Kadee, Met with G's Neuro, and he is going to stay off the Namenda as it isn't helping him ...far better without it at least for now. As said before, everyone reactions are different. I find it odd that all three of the meds have had such a huge reaction to G. He has never EVER had a negative or allergic reaction to any meds...and with his heart problem, he takes a bunch.
Kadee, the Razadyne could cause serious problems for an FTD patient. It is a cholinesterase inhibitor, similar to aricept. (And Exelon.)
Namenda, on the other hand, may help. It is an NMDA receptor antagonist. There is a big Phase IV clinical trial going on right now to determine how effective it may be for treating FTD. See
Sunshyne, Thank you, I was kind of confused as to why the Neurologist was stopping the Namenda first, instead of the Razadyne ER. From what I have read Namenda might help. When I questioned him, he really didn't give me a answer, just said "if I see changes, we would start him back on the Namenda"
All depends on who you talk to when, I've decided..maybe the full moon has an effect on this as well as everything else. Seems as precise an answer as anything else! I:-(
Kathi, if its any help my husband also went of aricept, then razydyne, and stayed on 2 x10mg doses of namenda am and pm. it did help him for a couple of yrs. then he had issues with that too so now he doesnt take anything and i am glad. divvi
Well, I know I am still confused on what medications if any that my husband should be taking. I don't want him to decline, however, if they are not helping & could be making matters worse, then he shouldn't take them. I am beginning to think that the Neurologist really doesn't know anymore than I do. I guess it is just trial & error.
In the year since my husband was diagnosed with FTD I have been handed more prescriptions than I can count with the words"give it to him, it probably won't help but try it, if it makes him worse, stop". I have found that only the Serequel made any great change and it did decrease his restlessness. I agree that it is a lot of trial and error and probably a lot experimenting. I sometimes don't think most of the doctors have a clue.
The problem with this GROUP of diseases is that it is a GROUP of diseases. And it is not unusual for our LOs to have more than one of them. With Vascular Dementia, for example, which is the second largest cause of dementia, it is very common for the patient to have Alzheimer's as well and to have that discovered if there is an autopsy.
FTD is a much less common reason for dementia. There are no drugs specifically for FTD. They discovered that the Alzheimer's drugs mostly work on Vascular Dementia patients, so now they tend to try them on all of the dementia patients they see, because they just plain don't have anything else to try.
Do the doctors have a clue? Yes and no. There really are doctors out there who are clueless. But the real question is do they have options? And the answer to that one is mostly no. They aren't clueless so much as helpless.
What we have here are are a GROUP of long term terminal diseases with a small handful of palliative care drugs that mostly do not work. They work on Alzheimer's patients, but there is no test for Alzheimer's. They work some of the time on other dementias, and sometimes they don't. But when they do work, and for the period of time they work, they really do make quality of life so much better that they hand out starter packs and prescriptions and pray that the caregiver will get lucky with this one and that the patient will be one of the ones the stuff actually works on.
Starling, I think you are right about that. I have noticed the dismay on our PCP face whenever he sees DH. We have gone to him for 45 years and he knows our whole family and my Mom. He has trouble accepting it because he is so helpless about what to do.
One Neuro, just sees him twice a year and does no do a thing since they decided on the diagnosis. Our PCP handles the prescriptions. You can tell they just have nothing to say to make you feel better.
The Neuro at WVU 2 years ago told us to start making plans for the future. She does act like she is interested in helping anyway she can but also doesn't know anything more to do. If I suggest trying another medication they are all open to about anything unless they are worried about obvious side effects like making him more confused.
I am so thankful for this Discussion Board where we can vent and get helpful hints from others in the same situation.
You know, Starling, every now and then, you come up with something profound.
"Do the doctors have a clue? Yes and no. There really are doctors out there who are clueless. But the real question is do they have options? And the answer to that one is mostly no. They aren't clueless so much as helpless."
Very sad, but very true. And of course, we don't want to hear that they're helpless, we want answers. We want cures.
I still driving my self nuts as to whether I should be weaning my husband from the Namenda. From what I have read the Razadyne ER is no help, I can't figure out why it wasn't eliminated first. I guess I can't get it into my brain that the Namenda isn't helping. What if any memory medications are others with FTD taking? This disease is so hard.
As far as I know the only one that sometimes works with FTD patients is Namenda. Sunshyne has found that there are actually drug trials to see if it really is true that this one drug is not just tolerated by FTD patients but also is doing something useful.
I have read all Sunshyne's research & on another board a lady who suffers from FTD also thought he should not be taking the Razadyne. She said, she went off the Namenda for a time being & started losing abilities that she still had. Went back on the Namenda & her abilities returned. So now I really don't know what to do. I haven't seen any changes since we have cut down to 5mg. other than the shower episode last night. I did call the Neurologist today...had to leave a message with his assistant with my concern. Also, ask for his e-mail address for any questions I might have in the future. I promised I would not abuse it, I have my doubts if I will receive it.
Bottom line, do a bunch of research, take a deep breath, make a decision and go for it. Try something, and if it doesn't seem to work, try something else. You can only do the best you can do.
Sunshyne, Thanks for the advice. Normally, since I am a control freak, I would just take control, however, this medicine deal scares me to death. I keep thinking what if this or that happens.
Yeah, I know. I went through this a LOT when my first husband was diagnosed with terminal cancer.
You know what? That was 21 years ago, and to this day, I don't know if my decisions were the very best I could do for him, or the very worst, or somewhere in between.
Well, we had our PCP appt. and I'm not too sure how great it was. He did have a phone consult with the Neuro about using low dose Namenda, and that's a done deal. I think more to placate me than anything. When i suggested upping or changing Prozac, I got a very negative response, so we'll see down the line. On another note, I asked to speak privately with him and just laid out what I was feeling. He is extremely sympathetic and was even asking about the future as it is obvious I couldn't deal physically with G should problems arise. Everything is on hold for now, but he did write a good letter for me to have in case there's a problem in airports etc. on our trip....of course...it isn't in Spanish!Must keep that sense of humor working.
Kathi, for your peace of mind, if you can print the following- i am tri-ligual. :)
Esta carta firmado por nuestro doctor, sirve para informarle que mi marido sufre de un enfermedad de la mente-Alzheimers. Nosotros le agradecemos cualquier ayuda y servicio que nos puede extender durante nuestra visita por sus aeropuertos y viales publicos. muchas gracias - (you and your husbands name) date-
" Please be advised that this letter signed by our doctor serves to inform you that my husband suffers a mental disease, Alzheimers. We are grateful for any help or services you could extend to us while we travel your airports and public transportation systems. Thank you, Mr & Mrs. ****-date
if you need anything else injected let me know. maybe this will help since you are going to spain? divvi
Divvi, you are such a wonder! Thank you for your concern and aid. I should be able to do the translation as I lived in the P.I. and Venezuela for a lot of years speaking fluent spanish. I was really being facetious..but doubt I COULD translate after not using the language for so long. I WIll copy and take it with me just in case...gracias, mi amiga.
Here is a pretty good article about diagnosing FTD. It gets a little deep but I haven't found many good articles that discuss what is really happening.
Frontotemporal Dementia fast-tracked for disability benefits by Social Security Administration Monday, October 27, 2008
Michael J. Astrue, Commissioner of Social Security, today announced the national rollout of the agency's Compassionate Allowances initiative, a way to expedite the processing of disability claims for applicants whose medical conditions are so severe that their conditions obviously meet Social Security's standards. Frontotemporal Dementia (FTD) is one of 50 conditions on the list for expedited approval.
"This is wonderful news for our patients," said Susan Dickinson, Executive Director of the Association for Frontotemporal Dementias (AFTD). "Many of our families spend years trying to make the case that their loved one qualifies for disability benefits. But with a rare disease like FTD, which most people have not even heard of, this can be an uphill battle." Under the new Compassionate Allowances initiative the wait period to qualify for benefits may be as short as 6-8 days.
Frontotemporal Dementia is a rare neurodegenerative disease that differs from Alzheimer dementia in two important ways: it occurs in younger people (the average age of diagnosis for FTD is 60, but patients have been diagnosed as early as in their 20's) and it affects personality, behavior, emotion and language, rather than memory. The unusual constellation of symptoms, the young age of onset and the fact that FTD is a rare disorder-occurring in an estimated 250,000 individuals in the U.S.-combines to put the patient at a significant disadvantage when attempting to qualify for benefits.
"Most of our patients become symptomatic at the height of their professional careers, when they are at their maximum earning potential and still raising a family," notes Dickinson. "Their symptoms render them unable to earn a salary or play a significant role in the care of their children. If they were the main breadwinner in the family they lose health insurance when they lose their job, and they are too young to qualify for Medicare. Until now," she adds, "they have had little avenue for recourse."
"We applaud the Social Security Administration for taking this compassionate and much-needed step," says Helen-Ann Comstock, founder and chair of AFTD. "And we are grateful to representatives from the National Institutes of Health and the National Organization for Rare Disorders for their efforts to bring about this change in Social Security disability procedures. This program will make a huge difference in the lives of patients and families across the country."
For more information and a complete list of the disorders included in the Compassionate Allowance program, go to www.socialsecurity.gov/compassionateallowances.
For more information on FTD, go to www.ftd-picks.org
Thank you for alerting us to the news - I have put the article on the home page Daily News Section of my website, along with the link to the list of diseases. The link you provided is incomplete. The correct link is http://www.ssa.gov/compassionateallowances/conditions.htm
I am pleased for those with FTD, but extremely disappointed that they did not include Alzheimer's Disease - we lobbied hard in Washington this year for it. We'll do it again next year.
Since the medical community has difficulty determining definitively what type of dementia a person's early dementia is, you may prefer to get an FTD diagnosis rather than EOAD at first.
Well want to give an update we had a visit to the neurologist and the doctor gave a memory test one performed on our initital visit in May and this time he failed worst than the first time...the doctor is adding namenda along with the exelon and seroquel. what does this mean? the progression is not slowing down with the meds? Has anyone repeated the long 8hr neuropsych test more than once or is this needed just one time to see the results
They usually start patients with one of the excelon group of drugs. In my husband's case, Razadyne. Then they add Nemenda. Usually it is the combo that works best. They have to be careful about giving both at one time because a lot of people have bad stomach problems with one or the other, and sometimes with the combo. So they start slow.
Someone else needs to explain the Seroquel. My husband doesn't take that one.
FTD, Starling is right, it is standard treatment these days to start an ALZHEIMER'S patient on a cholinesterase inhibitor such as exelon or razadyne, and then to add namenda a few weeks later.
However, if your husband's doctors are correct in the FTD diagnosis, then the exelon not only isn't likely to help, it is likely to make his symptoms worse. Namenda, on the other hand, has been shown to help some FTD patients, and is now in clinical trials to confirm that Namenda is broadly helpful in treating FTD.
I can't help but think that the neuro you have isn't qualified, if he doesn't know enough not to put your husband on a cholinesterase inhibitor like exelon. I gather you had no luck in convincing your husband to go to Mayo?
My husband goes through the long neuropsych tests every year, as part of a huge study that the National Institutes of Health is funding. Unless a patient is in a study like that, the test is usually only used for the initial diagnosis. Maybe the doctors aren't so sure what your husband has any more?
He definitely shows every symptom of a FTD/ Alzheimer patient.....what else could it be. More and more everyday he is also making up stories that I hate acting like I enjoy him telling them to me. I keep saying to myself why is he lying about things .....but maybe he really believes them as if they are really happening.
The neuropsychologist was an expert in his testing and has said most people try to fool him when he is giving the test that is why the neurologist chose him because he can't be fooled....but when tested he tested so bad (severly damaged across every domain) he normally gets patients early on in there diagnosis, but he feels my husband is so bad that is why everything seemed to have come crashing down in Feb.....he couldn't mask his symptoms any longer...I don't know what to say about all this... Yes my husband doesn't want to go to the MAYO clinic he says he has Milddddd dementia and he is not that bad.
My husband had a 2nd PET & was diagnosed with FTD in July. He has been treating for memory problems for almost 6 years now. He was taking Namenda & Razadyne ER, his Neurologist has taken him off the Razadyne, no need to take medication that does not help & could make matters worse. He also wanted to stop the Namenda, however, I am not sure. I would hate to stop the Namenda & have him decline more.
FTD and Alzheimer's are two different diseases. Both of them cause dementia, but they affect the brain differently, and they require different treatments.
I have seen plenty of references to "mixed dementias" involving Alzheimer's and vascular dementia, but I don't recall seeing anything about mixed FTD/Alzheimer's.
I had hoped that the folks at Mayo could determine whether the autoimmune diseases your husband is developing are making the dementia symptoms worse. If they are, then perhaps high doses of corticosteroids could lessen the dementia symptoms.
Did your husband's current doctors talk to you about the possible role the Sjögren's, lupus, etc, might be playing in causing your husband's problems?
This is so interesting as my husband has PPA (Primary Progressive Aphasia) which is a frontal lobe disease and progresses very much like Alzheimer's. However, he did have ocular myesthenia gravis now in remission for many years and is kept on Imuran always. He also had nephrotic syndrome after surgery in Mexico (never determined if related) and after one occurence never returned. We tried to investigate if autoimmunity was somehow related, but it was never fully determined. Somehow knowledge in this area is sparse or else there is too much disinterest. I am taking him to a new neurologist in NYC (after all the others and many years of progressive disease) who has interest in seeing patients with dementia and supposedly very compassionate. I feel at times we didn't do enough - ironic, since my husband, a retired pediatrician, had so many colleagues who cared. (it sounds too much like a soap opera, but he had to retire because of blindness from md.) This is sort of painful to reiterate. However, this is a place say it all! You are all so kind. You've been there.
MarciaS, autoimmune disorders aren't very well understood yet, and are extremely difficult to diagnose properly. People at Mayo Clinic have published a number of papers on treatable dementias caused by autoimmune disorders. Dr. Richard Caselli authored a number of them. He is the Chair of the Department of Neurology, Mayo Clinic in Scottsdale AZ, and is associated with the Arizona Alzheimer's Disease Consortium.
You can see a picture and brief biography at:
http://www.azalz.org/scientist_bio.aspx?id=73
Address:
13400 E Shea Blvd Mayo Clinic Dept of Neurology Scottsdale, AZ 85259 Phone: (480) 301-7162 fax -8451
I emailed him a while back, and he responded right away, seems like a very nice man. Mayo has three locations, in Rochester MN, Jacksonville FL, and Scottsdale AZ. He said that people with autoimmune disorders and dementia who wanted a thorough workup to see what's going on could go to any of the three locations -- they all have a Behavioral Neurology division that addresses dementia and diseases like autoimmune encephalopathies that can mimic dementia.
When calling the appointment office, request "Behavioral Neurology" or a specific doctor. Dr Graff-Radford at MC Jacksonville is their Behavioral Neurology specialist. In AZ, the doctors to ask for would be Dr Caselli or Dr Bryan Woodruff. There are a bunch in Rochester.
Thanks, Sunshyne. Although I am so very sorry so many are dealing with FTD and other dementias, it is very helpful to understand what everyone is going through and I am not alone. DH is 58, on Lexapro, Seroquel, Aricept, Namenda, Lunestra (for sleeping) and Klonopin when his aggression acts up. Currently in psych hospital to find the right combination to curtail his aggression so he can either come home or be placed in a facility. I prefer him to come back home, but med professionals are concerned about his/my safety. Anyone else here caring for an aggressive FTD patient at home? If so, what tips can you share?
I have noticed that when my husband is napping, he makes terrible faces. For example he shows his teeth like a snarl, never makes any noise. Just curious if others experience this.
Kadee, i have noticed grimacing faces at times too while asleep or resting- and have thought it may have something to do with the myclonic jerks they are having ie-brain spasms. i think it may be causing some headaches. poor buggers, like Nikki says..heartwrenching to think they are painful at times. this is why i reevaluate at least once a month the dose of neurontin (keppra) in your case that may need upping to make sure they are kept at bay. speak to his dr next time..divvi
Kadee, my husband also makes faces when napping. Almost like a fish out of water. He will also waive his hands around slowly. Strange. He is on Aricept. I will ask the neuro about it, Sunshyne. Perhaps he needs to go on Namenda instead or in addition to.
FYI, in case you weren't aware, the University of California, San Francisco, has expanded their website regarding FTD. The link is http://memory.ucsf.edu/ftd
So that those of us with husbands or wives dx'd with FTD, or just new to the Alz. Spouse, can learn more, I am bringing this thread back to the top. My DH has an appt with the neuro on Jan 26. There is a FTD primer from the University of California at the above link that is very informative. Actually, the whole site is quite extensive. Evidently, neurologists are rethinking treatments for FTD and taking it from under the AD umbrella to a dementia all it's own as it is uniquely different. I wonder how many of us are dealing with FTD? Or may think they are and may want to question their doctors about it?
I suspect that there are even more here dealing with FTD but don't know it. The most recent paper I read on the subject said that FTD is now considered to be significantly more common than AD among younger patients ... but from what I see, they forgot to tell that to the doctors doing the diagnoses. So many of them don't seem to have ever even heard of it...
After my husband was diagnosed in July 2008, after many test over many years, I ask his Neurologist if he had treated anyone with FTD....he is younger, however, he told me he had one lady with Picks that he has treated for about 7 years. He did tell me FTD was often mis-diagnosed. From some of the post I read on this forum, I always wonder instead of Alzheimer's, do these younger spouse have FTD. Their symptoms sometimes sound more like FTD.
Sunshyne, my thoughts exactly! I think also that most GP's, even neurologists, need more information regarding FTD. Next time we have appointments with our LO's doctors, we all should pass this primer along. IT WOULDN'T HURT...
My husband does not talk about his illness until today. He brought up today out of the blue that he realizes his brain is shrinking and became very upset asking me "why, why?". All I could say to him was no one knows why it happens to anyone and that I loved him and would take care of him. This seemed to calm him down but just the fact that he said it upset me. I guess we never know what's going on in their minds. :(
Yes, deb, my DH early on in the dx would not talk about it either. Since FTD patients usually retain short term memory longer they might think there is nothing wrong and it is hard to accept. Needless to say the family surely knows there is something wrong. Finally though they get it and can't help being upset. Reality hits harder later in some lucid moments, I find. Now when my DH has delusions or hallucinations, I am more aware and he cannot hide them. We talk about what is happening sometimes and he gets very sad and cries. Emotionally hard on him and me. I am trying to keep the door open as long as I can. I tell him that he should let me know what he is thinking or seeing when he seems to get upset for no reason. We might need to adjust his meds so he won't be in fear.
I only wish my husband and I had had a chance to discuss his illness. His speech was the first thing to go. He can't tell me if he hurts or is hungry or thirsty or how he feels about anything. I assure him every day that I love him and will take care of him but I am not sure if he understands it.