It's been two years since diagnosis - probably at least 14 years since onset. Since then, things have changed, but things have not changed. What I have come up with is a list - a list of ten things I hate about FTD. Kind of silly, perhaps. And when I started it with my kids, it was mostly humorous. It led to more serious discussion. So here we go.
1. I hate that I have no time by myself in our home - never ever.
2. I hate that I have to drive everywhere - to run and pick up an onion in the middle of making dinner; or to take Dave to exercise and then pick him up, and if I need a ride to the airport, or when I get the oil changed, I have to call someone else.
3. I hate that I have to make all the decisions about everything - we always did that together - or maybe not always, but for the first 25 years of our marriage.
4. I hate that I have to educate every doctor we come in contact with about FTD.
5. I hate that there is no time line of progression, no way to know what happens next and when.
6. I hate that instead of looking forward to the future, I'm dreading what this disease will bring.
7. I hate that it has robbed us of ten years of income when we could save for retirement.
8. I hate that it has taken my husband, bit by bit, over these years til he is not the man I knew, not the man his kids knew. It's taken his inclination to be loving, affectionate, fun, and interested in me and his kids.
9. I hate that I have no witness to my life - no partner - no one to share this life with, the good and the bad; no one to talk about the early days because he doesn't remember them.
10. I hate not feeling like a wife anymore - just a caregiver; that it sometimes challenges everything I believed about myself and my capacity for tolerance, patience, and compassion.
The honeymoon is over. I have accepted that I have to let it go - I can't fix it, I can't make it better. Dave is not the same man I married. And I've taken some steps finally to take care of me. I have twice been to a support group that is about an hour away from here. I met with a woman whose husband was diagnosed in February one afternoon - and that was great - and we plan to meet again. I've finally talked with an attorney to understand our options and get things squared away. I've refinanced our house to lower our payment a couple hundred a month to give us more breathing room. And I just bought a ticket with credit card points to Florida for a little vacation with two friends - we're all turning 60 this year! - AND I'll get to visit my grandson.
Life is good. Let's face it - it could be much worse - and for now, we've been mostly stable for awhile - no driving, more memories lost, more loss of comprehension - but not too bad. He would say he's happy. And that is important. Doesn't mean that there are no bad days - there were quite a few over the past few months - lots of pity parties. But that doesn't help. The glass is half full.
It is what it is.
Friday, August 26, 2016
Friday, July 15, 2016
A really great blog you may want to check out
There's a blog I came across - Houldingon.blogspot.com - written by a woman whose husband has FTD. She just started her blog in June - there are five posts - and they are SO well done. Her name is Dawn - she has a wonderful and thoughtful way with words, and she seems to be able to find just the right way to say many of the things I try to express about this disease. If you happened upon my blog looking for someone on the same journey you're on, check out Houldingon.blogspot.com. It is excellent. I haven't read any quite like hers. Her latest entry, The Changeling, talks about the change in the person with FTD. Check it out!
Friday, July 1, 2016
Chapter 38 "It would be so nice if something made sense for a change."
We had a nice father's day. Two of my kids that live in town were talking about a barbeque - ribs, corn on the cob, watermelon. Dave wanted Kentucky Fried Chicken. He talked about it for several days when the kids asked what he would like. He was not interested in a barbeque. So they picked up some Kentucky Fried chicken - exactly what he wanted. I made a cake. We skyped with our son in Florida. It was the new normal, that's for sure.
Several weeks ago Dave fell - tripped over something in our room. He hit his head on our dresser and his knee was pretty banged up. I found this out when I got home from work - he didn't think to call me, even though he was having great difficulty walking and his face was swollen and he had a black eye. I asked him when it happened - I had talked with him at noon to check in like I always do and he didn't mention it. Yet he was fairly certain it had happened in the morning, but he just wasn't sure. When I called the family doctor because Dave felt the pain in his knee was a 10, he was worried about how hard Dave might have hit his head and the chronic subdural hematomas he had before, and suggested we go to the emergency room.
After Xrays and a CT scan, we were told nothing was broken, and there was no apparent brain bleed, thank goodness. He did get a knee stabilizer that seemed to help with the pain in his leg a little big. I wheeled him out to the car and we headed back home.
He would not put up with the knee stabilizer even for 24 hours. His knee still bothers him, but has gotten a little better each day. He hasn't been back to exercise at the senior center. He insisted on mowing the lawn two days after the fall - even though he PROMISED me he wouldn't do it. I should have known....but I give up on trying to restrict what he does. It's no use. I can't be home all the time - I don't have the option of staying home. His cheek bone and black eye looked far worse before it started healing. He still has a bruise on his face. It's visible in the video.
Now? His other leg is swollen and hurting him. The calf is swollen and tender. My concern is a blood clot. It's not red or hot - but it is very tender. If it's still a problem tomorrow, we'll head to the doctor's.
When completing the paperwork for the request for waiver of premium on his life insurance policy, it was very difficult to put into words on the few lines provided why he hasn't been able to work in a position aligned with his skills and abilities. How do I describe what he is unable to do? It's easier to explain what he used to be able to do - and the things he can't do now aren't concrete - there's no easy answers. It was very frustrating and reaffirmed to me how heinous this disease is. People think he seems just fine - physically he does ok. He has a form of dementia. But it's different - the deficits aren't what I usually associate with dementia. We'll see. I need to work on how to concisely describe the deficits and changes in an unemotional way. Just can't get there right now. It makes me feel sadness and grief all over again about how much we've lost; how much of what I know about him is gone. The one person I share so many memories with - and he doesn't remember them. Still working on creating new ones. Fun ones to overshadow the hard ones.
A few days before Father's Day, I looked up an old friend of his who is a priest and found a phone number for him. Dave went to seminary with him, and they were best buds. We used to often go up to visit him and his family over the holidays. But about ten years ago, it stopped. Dave called and left a message for John, asking him to call. Well, on Father's Day in the evening, John called! And to watch Dave talking with him - it brought tears to my eyes! I had a glimpse of my husband as he was years ago - laughing, joking, enjoying himself - so much fun! I'm hoping they might speak more often now. I told John a little about what's going on and suggested he read this blog to get a sense of what FTD is and does to a person. Dave certainly remembers John and their times at the seminary. It's funny the "frames" of his life he seems to remember well. It makes me think of a movie - where some times the film shakes or blurs - but then sharpens again. Or it breaks and has to be spliced back together - but a part is gone. I need to keep finding the parts that are still in tact and whole and hold on to those.
We're coming up on two years since we visited the neurologist for the first time in July, 2014. In August we got the diagnosis. I think he's been in a pretty decent holding pattern. I understand this can be the case with this disease. A holding pattern for a couple of years, and then a steep decline? We'll see. It's almost the end of June - 4th of July next weekend. Looking forward to a long weekend. Happy 4th of July!
Several weeks ago Dave fell - tripped over something in our room. He hit his head on our dresser and his knee was pretty banged up. I found this out when I got home from work - he didn't think to call me, even though he was having great difficulty walking and his face was swollen and he had a black eye. I asked him when it happened - I had talked with him at noon to check in like I always do and he didn't mention it. Yet he was fairly certain it had happened in the morning, but he just wasn't sure. When I called the family doctor because Dave felt the pain in his knee was a 10, he was worried about how hard Dave might have hit his head and the chronic subdural hematomas he had before, and suggested we go to the emergency room.
After Xrays and a CT scan, we were told nothing was broken, and there was no apparent brain bleed, thank goodness. He did get a knee stabilizer that seemed to help with the pain in his leg a little big. I wheeled him out to the car and we headed back home.
He would not put up with the knee stabilizer even for 24 hours. His knee still bothers him, but has gotten a little better each day. He hasn't been back to exercise at the senior center. He insisted on mowing the lawn two days after the fall - even though he PROMISED me he wouldn't do it. I should have known....but I give up on trying to restrict what he does. It's no use. I can't be home all the time - I don't have the option of staying home. His cheek bone and black eye looked far worse before it started healing. He still has a bruise on his face. It's visible in the video.
Now? His other leg is swollen and hurting him. The calf is swollen and tender. My concern is a blood clot. It's not red or hot - but it is very tender. If it's still a problem tomorrow, we'll head to the doctor's.
When completing the paperwork for the request for waiver of premium on his life insurance policy, it was very difficult to put into words on the few lines provided why he hasn't been able to work in a position aligned with his skills and abilities. How do I describe what he is unable to do? It's easier to explain what he used to be able to do - and the things he can't do now aren't concrete - there's no easy answers. It was very frustrating and reaffirmed to me how heinous this disease is. People think he seems just fine - physically he does ok. He has a form of dementia. But it's different - the deficits aren't what I usually associate with dementia. We'll see. I need to work on how to concisely describe the deficits and changes in an unemotional way. Just can't get there right now. It makes me feel sadness and grief all over again about how much we've lost; how much of what I know about him is gone. The one person I share so many memories with - and he doesn't remember them. Still working on creating new ones. Fun ones to overshadow the hard ones.
A few days before Father's Day, I looked up an old friend of his who is a priest and found a phone number for him. Dave went to seminary with him, and they were best buds. We used to often go up to visit him and his family over the holidays. But about ten years ago, it stopped. Dave called and left a message for John, asking him to call. Well, on Father's Day in the evening, John called! And to watch Dave talking with him - it brought tears to my eyes! I had a glimpse of my husband as he was years ago - laughing, joking, enjoying himself - so much fun! I'm hoping they might speak more often now. I told John a little about what's going on and suggested he read this blog to get a sense of what FTD is and does to a person. Dave certainly remembers John and their times at the seminary. It's funny the "frames" of his life he seems to remember well. It makes me think of a movie - where some times the film shakes or blurs - but then sharpens again. Or it breaks and has to be spliced back together - but a part is gone. I need to keep finding the parts that are still in tact and whole and hold on to those.
We're coming up on two years since we visited the neurologist for the first time in July, 2014. In August we got the diagnosis. I think he's been in a pretty decent holding pattern. I understand this can be the case with this disease. A holding pattern for a couple of years, and then a steep decline? We'll see. It's almost the end of June - 4th of July next weekend. Looking forward to a long weekend. Happy 4th of July!
Wednesday, June 15, 2016
Chapter 37 "You're not the same as you were before," he said. "You were much more ..... muchier."
I took a video of Dave last weekend, asking him some questions. It's something I've been thinking of doing for awhile, thinking if I do it annually, it might be another way to capture change. I was surprised at my response to viewing it. It of course made me sad. It shows his blunted emotions - it would appear he is a very depressed person. And yet he claims to be a happy guy. It confirmed his weakness at explaining things, at putting together his thoughts, how hard it is for him to form an original thought. It also seemed his life is so so lonely and awful. I don't know. He isn't aware anything is missing from his life. So is it missing? I guess this is his normal. But it seems so narrow and concrete and sad. A blessing for him that he doesn't feel that or know it. It seems sometimes he gives answers that he may have heard before or that he thinks he should say. My daughter cried when she watched it.
I learned a lot about what I need to do to engage him in conversation. I need to ask specific leading questions to get him started. If his sense of himself was normal, I would think this must have been a very stressful exercise as he struggled to answer what I thought were some pretty simple questions that might evoke a spark. But I had to be more direct. I had him look at it - he said he thought it was good.
This video is flawed in that I had the phone turned the wrong way to record the video the best way...I should have had him sitting at a table or something so it wasn't so unflattering....knowing what I know now about how he processes questions, I would have changed my questions. But then it wouldn't demonstrate the loss we have suffered thus far. He was always a very animated person - people considered him the life of the party and when we were dating and first married, our friends would say no party was complete without him! He always had a twinkle in his eye, and a devilish sense of humor. When a person meets him nowadays, he always talks loudly and animatedly in Spanish. People tell me he seems to be doing so well! I see what's missing - the young man who twirled me around the dance floor non-stop at our wedding. The young father who sang to his kids every night when he tucked them in for bed. The man who had his kids convinced that if they all said "cambia la luz" at a red light, it would change to green! I could go on and on. All wonderful memories. I wish he was still here with us, especially on Father's Day. I miss him.
Here goes - it's a very amatuer production! But it tells a story. It is what it is.
I learned a lot about what I need to do to engage him in conversation. I need to ask specific leading questions to get him started. If his sense of himself was normal, I would think this must have been a very stressful exercise as he struggled to answer what I thought were some pretty simple questions that might evoke a spark. But I had to be more direct. I had him look at it - he said he thought it was good.
This video is flawed in that I had the phone turned the wrong way to record the video the best way...I should have had him sitting at a table or something so it wasn't so unflattering....knowing what I know now about how he processes questions, I would have changed my questions. But then it wouldn't demonstrate the loss we have suffered thus far. He was always a very animated person - people considered him the life of the party and when we were dating and first married, our friends would say no party was complete without him! He always had a twinkle in his eye, and a devilish sense of humor. When a person meets him nowadays, he always talks loudly and animatedly in Spanish. People tell me he seems to be doing so well! I see what's missing - the young man who twirled me around the dance floor non-stop at our wedding. The young father who sang to his kids every night when he tucked them in for bed. The man who had his kids convinced that if they all said "cambia la luz" at a red light, it would change to green! I could go on and on. All wonderful memories. I wish he was still here with us, especially on Father's Day. I miss him.
Here goes - it's a very amatuer production! But it tells a story. It is what it is.
Sunday, May 29, 2016
Chapter 36 "She generally gave herself very good advice (though she very seldom followed it)."
It's been a good couple of weeks. I had ten days off of work - and my son's family came to visit with my wonderful grandson - it was SO much fun. He's ten months old, and such a happy guy. You can't help but smile! And it brought out a side of Dave we haven't seen for a while. He was quite taken with the little guy. He didn't interact a lot with him, but would notice him and called him smiley. It was very sweet.
He also interacted more with my son - Michael noted that his dad seemed much better - he wasn't certain if it was because I was less stressed than a year ago, or that Dave is much recovered at this point from his surgeries early last year. Both are true - I'm less stressed, and Dave is fully recovered from the surgeries. Dave did seem more engaged. We had a few awkward moments when people were visiting to see Michael, Jordyn, and the baby - my niece has three children that were here for a bit - the dog was a little excited and I asked that Dave put the dog outside in the back - Dave suggested in a loud voice that maybe the kids should leave. Awkward. My niece was very gracious and took it well. Even gave him a ride to church a little bit after that!
A few weeks before their visit, I discovered when talking with a financial planner that considering Dave's disability, his life insurance policy may have a waiver of premium in case of disability - I checked, and it did! So I've been trying to gather the paperwork from our neurologist - it's a gray area because there's no date to pinpoint when it all started - not like a car accident or a broken leg - I'm hoping they'll go with what Social Security came up with - April 2013 - which means we'd get about three years of premium back. That would be helpful. The waiver of premium ends this next October, so hopefully this gets wrapped up soon. I hate bugging the neurologist's office - but it's been a couple of weeks and I don't have anything back from them yet. That will be another call to make this week. I need a personal assistant!!!
Last weekend I attended a conference in Philadelphia on Frontotemporal Degeneration put on by the Penn FTD Center, a part of the University of Pennsylvania. I really enjoyed the long drive - had an audio book or two - it was great! There's something about being in a car on a long trip - a feeling of freedom - to do what I want when I want - a nice break. And the conference was very interesting. I didn't get a big chance to talk to other caregivers - but the information was validating. They reviewed the latest in research, and several experts gave overviews of each of the kinds of FTD as well as common symptoms. A caregiver and her son spoke in the afternoon - her husband was diagnosed back in the 90's with Pick's disease - he died within four years. She became a founding member of the Association for Frontotemporal Degeneration. She's served them for many years as a volunteer, and runs support groups in her area. Very impressive and inspiring. Also very sobering. Several other professionals spoke about the caregiver taking care of themselves; tips for tracking behaviors of your loved one; and the importance of taking care of legal aspects related to the future.
I had the chance to speak with someone from the Penn FTD Center whom I'd been communicating with by email about getting Dave involved with their studies. I'm hoping to get him in there for an assessment and testing for the research. They consider themselves the best - and they do ONLY deal with FTD. They don't want reports from other doctors - they prefer to start from scratch and draw their own conclusions. They seemed a little intrigued that Dave is atypical in that his onset would appear to have been at least thirteen or fourteen years ago when he began getting fired from one job after another, he has reportedly significant atrophy, and yet his progression has been very slow; plus he has had many other things going on in the past year with the vision problems, and Raynaud's, and more recently the psoriasis. I'm excited to have his diagnosis confirmed, and also to hear their opinions on his progression compared to the hundreds of folks they have seen. I also want Dave to be a part of their database and studies. Contributing in some way. Hopefully sometime this summer, that will happen. The Penn FTD Center is considered one of three centers of excellence for this disease. So - we're forging ahead.
The journey continues - I feel mine is easy compared to many, at least for now. It does get lonely - and frustrating. Sometimes I think he's beginning to have trouble finding words - but I'm not sure if it's what all of us do sometimes as we get older, or a part of his disease. So I'm starting to write examples down and the date, so I can see if it's once a week, or every other day. I hate being the recorder of behavior. I want things to be how they were. Like this weekend - a holiday weekend - nice weather - in the long past, we would have had something planned to do for fun - whether a short road trip, or a movie, or a project to work on together. But it is not that way. I still want to do things, but can't count on Dave's "help" - it's not fun anymore - just a chore. And I don't want to do something social with him, because it is also not "fun" - boo hoo for me! Pity party time! It takes away the fun of a long weekend. SO - I NEED TO PLAN FOR MYSELF! I need to plan a project at home I can do by myself realistically, and I guess hire out the other things that need to be done. But where is the money coming from for that??? I'm beginning to feel a pinch - and don't want to start pulling from savings other than for things like the furnace we had to replace a month ago - that's always fun - and the painting of all the trim on the house - long needed. Don't know how long this can last - if this continues for many many years. And how guilty I feel for even saying this. But I'm making considerably less money than my last job, and working fewer hours because I need the flexibility with the hours for his doctor's appointments and so he's not at home so long all alone. I don't know what else to do. Maybe get a second job a couple nights a week - a FUN job. I don't know. I am starting to feel the financial impact of this disease - if Dave had been able to stay at his old job with the county, we would have had the last ten to twelve years making more than twice what we are now, saving for retirement, paying off the parent plus loans ahead of time, six years to playing off our original mortgage - but it's been refinanced, and I'm checking in to refinancing again to see if I can get the payment a little lower to give us some breathing room. AAAARRRRGH! Poor me!
We are doing well - but I have my days when I worry about the future. At least we have a future, right? And it WILL BE a good one. Tomorrow is a good day to have a great day! Thank goodness there is tomorrow. It's supposed to be sunny and beautiful. Can't wait!
He also interacted more with my son - Michael noted that his dad seemed much better - he wasn't certain if it was because I was less stressed than a year ago, or that Dave is much recovered at this point from his surgeries early last year. Both are true - I'm less stressed, and Dave is fully recovered from the surgeries. Dave did seem more engaged. We had a few awkward moments when people were visiting to see Michael, Jordyn, and the baby - my niece has three children that were here for a bit - the dog was a little excited and I asked that Dave put the dog outside in the back - Dave suggested in a loud voice that maybe the kids should leave. Awkward. My niece was very gracious and took it well. Even gave him a ride to church a little bit after that!
A few weeks before their visit, I discovered when talking with a financial planner that considering Dave's disability, his life insurance policy may have a waiver of premium in case of disability - I checked, and it did! So I've been trying to gather the paperwork from our neurologist - it's a gray area because there's no date to pinpoint when it all started - not like a car accident or a broken leg - I'm hoping they'll go with what Social Security came up with - April 2013 - which means we'd get about three years of premium back. That would be helpful. The waiver of premium ends this next October, so hopefully this gets wrapped up soon. I hate bugging the neurologist's office - but it's been a couple of weeks and I don't have anything back from them yet. That will be another call to make this week. I need a personal assistant!!!
Last weekend I attended a conference in Philadelphia on Frontotemporal Degeneration put on by the Penn FTD Center, a part of the University of Pennsylvania. I really enjoyed the long drive - had an audio book or two - it was great! There's something about being in a car on a long trip - a feeling of freedom - to do what I want when I want - a nice break. And the conference was very interesting. I didn't get a big chance to talk to other caregivers - but the information was validating. They reviewed the latest in research, and several experts gave overviews of each of the kinds of FTD as well as common symptoms. A caregiver and her son spoke in the afternoon - her husband was diagnosed back in the 90's with Pick's disease - he died within four years. She became a founding member of the Association for Frontotemporal Degeneration. She's served them for many years as a volunteer, and runs support groups in her area. Very impressive and inspiring. Also very sobering. Several other professionals spoke about the caregiver taking care of themselves; tips for tracking behaviors of your loved one; and the importance of taking care of legal aspects related to the future.
I had the chance to speak with someone from the Penn FTD Center whom I'd been communicating with by email about getting Dave involved with their studies. I'm hoping to get him in there for an assessment and testing for the research. They consider themselves the best - and they do ONLY deal with FTD. They don't want reports from other doctors - they prefer to start from scratch and draw their own conclusions. They seemed a little intrigued that Dave is atypical in that his onset would appear to have been at least thirteen or fourteen years ago when he began getting fired from one job after another, he has reportedly significant atrophy, and yet his progression has been very slow; plus he has had many other things going on in the past year with the vision problems, and Raynaud's, and more recently the psoriasis. I'm excited to have his diagnosis confirmed, and also to hear their opinions on his progression compared to the hundreds of folks they have seen. I also want Dave to be a part of their database and studies. Contributing in some way. Hopefully sometime this summer, that will happen. The Penn FTD Center is considered one of three centers of excellence for this disease. So - we're forging ahead.
The journey continues - I feel mine is easy compared to many, at least for now. It does get lonely - and frustrating. Sometimes I think he's beginning to have trouble finding words - but I'm not sure if it's what all of us do sometimes as we get older, or a part of his disease. So I'm starting to write examples down and the date, so I can see if it's once a week, or every other day. I hate being the recorder of behavior. I want things to be how they were. Like this weekend - a holiday weekend - nice weather - in the long past, we would have had something planned to do for fun - whether a short road trip, or a movie, or a project to work on together. But it is not that way. I still want to do things, but can't count on Dave's "help" - it's not fun anymore - just a chore. And I don't want to do something social with him, because it is also not "fun" - boo hoo for me! Pity party time! It takes away the fun of a long weekend. SO - I NEED TO PLAN FOR MYSELF! I need to plan a project at home I can do by myself realistically, and I guess hire out the other things that need to be done. But where is the money coming from for that??? I'm beginning to feel a pinch - and don't want to start pulling from savings other than for things like the furnace we had to replace a month ago - that's always fun - and the painting of all the trim on the house - long needed. Don't know how long this can last - if this continues for many many years. And how guilty I feel for even saying this. But I'm making considerably less money than my last job, and working fewer hours because I need the flexibility with the hours for his doctor's appointments and so he's not at home so long all alone. I don't know what else to do. Maybe get a second job a couple nights a week - a FUN job. I don't know. I am starting to feel the financial impact of this disease - if Dave had been able to stay at his old job with the county, we would have had the last ten to twelve years making more than twice what we are now, saving for retirement, paying off the parent plus loans ahead of time, six years to playing off our original mortgage - but it's been refinanced, and I'm checking in to refinancing again to see if I can get the payment a little lower to give us some breathing room. AAAARRRRGH! Poor me!
We are doing well - but I have my days when I worry about the future. At least we have a future, right? And it WILL BE a good one. Tomorrow is a good day to have a great day! Thank goodness there is tomorrow. It's supposed to be sunny and beautiful. Can't wait!
Sunday, April 17, 2016
Chapter 35 "Birds of a feather flock together."
On Monday, we met with Dave's neurologist to go over the results of his MRI. As always, for the initial part of the appointment, Dave completed a mood checklist where he answered yes or no to a list of questions like Do you enjoy your life? Do you enjoy getting up in the morning? Do you cry a lot? He also completed the SAGE, a mini assessment of cognitive abilities. He didn't score badly at all - right on the borderline for mild cognitive impairment. I completed a checklist of behaviors I see in Dave, and whether they never happen, happen occasionally, happen daily but are manageable, or they are a problem. Dave a couple of daily things, but none of them are problems. It seems he is atypical in that considering the onset of this disease for him, his symptoms have not progressed as rapidly as some. He did have some more atrophy, but it was minimal. In this disease, atrophy does not correlate with symptoms. A person with significant atrophy as Dave has may be far more symptomatic, or a person may present with more advanced symptoms than Dave and imaging may show little atrophy. One of the joys of this disease! It is NOT predictable - it is a different adventure for each person. So we continue to just keep on keeping on while we can. It could be 20 years before Dave begins obviously declining, or he could fall off this plateau in a year. Keeps us guessing!
I have been emailing the Penn FTD Center with the University of Pennsylvania to see if Dave could participate in some of their research they have going on, just to feel that we are contributing something to the study of this disease. Dave would first have a clinical appointment with one of the doctors at the Center to be sure participation in the studies is appropriate. One is a biomarker study including a longitudinal FTD study as well as ARTFL, a consortium study that is helping FTD researchers build a public-health level database about FTD to move the science forward. It would involve bloodwork, both DNA and RNA, neurocognitive testing, another MRI apparently research quality, and a lumbar puncture. The lumbar puncture can apparently rule out infections and cancers that mimic FTD. I have no doubts about his diagnosis, but it will all be very interesting! I'm hoping we may also find out if there is any indication Dave has genetic mutations that indicate it could be inherited.
The neurological assessment and lumbar puncture would be billed to insurance as part of the clinical evaluation. So I have to find out if insurance will cover it before committing. I hope it does, because I think it will be interesting and informative, and I'll feel some satisfaction at contributing in some way.
I'm currently planning to go to the Caregive Conference the Penn FTD Center is having in Philadelphia on May 20. It's free - just have to find a place to stay Thursday night before the conference - I'm looking forward to that - to learning more about this disease, and to meet others going through some of the same things.
Dave overall seems well - it just boggles my mind that he can have so many medical issues all at one time - he has FTD, and in the last eight months had 4th nerve palsy with no identified cause; retinal hemorrhaging with no know cause; his Raynaud's Syndrome - an autoimmune disorder where his fingers turn PURPLE and are cold to the touch - has been very evident; and in the last month he has psoriasis - another autoimmune disorder that we discovered on his shin when he was changing out of his gown for the MRI - it looked awful! Took him to the doctor - they at first weren't certain of what it was - but ending up diagnosing psoriasis. Very patchy itchy skin. It has since showed up further up his leg, on his back in three separate patches, on his stomach, and some on his arm. UGH! How can he stand it? A prescription cream was $104, so we have been using an over the counter cortisone cream that seems to be working fine with the itching. But it is crazy! We still have upcoming appointments with the neurosurgeon in the next two weeks, and with the retinal specialist in a month or so. Then I think we're done for awhile!
The weather is beautiful today - sunny - up to 74 degrees - I think it's going to be 80 tomorrow! This kind of weather makes it easier to remember that life is good and I should count my blessings. All in all, a great day. Looking forward to tomorrow! I like this feeling!
I have been emailing the Penn FTD Center with the University of Pennsylvania to see if Dave could participate in some of their research they have going on, just to feel that we are contributing something to the study of this disease. Dave would first have a clinical appointment with one of the doctors at the Center to be sure participation in the studies is appropriate. One is a biomarker study including a longitudinal FTD study as well as ARTFL, a consortium study that is helping FTD researchers build a public-health level database about FTD to move the science forward. It would involve bloodwork, both DNA and RNA, neurocognitive testing, another MRI apparently research quality, and a lumbar puncture. The lumbar puncture can apparently rule out infections and cancers that mimic FTD. I have no doubts about his diagnosis, but it will all be very interesting! I'm hoping we may also find out if there is any indication Dave has genetic mutations that indicate it could be inherited.
The neurological assessment and lumbar puncture would be billed to insurance as part of the clinical evaluation. So I have to find out if insurance will cover it before committing. I hope it does, because I think it will be interesting and informative, and I'll feel some satisfaction at contributing in some way.
I'm currently planning to go to the Caregive Conference the Penn FTD Center is having in Philadelphia on May 20. It's free - just have to find a place to stay Thursday night before the conference - I'm looking forward to that - to learning more about this disease, and to meet others going through some of the same things.
Dave overall seems well - it just boggles my mind that he can have so many medical issues all at one time - he has FTD, and in the last eight months had 4th nerve palsy with no identified cause; retinal hemorrhaging with no know cause; his Raynaud's Syndrome - an autoimmune disorder where his fingers turn PURPLE and are cold to the touch - has been very evident; and in the last month he has psoriasis - another autoimmune disorder that we discovered on his shin when he was changing out of his gown for the MRI - it looked awful! Took him to the doctor - they at first weren't certain of what it was - but ending up diagnosing psoriasis. Very patchy itchy skin. It has since showed up further up his leg, on his back in three separate patches, on his stomach, and some on his arm. UGH! How can he stand it? A prescription cream was $104, so we have been using an over the counter cortisone cream that seems to be working fine with the itching. But it is crazy! We still have upcoming appointments with the neurosurgeon in the next two weeks, and with the retinal specialist in a month or so. Then I think we're done for awhile!
The weather is beautiful today - sunny - up to 74 degrees - I think it's going to be 80 tomorrow! This kind of weather makes it easier to remember that life is good and I should count my blessings. All in all, a great day. Looking forward to tomorrow! I like this feeling!
Saturday, March 12, 2016
Chapter 34 "He was part of my dream, of course - but then, I was part of his dream too!"
We had an appointment with Dave's neurologist this week. I had a long list of questions and concerns to discuss, and we got most of them covered. Dave will have another MRI to compare to his MRI a year ago to see if there are changes. I'm relieved about that. Our doctor is a little surprised there doesn't seem to have been much progression of symptoms over the last year, and she even had a note to herself to consider Alzheimer's as a possible diagnosis at the next visit. But everything continues to indicate FTD even with out the scans that clearly show atrophy in frontal and temporal lobes. Both Dave and I really like his neurologist. She has a wonderful manner and is so supportive and caring. We were disappointed to find out that she is moving out of the state this summer. So we'll start over with a new doctor. Ugh.
I would say there have been subtle changes over the last year, but it's so hard to tell on a day to day basis. Sometimes I think I hear him slurring words a little - but just a handful of times over the last couple of months. He does more often say things like "What do you mean, the basement?" Or repeat back some things I'll ask or say. But again, only a handful of times. He is definitely more reactive about change. I suggested we put the dog leash in the drawer where he puts the bags for when he walks Bella, and he kept taking it out of the drawer and putting it on top saying that's where it goes. He raised his voice about it, which of course made me raise my voice. I pointed out that he opens the drawer every time he takes her for a walk, so could he please try it for a few days. So far, that is working. But he was very very resistant. It's curious. And it's painful to hear his response to questions from the doctor about what he does for enjoyment or fun - watching game shows - Family Feud, Wheel of Fortune, and a few others. I feel I'm failing some how.
He is also losing track of more things in his memory. Some of the things are significant events in raising our children. I've told my children over the years when talking about marriage that a part of that relationship is there is a witness to your life - a person who knows you never put your keys in the same place, or knows which side of the bed you sleep on, or what kind of toothpaste you use. They know if you laugh really loud or if you cry at sentimental movies. I realize I'm losing the witness to my life. He doesn't remember so many of the wonderful times we had when we were first married, living in a basement apartment - I know it probably doesn't sound great, but it was! He doesn't remember the difficulties our first born had sleeping at night and how we'd hold hands in the living room as the baby cried, and I cried. He doesn't remember many of the most important trials and tribulations we went through with our children - and he doesn't remember some of the most joyful moments we had either. In thinking about that, it put into context for me why I often send short brief emails to one of my brothers on a regular basis - just about the weather, or a tv show, or my beautiful grandson. It's someone to witness my life. Sad but true.
Yes, I have many other brothers and sisters that I talk with, and I have my children. And I am blessed to have their support and care. But there's a little hole - no one to make a small comment to in passing; a random thought. When I do it at home, usually the response is an irritated "What? I didn't hear you." Somehow writing it down and sending it through cyberspace, knowing someone will be reading it that hour or day. I don't know. It does something for me. And I think my brother gets it. He doesn't have to respond. But he gets is.
My oldest son, who is 34, is very concerned about the possibility of Dave's FTD being genetic. In fact, I think it crosses his mind at least once a day, and he's said he couldn't ever get married or have children without knowing if he has this or could pass it on. I've looked at the Penn FTD Center website about research they have going on. I plan to contact them - my son is interesting in participating in their familial study - part of it is genetic testing - not for everyone. But he is certain he wants to know, and in some way wants to contribute to the research of this disease. Ideally, I'd like for Dave to get testing to see if he has the genes that indicate it would be genetic - then all my children would know if they need to worry about it or not. My oldest one is the only one who has mentioned it. University of Pennsylvania is also having a caregiver conference in May that I'm going to look at attending. I can't let this disease take me down also. It's going to take my husband, but it's not going to get me. I can't control its course, the financial impact, the emotional impact. But I can try to stay on top of it. I can find glimpses of the old Dave by looking through photos with him and prompting some memories. I'll tell him stories of how things were and sometimes he laughs and talks about it instead of just shrugging his shoulders. I just have to keep going.
More later, after the MRI.
I would say there have been subtle changes over the last year, but it's so hard to tell on a day to day basis. Sometimes I think I hear him slurring words a little - but just a handful of times over the last couple of months. He does more often say things like "What do you mean, the basement?" Or repeat back some things I'll ask or say. But again, only a handful of times. He is definitely more reactive about change. I suggested we put the dog leash in the drawer where he puts the bags for when he walks Bella, and he kept taking it out of the drawer and putting it on top saying that's where it goes. He raised his voice about it, which of course made me raise my voice. I pointed out that he opens the drawer every time he takes her for a walk, so could he please try it for a few days. So far, that is working. But he was very very resistant. It's curious. And it's painful to hear his response to questions from the doctor about what he does for enjoyment or fun - watching game shows - Family Feud, Wheel of Fortune, and a few others. I feel I'm failing some how.
He is also losing track of more things in his memory. Some of the things are significant events in raising our children. I've told my children over the years when talking about marriage that a part of that relationship is there is a witness to your life - a person who knows you never put your keys in the same place, or knows which side of the bed you sleep on, or what kind of toothpaste you use. They know if you laugh really loud or if you cry at sentimental movies. I realize I'm losing the witness to my life. He doesn't remember so many of the wonderful times we had when we were first married, living in a basement apartment - I know it probably doesn't sound great, but it was! He doesn't remember the difficulties our first born had sleeping at night and how we'd hold hands in the living room as the baby cried, and I cried. He doesn't remember many of the most important trials and tribulations we went through with our children - and he doesn't remember some of the most joyful moments we had either. In thinking about that, it put into context for me why I often send short brief emails to one of my brothers on a regular basis - just about the weather, or a tv show, or my beautiful grandson. It's someone to witness my life. Sad but true.
Yes, I have many other brothers and sisters that I talk with, and I have my children. And I am blessed to have their support and care. But there's a little hole - no one to make a small comment to in passing; a random thought. When I do it at home, usually the response is an irritated "What? I didn't hear you." Somehow writing it down and sending it through cyberspace, knowing someone will be reading it that hour or day. I don't know. It does something for me. And I think my brother gets it. He doesn't have to respond. But he gets is.
My oldest son, who is 34, is very concerned about the possibility of Dave's FTD being genetic. In fact, I think it crosses his mind at least once a day, and he's said he couldn't ever get married or have children without knowing if he has this or could pass it on. I've looked at the Penn FTD Center website about research they have going on. I plan to contact them - my son is interesting in participating in their familial study - part of it is genetic testing - not for everyone. But he is certain he wants to know, and in some way wants to contribute to the research of this disease. Ideally, I'd like for Dave to get testing to see if he has the genes that indicate it would be genetic - then all my children would know if they need to worry about it or not. My oldest one is the only one who has mentioned it. University of Pennsylvania is also having a caregiver conference in May that I'm going to look at attending. I can't let this disease take me down also. It's going to take my husband, but it's not going to get me. I can't control its course, the financial impact, the emotional impact. But I can try to stay on top of it. I can find glimpses of the old Dave by looking through photos with him and prompting some memories. I'll tell him stories of how things were and sometimes he laughs and talks about it instead of just shrugging his shoulders. I just have to keep going.
More later, after the MRI.
Sunday, January 31, 2016
Chapter 33 OUR Story
It's been a while. Let's see. Continuing with the 4th nerve palsy problem creating double vision. At the follow up in December with the ophthalmologist, it was noted that Dave had retinal hemorrhaging. In October he had it in his left eye; in December it was looking better, but he had new hemorrhaging in the right eye. So we set up an appointment to see a retinal specialist - I didn't know there was such a specialty. This physician noted the hemorrhaging, and set up a follow up in February to make sure there's no swelling that has developed. This is apparently usually brought on by high blood pressure or diabetes. Dave's blood pressure had been all over the place, so it was suggested we check in with our primary care physician and monitor his blood pressure more aggressively. So......we set up an appointment with Dave's regular doctor - who is a young new doctor taking the place of the doctor he'd seen for 30 some years - the doctor who has been on this ride with us since the beginning, who made the referral to a neurologist two years ago, has moved up to administration. The new very young doctor hadn't seen Dave before. His secretary is familiar with all Dave's history, and gave us a little bit longer appointment because there would be a lot to cover. To make a long story short, this new doctor had no sense of what FTD really is, told Dave he seemed just fine to him and that there didn't appear to be anything wrong with him. His blood pressure was fine. If it was a little high one day, just take a second pill that day......seriously? So what about the retinal hemorrhaging? What about the 4th nerve palsy? Shouldn't there be some concern over what is causing that if it's not high blood pressure? I keep being told by all the professionals that it has nothing to do with the FTD, so WHAT IS CAUSING IT? Is it just "old" age? Ugh. I feel I've lost anyone to be overseeing Dave's general health. I'm supposed to make an appointment for his regular checkup - a "welcome to Medicare" checkup. I'm not sure I want to do it with this young doctor unless he takes it upon himself to learn about FTD. I'm thinking I'll call his secretary and be frank with her, and see if he can switch to one of the older more experienced doctors. I want someone who knows what to be looking for - am I asking for too much?
I recently had a woman reach out to me, offering support and telling me to hang in there. Her situation sounds so much like mine - and it was amazing to know there's someone going through so much of the SAME THING I'm going through. We've emailed a couple of times, and I hope to stay in contact. I also hope to go to the AFTD conference in May. I need further education myself on all this.
We've made an appointment with the neurologist. I'm hoping she'll have some suggestions on a primary care physician who is on top of FTD and coordinate and pay attention to all the issues and pull them together. Pie in the sky, I'm afraid.
I've reached out to Penn State's FTD Center to see about including Dave in any studies they may have - maybe something with an annual evaluation. That would be a great way to feel like all this is contributing to something - statistics, progression, symptoms, whatever. So far I haven't heard back. It's hard to believe there isn't something here in the capital city of the state of Ohio, with a large university right here. But I haven't been able to find anything. Maybe our neurologist will be able to answer some of those questions and give us some direction. I'd also kind of like a little more evaluation to get done - maybe another MRI to see if it looks the same as a year ago. I don't know what that will tell me. I'm grasping at straws. I think because I'm afraid of what's to come, of when it might be coming.
I've been thinking lately about my story - our story. I sometimes wonder what my story is - but there is no "my" story - it's our story - for better or worse. Unfortunately like all fairy tales, there's a villain or evil witch - and we won't get a happy ending, no happily ever after. We did have a wonderful beginning to our story - and it's not the end. But I feel like the villain in the story sometimes. I know the only villain is the disease. But I find my patience constantly tested. I see the ugly side of myself sometimes. But each day, I get to try again. That's all I can do. I've been reading some other blogs - one a woman wrote along with her husband - he had FTD, and passed away this month. Sometimes he wrote the blog - and was so articulate about this disease! My husband wouldn't be able to do that. Another blog is a husband writing about his wife - he's been taking care of her for years - she is unable to care for herself at all. He does everything for her - and he appears to have the patience and goodness of a saint. I don't think I'll be that strong when the real test comes. At the same time, it seems physical problems may be easier - that's not quite the word I mean, but another isn't coming to me - to navigate than these everyday annoying behavioral and cognitive issues. They are not really measurable at this point - just evident.
Still no headway on starting a support group here - it is next on my list, and will part of my discussion with our neurologist. Sometimes want to be doing something just for me - but suffer the guilt of already doing too much just for me. Crazy game this is.
More to come.
I recently had a woman reach out to me, offering support and telling me to hang in there. Her situation sounds so much like mine - and it was amazing to know there's someone going through so much of the SAME THING I'm going through. We've emailed a couple of times, and I hope to stay in contact. I also hope to go to the AFTD conference in May. I need further education myself on all this.
We've made an appointment with the neurologist. I'm hoping she'll have some suggestions on a primary care physician who is on top of FTD and coordinate and pay attention to all the issues and pull them together. Pie in the sky, I'm afraid.
I've reached out to Penn State's FTD Center to see about including Dave in any studies they may have - maybe something with an annual evaluation. That would be a great way to feel like all this is contributing to something - statistics, progression, symptoms, whatever. So far I haven't heard back. It's hard to believe there isn't something here in the capital city of the state of Ohio, with a large university right here. But I haven't been able to find anything. Maybe our neurologist will be able to answer some of those questions and give us some direction. I'd also kind of like a little more evaluation to get done - maybe another MRI to see if it looks the same as a year ago. I don't know what that will tell me. I'm grasping at straws. I think because I'm afraid of what's to come, of when it might be coming.
I've been thinking lately about my story - our story. I sometimes wonder what my story is - but there is no "my" story - it's our story - for better or worse. Unfortunately like all fairy tales, there's a villain or evil witch - and we won't get a happy ending, no happily ever after. We did have a wonderful beginning to our story - and it's not the end. But I feel like the villain in the story sometimes. I know the only villain is the disease. But I find my patience constantly tested. I see the ugly side of myself sometimes. But each day, I get to try again. That's all I can do. I've been reading some other blogs - one a woman wrote along with her husband - he had FTD, and passed away this month. Sometimes he wrote the blog - and was so articulate about this disease! My husband wouldn't be able to do that. Another blog is a husband writing about his wife - he's been taking care of her for years - she is unable to care for herself at all. He does everything for her - and he appears to have the patience and goodness of a saint. I don't think I'll be that strong when the real test comes. At the same time, it seems physical problems may be easier - that's not quite the word I mean, but another isn't coming to me - to navigate than these everyday annoying behavioral and cognitive issues. They are not really measurable at this point - just evident.
Still no headway on starting a support group here - it is next on my list, and will part of my discussion with our neurologist. Sometimes want to be doing something just for me - but suffer the guilt of already doing too much just for me. Crazy game this is.
More to come.
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