the later stages incontinence became an issue, hallucinations and delusions became an issue. There was a lot going on.
At some point he really should go in because some of the medications for PPA don't play nice with medications given for Alzheimer's. Maybe convince him to get checked for something else, but tip the doctor off prior to the visit about your concerns?
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How long did your sister's aphasia progression take? His nouns are disappearing, or being swapped for nouns that sound similar, but we can still communicate OK. And medications are off the table in his mind, so I don't have to worry about interactions. Sigh. He's not easily convinced to do anything. But he's still able to communicate and take care of himself and life is fairly normal for now. I just wish I had an idea of how long we have until he is unable to communicate.
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You're definitely in a tough situation …..
My sister had early onset, she was 58 when she was diagnosed. She passed away in 2024, so 5 1/2 years, so incredibly fast. From what I've gathered from others' experiences, the older you are, generally the slower it progresses. Anything at age 65 and younger is considered early onset.
In the beginning she would often substitute words, like "linear" parking instead of "parallel" parking. A couple of years later and I often had to guess what she was getting at. And about half way through 2021 until 2024, I had no idea what she was talking about, and I'd listen to how she said something and react accordingly, and hope for the best.
At some point he may forget he has any kind of dementia (anosognosia). When/if he gets there, that may be an opportunity to get him seen by a doctor. You'd just tell him it's a an annual check-up or whatever it was that he'd accept.
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Thanks so much for engaging on this. It’s helpful.
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You're very welcome! I'm happy to help if I can.
When I first found this site, I knew absolutely nothing about Alzheimer's, FTD or PPA, and that's a scary place to be. And since my sister had all three, I needed to learn fast. People here were so kind and so helpful, and it helped me out so much.
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My DH is 58 and was just diagnosed with PPA, stage 2 to 3.I am at a loss of where to start. His PsyD has suggested we file for disability sooner than later. He has a follow-up with the neuro in 2 months. He recommended this site for support. Any suggestions on what to do next?1
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Hi there @hndzon01 I'm sorry that you're here, but at the same time, happy that you found us. You'll find a lot of info and support here.
The first thing I'd do is to see an elder law attorney, and I'd do that as quickly as possible. It's really important to get your legal ducks in a row. You'll need a durable power of attorney for medical and financial, and an elder law attorney can help with this. They'll also be able to help with disability.
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Thank you @GothicGremlin
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As others have suggested, you want to consult an Elder Law attorney asap while your husband can still sign legal documents. Get Hippa forms signed giving you access to doctors and medical records. Get the name of an SSDI attorney and get a consultation. The attorney and SSDI attorney will help you navigate an early retirement along with a leave of absence at work. You will have to take over all finances. Get a list of all accounts, log ins and passwords. Do the same for all bank and brokerage accounts, computer, phone. Put bills on auto pay. Put TILE gps trackers on keys, phone, wallet. It will track the items and the person through the Life 360 app. Get a plan b in place in the event you cannot care for him. Look into in home care as well as memory care facilities. Put him on a waitlist with a refundable deposit.
Read The 36 Hour Day. It will answer questions and help you prepare. With the diagnosis, he should not drive. Your insurance company most likely will not cover an accident leaving you open to get sued for everything you own.1
Commonly Used Abbreviations
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AL = Assisted Living
POA = Power of Attorney
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