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Help With Question Please
BillBRNC
Posted: Wednesday, April 20, 2016 7:26 AM
Joined: 12/2/2015
Posts: 1018


My glucose pet scan came back late yesterday. The radiologist was asked to look at it a second time to determine what alternative diagnosis might make sense since the findings were not really consistent with standard Alz. The addendum to the report says something like, most consistent with dementia with Lewy bodies, or something like that. In looking the Lewy body thing up on the Alz Assoc site, the symptoms they outline for the most part don't seem to match my problems, other than the memory, executive function, visual stuff , but none of the body movement or body involvement stuff. Anybody know what the heck this is? I haven't spoke with the doctor at the memory clinic about it yet, but I was wondering what direction this might be going in. Thanks.
llee08032
Posted: Wednesday, April 20, 2016 7:53 AM
Joined: 5/20/2014
Posts: 4408


Bill,

More confusing news. I am still being ruled out for LBD according to my neurologist at my appt on Friday. I thought he quashed the idea of LBD but he said no that it is still a possibility. He mentioned this after I told him about my big blow up at work. Do you have difficulty processing information? Feel confused? My Dr was asking me about that. I do not have any of the physical symptoms other than I'm moving slower and slower. When is your next appt at the memory clinic? Can you call the Dr or have your wife call the Dr? Try to stay calm until you get more information. 


Michael Ellenbogen
Posted: Wednesday, April 20, 2016 8:55 AM
Joined: 11/30/2011
Posts: 4460


It is becoming very clear that most people who have dementia have multiple types with just one being the lead. To be very honest with you I believe most of the diagnose made are a guess. I wonder how many are actual true if they get a autopsy. It’s very easy to put label on us but that does not meant it is true.

 


BillBRNC
Posted: Wednesday, April 20, 2016 11:31 AM
Joined: 12/2/2015
Posts: 1018


llee, I don't think I have any physical limitations, particularly the type I've read about for Lewy thing. As for confused, yes. If pressed do I have a little trouble with temper, some of the times, sometimes a lot, but usually not....if that makes sense. I will be having a conversation and hopeful meeting with the memory assessment place within a few days. I was at my heart doctor's office this morning, and I asked him about it, and he said he thought some of my meds might be contributing, but no way to know without reducing or eliminating them, but he isn't the doctor who put me on those meds, but I plan to follow-up with this. The pet scan did not appear to be an Alz-looking pet scan. I think they still plan to give me the other pet scan for plaques and tangles, as the hospital is in the IDEAs clinical trial, but I have no idea when that might take place. Right now I need to talk with the dementia doctor that ordered the pet scan, and I'm just waiting to hear back from her. I think she might be waiting to have her group do a group review, because that is how they usually work on out of the ordinary stuff. My heart doctor said he hopes everyone is looking closely at the meds I'm on, and I told him that I've been told that the meds have been checked closely, as that is normal starting point. I plan to renew that item when I talk to the dementia doctor. Here I thought I knew something, now I seem to know even less than before, and what little I know seems worse for knowing. If I had been this slow and unorganized in my profession I would have been shot on the spot by my client. Good grief.
julielarson
Posted: Wednesday, April 20, 2016 11:51 AM
Joined: 9/30/2015
Posts: 1155


Bill, what a surprise this is, to think you have one kind of dementia and to find out you have another. I hope they can give you a better understanding of what is going on soon to set your mind at ease as much as possible. I know just like me you would rather none of this was going on but to know what it is will help some.
Iris L.
Posted: Wednesday, April 20, 2016 1:23 PM
Joined: 12/15/2011
Posts: 18509


Bill, I don't think it is possible to make much of a determination of a specific type of dementia in the early stages.  Part of the diagnostic process is observing the development of signs and symptoms over time.  Our medical system relies on technical diagnostic studies, which may not be specific enough in the early stages.


The primary reason for knowing a specific diagnosis is to know which medications may help, and which medications to avoid.  Also, it helps the patient and family to be prepared as to how the disease might develop over time, although we all know that each patient has an individualized progress.


One test cannot make a diagnosis in the dementias.  It is necessary to come to a conclusion based on the results of several factors.  This is what the neurologist should do.  Remember, that the diagnosis of the dementias is a rule-out diagnosis.  Rule out what other possible causes it could be.  What is left is your diagnosis (possibly).  Remember too, that the diagnosis may change over time.


Personally, I believe that some patients seem to have classic Alzheimer's disease, with amyloid plaques and tau tangles, and other patients have a non-classic disease process with many variations of expression and responses to treatments.  That's why we have so many different courses.  That's a good thing, as far as I am concerned, because it allows for various treatments to be of benefit.


Iris L.

BillBRNC
Posted: Wednesday, April 20, 2016 1:33 PM
Joined: 12/2/2015
Posts: 1018


Iris, thanks for the comments and I appreciate the suggestions. I'm just a total control type person from my years as a lawyer, and getting answers is what I'm all about. Yes, I know I have to stop playing doctor and doing my own research, and let the doctors do what they do far better than I can do it. I just don't like to read a Pet report where I think the radiologist is just guessing at what bad thing might be going on, as opposed to at least recognizing that nothing bad might be going on. Heck, I don't know. It has been a very confusing week or more, and I guess it will remain confusing for a lot longer. I like to get ready and prepare for things, but I have to know what I'm preparing for in order to do that, but I guess I'll just have to stand down for the time being. We all have problems, mine is no better or worse than most, so I need to just go with the flow a little better.
a_step@a_time
Posted: Wednesday, April 20, 2016 4:40 PM
Joined: 11/21/2015
Posts: 237


"Control type person" is how I feel about me too.   I try to be own advocate but is difficult without 'a witness' telling my doctor the symptoms I notice.   I don't have the finesse to talk with doctor and get collaboration and guidance....  and then they get attitude of WHO is the DOCTOR in the room and shut their ears down and send me home to cope on my own.  

Is why I feel forces to research my own health.  I don't want to give up.  At least some supplements have helped me.  I sure hate the 'moments of insanity' and wish I could control the insanity dreams.  Thankfully I right now I have some medications that help more often than not.  At one point, I was so scared and thought I would just do a fast decline.  Now I try to stay out of public more, reduce stress, and away from cold and flu to help my immune system... I believe it has helped me.

Maybe the medical people on here can give us communication advice so doctor don't ignore us.


BillBRNC
Posted: Wednesday, April 20, 2016 4:48 PM
Joined: 12/2/2015
Posts: 1018


Well, the doctor at the memory place is going to talk with us on Friday, supposedly ready to be specific about what is going on and what they propose doing. We shall see what happens. I'll survive until then. Heck, I've been waiting for seems ever just to get to this point. What's another few days. Thanks for the replies.
Mimi S.
Posted: Wednesday, April 20, 2016 6:59 PM
Joined: 11/29/2011
Posts: 7027


Good Bill, let us know. Sounds as though your wife will be with you. Good. Four ears are better than two.
jfkoc
Posted: Wednesday, April 20, 2016 9:18 PM
Joined: 12/4/2011
Posts: 21244


Bill..l.my husband had the Lewy thing. He was a Navy night fighter and then went to law school and was an aviation litigator. This will give you a clue as to his nature.

He went from MCI to Parkinson's to Lewy. He had most of the Parkinson's non-motor difficulties but almost no tremor. He never had hallucinations but shortly before he died he had what I called some night terrors. He did not have any anger and for the most part just seemed to gradually slow down. I think short term memory was effected although sometimes what I saw as memory failure might have been stubbornness i.e. eating something at 3 a.m. when he had a test that was NPO the next day.

Here is what I think is "currently" true: Lewy and Parkinson's are under the same umbrella and as such are not under the AD umbrella.  This does not mean that you can not be under more than one umbrella. Lewy responds very well to Aricept however there are some drugs that if taken must be carefully monitored.

I think it is a good thing that  you second guess every Dr and that you look carefully at every test and report.

I am glad to share  any info I have collected or learned living with Mr Lewy.


Iris L.
Posted: Thursday, April 21, 2016 2:06 AM
Joined: 12/15/2011
Posts: 18509


jfkoc wrote:

I think short term memory was effected although sometimes what I saw as memory failure might have been stubbornness i.e. eating something at 3 a.m. when he had a test that was NPO the next day.

It irks me to read so often that a behavior in a PWD is attributed to stubbornness, or another personality trait, rather than due to memory loss.  I have done the exact same thing, eating when I was supposed to be NPO for a fasting blood test.  And no, I was not being stubborn, I simply forgot, due to my memory loss brain pathology.


I am trying to reassure you, Bill and one step, that the doctors can do only so much.  The primary task they will have is to prescribe medications, and to tell you which medications to avoid.  They can advise you on care for other medical problems, such as if you also have diabetes or cardiovascular problems, or other diseases that impact memory.


Other than that, their role is limited.  They have no ability to predict, other than in generalities.  They cannot predict if you will develop hallucinations.  But, if you do develop hallucinations, they can tell you more about where in the brain your pathology lies, and may have more of a diagnosis for you.  


They cannot tell you how long you will live.  They cannot even tell how long the stage 7 patients will live.


They can tell your care partner when you can no longer be left alone, when you can't drive, or when you cannot formulate your own care plans.


One thing the doctors can do, is tell you if what you are experiencing is part of dementia.  Please, prepare some questions for your neurologist before your appointment.   It is worthwhile to have a relationship with a brain specialist that you can rely on to tell you the truth about what you might be facing.  But keep in mind, that they cannot predict that you will face any specific behavior or complication.  They can help after the behavior or complication happens.


Iris L.

 



BillBRNC
Posted: Thursday, April 21, 2016 7:36 AM
Joined: 12/2/2015
Posts: 1018


Thanks for the comments. Yes, I might be having lots of questions about Lewy. It is good to hear that not all Lewy is as terrible as some of what I've read. And yes, I'm going to ask the doctor a lot of questions on Friday. I am particularly interested in the meds I'm taking that could be reduced or eliminated. The doc already has agreed to talk with my main heart failure doc, as he is the source of most of my prescriptions that my pacemaker guy questioned yesterday. I heard back last night via e-mail from the memory doc who said that the meds didn't appear to be a problem in her mind, but I plan to discuss that further with her on Friday. I really want to know what the radiologist saw and how strong he/she feels about her addendum diagnosis. It looks like they asked the radiologist to go back and make an educated guess about the findings, but then radiologist I've known didn't make guesses when it came to reading stuff. If they had doubts, they made those doubts clear, and the radiologist on my Pet seemed to be saying Lewy was a reasonable call. My memory doc is leaving the medical center in a month to go to another place far away, and she said last night that I would be followed by the head of the department who she said was very interested in my case. That can be interpreted many ways, so I plan to try my best to find out what they are really thinking, as opposed to saying. But part depends on which me shows up for the discussion. I hope to be clear as can be. My wife will be involved, but she is a doctor and doctors don't tend to push other doctors very hard, why I don't know. I'm not going to be pushy, but I do want clear and straight answers and information. I'm betting that this is going to end up being a well, let's just wait and see what we see in 6 months kind of thing. By the way, I don't like it all when one doctor says that another doctor is "interested" in following my case. Just saying.
jfkoc
Posted: Thursday, April 21, 2016 4:38 PM
Joined: 12/4/2011
Posts: 21244


Iris...I did not mean that I chalked up what might have been a memory problem to stubbornness. I simply meant that my husband calmly and pleasantly did pretty much what he wanted all of his life so... had he forgotten that he was NPO or simply did not care or think it did not apply to him. There were instances that I would not have been able to differentiate but I accepted either...
jfkoc
Posted: Thursday, April 21, 2016 5:02 PM
Joined: 12/4/2011
Posts: 21244


Bill...I can tell you that after the MCI was noted ( could have been the onset of Lewy) my husband attended St John's graduate course in the Great Books in preparation for writing a book on literary moral philosophy. We bought and gutted a house there and traveled back and forth for almost 10 years. 

We lived those ten years fully despite what we thought was MCI and the additional heart problems and type 2 diabetes. I have no reason to think that our story is unusual although I know it could have been harder,


BillBRNC
Posted: Thursday, April 21, 2016 7:17 PM
Joined: 12/2/2015
Posts: 1018


jfkoc wrote:

Bill...I can tell you that after the MCI was noted ( could have been the onset of Lewy) my husband attended St John's graduate course in the Great Books in preparation for writing a book on literary moral philosophy. We bought and gutted a house there and traveled back and forth for almost 10 years. 

We lived those ten years fully despite what we thought was MCI and the additional heart problems and type 2 diabetes. I have no reason to think that our story is unusual although I know it could have been harder,

Jfk, I don't really know what to call you, but I appreciate your comments from your personal experience. My wife told me tonight that she cried at her office when she saw the addendum to my pet report. Strange, because my wife is a doctor and she never shows much in the way of emotions. I hope you are right and that your expeience is not unusual. I'll find out tomorrow afternoon what my memory doctor thinks, at least I hope she has the guts to speak her true mind. I can live and die with the facts, but I darn well want to know the facts. From what I have read, many folks experience like you did, others have terrible experience. I'll take my chances, since I have no choice, but I appreciate that you still come here and give us your wisdom.

 



w/e
Posted: Thursday, April 21, 2016 7:40 PM
Joined: 3/7/2012
Posts: 1747


Mr. Bill... My half a cent at the table.

 Modern science discusses symptoms, diagnosis, treatments, disease progression and outcomes... You would like to know what the future will hold. You would like to be prepared. You want to be ready. You would like to be of 'no dementia bother' to your lovely partner-spouse. You want to cross all your T's and dot all your I's...  Well thought out. Well planned. Well done... good for you.

  As it was done for your heart when it went kaput, you would like as well to have a firm diagnosis of  the problems with your brain. Completely. Totally. In black and white. But, my e-friend, since you do not have a brain tumor. Since you do not have cancer in the brain. A firm diagnosis of dementia. What type of dementia it is. Ain't going to happen easily .... Dementia describes a collection of symptoms that are caused by disorders affecting the brain. It is not one specific disease. Progression and outcomes are difficult to determine. The fact is that Brain Science, in spite of many developments, is still in its infancy. Doctors know that. 

 Ha! No brain transplant, as yet... And life goes on.

   Frankly, in my humble opinion, your broken old ticker will probably go dead silent long before your brain goes totally broken. So enjoy your here-and-now. Be calm. Be at peace. Try not to run away... From reading some of your postings, I believe you have created too many awfully dark images. Too many huge monsters in your mind... Yes, you experience anxieties. You experience daily frustrations. You have doubts. Insecurities. Confusion. I understand it, a wee bit. The dementia journey is difficult, indeed. But in the very depth of your being you continue on... To where? To a place called  Here-and-Now.

 Believe me,  there is life after a diagnosis of dementia. A life with abilities. As well as some dis-abilities...

My immortal beloved and I had many, many, many years of traveling, drinking, dancing, singing, visiting museums, art galleries, going to the theater and concerts, while also living in peace, tranquility, contentment and yummy love-making after his diagnosis of dementia/AD... After diagnosis, we had 10+ years of living, not dying...

 My immortal beloved used to say, Life does not owe us anything... We have to find the courage to be inside ourselves..  Courage is a human act. It is the power of our being. The courage to be is an engagement with life.... Courage to overcome our despair, our anxieties, our fears.  

 Hmm...  At 68 years of age, Death came knocking at our door. Sudden cardiac arrest was what killed him... Go figure... Yes. After 48 years of a life together, I miss him terribly. I miss the scent of his body. The touch of his hands. The taste of his kisses. The sound of his deep voice.

Acceptance. Acceptance of the grey areas inside his blue brain... A brain full of colours, he had. 

 You are not a spring chicken, Mr. Bill. You are a man of a certain age. Try to relax a bit more. As they say, it is your time to go with the flow. I am not sure, but I think it is called the fourth Dharma... This is the time when you let your worries about the future go. You had a career. You have saved money. You had a family. You have grandchildren... You have done your future...You've had a well lived life...  Let your wife take care of the kinks of your symptoms of dementia and of your old age with all the love and the kindness in her heart... You are not a bother to her. You are her lover.

 What you have is the moment. Seize the moment. Seize the here-and-now. Have the courage to be.  Celebrate your life. Plunge yourself into the source of creativity. Take from your creativity all the life there is in it. A creative life has the taste pure wine.

We are all just perfectly imperfect. Nothing more. Nothing less.

Hugs.


jfkoc
Posted: Thursday, April 21, 2016 9:38 PM
Joined: 12/4/2011
Posts: 21244


Guess I have not signed in with my name on this thread...it's Judith and truly, when you think about it, I think there are far more "gentle journeys" than rough.
Iris L.
Posted: Friday, April 22, 2016 2:29 AM
Joined: 12/15/2011
Posts: 18509


Jfkoc, I did not mean to single you out.  This is a common practice.  I just don't happen to like it, and it has become a pet peeve of mine, because I see it as a misperception.  


A member just posted on the Spouse/Partner board regarding her PWD's "stubbornness."  I see it all the time.  


I would not like for people to refer to me as "stubborn" when I have a brain pathology.  I am not and have never been a stubborn person.  I can accept having an illness, but I can't accept being called stubborn, when I am not.


Iris L.


Michael Ellenbogen
Posted: Friday, April 22, 2016 6:56 AM
Joined: 11/30/2011
Posts: 4460


You could not have said it better w/e. He is wasting away his precious years worrying rather then enjoying life. It is sad.


BillBRNC
Posted: Friday, April 22, 2016 7:13 AM
Joined: 12/2/2015
Posts: 1018


Michael Ellenbogen wrote:

You could not have said it better w/e. He is wasting away his precious years worrying rather then enjoying life. It is sad.

 No need to feel sad for me, as I don't feel sad. I also don't live with my head in the sand. I also don't consider getting the fact to be a waste of time. To each their own.



jfkoc
Posted: Friday, April 22, 2016 10:06 AM
Joined: 12/4/2011
Posts: 21244


Thanks Iris...I feared it looked like I shortchanged my husband.

Bill...you don't sound sad. It is important to get the facts. In our case the whole thing crept up on us so I was the fact gatherer...it is rather like being a detective. I just hope that you continue to realize that your journey will be yours....prepare for what if then let it go and live!


BillBRNC
Posted: Friday, April 22, 2016 10:19 AM
Joined: 12/2/2015
Posts: 1018


Judith, you have it exactly right in terms of what I'm trying to do. For me, getting my ducks lined up as much as reasonable to do is essential to me then being able to put the issue away and live life without thinking about it. Of course I'm only human so sometimes emotions can produce an emotional response rather than logical, but I just want to know what is out there to be known, then I should be able to change gears and just get on with living. I've done it once before with my heart failure, a few bumps here and there, but mostly successful. I don't think it is possible to be more than mostly successful when it comes to this sort of thing. I do realize that I might not get a solid answer today from the doctor or any time in the near future if ever, but I haven't touched all the bases yet, so I am still work in progress. It's Friday, so that means Bistro for us tonight with friends. Hope everyone else has a nice weekend.
jfkoc
Posted: Friday, April 22, 2016 11:03 AM
Joined: 12/4/2011
Posts: 21244


If that means Paris, I'm coming with!!!
Iris L.
Posted: Friday, April 22, 2016 1:40 PM
Joined: 12/15/2011
Posts: 18509


I don't think it's a waste of time to search for answers for questions about one's own life.  A LCSW chastised me and said I was never satisfied, because I kept searching for answers.  Was I being "stubborn"?  No, I was doing what the professionals should have been doing, searching for answers.  


Bill, keep searching and seeking, until you are satisfied.  Just know that the "professionals" don't have all the answers for you.  


Iris L.


llee08032
Posted: Saturday, April 23, 2016 9:13 AM
Joined: 5/20/2014
Posts: 4408


Let's not forget that many PWD with cognitive reserve and awareness start out searching for answers to their experience's of cognitive decline, memory loss and impaired functioning. To say that it's unnessessary worrying and a waste of time is minimizing the concerns of persons new to this process! I am still in the searching process but taking my time with it because I really don't want the answer when I am still able to work. Fluffing and flowering up this very frightening and REAL experience and trying to turn this process into a fairy tale is not validating to the new person just coming to the board trying to pursue a diagnosis and face all that lies before them. What are we thinking? Bill needs validation and empathy not minimization. 

I am still on this board because my concerns, fears, confusion, pain and grief was acknowledged and validated by Iris, Alz+, Mimi, Marion, Jo, Paul and others. I was given help and support. 

Bill I acknowledge and validate all that you are experiencing and commend you on all you have done in seeking the truth. I am so sorry that you and your loved one's have to go through this. Sorry about the confirmation of your diagnosis! You have done everything right, taken all the right steps and have handled all with with courage, dignity and grace. Your concerns and wanting to get to the truth are is/was a normal and a natural response to any disease process and terminal illness! God keep you and your's during this very difficult time. 

It is  sooooooo much to take in and process. Soooo much to go through. Hold steady on your courage and strength. 

Let us not deny that roses come with thorns! 


llee08032
Posted: Saturday, April 23, 2016 9:40 AM
Joined: 5/20/2014
Posts: 4408


How  did this start out and come about for you or for you and your loved one? It had to be difficult.
Iris L.
Posted: Saturday, April 23, 2016 11:57 AM
Joined: 12/15/2011
Posts: 18509


I am so grateful to Mimi S. and Alan in Colorado and SnowyLynne and others members, current and emeritus, who supported me emotionally and taught me what I need to know about living with dementia and cognitive impairment.  


I was already living as healthfully as I could as a lupus patient, but I learned more from them.  


The suggestions for patients are to help improve functioning and to prolong the early stages, both of which I was and still am interested in.  I'm glad these members were here to help me.


Iris L.


Michael Ellenbogen
Posted: Saturday, April 23, 2016 12:56 PM
Joined: 11/30/2011
Posts: 4460


Look I clearly understand what Bill is trying to do. We all go thru this. This is meant as a wakeup call to him to enjoy life and to not spend so much time focusing on it and making the wrong decisions. He has given so much up already. In my opinion to early and had not even started taking drugs that could possibly bring him back a little. I have tried to speak to him but he has not wanted to. I could have given him many of the answers. And most importantly this board is only as good as the people who reply. I have seen times were the answers given to him were so wrong but I don’t have time to reply. I am sure you all have seen them in the past. If you want good information you need to get if from good sources. And by the way I never said he was sad.  


w/e
Posted: Saturday, April 23, 2016 3:39 PM
Joined: 3/7/2012
Posts: 1747


Dear Ilee, I do not know if you will come back to read my answer to your words. Here it is anyways. For others to read, maybe.

(1) Minimization...  I was not downplaying the significance of Bill's emotions and feelings. I was not trivializing his search for answers. I was not giving the least degree of importance to the fears, the anguish, the anxieties and the pain experienced by a person living with symptoms of dementia... My immortal beloved lived with symptoms of dementia/AD for 10+ years. I know how gut / mind / heart wrenching the journey was for him, from beginning to end. I was his care-partner, 24/7 - 365... All I was attempting to do, in my reply to Bill's post, was to bring the focus to living and not to dying... After diagnosis, a person with dementia has good moments, weeks, days and years left .... I wrote a few brief words. Most probably poorly written, in my awkward use of the American English language. Not my native tongue...  I wanted to focus on maintaining the courage to be. (I have read recently, The Courage To Be, by Paul Tillich.)... It is difficult, when you do not know the person, to try to put some words to clear away noise and confusion. In the hope that you help them to concentrate on inner peace. To concentrate on the things that bring contentment. To focus on simple things to lower stress. And feel more relaxed. To focus on what gives joy and value. To try to live with less clutter in life... To live in the here-and-now with peace and contentment, I believe, it is possible. Broken brain, and all.... Frankly, I think I was mostly writing about minimalism as it is understood in the arts and in the orient. I was not engaging in minimization. As it is understood in psychology.... Hmm...Western thoughts. Oriental thoughts... All good with its colours and textures... 

(2) Roses and thorns... Yes. And we have to be careful with the thorns. There is also the lovely lotus flower. It emerges from the mud and murky waters. And, there is jasmine with its gorgeous scent.

Ilee, I hope your dentist takes good care of your tooth problem. And you be without danger of infection and pain.

Hugs


Iris L.
Posted: Saturday, April 23, 2016 4:18 PM
Joined: 12/15/2011
Posts: 18509


Michael, what answers were given that you think were wrong?  Everyone here speaks from their own experience.  I don't think there are wrong answers.  People have different points of view.  What you think is wrong, someone else might think is right.


In any case, we all should feel comfortable expressing ourselves here.  Nobody listens to us in the outside world.


Iris L.


llee08032
Posted: Monday, April 25, 2016 8:11 AM
Joined: 5/20/2014
Posts: 4408


W/E hugs back to you! I do love that you do not perpetuate the nightmare, lost the person, empty vessel theory. 

I think we just need to be mindful what is like for a new person coming into a dx and how fresh the pain even when we want to know and have known all along. I don't feel that having another major illness makes having or getting a diagnosis of dementia any easier to take. Many of us will more than likely die from a complication of or something other than actual dementia but coming to terms with another illness on top of another is just as difficult perhaps more difficult as coming to terms with dementia in of itself. 

Perhaps I'm being overly analytical but I also feel fairly new to this process also even though I've suspected what was wrong for quite some time. It's all so different on paper and it can be a rule process for several years or more for some. Yes, there is life after but it takes a while to take it all in and get to the point of envisioning that life. Bill is right where he is supposed to be in his process of coming to terms. I fully recognize that it is not an easy place to be and it takes as long as it takes to come to terms and acceptance.


The_Sun_Still_Rises
Posted: Monday, April 25, 2016 8:57 AM
Joined: 7/24/2015
Posts: 3020


Hi Bill,

There are 3 tells of Lewy Bodies...an you do no need have all them be have it.  Indeed, it is ones with no hallucinations that are harder dx it.  The main diff between lewy bodies an Alz is you can have bett periods an worse periods of time...where Alz is prett consistent downhill. 

Many peop are dx'd with Alz who do no actually have Alz, but rather have some other form dementia...doctors are no perfect in this regard...an absent a biopsy there no way real tell. 

Lewy Bodies peop should be very cautious eve take anti-psychotics...be cause they tend have extreme bad reactions them...paradoxical reactions.  Just letting you know. 

Lewy bodies is no Parkinson's...so you do no need have movements for.  It also does no mean that they will no possibly develop later on.  It is usually ver advanced stages that have movements.  There are many great peop with lewy bodies in the online dementia community you may enjoy talking with an see for you self. 

An smell hallucinations ARE in the lewy body line up of hallucinations.

Hope that helps.

<3