Last night, I received a cry for help from Debbie in Australia. She has known for a long time that something was wrong with her 37 year-old husband, but did not put the pieces together until she read the story about the 31 year-old Australian woman who gave birth and was not aware of her child. She asked that I post this on the message boards for her. This is her e-mail. I urge everyone to respond to her pleas. Thank you.
joang
Hi, we are currently searching for a diagnosis and I stumbled across alzheimers after reading in the new about the 31 year old in Sydney who has it. Since then it is like the light has been switched on!
I was wondering if you would mind posting this on your message board on my behalf? I would not feel right joining since we don’t know if it is EOD but it would really help me if I could get some opinions.
We are facing massive red tape and trying to get into specialists is taking so long (his started seeing a neuro due to torso numbness last year, the memory issues, although apparent to me for quite awhile have only become apparent to others last year too), right now he is on a formal warning from his work (IT business analyst) and is facing being let go sometime in the next month as it is review time and he doubts he will score high enough so I am fighting so hard to get someone to realise that although this may not be life threatening right now if he loses his job then a family of 9 (we have 7 children aged 16, 10, 8, 5, 4, 2 and 15 months) will end up on the street. It doesn’t help that he seems to downplay what is happening.
We had already reached breaking point, only 2 weeks ago I was telling him he should go and live closer to his work and just come and stay with the kids on the weekend, he talked about the money, I said I would get parenting payment (we are in Australia) and he said but we need to be separated for that, I said yes we would be separated and he just looked blankly at me and said ok, pretty much what he says to everything, ok ok ok ok ok I will scream if I keep hearing that!
Anyway I am hoping to maybe get some reassurance, all of the personal stories really fit our situation, all the little things that are not included in the clinical descriptions so if anyone has a spare few moments could you read my list below and tell me if any of this sounds familiar?
At the moment I feel like I am lost at sea about to go under . I thought he was becoming someone I dislike, I thought he didn’t care about me anymore, I thought he was playing mind games and turning into a horrid person
Now I think he has young-onset alzheimers and although that scares me, it scares me even more if it is that and we waste years trying to treat it as something different. I know my husband, he is not severely depressed, he has had 3 MRI’s that show no tumours or lesions.
He is 37 and he has been bad enough that it is affecting his job since middle of last year, very noticeable to me since early 2008 but it also explains A LOT from the year or 2 previous to that as well.
Always losing his phone, previously he never misplaced his phone
Loses words in midsentence often
Forgets what he was talking about often
Forgets what he has spent money on often
Spending money with no thought, often when had access to money
Skips things on list, substitutes things have explicitly said not to, buys unnecessary things
Gambling, disappearing when going to get dessert or shopping or dinner (with all the kids waiting for him to come back with dinner, leaving shopping inc frozen goods in the car for 5 ½ hours while gambling) This has not happened since e curtailed access to money and made sure he always has someone with him.
He will stare at a blank screen or watch the ad’s intently
Takes himself off with the kids, out of the conversation, I notice it is usually when he seems to have forgotten words etc
After a few minutes of talking he changes subject, does something else
Temper outbursts, usually over a perceived “attack”: on his character
Has trouble comprehending issues regarding communication
Is almost indifferent to responsibilities at times
Forgets entire conversation, it is as though it never happened, does not recall it later,
sometimes has a vague memory of a conversation but only remembers 2-3 words , even if it happened only 30 mins previous.
Sometimes has a vague memory of something regarding something being said but no details.
Very insistent, sometimes angry when told his memory is wrong
I have to explain step by step, either instructions or plan for the day etc, sometimes I need to repeat it 2-3 times
At various times I need to try to get his attention 2-5 times before asking him a question or telling him something.
He repeats something he has already told me/others either in the immediate past or past few days, has no memory of telling me/others
He asks something he has already asked me/others either in the immediate past or past few days, has no memory of asking me/others
No sense of time passing, has never been his best feature but it has deteriorated markedly, affecting his work enough to result in a formal warning
Cannot plan things within appropriate/realistic time frames
Will use the wrong word sometimes with no apparent knowledge that he has done so
Pays less attention to appearance for work
Blames or points out others mistakes when confronted with his own mistakes or issues
Usually only shows affection when prompted, although there are some days when he seems more affectionate than usual with the children
Poor/irrational judgements where work is concerned, delaying tasks to make sure “there is always something for him to do” even though his performance as failing and he was not finishing the tasks required
Irrational judgements in various situations at home or out. Some minor but disruptive. Noticeable to myself and 16 year old.
Actively hiding the loss of words/memory when he becomes aware of it, he seems to not be aware of the loss until communication with someone else makes it apparent
Seemingly indifferent/emotionally flat regarding large life issues such as renewing the house lease, impending loss of job, although it is like a see saw, sometimes he is “present” and fully engaged showing emotion etc about such issues, oftentimes he is “not present”
Choosing to wear a holey t-shirt when taking children to dentist appointment in spite of a huge pile of almost new t-shirts to choose from
He becomes agitated over small things
Lying to cover up mistakes, things forgotten etc then when confronted he doesn’t seem to under the enormity of lying to his wife, lying to me isn’t normal is it?
Gets lost in conversations, can’t keep up
We have a big huge fight (usually stemming from his irrational anger over something), it seems to follow a pattern every time and then by the end of it he can’t remember saying the things he did at the start, later that day or the next day he has no memory of arguing at all.
Most of the issues you list do sound like they could be caused by Alz or one of the related dementias and unfortunately, most do not show anything on the MRI in the early stages.
I am in the US so not familiar with your medical systems or work disability systems. One of the most important things you could do now is insist on neuro-psych testing. This testing should reveal the extent of your husbands deficits and should be the ammunion you need for a medical disability from work if that is available in AU.
Here in the US it is very common for the neurologist to order the neuro-psych testing and it is usually done by a psychologist. I would speak to the neurologist you already have about this. Again I am uncertain how your medical system compares to ours but we often find the best care at a Memory Clinic/Centers that is attached to the Universities and medical schools and specialize in these types of disorders.
Many of us also struggle here to get the diagnosis. Particularly when our spouse is completely unaware of their deficits as yours is. Join this group and ask questions on this site. We have others without firm diagnosis so it is not a requirement.
Debbie, Firstly, I am so sorry you are dealing with these changes. Some dementia's are very hard to diagnose. My husband started losing his memory at age 50, problems started well before that....he is 59 years old now. We went to the doctor immediately when strange behavior started. Over the past 10 years he had 5 MRI, Lumbar Puncture, CT Scans, Numerous Blood test, 2 PET Scans & Neuro-Psyh testing...which he walked out of before completing all without a diagnoses. His memory declined each year, finally in July of 2008 after the 2nd PET Scan he was diagnosed with Frontotemporal Dementia (FTD) which does occur at a younger age & very hard to diagnose. Hopefully, the Neurologist will continue to investigate with other testing. My husband was also tested for other conditions that cause memory loss. As Catherine suggested, please join our family, there is so much hands on experience here. I would never have made it without these lovely friends, that are always willing to help, if it is only a cyberspace hug.
Debbie, ALL of the items that you mention could be caused by Alzheimer's or a related dementia. Also his unawareness of the problem is a common (though not universal) symptom.
"Lying" is also very common, but it is partly unawareness that something untrue is being said. When my husband denies having eaten all the cheese, he seems to have forgotten that he ate it. He does not seem to be devious, for at other times he will admit to eating something, even something that he was not supposed to have (he's diabetic but has forgotten it).
I am so sorry that you are going through this with such a family of children to care for, and your husband's job to worry about. My husband was already retired when the symptoms appeared, but he was doing volunteer work that he had to be gently eased out of, because he had no idea he was no longer doing the work correctly, just creating more work for everyone else. Your husband may never admit that there is anything the matter. This is not pig-headedness but a genuine unawareness, known as anosognosia. Please join us. You are not the only one who's still not quite sure what's going on. Everyone here will try to help.
Debbie - you might try contacting the reporter that did the article if you have trouble getting a doctor to take you seriously. Another article might help your cause and help get thru the red tape faster. Do whatever it takes to get that neuro appointment and testing. Unfortunately the responsibility will rest on your shoulders, not your husband's.
I agree that the first thing is neuropsych testing. It should take at least 3 hours and longer. My hb's first was 3 hours but the 2nd one was suppose to go 2 days but he quit -said he couldn't remember anything so why continue. He left in tears.
But do not forget to rule out other medical conditions. Somewhere there is a thread that list many conditions that can have similar symptoms. I would push for the testing while doctors rule other things out. I am so sorry you are having to go thru this at such a young age and your children.
Please join us here and keep us updated and we will give you all the support we can.
There is a psychological phenomenon called confabulation. AD patients do it frequently in the early stages. It is not outright lying it is the insertion of reasonably plausible filler in stories or memories that have gaps due to the disease. My wife could not remember where she had been so she made up something that seemed reasonable. It was not intended to deceive... it was to cover up her inability to recall.
Debbie--In America we have a law, I believe it's called the American Disability Act (ADA) that requires employers to make modifications so that disabled people can remain employed. I believe this applies to mental, as well as physical, disabilities. I quickly Googled "disability rights Australia" and saw that there may also be laws on this subject in your country. In addition to trying to get a diagnosis, I think you should look into this as it may help your husband keep his job until you can get things sorted out. Good luck.
Thank you everyone as you can imagine life is hectic here so I don’t get a lot of time to type things up, although I have spent the last 4 days reading everything I can find, from articles, forums, personal stories and even medical journals (I am looking into the difference between severe depression and dementia as I am sure the doctors will say that first).
Yesterday I started looking for private neuropsychologists, there are only a few in my state and they are expensive but I found one that could do the assessment (2 x 2 hour sessions) over 2 days next week for $800, I could get the money but it means not paying bills etc but I think it’s worth it if it means his work might be able to keep him on.
I talked about it last night with him and he was disinterested until just before bed when he became irritated and said we should just wait for the report/referral from the neurologist. I pointed out that in the public system we may have to wait more than a month just to be seen which means he may be fired before then and he still insisted we wait even though he couldn’t tell me what the letter/referral will say that will speed things up.
Anyway I am hoping we get it today, if not I will send him an email for him to forward to his superiors and HR representative explaining the wait times and the cost of the private, maybe they might pay for him to have it done privately.....I doubt it but worth a try!
I also found my states memory clinics (Thank you SO much to all those who suggested it) I will ring them as soon as I have the neurologists reports and get him in, even if we go private now for work purposes I will try and get him seen at the clinic for diagnosis.
I found out about Anosognosia (Confabulation – I had never realised that was a real word *grin*) after I had emailed Joan and I had tears streaming down my face while reading it, it fits it so many ways, so much more than lying. It explains why it seems like he doesn’t care.
JeanetteB – “because he had no idea he was no longer doing the work correctly, just creating more work for everyone else.” My husbands superior mentioned this at his formal review (2 meetings, I was there for the first one), that others are having to review his work so often it is causing them delays in their own work.
I found out about Anosognosia (Confabulation – I had never realised that was a real word *grin*) after I had emailed Joan and I had tears streaming down my face while reading it, it fits it so many ways, so much more than lying. It explains why it seems like he doesn’t care.
JeanetteB – “because he had no idea he was no longer doing the work correctly, just creating more work for everyone else.” My husbands superior mentioned this at his formal review (2 meetings, I was there for the first one), that others are having to review his work so often it is causing them delays in their own work.
Over the last few years I had wondered how my husband could turn into such a pig headed jerk, so stupidly stubborn and unreasonable. It seemed he was only like that to me, then he became more irritated and angry at times towards our 16 yr old, now he doesn’t hold back when he is angry, even in front of the little ones. Obviously the issues at work are bad enough for it to get this far, and his anger and mis-perception of the issues at work are so hard to deal with, he doesn’t blame the people at work but somehow everything ends up being due to the them. A document he was working on directly with his boss went through countless revisions, he says it is because his supervisor kept changing things, his supervisor says he should be able to correctly identify and write to the target audience, it wasn’t formal enough. The document he wrote last week was too formal and his other supervisor said the same, apparently this means that no matter what he does he will be fired, that they are “shafting him” (not sure if it means the same thing in the states, setting him up to fail). From my perspective that is rather irrational and almost delusional. It would be explained by not having the memory or awareness of the issues.
I know his sister inlaw sees it, I think his brother and other sister inlaw can see something but they would never speak negatively of him so I haven’t bothered asking them what they think.
He is so lost right now, I asked him if he feels a sense of urgency about anything, and he said nope, not at all, it’s like he cares but he doesn’t.
I talked to my parents about it and when my mother told my father he said he wouldn’t be surprised, he looked after his mother during her battle with Alzheimer’s so hearing that was disturbing, and his sister in law told me yesterday she was sure they would have found a brain tumour or something and he is definitely not right.
Things I have found out in the last few days- He forgets phone numbers which stands out as he has always had an impeccable memory for numbers and phone numbers especially. He has trouble planning things thinking of the steps involved in completing tasks.
Sometimes he doesn’t have any memory of what he has written/typed, he recognises his handwriting but has no memory of writing it, it is like a stranger has written it.
I realised he is becoming more angry at strangers, he was always a pretty easy going guy, didn’t let the little things stress him yet things like having to wait in the waiting bay at McDonalds when there are no cars behind him, not being given a discount on overdue video hire fees, other drivers, work mates etc really make him angry. He is extremely intolerant and impatient; he was not always like this.
Finds multi tasking difficult, like he can’t talk while dressing, can’t look at this phone and answer a question.
I am sorry this turned out to be so long, it is not only cathartic to get all this out after keeping so much to myself for so long but it also reaffirms that something is not right, this is not normal, it is not just marriage breakdown, it is not me being crazy.
Thank you again for your words of support, they were much needed and gratefully received :-)
DON"T APOLOGIZE HERE FOR ANYTHING! That's number one. You are obviously, and understandably, under a lot of stress, and as soon as you can get some kind of diagnosis ... well, it won't get easier but at least you'll know IT IS NOT YOUR FAULT!!! The others have suggested ways to deal with his job, etc.. You may have a hard row to hoe for awhile but eventually it will get better. Trust in that. And stay in touch with us.
Oh my gosh! Your description of your husband sounds so much like mine! While reading your post I realized how far back his dementia could have been going on. The impatience with others, fighting with clerks in stores while having his grandhcildren along, lying, I could go on and on. We're very, very fortunate to have found this website. I hope you will avail yourself of its very helpful content and very friendly and loving people.
Statistically AD is still an "old person's" disease. Because of this demographic skew the "10 signs" do not always lead to the recognition of symptoms in younger victims because their life situations are different.
While pesonality change IS on the list (and seems like it might be present in your case) sudden and recent OCCUPATIONAL INCOMPETENCE is NOT on the list. Those of us involved with younger onset dementia (my wife's Sx started at 55, she was forced out of work at 57) know it well. It hurts really bad when your spouse who has performed their chossen profession for decades, is suddenly branded "incompetent"
Poor evaluations and multiple firings (my RN wife was fired 6 times in 2 years) should be on the warning sign list. "You idiot! Why cant you keep a job!!!" was shouted more than once in my house before the diagnosis. Now, I understand. NOW it all makes sense.
If the Alzheimer's organizations could pull some of the age bias out of the warning signs and do more outreach to recognize the possibilty of developing AD 'before retirement' it could help young families who really need the help.
BTW - once you get a diagnosis the symptoms are not any easier to deal with but the fact you finally know WHY does make it a LITTLE EASIER to cope with. Once you get a diagnosis you can recognize that it is not their fault and they are not doing it all, just to make you mad . . .
Is there any chance he can get disability retirement from his job? In large systems it is often easier for them to do that than to fire someone, and if he can get a diagnosis then he ought to quality for disability.
Thank you again for your support, I don’t think I have ever seen a forum as caring as this one.
At the moment I am see sawing between yes this is possible/probable to, no, this is not possible, it will be something else.
Hindsight is both a blessing and a curse, it makes me wonder how long ago his personality changes began, but then it makes me wonder if some things are just extensions of existing character faults, it’s enough to drive me crazy!
Since our current situations seems to mirror many families with EOAD I am determined to keep at it until we have a definite diagnosis, I am not prepared to see my entire family destroyed due to failings in the public health system. I am concerned that if he loses his job yet has difficulty getting another one due to memory issues, not to mention he could not work in his field again, it would have to be a role requiring less reliance on memory etc meaning he will be competing with younger people who could be paid less then he will be forced to look for jobs he has difficulty in doing and would be knocked back for sickness benefits without a diagnosis.
I have arranged for a neuropsychological assessment this week, 2 x 2 hour sessions, I know this is less than the ideal but it was the cheapest (if you can call $800 cheap!) and since bills will be going unpaid to cover it I just couldn’t justify another $400 for a 5 hour assessment. She is very qualified and is happy to work around my husband’s impaired memory. She actually emailed me this evening asking if he had had a “confusion or dementia” screen blood test, which is reassuring as I had planned on sending him to the local doctor tomorrow to ask for one along with any others he may deem relevant. She assumed it had already been done which says to me she is considering the possibility of EOD just from the brief information I have already given her.
I will be trying to get him into the new neurologist as soon as possible as I really think they need to start investigations again based on the complete picture rather than the vague information he gave the last neuro.
The last few days have been unnerving and enlightening. I have been much more tolerant and loving and not only has this lessened the conflict and my stress levels, he seems to have settled somewhat, he is at least accepting that something is wrong even though he is unaware of the issues either as they occur or afterwards until I point it out.
I was giving youngest his medication tonight (he has reflex anoxic seizures) and said I need to go slowly tonight since he threw up earlier, he aspirates occasionally, DH (dear husband) asked me what aspirate meant and I explained, a few minutes later I asked him what he was thinking as he looked serious, he said he knew what aspirate meant, I said yes, he said no I knew, as in past tense, what it meant. He said it was very disconcerting, like learning a new word, he knew the word but no idea of what it meant, could not have used it in a sentence and when I told him the meaning he had no recollection of ever knowing the meaning before.
The look on his face was heartbreaking :-(
I will be looking up his work policys and superannuation (inc total and permanent disability) info tomorrow and I am really hoping the neuropsychologist is onside, anything from her will be much weightier than coming from me.
Debbie, my late husband was dx'd with FTD (frontotemporal dementia) which also can strike young people after having a contratst CT Scan. Many times regular MRI's don't show much. So much of what you are describing is hauntingly familiar. Know that we will always be here for you. ou are off to a great start with the neuropsych exam. Keep doing as you are, educating yourself. For us, the caregivers, knowledge is power and comfort. God Bless you and your precious children. Arms around, Susan
My husband has FTD (diagnosed when he was 58) and his CT scan did not show anything irregular. So he was given every blood test for metabolic disease that could have caused his symptoms--Vitamin B, testosterone levels, syphillis, HIV, Thyroid, and probably a few others I don't remember. The blood tests came back normal. Then he was given an MRI with and without contrast. The MRI showed that he has frontal lobe atrophy and then after neuropsychological testings we where given a diagnosis of FTD, probable behavior variant. Remember that sometimes even the MRI will not show anything if he is early in the disease. I believe a PET scan shows the most information on the brain as it actually shows how the brain is working but can be difficult to get approval for it to be done.
I hope you can get all the testing required done without to much financial difficulties for your family. Warms thoughts to your family during this difficult time. (((Hugs))) from another Debbie
Debbie - you are not alone in going back and forth in your feelings. Everyone of us on this journey seesaws between is it really or is it something else back. It is a process and since even a diagnosis of Alzheimer's is not 100% certain, there are times we want to think it may be something else. Even in my husband's case where it has been for generations on his father's side, I still want to believe it is not true, then reality comes back.
Let us know the how the testing goes. My husband's first one was 3 hours. The second time, a year later, he walked out after 3 hours, went back the following week and quit after an hour in tears. He kept saying 'I don't need a test to tell me I can't remember'. I begged him to continue so we would know what areas are being affected the most, but he wouldn't. The doctor wants to repeat in 2 years but told them I doubt it very much. He won't take part in trials either because he doesn't like being questioned - the MMSE.
Debbie, I stood up in church yesterday and told your story. You have a wonderful group of people praying for you daily now. Hang in there, you are not alone. Arms around, Susan
Thank you again everyone for you words of support, thoughts and prayers :-) As I said life is hectic so posting is difficult.
I am sending my husband to arrange blood tests tomorrow, the neuropsych asked if he had a dementia screen yet.
He had a 2 hour session on Monday which included going over his history etc then a 2.5 hours on Thursday with a further 1 hour feedback session which I attended. She said she can’t tell us what it is but she can tell us what it isn’t, it isn’t Alzheimer’s because he had no trouble drawing the shapes and he is too young. It fits FTD except she would not expect such severe memory impairment in FTD, and he’s too young. It doesn’t fit any other form of dementia. If you take into account each part of the brain that all his symptoms show as affected it means his hippocampus, frontal lobes and brain stem (his numbness) and she said based on all three she has no idea and he needs to see a neurologist asap.
She tested his memory and executive function, came back with severe memory impairment and although the testing did not show impaired executive function she believes the history that does show it. She noticed him struggling to find the right words and occasionally substituting words but thought it was too subtle to show up on her tests and she did not have more sensitive tests with her. She brought up that I need to executive function for 2 now, that it seems it is progressive and the need to plan, if he can’t do his job anymore, and what we would do if it continues to progress, He didn’t really get what she was talking about but I understood.
I will be ringing the neuro he was referred to on Tuesday and see how quickly they can get us in.
He is getting worse, it is more noticeable and his work is not improving. Although he is keeping up with the operational tasks his documentation and report writing is not good enough, apparently he is putting things in the wrong places etc and just not realising it.
She was very impressed with the history I gave her and asked if I was a psychologist, he said no but that I studied Psychology at Uni but had to give up when I had our last child. When he told me that night I asked him where I had studied, how long I had studied for and he couldn’t answer me, he just smiled but said nothing, I then asked him about where we lived when I had Kai (our youngest) and things that happened around that time and then said the last time I studied was just after our 5th child was born and it was for only 8 weeks and it as a BA in Internet Studies and had to give up due to my fibromyalgia kicking in. He said “oh yeah” and just laughed, that was more disturbing than the story, that fact that he wasn’t bothered by the fact that he had such a real memory that wasn’t true.
I am trying to be more patient and understanding but it is hard working out what is a result of whatever is happening in his brain and what is an issue we should resolve, what should I accept and just let go and what do I say hey that’s enough to.
You are experiencing what almost ALL of the EOAD members here have experienced - That dreaded, COMPLETELY INCORRECT ASSUMPTION that he is TOO YOUNG for Alzheimer's Disease or FTD. It has taken many of our EOAD members up to 3 years to get a correct diagnosis because doctors, including neurologists, do not consider EARLY ONSET ALZHEIMER'S DISEASE. Just look at the case of Tracy Mobley, our monthly guest blogger, who was diagnosed at age 38 with Early Onset Alzheimer's Disease, which was later refined to Early Onset Frontal Lobe Dementia.
Please go to my home page - www.thealzheimerspouse.com - and look on the left side. Scroll down to the sections on Early Onset AD. I would suggest printing out all of the articles, including the Early Onset AD - Practical Guide, and bringing it to the doctor to read. Give him this website address tell him to do a "search" on the message boards for EOAD.
Look at the case of Laura and Jay Jones - Jay was diagnosed - FINALLY, after 3 years of aggravation and frustration - at age 42. That was after the doctors told Laura there was nothing wrong with Jay - it was her fault. She was stressing him out. I urge you to read and print out this blog - http://www.thealzheimerspouse.com/LauraandJayJones.htm
There is the case of Tony Pesare, whose wife Tracy was diagnosed with EOAD at age 38, after 3 years of misdiagnosis. Tony had to travel from Florida to Boston to finally get a diagnosis. http://articles.orlandosentinel.com/2008-06-15/news/spotlight15_1_early-onset-early-onset-raise-awareness
I would strongly suggest bringing these articles to the doctor.
Debbie, when my husband was first tested in 2008 he could draw the clock with no problem - he still does a good job of it. He scored a 27 on the MMSE - last score was 22. That did not change the memory loss that was going on. He was 60 at the time. He was diagnosed aMCI (amnesic Mild Cognitive Impairment). He has sense progressed to AD. My SIL was 55 but had been showing signs for years but we just called her a 'ditsy blond' cause she had been that way all her life.
Please do not let this go. Take that newspaper article about the woman there in Australia and info from this site when you go to the neurologist. I know in Australia they have had problems with the older generation with mercury poisoning from amalgam fillings which can cause similar problems, but I don't know about people your age.
Whatever, do not give up until you get a diagnosis. You definitely have your work cut out for you but we are here to support and give you the encouragement to go on.
I cannot believe that medical personnel would still be using the argument "too young" to eliminate the diagnosis of AZ or FTD, after all the recent publicity about Early Onset. Fight this!
Conclusion: Individuals currently characterized as having MCI progress steadily to greater stages of dementia severity at rates dependent on the level of cognitive impairment at entry and they almost always have the neuropathologic features of AD. We conclude that MCI generally represents early-stage AD.
Most interesting to me is: "For example, scores in the normal range for age on the Mini-Mental State Examination (MMSE) are assumed to indicate preserved general cognitive abilities, although brief cognitive tests such as the MMSE often are insensitive to early-stage dementia. The perceptions of a knowledgeable informant regarding an individual’s cognitive abilities in everyday functioning, on the other hand, have been shown to be sensitive and reliable for early dementia detection. Overdependence on cognitive test performance and underutilization of knowledgeable informants may result in failure to detect very mild dementia in many individuals who nominally meet MCI criteria. Progression of patients with MCI to “diagnosable AD” may be confounded because the threshold for dementia diagnosis may vary considerably among clinicians and may require long observation periods, since the mildest forms of AD are marked by slow rates of cognitive decline."
In other words - WE KNOW OUR SPOUSES and doctors should trust us. Yet so many still want to ignore us, and say "depression," "stress" - go take a yoga class...
To summarise, His profile is that of relatively preserved reasoning, good attention, possibly mildly lowered cognitive speed, poor memory function and executive dysfunction, particularly obvious in everyday functioning. This picture is not characteristic of any neuropsychological syndrome. In particular:
1. Dementia of the Alzheimer’s type usually presents with marked memory loss, but this is usually not accompanied by an executive dysfunction and generally some visuo-spatial difficulty is evident. Thus, Mr Allen’s superior visuo-spatial function and the presence of executive dysfunction make this diagnosis unlikely.
2. Frontotemporal Dementia is characterised by executive dysfunction and pronounced personality change, and a lot of Mr Allen’s symptoms fit this profile, including a lack of awareness of symptoms, a lack of concern, and blunting of emotions. However, this type of dementia does not usually present with pronounced memory loss, and memory performance tends to improve in recognition tasks.
3. Subcortical dementia is very unlikely taking into account an excellent working memory, and reasonable speed of processing
4. There is no evidence of obtundation, confusion, attentional problems or altered mental state. I am not sure whether this excludes a systemic/metabolic problem, and defer it to a neurologists’expertise.
5. Multifocal process would be most likely, especially taking into account the loss of pain sensation. I note that in the neuropsychological profile there seem to be two areas of progressive deficit: executive and memory (with some possibility of an emerging language dysfunction being raised by the history). There is no evidence of multiple, mild inefficiencies in cognition, which are often found in multifocal disorders such as MS.
She also said that it would be erroneous to focus only on the numbness and ignore the memory/executive function issues as it is entirely possible they are not related.
He is now seeing a neurologist on May 14th, I made many many phone calls and almost pleaded, in the end a secretary of a neuro (recommended to me by a friend who works in the disability sector) told me the neuro could make an urgent appointment if, on reading the referral, he deemed it urgent. So we went to a completely incompetent doctor who listened to nothing and decided he had transient global amnesia grr The neuro let me fax through his history as the referral was so shoddy and based on that the neuro rang a colleague who is better suited to his particular problems and he agreed to see us urgently, 2 weeks wait is pretty good
Joang- thank you for the advice, I have printed a few things and placed them in his folder, ammunition if we need it!
Charlotte – One of my concerns is sometimes he is quite with it and would score highly on the MMSE but in daily life it would be lower, again his visual spatial skills seem unaffected. The neuropsychologist said that because he displays personality changes that he would not fit MCI.
“Overdependence on cognitive test performance and underutilization of knowledgeable informants may result in failure to detect very mild dementia in many individuals who nominally meet MCI criteria”
I found that study and it does make a lot of sense and fits in with something the neuropsych said
“The history given by his wife and the concerns of his employer suggest that his executive function is impaired. This is not pronounced on testing apart from his performance on a task requiring him to change his behaviour flexibly in response to environmental feedback. This is not surprising, as executive dysfunction in a high-functioning person can be relatively difficult to demonstrate on testing.”
In other words he is pretty good at winging it (maybe an aussie term, pretending) which might be fine for others but he doesn’t wing it at home, I get to see it all, well at the moment I feel like I am getting the dregs. I still don’t feel like I have a partner, my soul mate is missing. (just as an aside, did anyone find that when being intimate their partner seemed different, like it is the act that counts not the sharing love with a loved one.....does that make sense? I figured it is just an extension of the blunted emotions, he feels distant most of the time anyway so why should those moments, as few as they may be, be any different).
My parents have come from interstate, staying with some friends for a week and my father said he has noticed a few things when talking to him that would stand out even if he didn’t know what was going on.
Oops went on a side track, back to the testing issues, unless they have a baseline of abilities before displaying any impairment then even the MMSE is flawed when testing in the first stages.
I really don’t understand why people are expected to wait until the impairment is bad enough to reflect in the MMSE, which means in daily life terms wouldn’t they already have suffered financially, materially, emotionally etc Ok well I sort of understand but especially in younger people, their lives can be destroyed before a doctor even listens to them, without me my husband would lose his job, his marriage and most likely his sanity because he wouldn’t understand what was happening.
Obviously I would love it if it isn’t dementia, the neuropysch assumed I freaked out when reading similarities between my husband and dementia sufferers but as I said to her I just want to know what’s wrong, anything after that we will deal with, it is the not knowing and suffering in the meant time.
Thank you so much joang for providing a safe place, even if it turns out he does not have dementia it has been invaluable to speak to others/read of others who have/are living with the same issues, I do not feel alone when reading here.
Debbie - my husband started with just the memory loss. It was that way for the first two years. I believe back in 2003 he lost his job because he was breaking company rules but saw nothing wrong with it. Otherwise, he knew it was wrong but could not connect to it. Back in 1985 he was diagnosed with 'detached personality disorder' then after counseling declared healed. That may have been the first sign, I don't know.In one year he has gone from 26 on the MMSE to 22. In 2008 when first seeing a neuropsychologist the report said depression and sign of memory loss. Recommend follow-up with dementia clinic. At that point I knew it was AD. His spatial is still pretty good - he can draw the clock well, just putting the time on he has the problem. In the neuropsych testing it said 4th grade reading level and made a big deal of it. When he went in for the 2nd test I told the doctor that is nothing new - he has always been a poor reader. He also started out with the diagnosis aMCI. Which to my understanding is short term memory loss before any other symptoms are present or bad enough to progress to AD.
My point is, the doctor seems to think there is something else going on = maybe more than one thing. Try to relax and not stress yourself out until you get more testing. I am glad that you are getting in so soon - that is a big plus. Maybe, if possible without being too traumatic, have your oldest write down his/her observations to take with you. Have your father also write down what he observed. You never know - maybe one of their observations can add another piece to the puzzle.
Keep in touch. we had another person from Australia just join us - maybe you two can compare notes of your experiences in Australian medical care. Plus be a support system to each other where you share the same culture. By the way, winging it must be universal because we use that too along with faking.
I can totally relate to your frustration. When you KNOW in your heart something is not right, but cannot get answers. I'm at the same point. I just want a diagnosis. Maybe it's so we can take the next step - "well now that we know what it is - let's fix it." When I think about it, that's rather silly anyway. Because if it is what I think it is, I know we won't be able to fix it. I guess I'm still hoping it is Lyme disease or some rare treatable disorder that I have not stumbled across in my research.
This ordeal has certainly taught me about patience, and understanding when I cannot control the situation. I imagine you are learning a great deal about that, too. I read a verse in a Psalm yesterday that helped me - "Be still and know that I am God" Psalms 46:10. It helped me let go of this unrelenting desire to fix this, and fix it now. I have to trust that however this turns out, it will develop on its own schedule, and I cannot control the timing or anything else about it.
BTW, My DH who insists nothing is wrong with him, has spent the last 5 days picking apart the items on the list I gave the doctor, trying to explain them away. We have made some progress. I think he has at least accepted that this is not about me being unhappy with him for the things he's doing, it's about me loving him and being concerned for him. One step at a time I guess.
He still insists there is nothing wrong, yet last night upon arriving at the gym with my son, he walked out of the car and walked towards the gym, leaving the car engine running. My son yelled after him, "Dad aren't you forgetting something?" Perfectly normal - right!
The gym is the only place I let my DH drive my son because it is only a quarter mile from the house. Now I'm second guessing that. Maybe I'll suggest that in good weather, they should walk and save themselves the treadmill warm-up upon arrival....
Let us know how it goes at the neurologist on the 14th. And remember, even if you do not get answers on that day, the answers will come in time.
OK, there is one more thing you can do that hasn't been done. And that is true for Debbie too.
My husband was diagnosed in a totally unique way as far as I can tell. His first step wasn't a neurologist specializing in dementia. His first step was a speech therapist specializing in stroke victims. One reason is that if what he had could have been fixed, the world-class rehabilitation hospital she worked for was the place he would have needed to go. And if he couldn't have been fixed, it is IMPOSSIBLE to fool someone who teaches stroke victims how to regain their lives. As I've gotten to know my husband's family doctor better, I think this might be how he gets all of his dementia patients diagnosed. Especially if he thinks there might have been strokes at some point.
If they are saying he doesn't have one of the dementias, then he probably has had TIAs and he needs to go in for a speech and physical therapists' assessment. Most of the time a doctor can't find the TIAs with MRI or CAT scans, but the therapists can see the damage they have caused.
You will end up with one of two things. Either it isn't a dementia and he can relearn what he has lost. OR, it is a dementia and you can't fool someone who sees you for several hours a week for several months.
I had no problems getting a diagnosis. The neurologist did order a CAT scan (no MRI because of a pacemaker) and some blood tests and did a couple of hours of mini-mental type tests, but that was all. The therapist had written extensive reports to the family doctor and a special report just for the neurologist once we had an appointment. That, plus reports from the family doctor and the cardiologist (remember that pacemaker) was all the neurologist needed.
My DH was diagnosed after having an MRI. It showed he had had a stroke (which we didn't know) and several mini strokes. I am guessing there are no signs to the mini ones...he didn't even show any signs with the stroke!