FTD typically starts in younger patients, so it isn't really "early onset" when it does. The average life expectancy is 8 years. The overall course of FTD is usually a bit longer than AD.
EOAD depends on what type. If it is early-onset of "normal" ("late-onset") AD, then it tends to follow the same progression as "normal" AD. There is a familial EOAD, however, which has a strong genetic link. It is quite rare. It tends to progress much more quickly than late-onset.
OK I was told that my LO has FTD/ EOAD his 58 years old and is severed impaired across every domain . Tested in the 13 percentile which the doctor put in writing equivalent to a 8th grade level. The doctor suspects that he is in stage 5-6 and was just diagnosed 2months ago. When I asked how long can he live with this he said he would be surprised if he made it 6 years, because of the damage that is so severe not only in the front lobes of the brain but all over.
I'm wondering if DH could have FTD instead of AD. I read on another thread that aggression/anger tends to occur in later stages of AD but in earlier stages of FTD. DH and I used to have some awful "battles" (not physical, fortunately), a few years ago, before diagnosis. Now he is so gentle and complacent, as this progresses. He was diagnosed almost 2 years ago at only 52 years old. It seems to be progressing pretty rapidly. We can hardly have a coherent conversation anymore and he is starting to have toileting problems.
I'm wondering how FTD is diagnosed. Does it appear on an MRI or PET scan?
My hubby had the MRI with and without the dye. When we went to the neurologist do get the reading he showed both of us the MRI and it clearly showed the front of the brain was totally destroyed ( the brain should fill the entire cavity and it didn't)
Many patients have a mixture of syndromes that cause dementia. For example, people with vascular dementia often develop Alzheimer's as well.
It sounds as if your neuro believes your LO has a mixture of FTD (in which the initial damage is primarily to the frontotemporal lobe region) and EOAD (which can affect more diverse regions of the brain, even in the earlier stages.)
While FTD typically does not progress as quickly as AD (by itself), having both of them probably means your neuro believes that your LO will progress more quickly than the average patient who has FTD alone. It also sounds as if your LO is fairly well along in the progression of the diseases.
Stage 5-6 is moderate (Stage 5) to moderately severe (Stage 6). That is, your LO has many of the Stage 5 symptoms, and is beginning to show some of the Stage 6 symptoms. Stage 7 is severe.
If you haven't seen the web sites that describe the seven stages, two good ones are:
Please keep in mind that not every patient will develop all the symptoms; and they won't necessarily develop them in the order given here (especially if FTD is involved.) These are just an overall guide on what might happen, and roughly when.
This information is helpful. I have reviewed the stages on the alz website. It just seems that because just diagnosed so severe what does that mean for me? I am in my early 40's with a 16year old at home, which I haven't talked about the situation as of yet. The doctor has instructed me to do so and he also said I need to start bring someone around so my husband can get used to a familiar face. It just seems like everything is happening so fast. Has anyone had the neuropsychological test out there? and what did it reveal ? I am just trying to find some comparison to another person who is dealing with this so fast.
ftd, I can't help you out with info on a LO who is slipping so quickly. My husband has had every neuropsych test in the book -- he's in a study at the AD Research Center, and was in a clinical trial for two years -- but he is progressing very slowly. He was diagnosed with moderate AD three years ago, and is now Stage 5 with occasional traces of Stage 6.
The tests give information about how the damage to different regions of the brain are affecting the ability of those regions to function. They give the doctors additional insight into the type(s) of syndrome(s) that are causing the problems. I don't think they'll give much insight into how quickly things will go. (Actually, in the research program, they compare what the tests show with what the caregivers observe about the ADLO's ability to function in the real world, since you can't always extrapolate from one to the other.) They are simple tests, nothing that will be painful or upsetting for your LO. They include memory tests, tests to evaluate how well your LO controls muscles (can he close his eyes and touch the tip of his nose, that sort of thing), language skills, etc.
You probably do need to explain what is going on to your 16-year-old, to the best of your ability. Otherwise, the wild mood swings will be extremely distressing. And your child will need to be able to talk with you about his feelings and fears.
Your doctor clearly believes that you are going to need in-home help reasonably soon, and it can take time to find good people, line up the financial support for which you can qualify, etc.; so he is encouraging you to get started on that. Also, you probably need to talk with a certified eldercare attorney about estate planning, and the documents you'll need (durable power of attorney, advance healthcare directive, etc.) (I realize you and your husband are painfully young to be going through this, but it's the eldercare attorneys who are knowledgeable about the things you need to know.)
All of this takes time, and is stressful, and so you need to get started so you can take it one step at a time, and minimize to the extent possible how hard it will be for you, emotionally, to deal with all these issues.
My 57 year old hubby had the neuropsyche testing in May at my urging and to basically shut me up. His results showed: "His verbal skills are good, including vocabulary, verbal reasoning, math, general fund of knowledge, letter fluency, and understanding of social situations. His memory was also within normal limits, including auditory and visual memory, immediate and delayed. His score on a depression screen did not indicate that he is experiencing a clinical depression.
The test results did indicate some significant deficits. These include his visual-spatial abilities, category naming, frontal lobe/executive functioning abilities, attention/concentration, mental processing speed, and ability to identify and label odors.
These deficits are all related to the functioning of the frontal lobe of the brain, and mostly the right side of the frontal lobe. So, what is causing these deficits? There are at least three possibilities. He may have the early stages of a fronto-temporal dementia. He may have had a stroke in the frontal lobe of the brain. Or, there may be a tumor in the frontal lobe. These are just some possibilities." That was a quote from the psychologist who tested him. He has since had an MRI which showed normal for his age. Today he had PET/CT scans ordered by a neurologist. The diagnosis on the scan order was "Frontal Temporal Dementia". I saw it and also pointed it out to my husband. On the way home from the scan today he told me that I needed to prepare to get some therapy to get this business out of my head. That when the tests come back normal tomorrow this will be the end of any discussion about his memory or confusion. I have tried very very hard NOT to talk about it to him as I know it makes him mad and upsets him. I am the enemy in this. According to him I am setting him up for a fall. Yep, I told him that is exactly what I have spent the past 25 years doing....setting him up. Plus all our friends have seen his confusion and I told him this as well. He left the house to play golf and told me he had no idea when he would be home. I know he is scared and that I upset him by actually speaking my mind this time. I can't hold it in FOREVER. I am sure that whatever the doctor says in the morning will be my fault as well. I am ready to scream and can't quit crying. FTD, I am sorry your husband is so advanced. I don't know what the stages of FTD are or if that is what DH actually has....He still functions on his own and does relatively well - on good days - On bad days he is a doddering old man. Sheila
Sheila, I'm so sorry you are dealing with this. And, it sounds so familiar. From my DH: you need to "see someone" to deal with the stuff you are imagining, I bet you have AD, if you would only (insert phrase of the moment, ie. let me control my meds, stop watching me, etc.) I wouldn't have this problem.
When they can't see the problem it seems to be a common defense to blame the spouse. Married 36 years, and yes, it is all my fault.
I asked DH if he KNEW he got confused and he said that he does sometimes but it is normal aging and all men his age are like that. I just wish he could SEE himself when he is like that. I know that the MRI he had ruled out stroke but he has just in the past couple of months started holding his left arm in to his side when he walks. Even he has noticed that and wonders about it, but doesn't think it has any correlation to anything. One of his old friends (who we haven't seen for 6-8 months) noticed it the other day and asked me if he had had a stroke. His symptoms to me don't add up to FTD but the psychologist told me that the neuro testing results were pretty much opposite of Alzheimers results. AAAAKKKKKKGGGGG! Sheila
Geez I forgot in my introduction to mention that my mom is in a nursing home w/alz. She was diagnosedin the early 90's. She has been in a nh over 4 years. I couldn't take her into my home because at the time my hubby was so messed up w/what we thought was "severe depression". He was later diagnosed with ftd. Anyway in comparing the 2 diseases. My mom is going to be 88 in Sept. She is past the belligerent stage and so pleasant. She is still continent, but her walking is limited because of a few falls. She doesn't always remember that I am her daughter, but she definitely recognizes me and gives me hugs. She is able to converse. On the other hand, my husband with ftd is in much worse shape than my mom. I wouldn't be surprised if she outlives him. He is incontinent, eats w/his hands most of the time and either sleeps or paces. HIs attempt at conversation makes little sense. There are similarities between the 2 diseases but at this point I would have to say that ftd is more difficult and more progressive. Maybe it's because I live w/it 24/7.
Wow this is heartbreaking for all of us who are going thru this nightmare. My hubby received a call today from his coworker saying they just announced that he will not be returning to work. He has been in a daze ever since and is blaming his staff, who initiated all of this. DO I feel out and get in touch with his employer in reference to disability? iam not sure how all this works?
FTD, Wow. How awful. Has your hubby been contacted by his supervisor or is this info coming from just a co-worker? Did he get fired or has he been on disability? I'd certainly find out specifics and inquire as to some type of compensation package.
Hopefully, Jane will be along shortly to help you with thoughts on applying for Social Security Disability, etc. There are Government programs to help, I just don't know enough about them to tell you what they are and how to apply.
Start a new thread, addressed to Jane, to make sure she sees it.
Yes you go to his employer and find out about disability. Does your state do short term disability? Does the employer have long term disability? The doorway to both of those is the HR department where he works. Call them tomorrow.
And yes, you need to talk to your 16 year old now. Don't be surprised if he hasn't already figured most of it out. But he needs you to honor his need to be given straight talk. He is a near adult and you are going to need his help to survive all of this. And he is going to need the truth to survive too.
I know it is hard to have these talks. It is hard when your "kid" is in her 40s. But my therapist basically gave me homework after the first visit to talk about all of the hard decisions I was already making with her. And my anxiety levels dropped like a stone. You aren't making those decisions at this point, but believe me, if you tell your son the truth both of you will be able to support each other.
Thanks so much for everything. I will contact his employer today. As far as the co-worker's message it was like a ton of bricks hit my LO. My hubby was just diagnosed a couple of months ago already in stage 5-6 and he has been on FMLA , due to his staff and coworkers seeing a significant decline in him. So now that the FMLA ( good for 12 weeks) has run out I need to do something fast. I wonder what happens to all the sick time and vacation time accumulated over several years, he has at least 10 months of sick time and 2 months of vacation ( never called out sick). I wonder will they give this to him in a check or is this money lost this would equal about 80,000 dollars, boy can we use that right now. I could pay down our mortgage, etc.
FTD, it depends on what the company policy is, as to whether you'll get the accrued sick leave. If your state laws are anything like ours, the accrued vacation time MUST be paid, and on the day the person is laid off. However, there may have been a "cap" beyond which unused vacation does not accrue.
If you aren't happy with the amount of money that your husband receives, demand a copy of the company policy.
We went the FMLA (family medical leave) and ADA (Americans with Disabilities--accommodations) route when we first started this a year ago. It bought us some time to figure out what to do and what was going on. Do you have a local rehabilitation hospital that works with brain injuries? Many 'accommodations' in the early stages are similar for FTD & AD as with 'injured brains.' Our local is www.madonna.org. They can maybe help you find something in your area. Also, our rehab hospital had wonderful counseling.
My DH was diagnosed tentatively with AD. Then they did a follow-up neuropsych (all day) testing. The neuropsychologist said that many things were 'average', but given my DH's level of education and high-powered, high-level job she presumed that my DH should have tested way 'above average.' This testing 'clearly indicated' Fronto-Temporal Dementia (FTD). The neurologist then ordered a PET scan. That showed glucose use consistent with Alzheimer's, Demential with Lewy Bodies (which it definitely is not) or Corticobasal Degeneration (so rare they don't even know how rare). The Dr. picked AD. We personally think Corticobasal Degeneration as my DH's physical and mental decline are following that more closely ..and not following the standard AD progression.
We try to put a positive spin on things. My DH found it hard to 'retire.' I told him that they WERE going to let him go. I told my DH that HE could not control the disease, but HE could control when he retired...so he did that on his own before being let go and after if became apparent that there was NO accommodation that would allow him to do his high-level job.
He is given 2-8 years due to early onset. We are looking at that as better than getting hit by a bus and dying instantly...although I think MY opinion on this will change as I switch more from wife to caregiver.
My DH stays home now while I'm the breadwinner. I remember being 'the housewife' so I thank him daily for all he does and give him little treats like ME doing the dishes in appreciation. This helps so far.
My main hope is that I can maintain MY sanity. I read as a release. It takes me away.
Hope this helps some. I remember the whirling, slippery slope of diagnosis/retirement of 6-12 months ago. It truly is a nightmare. You are in my prayers.
My dh first symptoms were when he lost his 28 year career. That was in Oct. 2007. By Dec. 2008 I knew there was something wrong. He has always denied he is ill. When it became obvious he could not keep a job he went to the doctor in January 09 and had an MRI May 09. Moderate atrophy so I knew it may not be Az and it usually shows normal MRI. Neuro said FTD in June and wanted follow Neuropsych and EEG both of which my husband refused to get. Neuro told dh something is wrong but dh blames me...sounds familiar.
Learned that FTD is on the social security administration's list of compassionate diseases. Neuro had his MRI reviewed by neuroradiologists who agreed he has FTD so neuro diagnosed him without needing neuropsych eval or EEG to confirm. I then filed for SS without him knowing and went to the local SS office who did not make me bring him in to sign...they were just great and SO helpful...gave me two signature lines for him to sign. I told him we could tap into his social security because of the economy as he thinks he can't find work because of the economy...NOT because he is ill...he thinks he is fine.
In July I called his company and told them he had FTD. I also talked to some lawyers...if you are going to pursue under American's with Disability Act his bosses must have known of his illness and then not have accommodated him. If they never knew about his illness, ADA is not a good approach. With my dh, we didn't have a diagnosis until 18 months after they fired him. They also wanted him to file for his own disability and they have a one year date by which to do it. All I could do is write them a letter and beg, which I mailed in September aI told them that first part of my dh illness is an inability to understand he is sick so he cannot be the one to file but that that should not deny him his benefits. I also told them that dementia doesn't work within their constraints, and that if he had had cancer he would be on their disability right now.
We also have a six year old daughter. I took her to a counselor and after only three sessions she told us everything...she basically already knew Daddy couldn't remember things and sometimes acts crazy as she said...so she knows he is sick but does not yet know he is basically dying.
Marise, I am so glad to hear from you. I think about you often. This life is really up and down right now. So, were you able to get his SS disability started? Did he sign the papers?
Just want to update since last year prognosis. On Oct 1 2009 they are giving my FTD one year to live. I cannot believe that they have went from 6 years to 1 year to live. Has anyone seen progression like this
I don't put much stock in what anybody says. Approx 6 months ago DH's PCP said in regard to DH losing weight -- that they rarely last a year after they start losing weight. I think my DH has a lot longer to live than that.
Initially, my husband dropped about 35-40 pounds. That was about 4-5 years ago. Since he's been on Seroquel's higher dosage, he has gained back every pound. The doctor said that Seroquel will add pounds. Darn! I'm going to begin wearing latex gloves when I put them in his pill tray.
Jim was dx'd with FTD in Feb/Mar of 09. He has the Motor Neuron Variant. We were told that the average life span from onset was 8-12 yrs. He has had symptoms since 1998. Given his rapid progression the latest GUESS on prognosis is a year to 19 mos. I always tell Jim, as he is obsessed with knowing WHEN, that there is no Expiration Date stamped on the bottom of his foot. So lets LIVE with FTD, not Die From it.