Alzheimer’s Association Online Community |
|
||||
MESSAGE BOARDS FORUM INDEX | CHAT ROOM | BECOME A MEMBER | GUIDELINES |
||
Message Boards Forum Index
Alzheimer's or Other Dementias Under Age 65
Welcome to our online community for early-onset Alzheimer’s.|
Go
![]() |
Start a new discussion or poll
![]() |
Find
![]() |
Notify
![]() |
Tools
![]() |
Reply to this discussion
![]() |
|
![]() |
Hi to All,
I'm not sure what DJ was referring to that I'd fill you in. You all know as much as I do. DJ is not in a good, safe place right now but is afraid to make changes. I'm not sure how to help. Any suggestions? Peace and Hope, Lisa check out my blog @ http://lcc-thoughtsfromtherollercoaster.blogspot.com/ |
|||
|
My name is Michael and I just turned 59 in April. I don't believe that I have AD, but have not ruled it out. I have my yearly physical in November and discuss it with my Doctor at that time...
I have always been a very forgetful person, but the last couple of years, especially this one, I have noticed a drastic increase of that, as well as times of confusion, at least briefly, while in the process of "everyday" tasks. I love music, especially almost any kind of Gospel, and very active in my Church. I am a "house-husband" and work on our 10 acres of land. My Wife is a teller at a local bank. Just wanting to touch base with others, and maybe check out our local support group. Thanks for "listening"---Michael |
||||
|
![]() |
Dear Michael,
Hello and Welcome to the AD Message Boards. Being forgetful and having some confusion can be caused by many things not only AD/Dementia. I would suggest you see a neurologist who specializes in AD/Dementias if you wish to be tested. Does anyone in your family have AD? Have you read the new 10 warning signs? Do you fit the criteria? Please, tell us more. Again, welcome to OUR family. Peace and Hope, Lisa check out my blog @ http://lcc-thoughtsfromtherollercoaster.blogspot.com/ |
|||
|
![]() |
Hi Michael, thanks for joining the community - but sorry for why.
Michael, if you think about it, one shouldn't try to self-diagnose dementia. There are many causes that are treatable, and with some of those it's critical to get treated early. You see, with even treatable dementia, once you've lost something, the odds aren't great that you'll get it back. It's complicated. And as Lisa said, please, tell us more about what's going on. Alan |
|||
|
Hello Michael, welcome to these message boards. I turned 59 on April 3. I have neuro-cognitive lupus, which means I have memory loss and cognitive troubles due to systemic lupus. The memory problems have been present since 1987 but I only recently have been diagnosed. I have been prescribed Exelon patch and Namenda, which seem to be helping a bit.
As Lisa and Alan have said, there are many causes of memory loss and cognitive decline. The important thing is to find out if you have one of the treatable causes of dementia. Even if you are developing early Alzheimer's disease, it is important to get on medication as soon as possible to maintain your current level of functioning. In any case, at age 59, you need to make legal and financial plans for your future. Look at the section on the 10 warning signs of Alzheimer's. Make a list of what concerns you and ask your wife for her input. She may see some things that you are not too aware of. Take this list to your doctor and ask for a memory evaluation. Come back and post again. You do not need to be diagnosed to join us. Iris L. I am my own caregiver. |
||||
|
![]() |
Hello and Welcome to All the Newbies.
Please come here and introduce yourselves and tell us your stories. Perhaps we can help?! This is a great place to share. Peace and Hope, Lisa check out my blog @ http://lcc-thoughtsfromtherollercoaster.blogspot.com/ |
|||
|
I am 56. I have been seeing signs for the last 3 years- very odd things- Finally it is dawning on me- that I likely have Alzheimers, which my mother has- but she is 82.
I am SCARED WITLESS. I am single. I have no funds to quit work. I am just terrified beyond words of the horrible images of nursing homes- loss of control. And the sort of blanks or black holes- scare me- I did put my AARP card in the oven when I got it- which might be funny - or not. I dont remember being this scared. I don't have a hubby or any other kind of caregiver. what will happen to me? if anybody else has experienced these thoughts- and found solutions, please email me at: dds35day@netscape.net. I have a dr. appointment- but honestly, I would be shocked if I'm not correct. Thx for being here. dds bethesda, MD dds35day@netscape.net |
||||
|
![]() |
Dear dds,
Hello and Welcome to the AD Message Boards. I'm sorry for what brings you here but I am glad you've found us. I, like you, am alone. I do not have a caregiver. I was diagnosed @ 53 with EOAD. I am now 55 and still live alone and take care of myself. In fact, I, also, take care of my Mom who has AD. I don't recommend you being you Mom's caregiver as it is very stressful! You may or may not be correct about your diagnosis. Many things that are correctable can cause memory loss. I hope that your doctor is able to help you. Please, come back and tell us more of your story. Again, welcome. Peace and Hope, Lisa check out my blog @ http://lcc-thoughtsfromtherollercoaster.blogspot.com/ |
|||
|
DJSarg ROCK ON! DJ^Sarg Please Contact The Alz Org and ask about the Safe Return Program. It can save your or your loved one's life!! I know 1st Hand.. |
||||
|
![]() |
Whoa, all that good news, from just one person? That's fantastic!
Alan |
|||
|
it took all of you guys to make me see what was going on and made me understand it was not right how i was being treated. i dont remeber being this frightened about making changes in my life or just to move. i retired from the US Air Force and was sure used to moving around. thats sure changed. again thank everyone here and on the alz 24 hour line. your all the best!!!
ROCK ON! DJ^Sarg Please Contact The Alz Org and ask about the Safe Return Program. It can save your or your loved one's life!! I know 1st Hand.. |
||||
|
![]() |
Dear DJ Sarg,
Wow, what great news! I'm so glad you've moved and gotten some good help. Please, come back and let us know how you are doing! Moving is very scary! Peace and Hope, Lisa check out my blog @ http://lcc-thoughtsfromtherollercoaster.blogspot.com/ |
|||
|
Michael,
We're you taking any Blood Pressure Meds? If so when did you start taking them and what is the name?
Researching for my Beloved. |
||||
|
Lisa,
You are so young and taking care of your Mom too! Yikes. When did you start to notice systems? Were you on "any" kind of Blood Pressure Meds...how about your Mom?
Researching for my Beloved. |
||||
|
Hi:
I just wrote a message in the wrong forum, I think. I was diagnosed with EOAD about 1 1/2 years ago. I'm 48 now. I've been taking Namenda, Aricept, Abilify and Lamictal (for epilepsy for 2 years now) and am wondering how others in my situation are coping, especially those with Kids. I'm a little concerned about how to explain my condition to my 10 year old. Any thoughts? |
||||
|
![]() |
Hi Fdean, thanks for joining the community! I'll look for your other posts. The better response will be in one of the "I Have Alzheimer's" sections.
48, that's tough. I'm 54, and it's difficult to say when I was diagnosed. My doctors will say I couldn't have Alzheimer's, then next visit they'll call what I have Alzheimer's. My primary care doctor says it isn't Alzheimer's, but that it's worse than that. Gee, thanks . . . You have kids at home? Oh my . . . that is difficult. My thought is, tell the child the truth, but not the whole truth. Make sure he/she knows there will always be someone to love him/her. You know, I'm sure you do, how to explain it. You just dread the pain, right? Alan |
|||
|
Fdean,
Do you have any history of head injury? Your late occurring epilepsy sounds odd. My seizures have come and gone and are connected to head injuries although they have been pretty much regular since 2001. If you have a head injury history, this could be complicating matters. Regarding your ten year old. If he/she needs to understand what is happening in your head, I have quite a few analogies that people have been able to understand. You might enlist your child's help as a way of letting them not feel so powerless. They can give you cues when you seem to be lost or spaced out. There are lots of ways you can incorporate them into your disease life that can bring you closer. Let us know a bit about your symptoms and limitations and someone will have ideas about how to handle specific struggles. Mark in Idaho I have suffered from concussion and apnea induced cognitive and memory decline since 2001 at age 46. "Be still and know that I am God" Psalms 46:10 |
||||
|
Alan and Mark:
Thanks for notes and the thoughts. I'm fine with all of this, just concerned. I have not had a traumatic brain injury. I had epilepsy as a kid and, according to my neuro, it lay dormant for decades and then something triggered its return. It's interesting. Again, thanks for the advice. But, things are going great for me. It's just at times, I feel completely stupid and that feeling is difficult to accept. |
||||
|
![]() |
Hi Fdean,
May I add my welcome to the others. You sure sound OK with all of this! I'm surprised. I was very angry and upset when I received my diagnosis of EOAD. How are you coping so well?? Peace and Hope, Lisa check out my blog @ http://lcc-thoughtsfromtherollercoaster.blogspot.com/ |
|||
|
I was just diagnosed with eoad. I am 58. Doc seems to think it is familial as father had it at 55 granfather and great grandfather. I took all the cognitive tests and compared to the ones I had 7 years ago the results were very much worse. I had a PET SCan and the results were hypometabolism in the bilateral parietal and temporal lobes. That is what lead to my diagnosis. I was recently put on Nemenda. One thing seems strange, my memory is not that bad, maybe the pet scan was wrong.
It Pays to hang around |
||||
|
Lisa: Thanks for the thought. My doctors are curious about my reaction as well. I'm told it has something to do with the frontal lobe in that I feel euphoric while others feel depressed. Quite odd. But, that's the way it is.
|
||||
|
Jlassoff:
I had the exact same experience and pet-scan results before they started me on Namenda and Aricept. My pet-scan read, "Decreased metabolic activity in left temporal and frontal lobes." Fascinating stuff. But, the medications have seemed to help me, although I get days of disorientation and confusion. When I'm feeling good, like today, I feel like my old self. |
||||
|
![]() |
There was about an hour, two nights ago, when I felt like my old self. Things seemed so clear again. Just a little while, but it was nice.
Fdean, that is so cool, having a dementia that makes you euphoric. There are probably negatives that go with it, but it's a nice fantasy. As for my memory, I can't figure out how that sucker is working sometimes, other times not at all. I am at the lovely point where there are no repeats on tv, as far as I can tell. Alas, I do have trouble keeping up with a show, that's the least bit complicated. The tv has been on way less than last year. I had my imaging tests two years ago. Neurologist wants to look again. My thinking is, those tests were traumatic the first time around, and I'm not curious as to what they show now. Anybody else turning against more tests? Alan |
|||
|
Alan: I've only had the one pet-scan so far and they haven't scheduled me for another one so far.
I know the doctor's use the first pet-scan as a baseline. Do you know anything about the medications and dosages. I'm told I'm at the maximum on both the Namenda and the Aricept and I'm hoping my neuro does not add anything else to the mix. |
||||
|
Thanks for the encouragement. did you scan say hypometabolism? how long have you been diagnosed. do you take any other meds. i hope your good days far outweigh the lousy ones. what do you do to keep busy?
Jordan It Pays to hang around |
||||
|
Fdean,
Your scan showing 'decreased metabolic activity in the left temporal and frontal lobes" is not the AD indicator the study revealed. The study showed "hypometabolism in the bilateral parietal and temporal lobes" was a statistical indicator of AD with a 83% accuracy. I do not know what your left side only decreased metabolism means. jlassoff, The hypometabolism term used in only a relative term. They compare the signal from the different lobes and rate the relative differences. In the AD study with PET/CT, they noticed a relative difference between the frontal lobes and the temporal and parietal lobes. This relative differential could just as readily be interpreted to be normal metabolism in the temporal and parietal lobes and hypermetabolism in the frontal lobes. I know that is a QEEG exam of my brain, the doctor noticed that I have a ten fold increase in power in the frontal lobes and a 25% decrease in power in the occipital lobes. This 40 to 1 differential is considered to be a big part of my struggles. We need to remember that the different tests just highlight trends and statistical anomalies, they do not confirm a rock solid diagnosis. So, the doctors treat the symptoms, not the test results. Mark in Idaho I have suffered from concussion and apnea induced cognitive and memory decline since 2001 at age 46. "Be still and know that I am God" Psalms 46:10 |
||||
|
Alan,
What imaging tests did you find to be traumatic? I can understand an MRI being traumatic with all of the noise and tight quarters. The PET and CT are quiet tests and much shorter duration. I have learned to deal with the tight spaces by closing my eyes, pulling my arms tight to my chest so they NEVER touch the tunnel and imaging an open space. i am very claustrophobic, but if I can focus to ignore the physical confinement, I can get by. The FDG contrast injection was not much fun. I passed out like a light. I gave the technician a real scare because she had a difficult time reviving me. My brain scan in 1971 was far worse. They had to inject two syringes of contrast and mix the blood and contrast by moving the plunger in and out. Yuck. Then I had to lie perfectly still for 45 minutes while the scanner moved slowly over my head. An MRI, PET, or CT is easy compared to that old test. Alan, I wonder why they would want to do more imaging. Once they have a confirmed diagnosis, what else will they learn? It most likely will not change your medication regimen. Mark in Idaho I have suffered from concussion and apnea induced cognitive and memory decline since 2001 at age 46. "Be still and know that I am God" Psalms 46:10 |
||||
|
![]() |
Alan,
Is your logic "what I don't know won't hurt me?" Or does knowing make it more real? Is that your fear? Or do you fear the rage/depression that comes with hearing the news?? I am here. Peace and Hope, Lisa check out my blog @ http://lcc-thoughtsfromtherollercoaster.blogspot.com/ |
|||
|
Mark: In my Pet-scan the doctor notes, "Significant decreased metabolism...Probable early onset Altzheimers." Also, after the diagnosis I was referred for neuro-psych testing and following those tests, my neuro started Namenda and Aricept. I've been taking them for over a year and a half and they seem to work, though I do have some days when I can't find my words and I can't remember what someone just said to me and I repeat the same questions several times and I forget why I've gone into a certain room. It's frustrating, but those days only occur maybe once a week or so. I've heard a definitive diagnosis can only be made by an autopsy. Happy thought, huh?
|
||||
|
Mark: I meant to write "metabolic activity" instead of "metabolism"
|
||||
|
I would be interested in knowing what study points to "significant decreased metabolic activity ... Probable early onset Alzheimer's" when the PET/CT shows unilateral decreased metabolic activity.
I am not refuting the diagnosis. The study used by the Nuclear medicine people only identifies " a relative difference between the frontal lobes and the temporal and parietal lobes ." What did the neuropsych assessment report says was indicative of AD ? In one study I read, there is a serious overlap between Alzheimer's Disease, Vascular Dementia, and Traumatic Brain Injury in a neuropsych assessment. You don't have to die to be tested at a cellular level for AD. There were AD patients who had biopsies to confirm an AD diagnosis in the PET/CT study. I have heard of a Cerebral Spinal Fluid test that can point to AD too. I just did a quick review of the literature regarding neuropsych assessment for diagnosing AD. For a proper diagnosis using neuropsych, there needs to be a repeat of the assessment that shows a decline in function. The first neuropsych assessment can only identify dementia, MCI (mild cognitive impairment), and symptoms of a traumatic brain injury. There are some patterns that emerge that point toward AD but these patterns are very subjective. An important issue with neuropsych assessments is the battery of tests used. The test administrator has to have a preconceived opinion of what to test for in order to use the appropriate battery. The common battery used for AD does not differentiate from other dementias with much accuracy. It appears that the AD battery is commonly chosen due to no recognized history of trauma. This does not mean trauma has not taken place, whether it has been by impact or TIA (mini-stroke). One of the problems with traumatic brain injury is the often lack of memory of the trauma. This can be even more common with TIA. TIA's are often only diagnosed by the symptoms that appear later. Many minor brain traumas do not become symptomatic until days or weeks later, thus disconnecting the trauma from the symptoms. Cognitive Decline NOS is just a way of saying "We don't know what has caused the cognitive decline." In a search for causation, the options are Somatoform Disorder, Traumatic brain injury TIA, AD, Vascular dementia (with or without imaging to verify) Toxicity, etc. It appears that some of the AD testing batteries have been developed to use as a drug prescribing format, rather than a definitive diagnostic tool. Thus, the declining condition sounds like the primary tool for diagnosing AD versus other dementia causes. Mark in Idaho I have suffered from concussion and apnea induced cognitive and memory decline since 2001 at age 46. "Be still and know that I am God" Psalms 46:10 |
||||
|
Mark:
You are obviously well read on the subject. But, all I know is that I've been taking Namenda and Aricept for almost 2 years now and three neuros have confirmed the diagnosis. Not what I wanted to hear |
||||
|
![]() |
Thank you all so much for the support!! This has been a low day, like I keep waiting to wake up.
You're all right, the brain scans aren't that bad. I guess what crushed me was the neuropsych testing. I've been trying to think about why more testing scares me, and I think it's pretty simple - - it describes in detail how damaged my brain is. I'll have you know that I spend a lot of time trying to keep that personal brain stuff at a distance. But then I have a couple nights' extra poor sleep, go out with a buddy for coffee a few hours, follow my wife around shopping, not so much really. But this afternoon it was time to go with my wife to the gym, and I'm . . . ??? Subdued? Low energy maybe? Partially clogged? At the gym, the trainer that I like to kid around with caught on, and I could tell he was hovering nearby in case of . . . what? I do something strange, or who knows. Now it's hours later, and my head is still partially clogged. My psychiatrist said he didn't see the need for more testing. They found dementia two or three years ago, and it's obvious that I'm worse than I was then. The additional symptoms I've developed are part of Alzheimer's pathology. He doesn't think that I can be helped more, by tests measuring what's happening. I'm diagnosed, medicated, don't need placement, so just let it go. Lisa, thanks for the question about my emotions. Bottom line, I might hate what this disease has done to my emotions, more than what's happened to my memory. As angry as I can get, the flip side of that is how a big old bowl of sorrow can spill on me, tears and sobbing and all that humiliating stuff. Both have even shown in public, and that really blows. This note took just over half an hour. Anybody faster? Alan |
|||
|
Fdean,
What criteria did the three neuros use for your diagnosis? If it was the same test or image results, then I would expect them to come to the same conclusion. If it is your felt response to the meds you are taking, then that is a diagnosis based on anecdotal information. When you start to understand how much doctors, including neuros, don't know, you start to realize that your diagnosis is still just an opinion. I have been caught in the cycle of each successive doctor piggy backing his diagnosis on previous doctors' diagnoses. Early on, one doctor put somatoform in my medical record. Ever since then, I have been getting the run around. A neuropsych said my memory and cognitive problems were caused by depression. A later neuropsych found the same level of memory and cognitive problems but again diagnosed depression as the cause. The first even had the .....'s to say that 'even though the patient does not show elevated scores in the depression scales of the tests, he must be faking the depression tests or faking the memory and cognitive problems. This is despite the validity testing shows 49, 49, 50 (50 being a perfect score for NO malingering)20 to 30 meaning malingering. Many doctors use response to medication to validate a diagnosis. If there is a placebo effect from the medication, they will still use the improvement to validate their diagnosis. Some neuro meds effect far more than the labeled condition. If you read the literature on Namenda and Aricept, they both say "drug is THOUGHT to effect how the brain does such and such....." Neither has a scientific effect listed, only a presumption of effect. I got so fed up with the depression or somatoform baloney, I researched the tests and learned how to interpret the scores. Three neuros have all said the same somatoform based on negative imaging. A fourth doctor could identify my symptoms as organic based neurological problems by the way I spoke when she took my medical history . I have discovered that many doctors choose the easy diagnosis and throw meds at it to see if the meds stick to the diagnosis. I think it is curious how they are called Doctors of Medicine and not Doctors of Anatomy and Physiology. They use medicine as the diagnostic and treatment method. Alan, I could type this in much less that 30 minutes if I did not have to spend so much time correcting my spelling. If I tried to tell you my comments auditorily, I would not be able to. I need to read what I have already typed so I can remember my train of thought. If I try to speak my thoughts, my train of thought loses it caboose or derails or switches to another track. But then I digress. Mark in Idaho I have suffered from concussion and apnea induced cognitive and memory decline since 2001 at age 46. "Be still and know that I am God" Psalms 46:10 |
||||
|
![]() |
I can always write better than I can talk, for at least a year, maybe two. There are times when I can talk just fine, just not as many as I'd like. I can usually pull off the casual banter that guys like to do. Not today, but usually. What I really hate, that's happening more every month, is I'll start a sentence but lose my point before I get to the end of it. Alan |
|||
|
Mark:
I can appreciate your perspective. The neuropsych's I have seen have not indicated any indication of malingering. In fact, all have indicated that I have cognitive impairment particularly in visual spacial testing and short term memory. I too must spend a ridiculous amount of time phrasing and correcting spelling when I write. It's frustrating. Again, I'd rather not take the meds I'm on. I'm not a fan of pills. Does anyone know of any holistic treatments re EOAD or the like? |
||||
|
Alan,
I've been dealing with this problem of losing my train of thought for years. I think it is part of why I have tendency to not get involved in social settings. I get tired of having to tell someone, "I forgot what I was trying to say." Mark in Idaho I have suffered from concussion and apnea induced cognitive and memory decline since 2001 at age 46. "Be still and know that I am God" Psalms 46:10 |
||||
|
![]() |
Alan,
I know how you feel about more testing. I catch myself still wishing for a reversal of my deficits. Still wishing for my old self. And, when I have some tests done, it's like a slap in the face of reality! It sucks! Like you, I am better with writing, so far at least. It does take some time to compose. And, I'd be lost without spellcheck. I met with an old friend for lunch yesterday and trying to hold on to the conversation wore me out! I had so much trouble remembering names of things. And, I would loose my place when talking (like blanking out). Hang in there, Alan. Thinking of you! Peace and Hope, Lisa check out my blog @ http://lcc-thoughtsfromtherollercoaster.blogspot.com/ |
|||
|
![]() |
Dear Fdean,
Hang in there. You're doing great! Peace and Hope, Lisa check out my blog @ http://lcc-thoughtsfromtherollercoaster.blogspot.com/ |
|||
|
re: malingering
After I had to stop working due to sudden memory loss, I underwent neuro-psychological testing. The psychiatrist reported that because my scores were so low and I was a physician, it was obvious to him that I was malingering. This was in 1988. So, according to him, I have been "malingering" for over 20 years. Iris L. I am my own caregiver. |
||||
|
Lisa: Thank you. You too. It's a strange thing to be so dependent upon medication and doctors.
|
||||
|
Has anyone been diagnosed with mixed AD and FTD? My MRI indicated FTD; my pet scan indicated AD; I have symptoms of both.
Thanks for any help. AD/FTD dx 2007 |
||||
|
DC: The mixed bag is what I've been told as well, though the stage I'm at confuses me. I feel okay most of the time. But, when I feel stupid, it shocks people around me and some of them don't seem to believe me. That is difficult to accept, especially when you are having a good day.
|
||||
|
![]() |
My first year, I guess two years, it was difficult to tell what kind of dementia I was developing. Lots of labels were tried.
The last year, maybe 16 months, my new symptoms and the way the others have progressed, all point toward Alzheimer's. I wonder if that's common? That the disease needs to progress a while, before it's true nature is known? Alan |
|||
|
Iris,
It appears you had the same logic applied to you. In my case, my WAIS-II scores were in the 94 to 99+ range. In other words, my IQ is very high. But, my WAIS processing speed score was at 10%. My short term and immediate memory scores (Wechsler Memory Scale)were at the bottom 5% to 12% of the population. The neuro-psych said that these high IQ scores invalidate the low memory and processing scores. I was never able to get the raw scores from the first neuro-psych. The first neuro-psych refused to release them to me despite the laws governing 'right to medical records, etc" The second neuro-psych tried to prevent the same and noted in his records that the scores should not be released to the patient as he will object to the findings. Of course I would object to the finding when the report is not a representation of the scores. I think part of the problem is when the neuro-psych has to report on someone who is demionstrably MORE intelligent than the neuro-psych. Especially in my case where I do not have a college degree vs. their Ph.D. or Psyc.D. Both neuro-psychs were clueless to how the testing environment can skew the scores. The second neuro-psych tried to administer a PASAT with a hand stop after reading the test questions verbally. I watched him start the stop watch a moment or two after he said the question. He was very inconsistent. Dr Gronwahl designed the PASAT test to be administered with a tape recorder to maintain the proper pace of the test. Even so, my scores for the second neuro-psych were within 5% of my score for the first neuro-psych. If you read the attorney's web site about brain injury, they recommend against neuro-psych assessments because of the bias factor introduced by most neuro-psychs. It appears this bias factor is rather wide spread. My brother is about to enter graduate school in psychology and needs to pick a specialty. I have encouraged him to specialize in dementia telling him that there is a serious lack of good dementia specialists. He helped care for our father as he deteriorated with his dementia. Mark in Idaho I have suffered from concussion and apnea induced cognitive and memory decline since 2001 at age 46. "Be still and know that I am God" Psalms 46:10 |
||||
|
Alan,
From the studies I have read, the rate of deterioration and the types of deterioration are used to differentiate between AD and the other dementias. Some (many) physicians appear to make an early diagnosis while others wait to see the progression. I have been reading the studies for about 8 years, both AD dementia as we cared for my dad and for non-AD dementia's as I tried to understand my condition. There appear to be those who want to delay a diagnosis out of some sense of compassion or denial and others who speak up early either out of ignorance or delay waiting for more serious symptoms to force a diagnosis. Then there are those who look at the patient from a scientific viewpoint and do a better job of connecting the dots. My offhand observation is that there are about 20% doing the later and 80% doing the first two. I can't tell whether the health care system impacts the diagnosis timing with attempts at controlling costs or are the doctors just lazy or ignorant? This diagnosis issue extends across all of the non-imageable head injury / brain disease field. Unless they can see test results that are indisputable, there is a serious diagnostic void. Mark in Idaho I have suffered from concussion and apnea induced cognitive and memory decline since 2001 at age 46. "Be still and know that I am God" Psalms 46:10 |
||||
|
Fdean and D C,
I just found a study of interest to your cases. The abstract alone explains as much as you would want to read. The study was about differentiating FTD, VascD, and AD with MRI and SPECT. http://www.ingentaconnect.com/...05/00000004/art01148 Fdean, The FTD description of the images sounds like your image report. It mentions the unilateral aspect of frontal and temporal lobes. Worth a read when you are up to it. I have been doing well the last few days. Maybe you can tell by my wordiness. Usually, I cannot read the study reports and comment the same day. I have to bookmark or print out the study reports for review at a later time. Mark in Idaho I have suffered from concussion and apnea induced cognitive and memory decline since 2001 at age 46. "Be still and know that I am God" Psalms 46:10 |
||||
|
Mark, I wasn't aware of what you wrote about the examiner bias in testing, but I'm not surprised.
Mark, please add my voice in encouraging your brother to work with dementia patients. The field is wide open and growing. There is much he can contribute, in the way of diagnosis, treatment, policy, etc. We need EARLIER diagnosis! We need professionals who will LISTEN to patients and not just try to placate us and warehouse us! Iris L. I am my own caregiver. |
||||
|
![]() |
Mark, I'm thankful that your brain is working so well tonight. We have to treasure these times, my friend.
Doesn't matter how much I've lost, I'll still kind of go off on somebody who doesn't respect my intelligence and study habits. Heck, in addition to some college teaching, I gave professional trainings for a bunch of years that other professionals had to pay to hear. I've been featured on tv news as expert on a few cases . . . ok, a long time ago, but it happened. But no matter, nowadays I'm pretty sure everybody, literally everybody who knows me, filters what I say through the Alzheimer's filter. Don't be impressed by the Psy.D.'s degree. That whole thing is just marketing to poor students. You see, American schools in general do a bad job of teaching math. Psychology Ph.D.'s have to learn a lot of difficult statistical techniques. So, they took out the math, added some counseling and an easier research paper, and called it a Psy.D. And Mark, tell your brother that a doctorate with research emphasis on dementia is a golden ticket. Alan |
|||
|
Hey guys,
This may sound ridiculous but I was wondering if any of you have heard of employment opportunities for a disabled EOAD/FTD? I wouldn't hire me, but I feel so good lately that I'm wondering if anything out there exists. Seems like a nutty question, but I don't know what to do with myself when I'm feeling good. |
||||
|
| Powered by Eve Community | Page 1 2 3 4 5 6 7 8 |
| Please Wait. Your request is being processed... |
|
Message Boards Forum Index
Alzheimer's or Other Dementias Under Age 65
Welcome to our online community for early-onset Alzheimer’s.
