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Comment Author Weejun CommentTime 9 hours ago edit delete
I've been lurking here for several months and tonight finally had to comment. My husband has dementia - frontotemporal (FTD), not AD. I'm also in the indifference stage -- I'm just a caretaker and only have memories of my deep love for him -- and of his for me. I'm fed up with doctors tossing samples of Aricept and Exelon at him and sending us on our merry way. We live near a big city and have seen two respected neurologists and I have no use for them. My spouse (what does DH stand for?) refuses to admit -- or cannot comprehend that -- he has dementia. Our life has become a living nightmare. Why on earth would anyone want to slow the progression of this horrible disease. I cared for my parents as my father died of AD and I want my husband's disease to progress as fast as possible so I can get on with living.
Comment Author Starling Comment Time 1 hour ago edit delete
Weejun, Welcome. I think you are going to find that posting as well as reading will make a difference for you. I know it helps me to say all of the things I can't say anywhere else.
The dementia drugs don't work on FTD, so it is a good thing you aren't trying to give them to him.
Where the dementia drugs do work, they don't slow the actual progression of the disease. They don't make the person live any longer. What they do is slow down the symptoms. Almost everyone is taken off the drugs at the very late stages and in many cases they then progress rapidly to where they would have been if they had never had a drug. The drugs, where they work, just make stage 4, 5 and 6 last longer and stage 7 shorter for the patient. They provide a better quality of life.
What works for FTD is the anti-psychotic drugs if you need them, and with FTD, you probably need them.
And you are entitled to a life of your own. You are entitled to have it NOW as well as later. We all are.
Welcome Weejun. My husband also has FTD-remember when that meant flowers coming? Aside with dealing with the disease you will also have to advocate for your husband as most docs treat all dementias the same. Your husband will need antipsychotic drugs like seroquel to control the rages or you will go out of your mind. We're here with youl Ask away.
Joan, I admire your tenacity and perseverance. Some day, we may actually stick to the topic, but I doubt it ... :-)
Weejun, welcome to our little family. Glad you finally decided to make your presence known.
DH stands for "dear husband."
Aricept and exelon are not only ineffective for treating FTD, they are actually contraindicated. They can cause increased agitation and other negative behaviors.
Weejun, my Dear Husband (DH) is probably in the very early stages of FTD. I have been keeping a list of others on this site who are dealing with FTD. Some have already lost their Loved Ones (LO). (Please correct me, everyone, if I have missed you or added you in error.) When I first found this site, it helped me to search on a name and read specifically about how and what they are dealing with with FTD. Sheila1951, Bettyhere, Bluedaze, Kathi37, FTD, Baltobob, Longyears, Pollyp53, Dilly, Kadee, Mya, LibbySD, divvi and Sandy306 are maybe. I hope this helps. There are many similarities between the different kinds of dementias but, as the others have mentioned, the drugs are not the same.
With FTD, the patient tends to retain their memory and ability to function for a long time. Because of this, changing the subject and avoiding the truth in an attempt to diffuse the anger doesn't work very well in the early stages. Also, other people don't see the moods, anger, fits and personality changes that the spouse see. So, these people think that our spouses are perfectly "normal" because this is how they act.
Some of these people have very small children at home. Many are in their 40s and 50s.
Also, please go to the discussion about what are our ages are, if you want, and let us know how old you and your DH are, and may be some history.
There is also someone on this board whose screen name is FTD. If you click "search", write in FTD, and circle "users", you will find her post.
Copy and paste this link for a clear description of what the frontal lobe controls. http://www.neuroskills.com/tbi/bfrontal.shtml
Here is an excerpt -"The frontal lobes are involved in motor function, problem solving, spontaneity, memory, language, initiation, judgement, impulse control, and social and sexual behavior."
Also, my friend, whose husband has FTD, highly recommends this book - copy and paste this link for "The Banana Lady"- http://astore.amazon.com/wwwthealzheim-20/detail/1425101267/103-3766747-6085409.
Hi weejun, I am so glad you found us. My 58 year old husband has FTD. I believe we are in stage 6. Sometimes I think very close to stage 7. He is incontinent but still walking. He does a lot of pacing. Thankfully he sleeps through the night. He doesn't talk much and when he does it is hard to understand him....a lot of nonsense words. He was officially diagnosed in Dec. 2006 , and previous to the diagnosis he was treated for severe depression for at least 3 years. He attended day care last year, but this year when I go back to work (I am a teacher) I will have home health aids. Please post often with any questions or comments. You will find lots of support here.
My husband has a frontal lobe variant of AD so he has both the frontal lobe as well as some memory issues. They initially thought he was FTD but the testing and PET scan actually confirmed AD. He has responded to the aricept which has been nice but over the last 3 months we are starting to see some of the aggitation that I have read about. It is hard to see since he has never been anything but a lovable kitten our 41 years together. I am just starting down that road and am not looking forward to the journey. Welcome aboard. I have just joined as well and already feel better about life and my future...the people here care and understand better than any of the Drs because they have experienced the disease in their own lives.
Hi Weejun, my DH has FTD/EOAD he is 58 years old stage 5, diagnosed a couple of months ago . All I can say 5 months after diagnoses it is extremely progressing fast. It seems like almost weekly there are more signs and symptoms that are coming . I have posted on www.alz.org message board about FTD the last few days.You may want to check that site out also. My husband is on exelon, seroquel, megestrol ,synthroid,celebrex and 12 other over the counter meds.
I think the most disturbing to me since the diagnosed that my husband is developing diseases unrelated ( I think) to dementia. Such as srogens syndrome, hypothyroidism,pernicius anemia, COPD (doesn't smoke),myasthenia , chronic eye movement, possible lupus, and so much more. I would like to know if other FTD patients are developing other disorders or diseases along with this disease.
FTD I wonder how many of your husband's symptoms are related to his meds. Your pharmacist might be able to help you if you are uncomfortable doing it on line.
My DH has uncomfortable things going on like tired all the time, pressure in head, too hot, too cold, eyes glassed over when tired, but I think they are related to the fact that he just simply doesn't feel good and for the past several years, he complains more. He is very negative all the time about everything so he is more vocal about his problems. He does have a couple of things wrong with him that started about the time I began noticing weird thing happening.
I'm not sure if it is all related or not. I can't help thinking that they are related some how.
After a few (3 or 4) really bad Sundays, during the last two weekends, my DH has put a lot of effort into staying calm and not getting angry. However, it has taken a lot of his strength to do this. He is tried to begin with from working out of town all week and then to try to keep his cool is way too much. Did any of you in the early stages of FTD notice your LO try so hard to keep their cool? You can just see it in them trying. My DH will start to verbally strike out and then will stop and regain his composure. It's such odd behavior. It's almost like he is so agitated but doesn't know why.
I keep thinking of more stuff to say. And I am wordy to begin with.
This goes back to a previous topic about when this all started. Was it when we first noticed symptoms or was it way way back?. Some feel it was even when they were children or young adults. I can pin-point the first what I would call symptoms and weird things happening six to eight years ago. At the time, I had no idea what was causing these problems. Mood swings, agitation, anger over nothing. However, DH has had this same volatile personality and little quirks that so many of us have noticed.
Hypothyroidism is a cause of brain fog (I'm not going to call it dementia) not a symptom of something else. If he really has it, treating low thyroid disease might help deal with some of his other symptoms. OK, he is already on synthroid, so you are treating it.
What 12 other over the counter medications? That is a huge number. At this point the only OTC my husband takes is Vitamin C. I'm on two, both ordered by doctors, fish oil and magnesium.
I'm not sure if what I have is asthma or COPD, but I'm on medications that they use for both. And I've never smoked.
I'm not dealing with FTD, but it sounds like many of the systems in your husband's body are breaking down. What do his doctors say about that?
FTD, how much testing have the doctors done to come up with the diagnosis of FTD? I'm beginning to wonder if it isn't really very wrong, and you need to get a referral to a qualified specialty hospital such as the Mayo Clinic RIGHT AWAY.
Your post piqued my interest because my mother -- who was diagnosed with AD -- had Sjögren's syndrome, among a host of other problems.
So I started poking around a bit.
Sjögren's syndrome is an autoimmune disease in which the body's immune system mistakenly attacks its own moisture producing glands. The hallmark symptoms are dry eyes and dry mouth. Sjögren's may also cause dryness of other organs, including blood vessels and the central nervous system -- for example, the brain.
About 50% of the time Sjögren's syndrome occurs in the presence of another connective tissue disease. Systemic Lupus is one of the four most common diagnoses that co-exist with Sjögren's syndrome.
Both Sjögren's and lupus can cause dementia. Individuals are often affected at a relatively young age. Progression can be very rapid.
And in some patients, the dementia caused by Sjögren's and/or lupus CAN BE TREATED -- sometimes almost totally reversed -- with high doses of corticosteroids.
You mentioned that your husband's thyroid is involved, as well. I also found a report on dementia associated with autoimmune thyroiditis which also responds to corticosteroid treatment.
But if left untreated, of course, a dementia caused by an autoimmune disease progresses.
I have found dozens of papers reporting successful treatment. Nevertheless, it appears that most doctors are unaware of the relationship between autoimmune diseases and dementia. Even papers written in 2008 point out that doctors are rarely aware that autoimmune diseases can cause dementia, and the dementia can sometimes be treated fairly easily.
I noticed that the Mayo Clinic, both in Rochester MN and in Phoenix AZ, seem to be knowledgeable in this area. I can go back to my literature search and look for appropriate points of contact, if that would help.
From what I have read this is a symptom of FTD. For the last few days my husband thinks everything is funny. From the T.V. programs (that are not meant to be funny) to his burping loud. This morning he was sticking his fingers in his ears waving then & sticking his tongue out at me. He will come up to me, playfully give me a little shove, just like little kids. This is FTD related right?
As you know I have said that my husband was diagnosed with FTD/EOAD several months ago, by various extensive test given, but I get feedback from a few that they think he has been misdiagnosed. WHat has been the determining factor for you to accept the FTD diagnoses? My DH shows every sign and more of dementia.
Were xrays a part of the diagnosis? That's how G was DX..from his Cat Scan. Neuro said it showed clearly that FTD was the problem. An MRI is a better tool, but with his ICD device, he can't have that. AND, FTD IS dementia...just a variant.
he has had several mri's with and without contrast, and extensive neuropsyhological testing two 8hr days, the doctor's visit prior to the neurotest was the mental test in the office. Like I said we have seen 3 separate neurologist, 2 psychologist, general practicioner, 2 psychiatrist, none had any contact with each other and the all came back with the same diagnosis
It is possible that your husband has more than one disease that is causing dementia symptoms. We already know he has thyroid disease and that can cause dementia symptoms. And he might have others as well. But he probably has FTD too if all of those doctors diagnosed it using different tests and different viewpoints.
I'm putting this here..right site? Interesting day as I was gone for most of it with Colon. consult :-)..happy daze. While I was gone, G got tired of waiting for his Neuro to answer our calls...went to his office with no Appt., waited over an hour (no small feat at this point), explained about the mess the exelon patches were making of his body...eventually the nurse gave him a box of Namenda samples...no info for use..no Dr. advice... just gave him the sample box!!! Hello..am I missing something here? G was ready to jump right into the advanced dosage. I can't believe this happened. He backed off taking more than one today until I can talk with the Dr.next week..he doesn't work on Fridays..big surprise. G had decided to try Namenda again since the Exelon was so horrible to deal with and questionable for his FTD....but...for his Dr to just hand it over..no questions..no explanation?? I think it is true that once DX, the Neuros just move on. I'm steaming tonight.
At least we had one night of no itching fits and the toss and turning as a result. I still don't know just what to do about changing meds this way..it can't be right.
When my husband was started on Namenda, he was given a starter pack that started with taking 5 mg in the morning for 1 week. Week #2 he took 5 mg. in the morning & 5 mg. in the evening. Week #3 10mg. in the morning & 5 mg. in the evening. Week #4 10 mg. in the morning & 10 mg. in the evening. He is now on 10 mg. morning & evening. Hope this helps.
Thanks..yes, we have the starter pack also, but this is the second time around for this. First time he was a zombie and hated it, so quit, but the Exelon patches that were substituted for the Namenda just destroyed his body, so he agreed to retry the Namenda...that said...I did not expect him to go on his own to the Dr. I would think the Dr. would have discussed this change with us instead of just handing it over at the reception desk! Do I expect too much in information or caring? I'm still ticked off.
I am also surprised the doctor didn't discuss the medication with you since in the past there was a problem. Since your husband went alone, did you call with your concerns? Thankfully, my husband has not had a problem with Namenda or Razadyne ER. Aricept was not his friend.
I have been playing "phone tag" with him for nearly a week! For G to go there alone in the first place and wait for an hour!!! Amazing..not too sure what happened, but he would normally tell me if there were problems. I am so P.O.d at this. I can't think of one excuse that is acceptable. He was out of the office today, and we are out of town for next week, but I am still going to call from our vacation spot and ask what the HELL is going on! DX'd so adios?
Here is a link for a recent KQED radio program on FTD entitled "Beyond Alzheimer's" http://www.kqed.org/quest/radio/beyond-alzheimers
Joan, You may want to put on your front page. I thought the piece explained well how FTD is differenct from Alzheimer's and more importantly the piece talks about current research.
Hi FTD, I have Lupus and autoimmune thyroid problems. Lupus can attack the brain and central nervous system. Does your husband see a rheumatologist as well as other dr. I am watched very carefully and frequently put on predisone to help out with the inflammation problems I have. Fibromyalgia may also cause the brain fog that lupus does. There is a blood test of sorts for lupus called an ANA,it can give the drs. an idea of how his immune system is working. Positive doesn't always mean lupus and it can be negative as well and he still have it. Just another avenue to explore. My medications for lupus themselves sometimes cause the brain fog (so many pain meds).
My husband has his first appointment with the Neurologist since the PET Scan diagnosing FTD. He is taking Namenda & Razadyne ER, Lamictal, Keppra for myclonic jerking & Lexapro. My question is: Are there any of the above medications that you have had experience with are causing more problems or have no proof of help with FTD? If it is not helping, my thought is why take it. I would like to be able to ask the doctor these questions and have some knowledge. Thank you for any advice.
All I can tell you is that my friend's husband was diagnosed with FTD - one neurologist put him on Namenda, and when he went back to his own neurologist at the Memory Disorders Clinic, he took him off of it.
My opinion on ALL medications prescribed is to do a little research on what each one does, so when you go to the neurologist, you can ask - Why have you prescribed this? What is it supposed to do for my husband? It's your right to ask questions and get answers.
Joan, Thank you for replying to my post. He did see the Neurologist today, since the memory medications have not be proven to help FTD & sometimes make things worse, he is weaning him off the Namenda, if there are no changes, then he is going to wean him off the Razadyne ER. If he declines we will start them back again. As the Neurologist commented & I agree, if it is not helping & could be making matters worse, then he shouldn't be taking it. If no problems with the Namenda he will increase the Lexapro.
My husband also had FTD and has tried the major three meds. Took him off Namenda (the only med he was taking now) a couple of weeks ago, and he seems much less confused and tired to me. We see the Neuro tomorrow, so shall see what happens. Me thinks it is all one big guessing game!
Kathi37, Let us know what you find out at the Neuro. My husband never had any problems with Namenda or Razadyne ER, however, if they are not helping, I see no reason to put medication in his system. I just don't want him to decline if the medication was helping.
I haven't posted in a few weeks but I wanted to just say that my husband has been diagnosed with FTD and he was placed on aricept 6 weeks ago. The neurologist said that it doesn't always help FTD patients but he has had a few patients it did. I didn't think it was doing anything but today at the neuro he gave him a MMSE and he scored 25--which is 7 points higher than his last one given to him before the aricept. He was able to remember one of the three words he was given on his own and actually got the other two with hints. His last test he didn't remember any of them with or without hints. I was surprised but the neuro said that sometimes it is just a small amount of help but every little bit helps.
I have found that he has actually become more happy--euphoric in a way. The neuro did say that as long as I can handle the side effects and he doesn't become inappropriate in his behavior he can stay on the aricept. I have not had any agression problems with him. He has become a little more goofy and giggly.