Chapter 51 Life goes on . . .

Life goes on.  I've done more research, talked with other people, felt supported through all this confusion.

So it's been about three months since the formal change in diagnosis.  Dave has been on the Methotrexate for awhile now.  It has made his psoriasis go away!  No more itching!  But other than that, there has been no miracle change - no sudden recovery.  I didn't think there would be, but a small part of me held out hope.  At this point, if indeed his dementia is a result of an autoimmune disease, this may help prevent further deterioration.  But it makes me sad to think of him stuck where he is for who knows how long?  I guess it's just sadness for myself, though.  Because he still doesn't think anything is wrong with him.  Which is good, right?  I try to find the great side of this - perhaps our journey won't include some of the awful situations that some of my FTD friends are experiencing.  Maybe he won't end up in a wheelchair, or not being able to swallow.  Maybe he will maintain continence.  I need to dig deep and find that patience I used to have, the gladness I used to feel at being able to care for him.  Sometimes I feel a part of me is lost forever.  There seems to be more memory loss.  He doesn't remember how we met, when he proposed to me, the day we got married.  We don't have conversations, except about the grocery list he makes each day.  The things I'm missing, the companionship, lively discussion, laughing together - this has been going on for so long that I'm not certain if this is just a normal part of an aging marriage, or truly a disease?  I find myself questioning so many things.  I've thought about reaching out to people he knew long ago in college and right after college to find out what he was like back then.  Or did I create this awkward living arrangement because basically I'm hard to live with and expect too much?  I have to remind myself that he has significant brain atrophy; that he has a very very slow gait; that he still needs to be reminded that TV shows are made up stories with actors; that he isn't interested in others' lives; that he doesn't comprehend some simple things; that he has no social graces anymore.  But wait - alot of people tell me some of these things are just like their husband!  (I've suggested to a couple of people if their husbands think TV is real, they better get their husband to a doctor!)  I know most of what I see in Dave isn't normal.  And I don't think that much of a monster wife to have caused enough trauma to bring this all on! 

I've read about some instances where a spouse has bvFTD concomitant with autoimmune disease.  I asked our neurologist about this.  He feels strongly that Dave's symptoms have been going on for so long and in some ways are atypical that it is the central nervous system autoimmune disease, and not FTD.  But he said he can not be more specific than that.  He fully supports and encourages a second option.  Some people offering support have said - if it looks like a duck and quacks like a duck - for all intent and purposes, it IS a duck!  It's weird, because obviously his symptoms are caused by the atrophy in the frontal and temporal lobes of the brain.  The question is what is causing the atrophy?  And FTD can only be confirmed by autopsy.  So how can FTD be completely ruled out?  I guess another question for me is why am I so insistent that FTD be a part of the diagnosis?  I think it's because I'm invested in that.  Three and a half years invested.   I don't know.  I vacillate back and forth between thinking I'm an idiot to even question it, and of course I want a second opinion!  A significant diagnosis has been changed after three and a half years! 

I am contacting the Cleveland Clinic to see about scheduling an assessment there for a second opinion.  I'd like confirmation of one or the other, or perhaps evidence of both.  I'd like to have someone answer my questions about what causes this autoimmune disease and perhaps a little more definition, maybe more detail.  I'd like to know what to expect, what to watch for.  And I've been putting this off for a couple of weeks.  This is Saturday, July 21.  I'm committing to beginning the process with the Cleveland Clinic on Monday, July 23!  I've just got to do it so I stop ruminating over all this. 

Need to plan some trips for myself - hope to go to Saratoga Springs to visit my brother and sit on his front porch.  And I have a granddaughter due in November!  That will be a fun trip, and one I'll take on my own!  After the experience in March travelling with Dave to California, I don't think I can do that again.

So, life goes on.  And it is good.  I have much to be thankful for.  Sometimes I have to remind myself. 

Chapter 50 "You're quite right, Mr. Hatter. I do live in a topsy turvy world."

So, after four years of a diagnosis of FTD, with symptoms beginning before 2002, we now have a new diagnosis.  Central nervous system autoimmune disorder, or inflammatory  disorder.  In particular his condition is characterized by the following antibodies: 1) alpha-3 ganglionic AChR antibody disorder 2) Rheumatoid factor 3) speckled antinuclear antibody and 4) SS-A antibody.  These antibodies were detected through blood tests done by our new neurologist.  Interestingly, when I research these antibodies, they usually indicate something specific like rheumatoid arthritis - Dave doesn't have this - or cancer - Dave had CT scans of everything and no evidence of cancer - lupus - nope, no symptoms of lupus - MS - nope - no lesions showing in his MRI's - Sjogren's syndrome - nope!  Dave's symptoms have always fallen right in line with FTD - textbook - except his progression has been very slow, and his atrophy is the frontal and temporal lobes.  In summary, he has an autoimmune CNS disorder creating a number of antibodies that have attacked his brain causing his cognitive symptoms and brain atrophy.  Since he has gone a long time without severe changes, it is likely he will just continue to smolder along and it is not likely he will develop a different syndrome or get a lot worse over time, according to our doctor.  

I'm still trying to wrap my mind around this - the first couple of days after our doctor visit, I spent a lot of time crying.  Because, selfishly, all I could think was how can I do this for thirty more years?  But after letting it all settle in and percolate, I decided to try to look at this positively - it's not terminal.  I have already stopped waiting for a big shoe to drop, stopped looking for a change each and every day, waiting for the incontinence to kick in, wondering how much longer I'll be able to work.  So that's good.....the sense of urgency has receded.  He is starting on Methotrexate - it's often given to treat rheumatoid arthritis - it's actually part of the armory for chemo in treating cancer.  It's an immunosuppressant.  Scary.  It might help.  The sense is he's had this for so long, there will be no reversing things.  But what do we have to lose, right?

I also found this information tonight - "neurologists at Mayo Clinic in Rochester, Minnesota, have found that patients whose symptoms mimic those of neurodegenerative dementias can actually have an autoimmune cause for their conditions. Although autoimmune dementia responds to immunotherapy, the disease often goes untreated because of misdiagnosis as a neurodegenerative or psychiatric condition."  "It can be devastating for patients to be labeled with a neurodegenerative disease but actually have an immune-mediated dementia, because they're missing out on a treatment that can reverse their symptoms," says Eoin P. Flanagan, M.B., B.Ch., a consultant in Neurology at Mayo Clinic in Rochester, Minnesota. "If treatment is delayed, patients tend not to respond as well. It's important to recognize this condition because you might miss your opportunity for treatment."  Hmmmm.  So if this had been caught awhile ago, it could have been reversed?  That's depressing. 

Plus, how many others have received this diagnosis like we did and the right blood tests weren't done?  Oh well.  It's the practice of medicine.  Most research I find are that symptoms usually come on much much faster for autoimmune disorder and include headaches and some other things that Dave has never had a problem with.  

In researching the Methotrexate, I found several articles indicating it might cause "foggy brain" - oh great!  One thread indicated neurologists who believe it might cause FTD, and rheumatologists saying it would not happen that way.  UGH!  

I'm thinking of getting a second opinion at the Cleveland Clinic.  I'm going to let it percolate for awhile.  It has already gotten so complicated and convoluted!  

So I may be closing up my blog soon, or change the name, or something!  I guess I should wait til I see about a second opinion.  But if going through this helps one person ask for the right blood tests to make sure there isn't an autoimmune disorder, it will have been worth it all.  

Spring has finally sprung!  A beautiful day today.  Can't wait for a few more.  It lifts my spirit so much, and helps me get through the day.  And do it all again tomorrow.    

Chapter 49 "There were doors all round the hall, but they were all locked, and when Alice had been all the way down one side and up the other, trying every door, she walked sadly down the middle, wondering how she was ever to get out again."

Haven't written for awhile.  It's been a tough couple of months.  I know I am in a rut.  I feel I'm losing myself to this disease.  Something I've sworn wouldn't happen.  But some days it is really tough.  My husband and I have been married for 39 years next month.  Most of those have been wonderful.  But the last sixteen have been tough!  Do I still love him?  I think so.  It's just so different.  I'm a caregiver now, and he's the person I take care of.  There isn't companionship or affection.  There isn't interest in my life.  There isn't appreciation of what I do.  In fact, there's no comprehension that anything is missing from our life or that things are different.  We were talking tonight about his appointment tomorrow morning with the neurologist.  This is the third visit to wrap up all the tests and figure out what's going on.  I asked him if there's any questions he has for the doctor.  He wants to know if he has FTD, because if he doesn't, he wants to stop wearing the wristlet he has that says "FTD:  Fight this disease" - ???  No one is making him wear it.  He put it on three years ago and has worn it every day since.   He firmly believes that nothing is wrong with him "yet" - and it doesn't matter what I say - he has left the conversation almost before it began.  So do I love him?  I love the life we had, the family life we created together - I love all the memories and the person he was.  But it is hard to wrap my head around this love - it's not like loving a parent; not like loving a child; not like loving a partner or friend.  There is no reciprocation or demonstration of love.  So it's weird.  I will always do my best to take care of him as best I can, and keep him content.  But I feel so lonely sometimes that it makes me mad! 

The loneliness sucks.  Some days I call my family or friends, and no one answers or is available, and I just want to cry.  Sometimes I'm afraid they see who it is and don't want to answer.  But I'm not calling to complain or cry.  I just want to hear about someone else's life, or talk about the weather, or some tv show, or politics even!  I need to hear about someone's more normal life and get to pretend mine is normal.  I don't want people calling and saying, "so how are you doing?" in a serious, solemn voice.  I want to hear an enthusiastic, "SO HOW YOU DOIN'?" with a smile coming through! I want my phone ringing because my kids want to talk to me!  Or someone wants to talk to ME, not the caregiver.  Sounds silly, I know.  My kids are great, but their lives have expanded and are full, right when mine feels pretty empty.  I'm so happy for them, but at the same time I hate it.  I hate that I get tired of being the one to call, and sometimes it's days before I get a call back, and I end up making some smart remarks.  It is so PETTY!   Because no one else is responsible for my happiness other than me. 

This is the time when Dave and I should be back to having fun, doing things together, making plans - partners in crime.  Instead I am a caregiver.  My time once I leave work is pretty much dictated by what Dave needs.  I know I'm allowed to do my own thing also, but I feel quite guilty. And I feel MAD!  I want a witness to my life back!  I want a partner in crime!  I want someone to help me plan the patio in the back yard, and pick the paint color for the house, someone who really cares about it and can offer a thoughtful opinion.  I want my best friend back to talk to, to worry with, to laugh with, to play cards with, to care if I had a good day.

I know I need to get in and talk with someone.  Get some balance.  Because, as I always say, I know it will only get worse, and that for now, my life is pretty great.  But there are days or weeks when the FTD is getting me too.  It truly is a family disease.   Nothing big ahead for us - so I'm back to making sure I truly understand the process of qualifying for Medicaid.  Keeping my once a month lunch with my FTD wives club!  I always look forward to that.

I'm hoping to get some clarification about the whole FTD vs encephalopathy tomorrow.  I've realized it doesn't matter what this neurologist determines.  What I struggle with is what people who's spouses have FTD struggle with.  He has all the symptoms of FTD, we have all the struggles of FTD.  And it will end the same way, no matter what the diagnosis.  I have a feeling it'll be dual - FTD and something else.  We'll see.  I need some doors to open for me.  Actually, I just need to figure out how to open them.  And I will.  Come hell or highwater.  Because I don't think I'll last long stuck where I am!

Chapter 48 "Curiouser and curiouser....."

Well, looks like paraneoplastic syndrome has been ruled out - no sign of cancer in the CT scans or the PSA test, or any of the other blood work ordered by the oncologist.  Some relief, but more questions now.  Curiouser and curiouser!

I've found some interesting research articles on autoimmune encephalopathies....but it all seems pretty squishy - many novel forms of it associated with antibodies, and overlap of syndromes.  No clear definition of diagnosis.  We don't see the neurologist again til April, and I know he's an expert in his field.  I worry about questioning too much and offending him.  While the study of these disorders has revealed how antibodies might alter memory, behavior, and cognition, the more definitive symptoms seem to be headache, seizures, and sleep dysfunction.  None of these three apply to Dave.  He has never been a person to have headaches.  He seems to sleep solidly at least nine hours at night, and dozes during the day.  He's had two seizures in his life - and they were while he was in the emergency room with head trauma after a fall on ice over three years ago - he had those within minutes of each other, and hasn't had any since, despite other falls.  AAARRRRGHH!  Why can't anything be clear and easy?  Feels like a blurry picture right now, like a Polaroid picture not developing like it's supposed to.

Does it really matter what it is?  FTD?  Autoimmune encephalopathy?  Or something else?  One - I can hardly get the words "autoimmune encephalopathy" out - it's a tongue twister.  Two - AE is relatively "new" - progression?  prognosis?  Can't locate much on it, because onset seems to be significant enough that it is caught early and reversed..  Three - THE SYMPTOMS DON'T SEEM TO LINE UP WITH DAVE'S SYMPTOMS!  Perhaps Dave's progression has not been as fast as some, obviously changing the prognosis a little bit - Dave has always been atypical - I wouldn't have married him if he wasn't!  But FTD varies a lot.  I know that to be true.  I also know that beginning fifteen years ago, he started changing.  Loss of filter; loss of empathy; unusual behaviors; loss of interest in others; loss of job after job due to gradual cognitive decline and loss of executive function.  He hasn't been able to smell anything for years - his gait is slow and shuffling.  The last year, he's lost a lot of memories and gotten more snappy with every one.  The long term memory loss is the most painful to see, and short term is frustrating.  In the three and a half years since we finally got a diagnosis, there has been decline.  Nothing major - no incontinence, nothing big and obvious, but subtle and progressive.  So what's next?

I'll continue to research, continue to wait for the other shoe to drop - because I know it will happen one day.  Continue to try to balance this life we are living.  This disease is beginning to take its toll on me - the last few months at work I feel I'm making mistakes, forgetting things - it's CRAZY!  I don't make mistakes!  I'm feeling more trapped on a daily basis, losing my ability to forge ahead, to be resilient, to distract.  Losing myself.  Need to snap out of it again.  Which I will.  Hopefully with spring on its way, and the days getting longer, it will happen naturally without too much effort.  Because I'm not sure I have it in me to make the effort.  Hopefully planning to go to California in March and see our grandson.  Once the dates are firmed up and the tickets paid for, I'm sure I'll find a new pep in my step.  And yes, my life is good.  Things don't have to be perfect to be wonderful.  Right?