Primary Progressive Aphasia diagnosis. week 4 update (1 Viewer)

[cosjobs]

Yesterday my wife Joyce was diagnosed with Primary Progressive Aphasia, Logopenic Variant. I spoke with her neurologist and then spent the evening researching.
In a nutshell, what I believe it to be is brain damage primarily resulting in damage/destruction of the parts of the brain that deal with speech and language. The damage is presented as neurofibrillary tangles. The prognosis is increased brain dysfunction, for another 3-10 years before death.

There is no cure. She's been prescribed an Alzheimer's drug (memantine) which may moderate and help control the onset of symptoms. B12 may help a bit, possibly creatine and even Viagra might be helpful, but nothing conclusive at this point.

There's so much to digest and try to plan. I'm feeling simultaneously driven to understand and try to fix this, but fixing it is likely a fool's errand. The cards are dealt and now we need to figure out the best way to play this final losing hand. I'll be 70 next month and Joyce will be 70 in November. Making it to 75-80 was something we would have thought a reasonable outcome a decade ago.

 

[Joe Bryant]

Aw Man. I'm sorry Buddy y'all are having to deal with this. I'm not any help on the information side. But pulling for you and Joyce as you navigate forward. Much love for y'all.

 

[El Floppo]

Ugh ..so sorry. All the love to you and the Mrs, cos.

 

[Uruk-Hai]

Crap. So sorry to hear this, my friend. All of my positive thoughts are heading your way. Give Joyce my best, please. You know how to get hold of me if you want to chat.

 

[BroncoFreak_2K3]

Sorry to hear. Positive thoughts to you and your wife.

 

[cosjobs]

Great article about Brian Jones and his demise. So many things make more sense to me now. Especially the part about Brian insisting that he give directions to the taxi driver. At lease half a dozen times in the past year, when trekking through unknown roads in New England, Joyce would shout out "turn here" in the middle of an intersection in heavy traffic. Without fail her directives were always wrong. That led to harsh words from me more than once. I feel really bad about my anger now

 

[Corporation]

I’m so sorry to hear this. Praying for you and your wife and the whole family.

 

[Ron Popeil]

I'm so sorry to hear this Cos. TPW for your family.

 

[General Malaise]

Great article about Brian Jones and his demise. So many things make more sense to me now. Especially the part about Brian insisting that he give directions to the taxi driver. At lease half a dozen times in the past year, when trekking through unknown roads in New England, Joyce would shout out "turn here" in the middle of an intersection in heavy traffic. Without fail her directives were always wrong. That led to harsh words from me more than once. I feel really bad about my anger now

I'd give yourself a pass and some grace here, GB. You didn't know what was going on with her at the time and driving around rural roads in New England - a place you're both relatively new too - can be stressful. Any time we've ever chatted, you've been nothing but loving, supportive and thoughtful towards Joyce and that's going to serve you both well here as you navigate forward. You will be her rock in all this and she knows the love you have for her.

I'm always here if you need an ear or just a voice to remind you what a special person you are and that you've got the strength, compassion and love that Joyce needs.

Always your pal,
GM

 

[The Dreaded Marco]

So very sorry, cos....

 

[cosjobs]

Great article about Brian Jones and his demise. So many things make more sense to me now. Especially the part about Brian insisting that he give directions to the taxi driver. At lease half a dozen times in the past year, when trekking through unknown roads in New England, Joyce would shout out "turn here" in the middle of an intersection in heavy traffic. Without fail her directives were always wrong. That led to harsh words from me more than once. I feel really bad about my anger now

I'd give yourself a pass and some grace here, GB. You didn't know what was going on with her at the time and driving around rural roads in New England - a place you're both relatively new too - can be stressful. Any time we've ever chatted, you've been nothing but loving, supportive and thoughtful towards Joyce and that's going to serve you both well here as you navigate forward. You will be her rock in all this and she knows the love you have for her.

I'm always here if you need an ear or just a voice to remind you what a special person you are and that you've got the strength, compassion and love that Joyce needs.

Always your pal,
GM

Thanks so much for the kind words, my friend. I appreciate your love and support.
And I will also point out that those driving instructions took place much more often in NYC or Boston. A bit more stressful that New Canaan CT>.

 

[bigbottom]

My heart breaks for you Cos. As you navigate the plan for the upcoming days, weeks and years, please prioritize joy on your to-do list. You can both still create so many great memories, even as you face inevitably daunting challenges. I will be praying for you both.

 

[Terminalxylem]

Sorry for this terrible news.

One of UH's deans was diagnosed several years ago, which is the first I've heard of it. Unfortunately, the prognosis and treatment options are as you described.

Definitely listen to her neurologist's guidance, but the best you can probably do is maximize her quality of life moving forward. If you haven't already done so, I'd have the difficult discussion about her wishes if/when her condition deteriorates.

 

[cosjobs]

Sorry for this terrible news.

One of UH's deans was diagnosed several years ago, which is the first I've heard of it. Unfortunately, the prognosis and treatment options are as you described.

Definitely listen to her neurologist's guidance, but the best you can probably do is maximize her quality of life moving forward. If you haven't already done so, I'd have the difficult discussion about her wishes if/when her condition deteriorates.

Thanks for you thoughts. We've begun the eol discussions and she seems very much at peace with her fate. We'll do as much as we can to make her life the best I can possibly make it.
Now we are in the "why did this happen?" stage. When trying to figure out what caused the brain damage all we can come up with is her knee replacement 3-4 years ago. After her surgery she was diagnosed with afib. Also, she lost a lot of her sense of taste and smell. Her neurologist and some others have expressed the thought that something happened during the anesthesiology during the knee replacement. She has not had any concussions or blows to her head. and did not previously have Alzheimer's, so what else could have started this whole mess? How did her brain damage occur?
No matter what the cause, this is where we are and plan on primarily working with that fact rather than the "why?" question, but we cannot help but wonder about it.

 

[cosjobs]

Of course the really hard question is "at what point would you prefer hospice?" If this is going to kill her, at what point will it be constant pain? Are there stages in which she would rather be dead than continue with severely dimished quality of life? If she can make tat determination before she reaches that stage, will I be able to fulfill when she no longer has the capacity to communicate it?

 

[snogger]

Yesterday my wife Joyce was diagnosed with Primary Progressive Aphasia, Logopenic Variant. I spoke with her neurologist and then spent the evening researching.
In a nutshell, what I believe it to be is brain damage primarily resulting in damage/destruction of the parts of the brain that deal with speech and language. The damage is presented as neurofibrillary tangles. The prognosis is increased brain dysfunction, for another 3-10 years before death.

There is no cure. She's been prescribed an Alzheimer's drug (memantine) which may moderate and help control the onset of symptoms. B12 may help a bit, possibly creatine and even Viagra might be helpful, but nothing conclusive at this point.

There's so much to digest and try to plan. I'm feeling simultaneously driven to understand and try to fix this, but fixing it is likely a fool's errand. The cards are dealt and now we need to figure out the best way to play this final losing hand. I'll be 70 next month and Joyce will be 70 in November. Making it to 75-80 was something we would have thought a reasonable outcome a decade ago.

Uggh.. Hate to hear this

 

[Terminalxylem]

Sorry for this terrible news.

One of UH's deans was diagnosed several years ago, which is the first I've heard of it. Unfortunately, the prognosis and treatment options are as you described.

Definitely listen to her neurologist's guidance, but the best you can probably do is maximize her quality of life moving forward. If you haven't already done so, I'd have the difficult discussion about her wishes if/when her condition deteriorates.

Thanks for you thoughts. We've begun the eol discussions and she seems very much at peace with her fate. We'll do as much as we can to make her life the best I can possibly make it.
Now we are in the "why did this happen?" stage. When trying to figure out what caused the brain damage all we can come up with is her knee replacement 3-4 years ago. After her surgery she was diagnosed with afib. Also, she lost a lot of her sense of taste and smell. Her neurologist and some others have expressed the thought that something happened during the anesthesiology during the knee replacement. She has not had any concussions or blows to her head. and did not previously have Alzheimer's, so what else could have started this whole mess? How did her brain damage occur?
No matter what the cause, this is where we are and plan on primarily working with that fact rather than the "why?" question, but we cannot help but wonder about it.

While it’s possible anesthesia impacted language/cognitive function, those effects are almost always temporary. A-fib is a much more plausible cause of neurologic damage, as it’s a major risk factor for stroke. But MRI should’ve shown evidence for that.

I know you want to exhaust all potential causes, as that may suggest possible treatments. But medicine doesn’t always work that way, as there is a ton of stuff we just can’t explain. With neurodegenerative disease in particular, it's probably some combination of genetic predisposition, coupled with multiple as-yet identified long term environmental insults, many of which invariably occur with “normal” aging.

Our brains are wonderful in their ability to adapt, with redundancy built in to overcome decades of damage. But a tipping point can be reached, often years after the pathology started, and too late to reverse it. Hopefully the neuroscientists can uncover something to change this sequence, but we’re not left with good options atm.

 

[cosjobs]

Yes, the MRI revealed she has had no strokes.
Could the afib have caused the brain damage? I think an "entanglement"?
Could the anesthesia have caused the A-fib?

 

[Terminalxylem]

Of course the really hard question is "at what point would you prefer hospice?" If this is going to kill her, at what point will it be constant pain? Are there stages in which she would rather be dead than continue with severely dimished quality of life? If she can make tat determination before she reaches that stage, will I be able to fulfill when she no longer has the capacity to communicate it?

Despite my post above, I wouldn’t try to determine every possible scenario. You need some time for this to sink in. At some point in the future, I’d consider looking at a POLST, if applicable in your state.

 

[Terminalxylem]

Yes, the MRI revealed she has had no strokes.
Could the afib have caused the brain damage? I think an "entanglement"?
Could the anesthesia have caused the A-fib?

Afib is the most common serious arrhythmia recognized with age. While anesthesia can unmask it, the damaged circuitry in the heart needs to exist a priori.

 

[rockaction]

cos, I am so sorry. I have nothing else. SMH in almost tears for everyone going or that has gone through something similar.

Awful.

 

[cosjobs]

cos, I am so sorry. I have nothing else. SMH in almost tears for everyone going or that has gone through something similar.

Awful.

the saddest arc in the circle of life. I appreciate your thoughts

 

[STEADYMOBBIN 22]

So sorry. No words just prayers and well wishes Cos.

 

[bigbottom]

Also, if you and Joyce ever make it back down to Texas, let me take you both to an Astros game. I still owe you brother.

 

[New Binky the Doormat]

so sorry to hear this news Cos. Connor and I are wishing you all the best and hoping that Joyce can overcome this.

 

[cosjobs]

Also, if you and Joyce ever make it back down to Texas, let me take you both to an Astros game. I still owe you brother.

We've been considering heading back a few months a year. Even moreso now. There are many things we love about New England, notably the physical and political climate. But I was in Austin four days this Spring and had more quality conversation with friends than I've had in over two years up here. The more I age, the more I treasure my friendships and I imagine that will always try to pull me back to Austin. But I also never want to spend another summer there. Joyce really likes the idea of maybe six months here and six months there, if we can swing it.
Also, I really miss going to see my Astros.

 

[TLEF316]

So sorry brother. All the best.

 

[Mrs. Rannous]

Please make all those eol decisions and do all the paperwork such as PoA's asap. Then you can focus on the important stuff such as her and you and your life together. Making those decisions now should bring some relief later.

Take some time for yourselves. You deserve it. Many hugs and best wishes for you both.

 

[DA RAIDERS]

Love you brother. You need anything, just call. There’s always a cold one in the trunk for you. . And if ya want to go do the ponies again, just let me know. I’ll be picking the grey horses, the ones with cool names and definitely the ones that just took a dump. Keep your voodoo handicapping to yourself.

 

[simey]

I'm sorry about Joyce's diagnosis, cos. Wishing you and Joyce time for some great years ahead, peace, and lots of love.

 

[Ministry of Pain]

I'm so sorry this is happening to your wife Joyce
Thoughts and prayers likely won't help but it's all some of us can offer
I'm sorry Cos, it's not fair

 

[Skipdog77]

So sorry to hear this. While you support your wife through this, don't be shy about also utilizing your own support system. Prayers to you and your family as you navigate it.

 

[jvdesigns2002]

It’s crazy how life can be so beautiful and yet so unfair. I have no medical expertise to offer, but what I do have are my deepest thoughts, prayers, and positive vibes to you and your entire family. I know this will come across as being lame—but I would encourage you guys to go and live your best lives. Quality over quantity is a dynamic that has probably never meant more.

 

[Judge Smails]

So sorry amigo. Wishing the best for you, you’re wife and the family.

 

[jamny]

Ugh...I can't imagine. Wishing you both and all family the strength needed to get through this challenging next chapter of your lives. Sorry this happened.

 

[AAABatteries]

Damn, so sorry to hear cos - you and your wife are in my thoughts. She’s fortunate to have a such a good dude to face this challenge with.

 

[nirad3]

Damn, so sorry to hear cos - you and your wife are in my thoughts. She’s fortunate to have a such a good dude to face this challenge with.

I will second all of this...

 

[cosjobs]

I want to thank you all for your love and support. It means a lot to me. It's been crazy busy. We decided to move on back to Austin now because our local market is hot, Austin market sucks, and if we put it off, it will only be more challenging at any point in the future. That means listing it immediately to try and have it available for someone wanting to move in time for kids fall semester. So we'll be going crazy around here getting house ready to sell, selling house, finishing dental work in Boston while the realtor wants us gone for a week or so to make it ready and easy to show. Ugh. But honestly I like being busy when stressed.

 

[rockaction]

I want to thank you all for your love and support. It means a lot to me. It's been crazy busy. We decided to move on back to Austin now because our local market is hot, Austin market sucks, and if we put it off, it will only be more challenging at any point in the future. That means listing it immediately to try and have it available for someone wanting to move in time for kids fall semester. So we'll be going crazy around here getting house ready to sell, selling house, finishing dental work in Boston while the realtor wants us gone for a week or so to make it ready and easy to show. Ugh. But honestly I like being busy when stressed.

Good luck with the listing and the hectic nature of things you're about to undertake. Best to you, cos.

 

[cosjobs]

UPDATE
I've been remiss in spending more time in the FFA. I intended to do so, as I find much comfort (and amusement) around here.
Lots has happened since I started this thread.
We decided to head back to Austin permanently, Moving truck will be here Tuesday and house goes on the market Friday, with an open house over the weekend. After the truck is loaded I'll hole up in a hotel for a week or so, trying to get some dental work finished and maybe waiting on a couple of solid offers on the house. I told the realtor to price it low enough that we get offers above list price. I think she did and I think we will. Fortunately the local market is actually hot and in particular where we're located on Secret Lake (shhhh). I think I'll probably get well over what we paid, but probably not when I add in the 100K remodel we did over the past couple of years. Whatever, we're out of here and I'm thankful its a least during a good market.
Also on the plus side, the Austin market is tanking.
We had originally planned to move into an apartment, but having second thoughts. We haven't lived in an apartment since we got married 40 years ago. I'm unsure of embracing the lifestyle, but they do have some really nice ones now...A house makes a lot more sense in a lot of ways. More space and room for visiting friends and (sadly)_eventual caregivers.I doubt I'd buy unless the market freefalls another 30% (possible this winter). The maintenance of a house is something I'd rather not have, and it would need to be tremendous value to make sense when I figure our life expectancy and no kids to pass it along to.Maybe a condo with a pool and patio and dog park or even a townhouse. I've looked at hundreds of homes and was only willing to apply for one, but my dogs are too fat big to fit under the 40# limit, This would have been perfect.
As far as J's treatment/therapy, I've been joining her for twice weekly visits to a Speech pathologist. Its good info, but it really has opened my eyes to just how far she has progressed. Mostly is tips, techniques, etc. helping her find words and communicate. If AI programming is really good, I might try and develop some apps for her, once we're settled in Austin. SOme great bonus news! I found some great videos produced by the Univ. of Texas Aphasia Treatment and Research Lab and contacted them They are great! They have already set her up with a UT Neurologist and Speech Pathologist, Also have her entered into a program and there is a chance she might get in some clinical trials. They also have a lot of programs for caregivers (me) that should prove valuable to us.
Its been a very eventful four weeks. Not finished with all the bs involved in moving out of the house, but what I can;t load, sell, or give to my nephew, I have the VA picking up next Friday. I've also hired a guy to do a clear out nce the VA takes what they want.
I've been going non-stop since the day of the diagnosis and very happy with my progress. Staying completely busy give me no time to be sad or depressed about the entire situation and I understand I'll need to be careful not to burn out and crash. If I can continue at this pace for a few more weeks, I'll recoup and recover and my new Austin digs.
Thanks for all the support and love. I so appreciate it. I know this is a lot to read, but writing it out helps me crystallize all my thoughts and hopefully develop and implement an optimal gameplan for us.
tl;dr J's sick and we're moving back to Austin

 

[Uruk-Hai]

@cosjobs if you have other options that work, don't do a townhouse. Climbing stairs all of the time stinks, man.

 

[DA RAIDERS]

I’ll be in Austin 10/12 for four days.

Thanks for the update. Thopras and all that. I’ll call you tomorrow if I have time.

 

[Runkle]

So sorry to hear. Hang in there best you can.

 

[The Z Machine]

An apartment with an elevator and other services for residents might make the most sense.

 

[El Floppo]

Of course the really hard question is "at what point would you prefer hospice?" If this is going to kill her, at what point will it be constant pain? Are there stages in which she would rather be dead than continue with severely dimished quality of life? If she can make tat determination before she reaches that stage, will I be able to fulfill when she no longer has the capacity to communicate it?

pm me if you want to talk about any of this stuff, gb Cos.

even though my brother was the next town over from my mom, he was around her so much he didn't get as profound a sense of my mom's ALS progression seeing her every day as I did seeing her once a month. I had to have the final EOL discussion with her (I spelled it all out slowly on an ipad for her review because she couldn't talk or even use the ipad anymore at that point).

so, so sorry you and Joyce are going through this. all my love.

 

[cosjobs]

@cosjobs if you have other options that work, don't do a townhouse. Climbing stairs all of the time stinks, man.

yep we want everything on first floor except maybe guest bedrooms.

 

[cosjobs]

I’ll be in Austin 10/12 for four days.

Thanks for the update. Thopras and all that. I’ll call you tomorrow if I have time.

When I don't hear my phone a ringing, it'll be you

 

[Ron Swanson]

I missed this thread when posted earlier. So sorry to hear this and all the best thoughts and wishes for y'all. Hope the return to Austin goes well.

 

[QUEZILLA]

Sorry to hear about this cosjobs. My sister is worried my mother (69) has this. Dementia runs in the family and she has been keeping a log of incident. I was initially skeptical, but am now starting to accept it could be a possibility. Still in the research phase, hence the return to the FFA. I assumed someone here would have a thread.

 

[Mrs. Rannous]

Sorry to hear about this cosjobs. My sister is worried my mother (69) has this. Dementia runs in the family and she has been keeping a log of incident. I was initially skeptical, but am now starting to accept it could be a possibility. Still in the research phase, hence the return to the FFA. I assumed someone here would have a thread.

Regardless of what your mother may or may not have, please be certain she has a will and you (or someone trusted) has PoA and medical PoA. You will not regret this, I promise.