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!