You left so long ago, but you're still here.

 You left so long ago, but you're still here.

You know my name, but you don't know me anymore.

It's been a long time since we were lovers.  It's been a long time since we were friends.

I try to reach you.  I try to find the light in your eyes.

But I lost you.

And then I lost myself for a long time.

Now I've found an old friend and he is helping me live again.  

He makes me laugh.

He helps me through the days when I don't want to keep going, when I want to run away.

He helps me have quiet, normal times when I can set my struggles and guilt aside.

You would like him.....I wish I could bring you back too.

This was something I wrote last winter when I was trying to understand how I felt about my life, and what was making it so difficult.  I was trying to write in black and white - get it into some simple sentences so I could have a clear picture for myself of what I am struggling with.  I have shared it with others - the support group I go to once a month; my therapist; my primary care physician; my family.  Trying to give them a picture of my life right now.  Trying to help them understand as well as trying to help me understand.  Kind of crazy, right?  But in a nutshell, it is my struggle.

So the "old friend"?  Yes, he is a friend I worked with 50 years ago at a small library.  Found him randomly on facebook by a post he made on a town website.  Sent him a message on Messenger asking if it was the same guy I'd worked with many years ago - asked him who ran the library when we worked there, and what kind of car he drove - just to verify I wasn't contacting some stranger!  Turned out he lived back in the town we both grew up in - and we began having lunch once a month.  In the fall when I was going through some trying times with my husband - a couple of trips to the hospital - frustration over life - he was so supportive and kind - telling me to breathe.  We just text - he has become a touchstone of sorts - someone normal to share a pic of a beautiful sunset, or a funny thing that happened, to ask what he thinks I might need to do about a car problem - whatever might be the latest problem of the day.  Some acquaintances and family members were sure this was a romantic sort of relationship.  And I have to say, I felt like I needed him so much to get through the day some times that I had to wonder that myself.  But I have figured it out - he is important - brightens my day - and he is a friend, a lifeline for me.  I told him he has kind of become my platonic significant other.   And he is good with that.  I need him a lot more than he needs me - but he seems to get that, too.  He is probably the only person who has seen me at my lowest - and yet seen me at my best when I am relaxed and laughing and happy.  My most authentic full self.  I find that the longer this disease runs my life, the more I have lost of ME - has anyone else had that feeling?  I don't know if it's because I've had this going on for so long?  Or if all living with this as a full time caregiver feel this too.

I decided this past winter to try to do 70 new things before I turned 70!  I haven't quite completed 70 new things, but I've made a dent!  I could not do any of the big things I first thought about - like go see a Broadway show in NYC with my brother who lives there.  So I've stuck to some simple things.  Like exploring a few places close to home that I haven't been to before - or trying coffee for the first time!  Yup!  I'd never had coffee! When my youngest son was visiting this summer, we went to the park and I rode an electric scooter!  So fun!  And last week I went ziplining!  SO FUN!  I'm trying now to establish a "community" for myself - whether it's a book club, or some volunteering.  I need to have some normal interaction.  I am burning out - fast and furious.

I struggle with the guilt of having fun, of feeling like I deserve this.  I struggle with the frustration of trying to create a life for me all over again - it is easier said then done.  I have grieved the loss of my husband, the loss of all that we were going to do once we were retired, and the loss of myself.  Then I had to grieve again with the realization that it was not so easy to live again.  But I think I'm a better caregiver now - and I've actually started walking every day, several miles - started an exercise class - lost about 25 pounds - I'm in better shape than I have been for years.  I am frightened that I may never get to live a full life - I'm 70!  I'm ridden with guilt that I'm living a life that doesn't fully include Dave.  He has had some decline in the last six months, and yet is still continent.  He needs some help with toileting, with dressing.  He just watches TV and plays his solitaire game most days.  I take him to the park and he sits on a bench while I do my walking - he is not a wanderer, thank goodness.  He goes three days a week to an adult day program for folks with dementia.  And it has become a part of his routine that he is very content with.  His gait is poor, and he moves very slowly and uses a cane for support.  Short and long term memory is very poor.  Comprehension of conversation is difficult for him, and word finding is getting to be a problem.  But his health otherwise is really good!  And his parents both lived into their mid 90's.  So I may be in this for the long haul if I don't flame out!  He is very content - not an angry person.  It is what it is - and I'm trying to make the best of it, and not feel guilty about it.

So - I haven't written for awhile.  I really don't know if anyone is reading this.  Or if it is helpful to have a shared experience at all.  Though the statistics show many many views of my blog, my understanding is that a lot of it is sort of a computerized scanning thing?  Sort of automatic?  Most of my views are from China!  Ha!  So I don't know if humans are reading.  If you wouldn't mind leaving a comment - just a short "hey" so I get a sense of if there are humans out there that may be reading this and finding it helpful?  Or someone who may have advice for me?  That would be appreciated.

Fall is here - my favorite time of year.  So I'm hoping for some beautiful weather, a few new adventures to add toward my goal of 70 new things - and acceptance of this life as it is, while still trying to find good things in each day so I can keep on keeping on!  

"I am so very tired of being all alone here," said Alice.

 Ugh.  I'm just not sure what I'm doing to myself!  It is beginning to feel like I'm on a roller coaster. Actually, it's been a roller coaster for a while.  But after the recent high, having realized that my life could be better, that I can have fun - I can relax and laugh and feel light-hearted - having experienced some hours of time where life feels good - it makes all the other hours of the days, weeks, months feel that much more low, more lonely.  It is making me question what was I thinking?  Did I think this one new friend was going to save my life?  I can't put anyone in that position.  No one wants that!  Plus, it would destroy a new fragile friendship to depend so much on someone I really don't know that well.   My epiphany that I still have life to live is now making me feel more alone.  The moments of laughing out loud, forgetting for a little while about all my caregiver duties and frustrations, having random discussions, I don't know - it felt very normal - NORMAL!  I don't think I've felt so normal for a long time.  So I rode the high for awhile, but now am riding a new low - because I can't live the normal life.  I can taste it - have glimpses of it - have moments - but now I miss it more.  

So lucky me!  I have now made myself reach a new low.  And what do I do now?  Stop texting with my new friend?  Stop meeting for breakfast every so often?  So that I don't suffer the new lows?  Or do I make the most of the new NORMAL moments?  Find other ways to create some normalcy in my life to help stay on more of a high for longer?

This is all so ridiculous!  I truly feel like I am down the rabbit hole - stuck down there!  

I think I can not give up this few hours of normal each month I've found.  It makes me want to keep on living, trying to make my way through this FTD journey.  I did start some counseling with a small practice specializing in caregiver stress.  I think it will be good.  It also is one of those things that made me feel very hopeful for a few days - then the low started again.  AAARRRGH!  A roller coaster ride for sure.

I figure if I can time the counseling with meeting up with the new friend juuuusssst right, I might be able to stretch out the highs a little longer before the lows trap me!

Man oh man.  A crazy ride.  23 years since he was fired from the first job, 11 years since diagnosis.  It has been suggested that we have ten to fifteen years to go!  So I'll be 80 and he'll be late 80's!  I don't want to wait to have some enjoyable days in my life - I may not get the chance in the future - so I'm going to grab any opportunities that come up to feel a little normal, smile alot, laugh outloud - and be a better caregiver because of it.

Take care, all.

"Who are you?" said the Caterpillar. "I - I hardly know, sir, just at present."

 It seems over the last couple of years, I have truly lost sense of who I am/was/will be.  As my husband has declined and I had to quit work two years ago because he couldn't be home alone for so long, I have been identifying myself only as a caregiver in my mind.  I've already grieved the loss of who my husband used to be.  I had years of patience, years of hopefulness that I could do this.  But over the last year, I find my patience is dwindling; my feelings of resentment rear their ugly head a little more often.  As Dave requires more of my direct supervision and help beginning in the spring, whether it's with toileting, showering, laying out clean clothes each day, taking his medication, eating his breakfast, making his lunch, making his dinner, I think - what about me?  I feel guilt for feeling resentful, guilt for sitting on my back porch at night once he's settled in bed and feeling the tears well up, guilt when I meet a friend for lunch while he is at his adult day program three days a week, guilt for asking what about me?  Eleven years ago, I thought I was superwoman - that I could do this - because he probably had only 8 to 10 years to live.  But for the last year, recognizing he is pretty healthy over all, and I've been told he could go on another 20, I have been stuck there for awhile, in a state of mind that is "poor me".  I don't like this person I've become.  I think I am grieving the loss of "me" now.  My husband's symptoms started over 20 years ago, with diagnosis 11 years ago.  And it could go on for 20 more ??  His has been slowly progressing over that time.  I'm the last of the group of four that met monthly for lunch beginning about 10 years ago - we all had husbands with FTD.   Two of the group lost their husbands over the first five years we would meet.  The third person just lost her husband about a year ago - I'm the last one!  I guess we won the lottery spot on the bell curve of how long people can live with this disease!  And that's another thing I feel guilty for - how can I even think that???  Anyway, I don't know if I can do it for 20 more, not with how I feel lately.  I can see why caregivers "burn out" - and perhaps get sick and die before their spouses.   

I recently had an epiphany....a couple of months ago, I was on Facebook, looking at a page about the history of the town I grew up in and lived for another 30 years as an adult, and saw a comment made by a person that had the same name as someone I worked with at the little library across the street from where I grew up - hadn't talked with him in probably 48 years?  I reached out to him - it was him!  We texted a few times and agreed we wanted to continue the conversation and catch up.  So we've met a two times over the last couple of months - and talked about everything under the sun - except FTD and the pains of caregiving.  I did not get pitiful glances from him.  I didn't think about my caregiver role for those few hours.  I didn't feel sorry for myself.  It was kind of like getting flowers from someone for no reason - it lifts your spirits - boosts your energy - makes life a little better!  Made me realize - wait a minute - there are things I can do for me.  I can start taking care of myself, and STILL take care of Dave.  I can do things just for me - and still take care of Dave.  I deserve to have a life besides caregiving.  In fact, I'll be better at taking care of my husband if I find some things to do that I enjoy, some people to talk to about life instead of FTD.   For a few days, I've been mulling it over - feeling hopeful for my future - feeling like I do still have a life to live - it is not over, even though it sometimes feels like it.  I'm allowed to enjoy myself, treat myself, find something I enjoy doing - and I shouldn't feel guilty about it!  In fact, doing things just for me, I find I am more patient with my husband.  I don't well up with tears many evenings once my house is quiet.  I don't feel resentful having to assist my husband with so much daily living skills because I'm making sure I get a boost for myself. 

I still have life to live, people to meet, adventures to have.  I still have part of my story to write!  My obituary some day won't say "she spent the last 30 years of her life as a caregiver to her husband" - that will be one of my roles, and certainly my most important, but I have more to do.  It has helped so much over the last month to lift my spirits and to help me see that things are OK - that I can do this, as long as I take care of me too!  So simple - and so true.

I hope anyone reading this is taking care of themselves - and not feeling guilty for doing it - not feeling guilty for sometimes hating their life - because they can find a balance by living their life, continuing their story.  

Take care.  

It's been a while . . . . .

 So it's been five or six years.  Where to begin?  My husband is still chugging along.  It's been eleven years since diagnosis, and twenty three years since I first knew something was wrong.  

Eleven years ago when I started this blog, I felt optimistic - positive - that we would make the most of each and every day because the days were numbered.

For the most part, I have lost that "positive" attitude.  I am pretty much a full time caregiver, and I know some people consider it a blessing.  I think I did in the beginning - but I was able to have a life along with taking care of my husband.  I have lost my footing in the journey - I have tumbled down the rabbit hole, and most of the time just feel very sorry for myself!  I hate feeling that way - it is not me.  But I fear it has taken over MY life.  I think starting up my blog again might help me develop a new attitude.  Because I certainly won't make it with my current attitude!  Ugh.  

It seems forever ago that I had a "support" group of three other women, all with spouses with FTD.  As I feared, I am the last member of the group.  I know my husband's progress has not been typical.  But there's a bell shaped curve - we just happened to be at the extremely long end of things. 

He has over the last few years been diagnosed with five or six auto immune diseases - but no normal corresponding symptoms.  It was all diagnosed through blood work.  It was explained to me that many of us could have the same results from bloodwork, but we have never been tested for it, that millions of people have autoimmune diseases, but it isn't causing them any problems.  He is VERY slow in his walking - uses a cane mostly for taking a step up or down, and sometimes for balance.  He has the BRCA 2 gene mutation - indicating a higher chance of cancer.  We know that only because my daughter was diagnosed in 2021 when her baby was 9 months old - hers was a result of the BRCA2 gene mutation - we got tested to see who she got it from - it was from Dave.  Plus he supposedly has Paraneoplastic Syndrome, which can indicate inflammation/cancer in the body.  But so far no cancer.  He has no memories of our marriage, our children.  He knows his kids - knows me - most people who meet him think he's a sweet old guy who is very nice - what they don't know is that after "Hola!" and a few more words in Spanish, he really can't go any further with a conversation.  Other than when someone is leaving, he'll say "Hasta la vista, Baby!"  I have him attending an adult day program three days a week, which he likes going to and I get a break.  But he needs some supervision in the shower, with clean cloths, with his meals.  I have a lock on the fridge for two reasons - he would be in it all the time looking for food, and also was constantly leaving it open.  He leaves the water on.  He mostly just watches The GameShow Network on TV, or Big Bang Theory - I do like Big Bang Theory, but he has to have seen every episode many times!  He also has one hand held old style solitaire game that he plans throughout the day until he wins.  I don't even know how old it is!  Maybe ten years?  I better see if I can find a replacement before it stops working!  

He still knows his social security number, birthdate, where he lives, etc.  I also asked him just a day or two ago if he remembered the sign language ABC's - he just to be fluent years ago as he had two or three deaf clients when he was a social worker in the late 70's.  HE COULD DO ALL THE ABC'S in sign language, but he doesn't remember any of our adventures as a young married couple, when our kids were born or his past jobs.  AAAARGH! 

The lack of empathy is the hardest.  Dave was the middle child of seven children.  He is now 74 - he is the only one of his brothers and sister to make it to 74.  His mother died about a year and a half ago - I was in constant contact with his brother to find out how things were going - she was 97 - but Dave's only comment was that he didn't really know her any more, so he didn't feel real sad about it.  When our daughter was diagnosed with cancer and was going through chemo and several surgeries, he asked me - "What is the big deal with Kristin having cancer?"  I was stunned - reminded him his sister had died of cancer at 38, one of his brothers had died of cancer at 54....I don't understand.

Sorry if you happened to be reading this as I know it is a lot of word salad.  I expect to get on here more often for my own sanity and to have a record of what these next years are like.  I have a feeling Dave is the energizer bunny that will keep going and going and going - that I'll be the one who's batteries run out first!

As Dave would say, hasta la vista, baby!

Keeper of my husband's memories

It has been awhile.  I didn't contact the Cleveland Clinic for a second opinion.  I felt I needed a break from FTD, or whatever this disease is.  I accepted that this is my life, this is how it's going to be, that Dave is probably going to outlive me, so just get on with it.  Well, that didn't work so well.  I tried pushing all thoughts of FTD aside, tried to stop thinking about it a majority of the time, tried to make all this my new normal and tell myself that many, MANY people have it much worse than I do.  And really, is my life so bad?  Does it really matter what disease he has?  This is how it is!  This is the hand I've been dealt.  I'm going to turn it in to a royal flush!  Not.

I got tired of telling myself every day that many people are worse off.  While yes, that is true, it didn't serve me very well to negate the continued grieving and loss I feel.  I found myself feeling quite alone all over again, overwhelmed at facing what the rest of my life will be.  I was constantly chastising myself for not being patient enough, not trying hard enough to draw the old Dave out, not being happy with the facts of my life.  And once again, I found myself so disappointed in my attitude on a daily basis.  Especially since things aren't so bad, right?  Caught between a rock and a hard place with no way out.  And sick of my whiney thoughts about poor me. 

Dave's gait is getting worse - very very slow.  He is having daily problems with short term memory.  Comprehension of what is asked of him seems to be more difficult.  He had a wound on the inside of his leg just above his ankle he showed me early in November on a Friday at 5 pm.  He wasn't sure how he got it or when it started.  But it was the size of a quarter, very swollen, and obviously infected.  We went to Urgent Care - got an antibiotic.  Went to the emergency room Sunday morning because it was looking worse.  Long story short - it started to get better, shrunk to the size of a dime, but around Christmas had blown back up again.  Had to go to the wound clinic every other week until March 27 when it was finally closed up and healed.  It was a venous ulcer caused by venous insufficiency.  Bad circulation in his legs.  So he gets to wear compression knee highs now.  It's been a fun last few months.  We saw the neurologist this week.  He wants to do another MRI - it's been three years since the last one.  I'm happy to have it done to see what's happening and what further involvement there may be of different areas of the brain.

We are headed to Montana for a trip to see his family in a couple of weeks.  That is where we met and got married.  It's our 40th anniversary in May.  His mom, at 93, has developed some serious dementia, so I thought it would be a good time before he can't travel and she gets any worse to go on a trip.  I may regret it, but for now I'm looking forward to it.  I have accepted that I am Dave's caretaker and the only person looking after his quality of life.  I'm the keeper of his memories.  I'm his working brain, basically.  He wouldn't think about going to see his mom - so I need to think of it for him.  He wouldn't know how to book a plane ticket, or arrange for us to stay somewhere.  So I need to do it.  And while sometimes it drives me crazy to have someone so dependent on me each and every day, I know he would do the same thing for me were the situations reversed. 

I lose a little more of him each day - moments in our lives he doesn't remember - sometimes weeks or years.  And yet he remembers that when he smoked for six years in college and a couple years after,  he smoked Kools!  I have been going through photos and when I find certain ones with a particular memory attached to them, I show it to him and tell him the story behind it.  He says he is a happy person.  I would call it content.  He can sit and watch TV for hours, doze a little, and never say a thing to me.  And that's ok.  But every once in awhile, I am compelled to block his view, and do some crazy weird dance in front of him to what ever music is playing on the game show or commercial.  At first he acts like he doesn't notice me - but I keep going!  And finally he smiles a little and tells me I'm weird - and he's right!  That's more like it!  A smile that reaches his eyes!  I love it!  I've taken to doing it several times a week.  It makes me laugh.  I need all the laughter I can get.

We're going on five years since diagnosis, and seventeen years since he was fired from his job he had for 18 years.  It's been a slow progression, a simmer rather than a rolling boil.  The diagnosis is changing.  We will see what is in store.  I'm counting down the months til full retirement from work - it's about 47 months now.  That's less time than I've been keeping this blog.  I hope Dave continues to be able to maintain so I can continue to work til then, but I also can't wait to not go to work every day!  I have two grandchildren now - they are far away, but with technology I get to see clips of them most days.  It literally makes my day.  And I'm hoping they will be coming over the 4th of July for a week.  It should be great fun, and something to look forward to.  I find the best way for me to get through the day is having something great to look forward to and be excited about.  I tend to flounder and feel sorry for myself if I don't have that future event with some fun and meaning to look forward to.  Not that taking care of my husband doesn't have meaning.  It most certainly does.  But it doesn't provide for much fun on a daily basis. 

I hope all reading this are doing well with whatever their journey is.  I'm still figuring mine out.  It seems very fluid.  Certainly not a straight line for very long.  Never know what might be just around the next bend.

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.