heard from my Psych /Neuro tester last eve.
we had a good conversation ,he said the reason he took so long in finishing the results was that My results didn't completely match the symptoms [go figure}.
the writen tests were all quite good with my lowest results being only in the low 50% of age related scores ,all others were high.
The way I presented ie dementia patient was not in line with the expected results .
none of the phycical problems have manifested themselves .
so What explains the MRI results???
severe small vessel desease,
Picks has been suggested by an apparent concenus,but maybe not !
My lack of inhibitions and behavior patterns, go in that direction.
so
as many questions raised as answered now I await the follow up with my neuro and Family dr.
now as to driving he said he didn't know about that but there are ways to determine that so I plan to pursue that line.
In the mean time we wait some more!!!!!

Sven, I'm so bummed that you're being misunderstood!!

Here's something that a surprising number of professional evaluators don't know: A person with a when-healthy higher IQ, say 130 and up, will not look like a person who's IQ was normal while still healthy.

Imagine that two persons get Alzheimer's, and in the first few years, each loses the equivalent of 30 IQ points. The average IQ person would then appear impaired, at an IQ of about 70.

The 130 IQ person won't seem to be impaired in intelligence, as his loss has made him like the average person's IQ.

Because of my sometimes extreme mood challenges, my docs are considering that I might have a form of Frontal lobe dementia as a primary diagnosis. I think the only thing important to know is, Frontal lobe dementia shouldn't be treated with Aricept-class drugs, so I haven't been prescribed those. I am on Namenda, with positive results.

Just hang in there Sven, and don't let a diagnosis get to you. A diagnosis is just putting a label to what you're already living with.

quote:

Caveat!!! The foregoing is long, it is technical, it is given to better understand the confusion of Sven on his dubious findings. IF IT IS TOO LONG JUST SKIP OVER IT. Alan, am I right as I characterize the Neuro Psych?

Diagnosis of Alzheimer’s or related disease can be so exasperating!!!

This is true because medical practice has become so proficient at sophisticated testing. Doctors in the US are performing the best plumbing practices in the world. With a variety of testing methods they pinpoint cause to whatever a patient’s history direct them and the measurement by test alone tells them. This is so because the tests used are so very good leaping to conclusion in what seems a nano second in a dimension where our humanly limited minds cannot go.

So accustomed we have become we get frustrated when this proficient medical practice cannot do what we have come to expect it to do.

The brain damage which can produce the many different kinds of dementia can be so discrete there is no test able to measure or even find it. The only test in such conditions that provides any help is the Neuro Psychometric.

It seems able to do this because it takes behavioral findings of the patients’ ability at the time, breaks that into categories and subcategories and compares these results to the general population who have left previous test results to work with.

Its reliability is predicated on its ability to show the result of brain damage before there is any way to measure it by any other test.

It is not perfect nor is it anywhere near as objective as any other test. When results of it are compiled, coupled with a professional review of the raw (rough?) data used in the testing process from which the examiner calculates and/or deduces each categorized result, then applies that to the universe of other test result calculations, from which the examiner formulates a finding on all of the material gathered and gives his/her subjective opinion on what they disclose.

This is a pretty good diagnosis but is not foolproof. There is enough opinion of the examiner involved that another professional trained in interpreting material in its entirety can draw a different conclusion. This offered us when I wore the hat of a cross-examiner a shot at pocking holes in it. Nonetheless in the courtroom I consider it a formidable diagnostic tool.

The plumbing side of medicine will not completely serve us. We still need clinicians capable of practicing the art form of medicine. This calls on the clinician’s ability by training, experience, knowledge and intuitive intellect to wade through the crap and reduce it all down to an informed opinion.

With this the clinician can avoid the ambiguity that ranges from “I don’t know” to “It could be this or that” or “We need more tests.”

The neurologist in Minneapolis with whom I fist consulted had the balls to diagnose on history without the support of testing short of a drivers simulation test I flunked He said “I could work around it more but if you want a diagnosis now, I can give it!” Saying yes I got it!

Three years later I switched over to this guys partner who specializes in AD not in stroke as my first guy did.

I saw him to prognosticate on the opinion of the examiner who administered a second Neuro Psych three years after the first.

In the second Neuro Psych the examiner said I did not have AD because I did not have a sufficiently bad score on the memory part to justify such a diagnosis. He went on to say he couldn’t say what it was.

The findings on which he based this opinion were a little progressed but substantially the same as the findings on which the first examiner formulated an opinion.

The first examiner said I did not have sufficient finding of memory loss therefore I did not fit normal AD. She went on saying findings did not suggest vascular dementia nor did they lead one to the frontal lobe dementia classification. She stated she could rule those out based on findings and history.

This took her back to AD which she then said she is allowed to make a finding of atypical AD.

My Neurologist reviewed it and concurred with the opinion.

My second Neuro Psych opinion given by a Neuro Psychologist in the Abbot System was dismissed by the second Neurologist of the Abbot System. He said the first examiner hit it on the money and he saw no reason to change the diagnosis.

He told my you have AD, different, but nonetheless real and not something that will go away.

He went on to opine how so many of the clinicians in this field are afraid to move a way from the safety certainty given them by a test result. They are afraid to rely on their own expertise. He also said we are impeded by the desire to classify AD too finely as recognize its basic generality. It is grouping of similar symptoms which produce a similar result, following similar paths that produce but one result, eventual loss of cognitive acuity and finally death.

Sven,

Thinking of you. I know it's difficult. Hang in there!

Mike, good descriptions. That's also more than a lot of MDs know, that aren't specialists related to dementia.

I think it's a matter of most doctors being trained so intently to "think horses, not zebras," that they fail to see all us zebras.

I wish:

• There was a way to influence Doctors & Health care professionals to recognize Alzheimer's, diagnose it and give the opportunity to those affected to deal positively with it.

• There was a way all those folks who raise gargantuan funds for finding the cure to direct more effort and fund raising to find adequate care.

• As though we don't matter, the support infrastructure pays little more attention than periodically patronizing us as they invite our participation than then turn a deaf ear to our response.

• To curb the cost to caring for us with this disease which is confiscatory. With the high return on investment the fat cats continue raking it in on their investments backed with government incentives into building more and lager homogenized holding pens for us.

• Particularly in the earlier stages we have the potential to stay as we are with out having to answer to the cattle call for the institution. We need a greater concentration on serving this potential to keep us out of downward spiral to oblivion if for no other reason to save the rest of society the cost of care.

• It seems the professionals dealing with us wear blinders. They are called "We know it better; It will be done our way or no way!" and go on to disregard any input unless you are willing to raise or walk for money. That is the place to which we are condescended with no attempt to make better use of us.

People with dementia need the help that is disingenuously overlooked by those who are supposed to help.

The mantra of care: Get them out of sight, put them away, hope they croak soon!

quote:

Originally posted by Mike Donohue:
I wish:

• As though we don't matter, the support infrastructure pays little more attention than periodically patronizing us as they invite our participation than then turn a deaf ear to our response.

• Particularly in the earlier stages we have the potential to stay as we are with out having to answer to the cattle call for the institution. We need a greater concentration on serving this potential to keep us out of downward spiral to oblivion if for no other reason to save the rest of society the cost of care.

• It seems the professionals dealing with us wear blinders. They are called "We know it better; It will be done our way or no way!" and go on to disregard any input unless you are willing to raise or walk for money. That is the place to which we are condescended with no attempt to make better use of us.

People with dementia need the help that is disingenuously overlooked by those who are supposed to help.

The mantra of care: Get them out of sight, put them away, hope they croak soon!

............."I wish"
I'm loving it, the way you express our feelings, I wish that I was able to write like you! I'm only 60 and until about 2 years ago thought that I had a future. Now I know that the end has came to my career, ability to provide for my family and all my dreams are dashed. It is time to redifine my purpose in life and that means hanging on to every word from these people that are getting rich off me.

quote:

As though we don't matter, the support infrastructure pays little more attention than periodically patronizing us as they invite our participation than then turn a deaf ear to our response.

Mike, are you sure you're allowed to think, much less say, things like that?

C'mon, people who work in the field have to occasionally be told how wonderful they are. Regardless of whether they actually contribute something we need.

And c'mon yet again, when the workers throw themselves a party, they need to parade one or more of us during the program, and say that the party is about us not them.

The workers struggle so hard for us, Mike! Of course, the people answering the phone are volunteers, and the group leaders are volunteers, and the marchers are volunteers . . . heck, the people watching these forums are volunteers. What are all those staff people doing, when all I meet are volunteers? Oh, wait . . . I'm not supposed to wonder that, am I?

Still, an answer would be nice.

Update:
My wife Lisa told me yesterday that the Dr had called her also ?
Is ok except he didn't say the same things to her as to me !
He did say all of the things he said to me but he said some things that he left ouit in talking to me.
like: he does believe I have FTD .
She should take complete control of all money.
Power of atorney.
Contact Police about my possible actions.
Hmmmmmmmm.
Somethings afoot Dr. Watson!!!!
Jekyel and Hyde are about to assault society,to arms to arms .
so sad.
The thing that I am missing is a prognosis ,while it seems that there is some foregone conclusion as to MY future,no one has yet told me!!!!.
So everybody watch the news for ... Naked Hoosier runs down road n the country mastrubating... yelling F--k you all.
You know if you aRE GOING TO DO SOMTHING BIG IT MIGHT AS WELL BE GOOD FOR A LAUGH????.
angry a little bit but I'll get over it,perhaps,then again maybe not.
Should I?
Me and Jack are buddies and he lets me say that which I might not say ...but those thoughts do rest inside me
Forgive me God.
I know not what I do
not correct I do know just can't control it
Years ago I went to a psycic as a lark . early 20's she said I was going to end up in jail....
Wow.
Did she really see this ????
So if she did then are we predestined to live a certain life ???
So is this just a drunken rant ? if so then take it for what it mis worth.
I cannot tell you how much it means to me to be able to have people to say these things to without fear.
Thanks just needed those shoulders today ,better tomorow i hope ..but not holding my breath

I really think that today If i could I woulds CRY!!!!!

Thanx for calling Sven! Talking with you was so good for me. I hope that you felt the same way and you can find some volunteer work to allow you to keep some self worth. It is a rough rowe to hoe but we will make it!
I'll talk with Alan of Co.

Sven, I'm so sorry things are so rough for you right now. The waiting and wondering is so painful...

I would like to put a bit of a different light on what your wife heard from the doctor.

Many doctors use the term "FTD" as synonymous with Picks. So if the doctor told you there is a consensus that you probably have Picks, that is the same thing as telling your wife you are likely to have FTD. You are young, you are still very early stage, it's very hard for them to be absolutely sure what is going on. In the early stages, several different dementias can produce the same symptoms and signs. You may receive a more solid diagnosis of FTD/Picks during the follow-up, but have the diagnosis changed in a few years if your problem, whatever it may be, progresses in an unexpected way.

One of the very first abilities that most dementia patients lose is the ability to handle finances. That can often happen before short-term memory loss is evident, even in AD. That sure happened with my husband, long before I realized there was anything seriously wrong with him, and that's one of the reasons my company went under. It is just plain common sense to advise a spouse to take over the finances when her beloved develops symptoms that may be consistent with a dementia.

Believe you me, the spouse doesn't like hearing that any more than the patient does.

It is particularly important for your wife to start handling your finances right away if she hasn't been in the habit of doing so. She will be scared, and there will be a lot she won't understand -- she won't even know what questions to ask -- and she needs to learn the ropes while you are still able to help her.

We always advise newbie caregivers to get Powers of Attorney in place right away, if the loved one doesn't already have one. It is important to do it now, because now you are still able to understand, and to voice your own preferences, and sign your own legal papers. This is for you, to make sure things are done the way you want them to be one.

Contacting the police (and the fire department) is a very, very good idea. That is not an insult, it is not a reflection on you, it isn't a prediction that you're going to do something dreadful. If there is any sort of trouble -- say, a burglary or a fire or a traffic accident -- and you become stressed, you may not be able to react as quickly as you normally would, or be able to understand what others are telling you. If the authorities know that you are in the early stages of dementia, then they will understand what's going on, and can help you. Again, this is for you, to make sure you will be OK in the event of an emergency. And this is something that we always advise newbie caregivers for loved ones with any sort of dementia.

The doctor's conversation with your wife was not a conspiracy, and it wasn't acting behind your back. She told you about it, after all. He spoke with her to be sure she got the message ... if he'd told only you, you might have forgotten, or misunderstood, what he said. And these things are important for your protection, and for hers.

Sven, there is no way to give you a prognosis. I know how badly you want to know what will happen, but you can't. Somehow, you're going to have to learn to take things one day at a time. And to enjoy today, rather than worry about tomorrow.

We caregivers always tell each other, "When you've seen one patient with AD, you've seen one patient with AD." Meaning ... no two AD patients are alike. The disease progresses in very different ways for different people. They develop different symptoms, of differing degrees of severity, in a different order. Some may develop every symptom in the book, some never develop many of the possible symptoms. The same thing is true for FTD/Picks, and for vascular dementia, and for Lewy body dementia. The only thing that they can say for sure, is that a true dementia is terminal. But even so, they can't tell the dementia patient how quickly things will go. Some AD patients live for 20 years, or even longer, after a diagnosis. I don't know the maximum length of time FTD patients have been known to live after diagnosis, but it is somewhere in the same neighborhood. But with both diseases, the progression can also be much quicker. There is no way to predict what will happen to any given individual.

Sven, I want to give you an example of why having your wife register you with the police and fire departments as a dementia patient is an excellent recommendation.

Back in 2003, we had a dreadful wildfire in San Diego, which destroyed thousands of homes. My husband and I were glued to the TV, watching the maps, as the story unfolded. One fire front was approaching our house from the north, and another was approaching from the west. It appeared that both fronts were still 4-5 miles away, when I glanced past the TV and out of the back window saw ... fire! A wall of towering flames, less than a quarter mile away. The news had reported the fires burning homes, but failed to mention that they were racing across a large regional park near where we live.

We ran out into the back yard to get a better look, and that's when we heard the loudspeakers, mounted on police cars driving slowly through the neighborhood, telling everyone to evacuate right away.

Well, we raced back inside and grabbed the cats, and food and litter for them, clothes and bedding for ourselves, meds, etc, stuffing everything frantically into the car. After a while, I realized I was the only person doing that ... my husband was nowhere to be seen. He had spent the entire time I was packing up the car in the bathroom, carefully combing his hair. I had trouble dragging him out to the car -- his hair still wasn't quite the way he wanted it -- and it was obvious he couldn't drive, and he had no idea of where we should go, or what route we should take to get away from the fire. (We live in a canyon area, so the roads are very windy and many of them dead-end.)

If I hadn't been there and the firefighters hadn't managed to stop the flames where they did, he would have died.

And this was two years before he was diagnosed with AD! This was one of the very earliest signs that there was something wrong with him. If I had known he had dementia, and had registered him, the police would have made sure he was safely out of the house and where someone would take care of him until the danger was past.

Stress can really destroy even a very early stage dementia patient's ability to understand and cope with emergencies.

quote:

Originally posted by JAB:

Stress can really destroy even a very early stage dementia patient's ability to understand and cope with emergencies.

Good points and they are well taken. As far as emergencies go.... I'm aways ready to jump out the window. Just point the SOB out and I'll jump!

Oh how this community and allies in arms against this gawd awful disease, have grown near and dear to my heart.

Filled with vulnerabilty, exposure (no pun intended there Sven ), insight, advice, education, compassionate caring people, and yes, even humor.

Don't know what I'd do without y'all right now.

Sven, we all get to the point where we just have to let it all hang out and even cry.

We all have big shoulders to lean on and share, we'll all take turns.

Glad you're here.

Sven,

You have been given some good explanations and advice. I hope you will act on them!

There's nothing wrong with crying. It releases a lot of pent up emotion! Go ahead and cry, you'll probably feel better after you do!

We're all here for you, Sven!

Please, keep talking or posting!

quote:

I'll talk with Alan of Co.

Oh good grief, what have I done now??? Was my sarcasm too funny, re: an organization taking in money in our name, but using volunteers not paid staff, blah blah blah? Whatever, I'll mention it to a doctor and play "guess the lobe" that's agitating.

Sven, there have been times in my life that I controlled some strong emotions with alcohol. It's alright for very short-term coping, I think. But excess alcohol kills brain cells, and we're already losing those too fast. Don't get me wrong, I totally respect your right to make your own decisions about that.

And Sven, I used to be involved in the psychic scene. The best quote I know is from John Connor: "The future is not set. There is no fate, but what we make."

That psychic was most likely making a guess, based on personality characteristics you had at the time.

As for different forms of FTD, my neurologist thinks that the FTD shoe fits me. Especially last year, I did things that had I been seen by a police officer, I would have been arrested and jailed pending trial, if not shot on site. That ocean of rage is restrained by my medicine, but it isn't gone. Your wife can inform the police of your condition, which might make the difference between going to jail or to a psychiatric unit.

Sven, I don't think any of my doctors have communicated in secret with my wife, but who knows? There have been times when docs talked to her like I wasn't there, which really irritated me.

Thanks all Today is another day and Jack has left the building[along with Elvis}.
Pity party over .
Plan to research FTD and Picks today,
alan I talk with t tom on the phone now and then and I expressed the wish that we could speak thats all .
So on with today
I am here and plan to stay,but who knows
love you all

Ok guys hang with me awhile here
This is a period I think i have to go through.
Talked to ex wife ..31 years ago ..mother of our sons
told her about the situation ..longest conversation we have had since divorce..
I also told her I still ...loved her ????
and alwaays have ...am I bad...
or what
bear with me gotta talk to somebody.. can't talkto present wife about it ..go, figure...
thing is she said she still loved me too.;....
I know this is not ask abby but next thingt to it
I think it is that I love my sons so much that I can't let loose of her????
Bear with me guys these next few days [I hope] are going to be rough ..lots of retrospect ..
Have you guys been there???
I must admit Jack has left bthe building ,but Christian Bros came in ..Brandy is good!!!
Iknow the meds don't mix well but bear with me guys
I'll survive ..I always have
And if I didn't I am not sure it would be such a loss ..oops I didn't say that did I ?
X that out ..
I mean nbobody else has ever had those thoughts have they????
OK rant done for now
standby for the rest of the story

Alan of Col.
Please look for a note to you on the PV cycle 1 forum.

Sven,

Is this a new day?? I do hope you are feeling better. The research will do you good!

As for your EX, well, when you share having children I think that bond is never totally broken; however, please speak with Lisa about your feelings. She loves you and wants to help. She probably scared too. Don't shut her out!!

I've had many thoughts about what you are talking about!

Hang in there!

Sven!!!

Get Jack out, send Christian brother away, get dry, let your head come together, then try to figure it out.

There is a way to do this and you know it. Do it. Re-join!

This is the advice of one who has been in your shoes. You are fooling only yourself!!!

quote:

Alan of Col.
Please look for a note to you on the PV cycle 1 forum.

Not today, Tom and Sven. Tomorrow, Tuesday, is my SSDI hearing, judge in charge, and I'm not having . . . well, I'm having the day I should have known to expect. I'm not calling anybody for the immediate future. Sorry for my weakness, but this is my best, just not enough.

Sven, I'd love to talk, but not for a few days, ok? I've carved out the next couple days for being out of it, just trying to be realistic.

Boy Do i understand that!!!!

Sven I looked for you in the chat room tonight.

You already know what you have Sven. The doctor is trying to find a label for it.

Jack and the brothers may be tempting but they are NOT your friends! In fact, they are THIEVES! Kick them out the door!

Come back to the chat room, Sven!

Iris L.