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.
Saturday, April 20, 2019
Saturday, July 21, 2018
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.
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.
Friday, April 13, 2018
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 diļ¬erent 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.
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.
Sunday, April 8, 2018
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!
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!
Sunday, February 4, 2018
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?
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?
Sunday, December 31, 2017
Chapter 47 "But it’s no use now,” thought poor Alice, “to pretend to be two people! Why, there’s hardly enough of me left to make one respectable person!”
Oh my goodness Where has another year gone? They are starting to blend together. But it's a new year beginning tomorrow. Another fresh start. Another chance to try to do it all over again. Actually, to try to do it better, different. Not all over again. This year I feel I lost myself in this disease. I let it get me down, I let it chip away at my patience, my optimism. Despite many blessings over the year - new home, beautiful wedding of my daughter, my husband's continued plateau, sweetest grandchild on the face of the earth - I lose sight too easily of all the good simple daily blessings and choose instead to wallow in self pity, with millions of tiny violins playing a mournful tune! Why do I continue to make this choice instead of another? And in doing so, dig the hole deeper and make myself feel worse? Poor me! I realized this year what a B-I-T-C-H I can be. Not a good measure of a year.
So here goes! I'm going to try again to make better choices for myself - to fight to stay positive. Not sure how I'll do it, but I'm going to try again. Otherwise this disease - FTD or whatever disease it is that my husband ends up getting diagnosed with when all the testing is done - will keep taking - keep winning. It has taken so much already.
More doctor visits coming up - we met with an oncologist a couple of weeks ago - got more blood tests, have CT scans next week, and meet again the middle of January. The test result that has taken us down this road was ACHR Ganglionic Neuronal AB - Dave's value was high. To quote from the test results, this profile would support autoimmune encephalopathy. There is a 30% predictive value for a cancer diagnosis. So this is the doctors doing their due diligence. Dave will have CT scans of his abdomen and pelvic area. This is to check out this paraneoplastic syndrome, or hidden cancer. We will wait and see. There is still the question of FTD vs autoimmune encephalopathy. I've been researching that. It seems this mistake can be made often, but the autoimmune encephalopathy usually has a sudden onset - first thing that doesn't square with Dave's history. The onset is usually severe enough that the diagnosis is pretty quick, not fifteen years later like ours was. There are also some studies that seem to indicate that there is some question as to whether FTD can develop first and a part of the disease might cause the autoimmune disorder. Right now I don't know enough. Still trying to research it. There is so much that is spot on with a diagnosis of FTD. I'm going to ask about a spinal tap. It seems there might be something more definitive to come out of that. When I look at symptoms of autoimmune encephalopathy, they don't match up - at least not like FTD does. So I'll have to make some notes,, see what the oncologist has to say, and go to the next appointment with the neurologist armed with questions. Fun, fun, fun.
Sent an email to an old high school friend tonight - I happened to pass a big empty parking lot this evening and saw a car doing donut holes on the slippery pavement - the car was doing 360's, whirling around - remembered doing that once in high school with him. Bad behavior - fun - risky - but it made me smile. Reminded me of a feeling of freedom - something I'm missing. Another thing to figure out how to find. I sometimes feel I need to be very very careful of all I do - if something happens to me, Dave would be in trouble. BIG trouble. So, it'll be a new year. Going to try one thing each day to make ME smile. But do it cautiously and carefully! And try to keep myself intact and of sane mind!
2018, bring it on!
So here goes! I'm going to try again to make better choices for myself - to fight to stay positive. Not sure how I'll do it, but I'm going to try again. Otherwise this disease - FTD or whatever disease it is that my husband ends up getting diagnosed with when all the testing is done - will keep taking - keep winning. It has taken so much already.
More doctor visits coming up - we met with an oncologist a couple of weeks ago - got more blood tests, have CT scans next week, and meet again the middle of January. The test result that has taken us down this road was ACHR Ganglionic Neuronal AB - Dave's value was high. To quote from the test results, this profile would support autoimmune encephalopathy. There is a 30% predictive value for a cancer diagnosis. So this is the doctors doing their due diligence. Dave will have CT scans of his abdomen and pelvic area. This is to check out this paraneoplastic syndrome, or hidden cancer. We will wait and see. There is still the question of FTD vs autoimmune encephalopathy. I've been researching that. It seems this mistake can be made often, but the autoimmune encephalopathy usually has a sudden onset - first thing that doesn't square with Dave's history. The onset is usually severe enough that the diagnosis is pretty quick, not fifteen years later like ours was. There are also some studies that seem to indicate that there is some question as to whether FTD can develop first and a part of the disease might cause the autoimmune disorder. Right now I don't know enough. Still trying to research it. There is so much that is spot on with a diagnosis of FTD. I'm going to ask about a spinal tap. It seems there might be something more definitive to come out of that. When I look at symptoms of autoimmune encephalopathy, they don't match up - at least not like FTD does. So I'll have to make some notes,, see what the oncologist has to say, and go to the next appointment with the neurologist armed with questions. Fun, fun, fun.
Sent an email to an old high school friend tonight - I happened to pass a big empty parking lot this evening and saw a car doing donut holes on the slippery pavement - the car was doing 360's, whirling around - remembered doing that once in high school with him. Bad behavior - fun - risky - but it made me smile. Reminded me of a feeling of freedom - something I'm missing. Another thing to figure out how to find. I sometimes feel I need to be very very careful of all I do - if something happens to me, Dave would be in trouble. BIG trouble. So, it'll be a new year. Going to try one thing each day to make ME smile. But do it cautiously and carefully! And try to keep myself intact and of sane mind!
2018, bring it on!
Monday, December 11, 2017
Chapter 46 "It would be so nice if something made sense for a change."
What if it's not FTD???
Dave's new neurologist did a range of blood tests that came back with a lot of abnormal results, showing a lot of inflammatory activity and auto immune issues. Despite the MRI, he believes it is a central nervous system inflammatory condition . . . . and my mind is spinning! Are you kidding??? I've educated myself on FTD, I've gone to conferences on it, I feel a community with the people who are dealing with this, I've financially supported the AFTD, I'm doing this blog of our journey - I"M ALL IN! But now I feel I'm on my way out and freefalling! There's nothing definitive yet. How frustrating!
We are seeing an oncologist on Thursday for further evaluation of the inflammatory markers and possible paraneoplastic syndrome, or "hidden cancer". What a roller coaster! What do I do now? A central nervous system inflammatory condition. That's what we're looking at now. I don't know what's next with regard to a definitive diagnosis. I don't know anything about progression, prognosis, nothing! I don't know what to do next! I don't know if there's support out there for an unnamed disease!
He has all the symptoms of bvFTD - but that makes sense because he does have atrophy in the frontal and temporal areas - so he would suffer the same losses in ability, the same changes in personality, the same odd behaviors. But his progression has been so so slow unlike so many others. It makes me wonder how many others who have been living with this for a long time, who have experienced the slow progression, may actually have a different diagnosis than FTD? I wonder if we're on the right track looking at something else?
One comment the doctor made was that he may not get drastically much worse. Which is good, right? But at the same time, that means this is my life for a very long time. I'm having a very hard time wrapping my brain around it. It's a different journey. I guess in part because we don't have anything definitive yet. I don't know. I don't deal well with all this uncertainty!
So, I need to think on all this, cogitate a little. Maybe take up drinking. I don't know. Unfortunately with my current state of mind, nothing looks to promising or rosey....so there's an adjustment needed.
Curiouser and curiouser. Do I change the name of my blog if we end up with a different diagnosis? This all feels so weird. It's not like finding out you don't have cancer or something....it could be more bleak. I have to come up with a different life plan! No impending demise. We'll see.
Happy holidays to me - and Dave did tell me he doesn't care if we decorate or anything.....he used to love Christmas just like I do...or did. This year has been enlightening in realizing some things just don't matter to him. This is a lonely journey, FTD or central nervous system inflammatory condition. . . which is a mouthful by the way. FTD is much simpler to say! Right?
Santa, please bring me a shiny pair of those rose colored glasses for Christmas!
Dave's new neurologist did a range of blood tests that came back with a lot of abnormal results, showing a lot of inflammatory activity and auto immune issues. Despite the MRI, he believes it is a central nervous system inflammatory condition . . . . and my mind is spinning! Are you kidding??? I've educated myself on FTD, I've gone to conferences on it, I feel a community with the people who are dealing with this, I've financially supported the AFTD, I'm doing this blog of our journey - I"M ALL IN! But now I feel I'm on my way out and freefalling! There's nothing definitive yet. How frustrating!
We are seeing an oncologist on Thursday for further evaluation of the inflammatory markers and possible paraneoplastic syndrome, or "hidden cancer". What a roller coaster! What do I do now? A central nervous system inflammatory condition. That's what we're looking at now. I don't know what's next with regard to a definitive diagnosis. I don't know anything about progression, prognosis, nothing! I don't know what to do next! I don't know if there's support out there for an unnamed disease!
He has all the symptoms of bvFTD - but that makes sense because he does have atrophy in the frontal and temporal areas - so he would suffer the same losses in ability, the same changes in personality, the same odd behaviors. But his progression has been so so slow unlike so many others. It makes me wonder how many others who have been living with this for a long time, who have experienced the slow progression, may actually have a different diagnosis than FTD? I wonder if we're on the right track looking at something else?
One comment the doctor made was that he may not get drastically much worse. Which is good, right? But at the same time, that means this is my life for a very long time. I'm having a very hard time wrapping my brain around it. It's a different journey. I guess in part because we don't have anything definitive yet. I don't know. I don't deal well with all this uncertainty!
So, I need to think on all this, cogitate a little. Maybe take up drinking. I don't know. Unfortunately with my current state of mind, nothing looks to promising or rosey....so there's an adjustment needed.
Curiouser and curiouser. Do I change the name of my blog if we end up with a different diagnosis? This all feels so weird. It's not like finding out you don't have cancer or something....it could be more bleak. I have to come up with a different life plan! No impending demise. We'll see.
Happy holidays to me - and Dave did tell me he doesn't care if we decorate or anything.....he used to love Christmas just like I do...or did. This year has been enlightening in realizing some things just don't matter to him. This is a lonely journey, FTD or central nervous system inflammatory condition. . . which is a mouthful by the way. FTD is much simpler to say! Right?
Santa, please bring me a shiny pair of those rose colored glasses for Christmas!
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