RSS Feed Print
I Think I Figured It Out
BillBRNC
Posted: Tuesday, April 12, 2016 9:15 AM
Joined: 12/2/2015
Posts: 1018


After my evaluation at the memory place, they set me up for what they called a glucose Pet Scan for this coming Friday. They also put me in the pile to be reviewed for inclusion in the IDEAs Pet Scan study that looks for the tangles and placks. The doc explained the difference, but I left with head spinning. Also got Exelon med prescription, and she told me I had deficits in multiple areas. No question she believes I have active early to early moderate dementia, but she not sure if it is all vascular, all Alz, or mixed of both. Since coming home, I've tried to figure out what the difference is between the two type of Pet Scans, and what I will learn from the Friday one (the doc said she would let me know within a day or two), then have me back. This all comes about because I also have heart failure and my memory stuff started within a year or so of my diagnosis of heart failure 6 years ago, but my heart failure expert has said no way the heart failure is responsible for the memory stuff, but he is the one who called my local doc to make me get evaluated for the memory issues. But my mom also had Alz many years ago.

I finally found a NIH article that explains in almost English the difference between the two types of scans. I still can't put it into good words, but the glucose Pet scan will confirm whether the neuro psych results are accurate, and confirm that I have dementia. It also can show whether MIC or even totally non-symptom problem will become full dementia down the road, plus you use it to track or stage the level of dementia or Alz. It can't tell 100% if you have Alz, but it can tell to about 90% or better if you have Alz, but it can tell 100% if you have dementia or dementia like problem, and it can tell almost 100% if it is vascular. The newer Pet Scan only tells you if you have Alz brain changes, but it can't tell you if you are symptomatic yet or when you will be come so, or if you will become so. It tells you that you have the tangles and placks, and I guess some idea on how extensive it is. Both scans together can tell you whether you have actual active dementia from Alz versus vascular versus mixed to about 100%.

Bottom line for me is that the Friday scan will tell me what I really want to know, which is whether I have real dementia due to something real going wrong in my brain. Whether it is vascular or Alz isn't overly important to my planning purposes. If it tells me I'm a nut case without any brain changes, then I'll have to figure out how to deal with that when time comes. I am one of those folks who just needs to see objective data in order to totally believe something, and the symptoms and neuro testing just doesn't do it all the way for me. So there, that's is what I know about the two types of scans. Oh, and as I understand, if the scan on Friday shows nothing, then I qualify solidly for the IDEAs pet scan study because the neuro psych tests say I have dementia, and the absence of finding on the glucose scan would say that the dementia cause is not known for certain. I don't know if I qualify if the glucose scan shows that I have dementia from either source. That part I can't figure out.

Oh, and what really gets me is how can I write all this neat stuff if there is something rotten in my head. That part is really confusing to me.

 

 


Mimi S.
Posted: Tuesday, April 12, 2016 9:39 AM
Joined: 11/29/2011
Posts: 7027


And to confuse you further, Bill, who knows if the glucose PET scan is the same thing as the Pittsburg compound scan?  

I have seen sequential images of that scan that definitely show the expansion of the dementia. I have heard of if mostly associated with AD.

That several hours long  neuro is the that that most helps with the differential diagnosis.

And yes, verbal explanations to us are problematic. We only retain a certain %. I think it's a good idea if you go alone to bring a recorder so that you can replay and replay back what the doctor said.

Was your wife with you?  What is her take?

Bill, on another thread you spoke of what you are not able to do to be an Advocate for early stage groups.  You write very well. How about a letter to the Editor in your local paper?

We will be waiting for your report.


The_Sun_Still_Rises
Posted: Tuesday, April 12, 2016 10:05 AM
Joined: 7/24/2015
Posts: 3020


I like be have hard data as well...so I real understand that part. 

It is no that some thing is rotten your brain...it is just the brain death process...but is still you brain.  Just like gray hair part aging, still you hair...still good.  If that makes sense. 

You will likely be as surprised, as me, at what things stay intact as this progresses. 

Iam glad you are getting you answers.  How you wife taking it?  I know she was waiting for some those answers from others. 

<3


jfkoc
Posted: Tuesday, April 12, 2016 10:13 AM
Joined: 12/4/2011
Posts: 21244


Thanks for sharing your testing...Your experience is going to be helpful  to all of us.
BillBRNC
Posted: Tuesday, April 12, 2016 11:47 AM
Joined: 12/2/2015
Posts: 1018


Sun, I actually have white hair and a white beard, but it used to grey some years back. When my wife and I were at a play Saturday night for her birthday, an elderly lady walked up and said to me that I looked like Kenny Rogers. Personally, I don't think so, but that should tell you the color of my hair and beard. Heck, I thought Kenny Rogers had died until I saw him on a commercial not to long ago. Nice to see he is still this side of the grass.
Iris L.
Posted: Tuesday, April 12, 2016 7:38 PM
Joined: 12/15/2011
Posts: 18509


Bill, why do you refer to yourself as a nut case?  You are not a nut case.


Iris L.


a_step@a_time
Posted: Wednesday, April 13, 2016 3:25 AM
Joined: 11/21/2015
Posts: 237


BBill, thanks for sharing and good luck! 

SSun, I agree with you.  Aging/dying.. may be even auto immune like disorder.

Personally I wish the synthroid or natural thyroid treatment would work for my brain.


BillBRNC
Posted: Wednesday, April 13, 2016 7:47 AM
Joined: 12/2/2015
Posts: 1018


Iris L. wrote:

Bill, why do you refer to yourself as a nut case?  You are not a nut case.


Iris L.

 Iris, I hope I'm not a nut case. Ever since all this started 6 or 7 years ago, I've wondered if the symptoms were real. At first, they were very tiny symptoms, only barely noticeable to me. I just figured it was my imagination or just getting older or being bored or pressed at work or whatever. As the problems got a little bit more bothersome, I still thought they were nothing but either in my mind or just some reaction to being busy or something. Then I got heart failure and they told me these symptoms might be minor brain damage from reduced blood flow to my brain. My heart function had dropped to 10%, so that was easy to understand and believe, and I truly believed it because I didn't want the problems to be due to anything else as my mom had had Alz many years before. What with heart transplant list and everyone telling me the end was near, I spent time getting my life in order. Then years passed, my heart improved a little and then I really noticed my cognitive thing had been getting a lot worse and interfering with my life. Then more and more, then my cardio says my heart isn't the issue, then the focus moved to Alz or some other dementia. Truthfully, I just don't trust myself anymore to know what is real anymore. All this weird junk has been going on and I just want someone who knows to tell me what is happening. My first opinion was from my GP, and he said something was definitely wrong, but he didn't want to commit, but send me out for specialist. Then I wait months for the second opinion, and frankly all the testing and evaluation just seemed very unsolid to me. I like things like x-rays, echo cardiograms, cardiac caths, and solid objective stuff that everyone agrees is real. I know the neuro testing is real, same for the evaluation, but I still question whether I've just become totally screwed up in the head. On Friday, the pet scan will tell me if there is objective stuff in my brain that shows the testing and evaluation are real, that something that I have no control over is doing all of this to me. If the pet scan shows nothing unusual, then I'm back to wondering if I'm somehow messed up mentally as opposed to something physically wrong. I've never had mental stuff to my knowledge, but I realize that lots of people do and don't realize it. All this long way of answering your comment. I just want and truly need to know that all this Alz and dementia is real, or whether it is just something mental gone wrong. Is this crazy to think this way, I don't know, but I just am that sort of person who deals in solid things I can see and touch. That is what I mean about wondering if I'm a nut case. I'm a realist, so I'll deal with whatever is going on, but I need to know what is going on. This is why the pet scan is such a huge deal to me. Short story with long answer.



Mimi S.
Posted: Wednesday, April 13, 2016 8:35 AM
Joined: 11/29/2011
Posts: 7027


Bill, A short answer. Things I once knew about mental illnesses are pretty much gone.

I don't recall any mental illness where loss of cognition is the primary symptom. It's usually behavior.


Iris L.
Posted: Wednesday, April 13, 2016 1:31 PM
Joined: 12/15/2011
Posts: 18509


Bill, I get that you want to KNOW.  It's vital, because nothing seems to make sense with the beliefs we formerly had.  But regardless of what is wrong, I am questioning the use of the term, nut case.  


We struggle so much with stigma and how we think of ourselves.  We are people with an illness.  Whatever I have, I am not a nut case.  My friends tried to push this on me when I began to tell them I was having trouble with my memory.  They didn't say nut case, they said I was having a pity party.  Neither was true.  I was just a person with strange things happening to me, and trying to figure them out.  


We are not nut cases.  Nor are we brain dead, or empty vessels.  If we don't stand up for ourselves, who will?


Iris L.




BillBRNC
Posted: Wednesday, April 13, 2016 3:50 PM
Joined: 12/2/2015
Posts: 1018


Iris, first to say, I agree with everything you said about the nut case thing. But I wasn't using it in that manner. What I meant was that if I don't have dementia or Alz or some brain disease, then all this stuff must be in my imagination...hence nut case. It probably would be bad to use even in that context, as you are right that a person isn't a nut case if they have a health problem of any kind.

I just want to make sure I haven't somehow gone off the deep end and somehow made all this up in my mind. I have no reason to think that I've done that, but I just can't understand how I can seem more or less ok one day and then completely messes up the next day. I have slowly progressed for years now, but I still have periods where it seems that my problems drop by 50% for a day or so, maybe a few days. Truth be known, they usually drop only for a few hours most of the time.

I take a bunch of pill twice a day, most of them are heart meds, but now I have the Exelon tossed into the mix. I just went to take all my night meds and I saw that I had taken all of my morning meds except for the Exelon, which was still in the box for this morning. So I took all my night meds, but left the Exelon to take right before bed, because I just now took the morning one. My wife and I just had a spat over all of this, because I'm convinced she put that she backfilled the pills, because she does that so I always have a lot of days full of pills in the box. But the problem is the only way I know what day it is comes when I take my pills, because I take the pills from the box next to the empty box for the prior day. If all the boxes are full, then I don't know where I am in the process. I know my wife didn't do it, because the Exelon was the only pill out of about 8 in the morning slot, so I must have taken everything except the Exelon. Now how and why would I have done that. I guess this is how I know I must have a real problems, as you just can't make this stuff up.

But I totally agree with you when you say that people should not brand us as crazy or anything of the sort. Thank you for making that excellent point. I don't know if I'm going to watch the PBS thing tonight, as I might get too depressed watching it, but I know my wife will. I won't get home from my music jam until about 9:30 anyway, so I guess I catch the end of it. I wonder how I will do with the music tonight, as it hasn't been going well recently, and I've been leaving early because I feel so out of place, but at least I'm still trying to go and stay.


Gig Harbor
Posted: Wednesday, April 13, 2016 4:53 PM
Joined: 3/10/2016
Posts: 1161


You are so articulate! It is hard to understand how each person can walk the dementia path so differently. It is like you wear a coat with many pockets each filled with one item. Each person gradually throws away items but in no set order so each person functions differently until close to the end. Some also walk faster than others and some have more patience than others. Each person on these sites seems to be different from everyone else. With a disease like ALS a much more predictable scenario exists. I guess that is why the experts on this site say to take one day at a time.
jfkoc
Posted: Wednesday, April 13, 2016 5:48 PM
Joined: 12/4/2011
Posts: 21244


Back-filling the box...I know exactly the problem it can cause. Please ask your dear wife, aka medicine dispenser, to get a second box to fill and to please keep it where you can never find it.
Iris L.
Posted: Wednesday, April 13, 2016 6:14 PM
Joined: 12/15/2011
Posts: 18509


BillBRNC wrote:

I just want to make sure I haven't somehow gone off the deep end and somehow made all this up in my mind.

 


I think I understand better now, Bill.  I think this is just how it goes.  Things are so unpredictable.  Things are unpredictable for me, even after seven years on medication.  But I do know that it is not my imagination.


As far as the medications go, the only way I know I have taken my meds is to see the empty box for that day in the pillbox.    It's like checking off a block on a calendar.  We need our cues.  It seems to be hard for other people to understand that.


Here's hoping you get answers from your PET scan in a few days.


Iris L.



 



llee08032
Posted: Wednesday, April 13, 2016 10:05 PM
Joined: 5/20/2014
Posts: 4408


Bill,

Nobody believes us when we first start experiencing cognitive difficulties! Under the circumstances it is natural that self-doubt kicks in and you wonder if perhaps you are making a mountain out of a molehill. There are friends and family members and even Dr's who are in disbelief. Then you try to keep track of all the things happening... the things you cannot remember and the things you can no longer do trying to make some half-assed sense out of it all. Only to lose track of it all or to be told nothing is wrong with you if you can keep track of it all in the first place. One day you can't do something like open a bottle of liquid soap and make the pump dispenser work after an hour of trying and couple days later you can figure it out in a couple of seconds. You find yourself forgetting what you forgot and that starts to feel normal. You start to wonder if others are having a hard time opening bottles, packages and just about everything? 

You tire of trying to convince others something is wrong with you and just try to go with the flow. Then you catch yourself trying to put the car in reverse before starting it and then driving past your turn for 2 miles. Not being able to figure out how to get back to the turn and how to make the turn from the opposite side of the road and you get angry and frustrated because they don't believe you. You feel scared of what you might do next or what the next conundrum will be. You feel scared because you're alone when nobody believes you and it's hard to believe yourself sometimes. 

Then comes the big DIAGNOSIS...and it's all real. You can trust you are not a fool imagining something is wrong with you! You were right all along even if it's the one time in your life when you would not mind being wrong. 

Still you break through the water and relief washes over you...now you know. For sure. It starts to make sense. Something that started feeling so baffling and so confusing now makes sense! And other than the fact that you have dementia there is nothing else wrong with you.


llee08032
Posted: Wednesday, April 13, 2016 10:09 PM
Joined: 5/20/2014
Posts: 4408


PS: You did figure it out!
Mimi S.
Posted: Wednesday, April 13, 2016 11:20 PM
Joined: 11/29/2011
Posts: 7027


But you know!!! And for many of us that was such a relief. We weren't imagining things.
a_step@a_time
Posted: Thursday, April 14, 2016 12:32 AM
Joined: 11/21/2015
Posts: 237


Bill, and everyone here, thanks for sharing!  Docs do have a way of making us FEEL crazy and making us feel isolated in our thinking... and here we all are, feeling the SAME as many others.  

I know I don't like being misled to think it is something else.... that can possibly be fixed or will self resolve.


BillBRNC
Posted: Thursday, April 14, 2016 7:57 AM
Joined: 12/2/2015
Posts: 1018


Holy smoke. We all do have so many things in common. Maybe not the same symptoms at the same time, but we do seem to share this strange sense of uncertainty about all that is going on. Gosh, llee, you must have been hiding in my mind and reading my thought. Seems like we are all in the same bus, just some in the front and others in the back. I wish we could all somehow write a book about all of this so the rest of the world would truly know and who knows maybe believe and do something to help us out. But it sure feels good to have a bunch of folks here who have already walked down the same path to help clear away some of the self doubts. But not to worry, I'm sure my self doubts will be back in a few seconds anyway. They never seem to be very far away. Hey, last night there were 4 guys around 60 from Scotland at our Wednesday night music jam at a local restaurant bar. They had come over to spend a week looking for places to play Appalachian mountain music. We had a large crowd of listeners there, who seemed to have fun. As usual lately, I had to leave after a couple hours because I was starting to feel like an alien from outer space and couldn't get focused what with all the noise and confusion, but it was still fun. I hope I can keep going for a good long time. I've already given up my other two weekly jams, so I am determined to try to hang with this one for as long as possible. It won't be long before I have no choice but to tell a couple of my buddies what my real problem is so they can help me stick around a little longer. I really don't look forward to that part.
Iris L.
Posted: Thursday, April 14, 2016 1:39 PM
Joined: 12/15/2011
Posts: 18509


Bill, it's great that you are musical and can enjoy playing and being in a musical environment.  I have discovered that I can't follow everything that goes on.  So I just enjoy the moment.  I enjoy the flow.  I don't try to keep up.  This works for me.


One of my favorite series of books takes place in Scotland.


Iris L.

llee08032
Posted: Friday, April 15, 2016 9:04 AM
Joined: 5/20/2014
Posts: 4408


Appalachian mountain music.

Wow this sounds like good music...I think I'll give it a Google and try it out! New and fresh experiences are always good.


Iris L.
Posted: Saturday, April 16, 2016 12:17 AM
Joined: 12/15/2011
Posts: 18509


Bill, no researchers knows what Ilee has so eloquently explained about what we experience re: early memory loss.  


They only get involved with PWDs who repeat themselves and lose things.  At our stage, they cannot identify us.  


Thus, I don't look to them to learn about myself.  I only look to others like myself, which are the other members here.


Iris L.


Unforgiven
Posted: Saturday, April 16, 2016 5:35 PM
Joined: 1/28/2013
Posts: 2659


Oh, yes, Llee, Appalachian mountain music is one of my favorite genres.  Go to Youtube and search for Doc Watson's version of Shady Grove.  Then search for Pentangle's version of Matty Groves.  Appalachian music is the American cousin of Scottish and British folk songs, and I'm not surprised that some Scottish guys wanted to play it.

I'm envious, Bill that you got to hear it live.