Logopenic Progressive Aphasia

CStrope

Has anyone else been told their LO has this?  After having a PET and and EEG, our physician said that he feels that my DH has this specific variant of Alzheimer's.  Google has not been very helpful in obtaining information on this!!  The Dr. also mentioned that there was a speech therapist doing research on patients with this particular Aphasia, hoping that her therapy could help with their issues finding words.

At first DH said he did not want to try the therapy, but after arriving home, suddenly he's all for it.  The clinic is 1 1/2 hours away from our home, so I would have to take a day off of work and drive him in every time they would meet for the session.  I'm wondering if this would all be a waste of time just to help with her research, or whether it would really be worthwhile.  I also worry about it giving DH a false sense of hope.  

Just looking for any info some of you may have.........Thanks

Ed1937

CStrope wrote:

 The Dr. also mentioned that there was a speech therapist doing research on patients with this particular Aphasia, hoping that her therapy could help with their issues finding words.

Just looking for any info some of you may have.........Thanks

Sorry, I don't have any info for you. But I would be interested in knowing if a speech therapist could help someone find the words. My wife has a terrible time with that. She might say something like "Let's go to three to elevens" (her most used substitution for words), and become upset because I don't understand what she is trying to say. Apparently it makes total sense to her, at least part of the time.

 

Nowhere

Not sure if this link will work for you, but if you search Google Scholar you’ll find many research articles on the subject. Good luck with your decision.

 https://scholar.google.com/scholar?hl=en&as_sdt=0%2C48&q=logopenic+progressive+aphasia+life+expectancy&oq=logopenic+progressive+#d=gs_qabs&u=%23p%3Dhd1umiThuOQJ

kestrel1

 That was one of my husband’s diagnoses. He tried speech therapy. As explained to me, the goal was not to cure (no Alz cure) but to try to build other neural connections in the hope that some language skills could be retained as long as possible.  He had in person sessions but they gave him a book of exercises to do at home and so most of the work was to be done at home with some in person sessions for assessment purposes.  Perhaps in these days of zoom calls and remote learning, you would be able to have remote sessions, after the initial evaluation.  That way you wouldn’t need to take as much time off work. Maybe have a phone conversation first with the therapist and ask how they handle the sessions and what you can realistically expect. DH’s therapist was upfront about the unknowns. I don’t think it helped my husband but by the time we went his aphasia was fairly advanced and he did not want to do the home exercises. There is no way to know whether there would have been a benefit if he started earlier or was more motivated. My guess is no, but- for me, still would have been worth a try if he was motivated. It wouldn't change the ultimate outcome but even a delay in progression would have helped. (I did not have a 90 minute drive though and could minimize time off work by scheduling late in the day.) His aphasia complicated caregiving and it created a multitude of other problems- at home, at attempts to try day care, in memory care units, in hospitals.  I’m sorry you and your husband are dealing with this.    

JJAz

My best friend's husband has this diagnosis.  They called it Primary Progressive Aphasia-Logopenic Type.  It's cause is typically Alzheimer's or Frontotemporal Dementia.  Treatment for the Aphasia wasn't effective for Jim (speech therapy).  The progression of the disease and it's treatment are based on whether it's AD or FTD.  You can find more information if you google Primary Progressive Aphasia.

KatieKat1

My husband has Primary Aggressive Aphasia.

  I understand any difficulties you are dealing with.  It is one thing to have dementia/alzheimer which is serious enough but when you, doctors and others cannot communicate with the person who has this Aphasia it makes things much more difficult.

 Primary progressive aphasia is a type of frontotemporal dementia, a cluster of related disorders that that results from the degeneration of the frontal or temporal lobes of the brain, which include brain tissue involved in speech and language.

  I have worked with him on words and sentences but have not been successful. This may only be the case for him and others may benefit from speech therapy.  The neurologist for DH did not think speech therapy would help for my DH.   Husband can talk a lot but I have difficulty understanding him since none of what he says makes sense to anyone hearing him.  Every so often he will come out with a few words that do make sense and he can swear if upset and that I find interesting he can say those words with no problem. We do okay with things in general but he is now at the stage where he needs help with most everything.  

https://www.mayoclinic.org/diseases-conditions/primary-progressive-aphasia/symptoms-causes/syc-20350499

feudman

Dear CStrope:

My DW also has this variant of PPA. It had only recently been added to the two original variants around the time she was dx'ed in spring 2011. 

Although it is still more often classified under the FTD umbrella, I believe JJAz is correct. Recent research & post mortem brain studies have shown the pathology of this variant most closely resembles that of AD, not the other FTD types or other PPA variants. You will still see it described as either, but I noticed on her charts, Tam Cummings has removed it from FTD classification & placed it under AD.

As for speech therapy, an OT can assess him for that, but in our case, we tried it early on, and it was only marginally beneficial. Do you understand that all patients will become mute if they live long enough? We've been there for 4 years now, and reaching the end of stage 7. I estimate 12 years since first symptoms, which is past the median duration. But thankfully, our journey was a lot less "eventful" (& stressful) than others have described.

Best wishes to you and all others in the trenches.

CStrope

Thank you everyone for your information and contributions to my questions.  It's always so great to hear from others in the same "boat"

krisfarrington

Hi. I am new here. MY husband was diagnosed with logopenic primary progressive aphasia last Nov (mild case per his neurologist). I have a million questions, but I would like to start with has anyone else experienced emotional blunting or significant change in apathy in your relationships as a result. My once doting, emotionally responsive husband is having a difficult time knowing how to emotionally connect with me. Any help or advice would be appreciated. Thanks.

GothicGremlin

@krisfarrington --

You might want to start a new thread on this so that you get more responses....

My sister was diagnosed in 2018 with Alzheimer's, FTD/logopenic primary progressive aphasia. Her doctor told us that the logopenic PPA was the rarest of the different kinds.

Her apathy was the first thing that I really noticed prior to her diagnosis.

Peggy's far down the path at this point, and has been in memory care for almost two years, so I've dealt with a lot.

The two best resources that really helped me are Somebody I Used to Know: A Memoir by Wendy Mitchell. She was diagnosed with early onset Alzheimer's. This book is not depressing at all. And, Wendy Mitchell is still out there, posting photos on Twitter. The other is Understanding the Dementia Experience by Jennifer Ghent-Fuller.

Both of these allowed me to put myself in Peggy's shoes, and see the world as she now sees it. Both of them helped me with how to interact with Peggy so that I don't unintentionally upset her. I'm not perfect, but thanks to those two books, I have some skills now. I can't say enough good things about both of these books.

CStrope

I remember the day I sneezed and I received no response from my husband. That was the day I accepted his complete lack of empathy towards me or anyone else.....Just another part of this horrific and strange journey

krisfarrington

Thank you so much.

Whatdowedonext

My husband has logopenic aphasia. I have worked hard to maintain our emotional connection. We meditate together, it used to be occasionally, now every day. It creates a space for connection without conversation, because aphasia makes that difficult.

GothicGremlin

@Whatdowedonext - Aphasia makes everything worse. Peggy has always wanted me (and other friends and family) to help out with word-finding, so we do. Now that so much of her vocabulary is gone, our "conversations" are almost like a code that I have to crack. Sometimes I'm successful, and sometimes not. All we can do is our best.

I think you'll find that nurturing that connection will really help you both when you get into the later stages. Even at this late date (early stage 7 for Peggy), she and I still have a strong connection. I'm still the big sister taking care of stuff, and she still lights up when I walk into the room. For my part, I do my best to be worthy of that.