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New to this...Not diagnosed yet...Scared to find out
melfrue
Posted: Thursday, September 24, 2015 12:06 PM
Joined: 6/18/2015
Posts: 1


It took every bit of courage I had to even sign up on this message board... but I did it. So, here goes...

My grandmother had Alzheimer's and we lost her from it around 7 years ago.

After caring for her mother, my grandmother, and watching her basically disappear from us, her worst fear was that she, too, would develop AD...

She did absolutely everything right - exercised 5-6 days a week (walking, biking, Pilates, Jazzercise); she exercised her mind every single day (crossword puzzles and sodoku every morning, played Bridge with her Bridge club, read the newspaper each day, Book Club that read and discussed the books every month); her diet was, and still is, flawless (lots of mercury-free fish, lean proteins, lots of fresh organic veggies and salads, a little red wine)...but despite all of this, she still got it. Although she hasn't gotten an actual diagnosis just yet - it is coming soon - I have watched her decline little by little over the past couple of years, and now her worst fear has come true. She is 68.

I am 48. And developing AD has now become my worst fear. I have noticed more and more how forgetful I have become. I get overwhelmed very easily, much more so than in the past. My kids and friends keep dismissing these little "incidents" as "oh, that happens to all of us!"..... And of course, I would like to attribute the forgetfullness, the "brain fog", the getting lost a few times driving to pick up my kids, etc. to "the menopause years"....but last night, driving back home from an out of town trip, with my kids in the car, I took the wrong exit....AGAIN....and got really, really lost. Took us an extra hour to get home. I am scared. I don't know if I want to know. I am depressed and paralyzed with fear....

I don't know what to do.... Is there anyone out there who can relate? I need guidance, direction...whatever anyone is willing to offer.... I would appreciate it so very much...



Unforgiven
Posted: Thursday, September 24, 2015 12:28 PM
Joined: 1/28/2013
Posts: 2659


Oh yes, you have come to the right place. We can all of us relate whether we're PWD or caregivers. I'm currently a caregiver, but every little memory lapse or groping for the right word sends fear right through me.

On this portion of the board you will meet people who have been diagnosed and are facing the challenge of living with the disease with grace and courage. They'll be along to say hello pretty soon.

Mimi and Iris are my heroes, because they live and function despite the disease and pass on their wisdom. Michael Ellenbogen, when he comes back, has been dealing with this for years and is still fighting to make a difference. We don't get to choose our fate, but even a diagnosis does not mean that life is over.

An DI
Posted: Thursday, September 24, 2015 2:28 PM
Joined: 5/10/2015
Posts: 29


Hi Melfrue,

You know, even if you don't have Alzheimer's, I think it's helpful to be in a place where you can share your thoughts and feelings.

I was diagnosed with early onset Alzheimer's in 2013. They first did an MRI and then a PET scan and came up with the diagnosis. By the time of the PET scan, I was not remembering anything. I was upright, but not really aware. My doctor started me on Aricept and within two months I started "being in the world" again. By six more months, I was able to make plans and plan transportation on the bus. I have found a folk singing group, some "memory cafes" and I am helping others. I didn't know I would have a life after this diagnosis.

From what I understand, early diagnosis is vital. Please don't let fear get in the way of an early diagnosis. Everyone is working on resolutions to this disease, but there is hope already. You can do it. You may actually find that you are able to help other people who do not want to talk about their memory problems.

God bless us every one,
An Di

alz+
Posted: Thursday, September 24, 2015 2:37 PM
Joined: 9/12/2013
Posts: 3608


melfrue -

It takes a lot to even show up here, at first everything is very heavy.

My grandmother had ALZ, and my Dad, and now me. You are young which adds a different emotional aspect to the possible diagnosis of Alzheimer's.

As you carefully wrote you mentioned how your Mom has done "everything right" and yet here it comes. You watched your grandmother die of the illness.

I imagine you are making the first steps towards some medical examination which might tell you yes or no. Please share this experience on the boards. Many people are going through this and all those who are willing to share their story helps everyone else. Some people have an easier (shorter) time from asking questions to being given a diagnosis. Most of us go years and years and even then if we stay at sort of the same place there is doubt if it is an accurate diagnosis.

My feeling is that there is a massive force of bitterly negative perspectives about dementia which is based on incorrect assumptions, guessing, in regard to having the illness. Patients are rarely asked what it is like for them.

For me it has been hard, very heartbreaking, inspirational, mystical, and I made many mistakes - which are so common as to be thought "the way it is."

There is a great treatment for Alzheimer's and that is proper care. Being around people who understand, who find ways to communicate with us, who find ways to help us keep living and experiencing Life. As you go through this part of finding out keep in mind you have a right to question authority.

No one is to blame for this illness, look at your Mom healthy living. There are mediations available but even the manufacturers make no claim to stalling the disease process but can say some of the drugs do help people function better and longer.

Starting now, remind yourself that worry is natural, fear, anger, shame all kinds of stuff comes up. Learn to relax from the tension.

There are many reasons people have memory difficulties, some times monitoring ourselves about symptoms makes them larger than they might be.

I believe this is NOT the horror show many people expect it to be because I helped care for my Dad and it was wonderful. We communicated at his dying breath. We do not disappear, other people do not know how to reach us when we become less verbal. Our souls, our essence, our character all are there until the end.

If we can find a way to live with real support, affection, safety, comfort we do well- as in any other illness. It has been difficult for me figuring out how to make my place to live with Alzheimer's be pretty good. Takes courage, and takes heart.

Look forward to knowing more about your experiences. Loads of support and friends here on this board. Thank you for posting.



Iris L.
Posted: Thursday, September 24, 2015 5:43 PM
Joined: 12/15/2011
Posts: 18354


Welcome to our online support group, melfrue. It also took me three months of lurking before I finally signed on in 2009. But I am so glad I did, because this is the best place to learn what to do for yourself and to share with others like yourself.

I began having serious memory problems at age 37, so bad that I had to stop practicing pediatrics. Over the years, my memory problems have been attributed to many different causes. Even now, at age 65, I still do not have a dx of dementia or Alzheimer's Disease, but of cognitive impairment not otherwise specified.

What has helped me is being referred to an excellent neurologist who is diligent about searching out risk factors and co-morbidities. He started me on medication six years ago, which has been helping me. I follow Best Practices, which your mom has been doing.

Like many diseases, the primary risk factor of Alzheimer's disease is heredity. We cannot change our genes, but we do the best we can to moderate the expression of our genes.

No one knows the future. What we can do is prepare ourselves for what may come, and optimize our current functioning. With the help of my fellow boardmates, I have learned what I need to know to treat this condition.

Your life will be different, but it does not have to be miserable. Your life can be fulfilling. You can develop a new appreciation of life.

Both you and your mom need thorough medical and neurological evaluations. Medication may help you. Please read the boards, and keep posting and asking questions. We will help you.

{{{{{{{{ melfrue }}}}}}}}



Iris L.



The_Sun_Still_Rises
Posted: Thursday, September 24, 2015 6:05 PM
Joined: 7/24/2015
Posts: 3020


Hi and welcome,

I am sorry for your grandmother and now possibly your mother. The fear of generational AD certainly changes how you see mistakes you make...making it hard to tell if you are just making mistakes or if it is AD.

One thing that sets young onset apart from the older folk is that, like you, we still have kids, careers, lives and everyone still depends on us. The other thing is that we see more likely to adapt and compensate for losses, so that we stay higher functioning longer.

You might consider going and getting a baseline NeuroPsych test done just to have on record for later on, and then maybe do one every few years to see if there are many changes.

There is one test I found that you can do for yourself, that should NOT change with age...so might be a good marker for someone like you wonder is this it or isn't it.

That is, you set a timer for 1 minute...and in that minute you name all the animals you can think of. Make a tally for each unique animal you name. I think, and I may be forgetting, that over 65 should get12 or more, and under 65 should get 18 or more...a significant difference and that might indicate a problem. I think I get 4 or 5. But whatever number you get should not change with age through the years.

How it came on for me, was just struggling harder with things I needed to do. Like struggling to bring something into focus, but I could still do it...it was just a lot of work. And it would get harder, until eventually I couldn't do that thing.

Early on it became too much for me to follow directions or go new places, but I was still ok if I went to places I know well...unless I missed an exit! Then I would be lost.

I felt like all I had was auto-pilot to go on so I depended on it.

Unlike you, I did not have a clue about dementia or AD...because I thought it was just memory, or old people and dying.

I learned about short term memory and that was really eye opening, because it is such immediate memory that all it does is makes tasks harder...but not in a way that you would think of memory. That is probably one of the earliest symptoms.

Everyone's AD is different though.

It is probably no use me telling you to try not to worry, but I will offer it anyways. Stress can make brain function worse...so trying to find some way to come to peace with it might or might not happen to you...trying to make that ok inside you...will help you get through this in between time of not knowing.

If it does happen, you will have many years after dx where you can still live a great life. And, unlike your grandmother, you will be prepared well in advance.

A great book on the subject is Christine Bryden's Dancing With Dementia...she eloquently tells what it is like to have it...and when I read her book I felt sooo hopeful for my future, and assured that I would have many years.

A great blog is Kate Swaffer's

A great organization is Dementia Alliance International.

The best caregiver trainer -evah - is Teepa Snow who is all over youtube and may help you get ready for your mom's dx.

If you get dx'd, there are some great online support groups that you can get hooked up with. And there is a nice small bunch here.

Best I can say is hang in there. The saying goes, when you find yourself in hell, keep walking and eventually you will get out the other side.

Welcome.


Mimi S.
Posted: Thursday, September 24, 2015 8:50 PM
Joined: 11/29/2011
Posts: 7027


Hi Melfrue.

You don't say where you live.

Do call our help line and ask them for the names of places indoor area that do diagnosis.

If a large University or Medical School is on your list go there. Call ASAP) for an appointment, you may have to wait a few months, but that's OK.

If you have given them your background and they tell you it must be something else; say thank you and look elsewhere.

From your library get a copy of Doraiswamy and Gwyther, The Altzheimer's Action Plan. The beginning of the book tells exactly what a good diagnosis work up. You need it all.

And yes, there are many other conditions that may cause the symptoms you are experiencing, but you want a good check up.

Doing everything right does not mean you will not get dementia; but it may delay the onset and those Best Practices, which several of us on these boards practice, has kept many of us in Early Stage far longer than is the "norm.."

Keep in touch

Lisa428
Posted: Thursday, September 24, 2015 8:59 PM
Joined: 12/5/2011
Posts: 795


Hello and Welcome to the Alzconnected Message Boards,

I do know how scared you are because I was that terrified when I was where you are. I was taking care of my Mom who had AD/other dementias. I was a RN, working and had raised a daughter with mental illness. My husband had died when I was 28.

When I started having problems I attributed them to stress. I was working a lot. On call and all that. My life had not been easy.

I saw three neurologists and even went out of state to finally accept my diagnosis. What?? Not me! I'm the one that holds the family together, the one that is there for my friends, and my patients!

I am sharing all of this to let you know that you are NOT alone. Many of us have lived through terror, anger, depression and finally acceptance of our NEW lives.

Please, be sure to obtain a full check-up with your PCP. Labs, tests to rule out anything that may cause memory issues such as low thyroid function. If and only if you get all clear from your PCP then find a neurologist that specializes in testing for and treating patients with AD/other dementias.


I'm so glad you posted. We are here to help you. We do have a toll free 24/7 Help line @800-272-3900 if you need additional help.

Please, post as often as you'd like.


Peace and Hope,

Lisa


TheSteven
Posted: Friday, September 25, 2015 7:54 AM
Joined: 10/11/2014
Posts: 167


Dear Melfrue,

Welcome to the board. I didn't find the boards until the Alzheimer's Assoc support group advisors told me about it. I also had similar experiences spacing out and driving past my son's doctor's office or taking wrong turns taking him to his weekly Kumon class as well as numerous things at work.


Depending on your medical insurance, the out of pocket expenses can be high. Doctors can give you a long neuropsych test, which if you were a high functioning individual may not show anything until you have progressed really far into early stages like it was in my case. They may do a PET (positron emission tomography) scan to see if you have areas of the brain that are hypoglycemic (not working) but even if you are they can't make a diagnosis unless your neuropsych tests or MRI also detects something. It could indicate early stages frontotemporal dementia or ALZ so until they have more they won't make a diagnosis except for maybe tell you that you have depression and prescribe you pills and ask you to come every few weeks for a visit to a psychiatrist. That is what happened to me as well. Until your MRI shows that your brain is abnormally small for your age and you don't do well in the neuropsych tests and perhaps you get an uncomfortable or painful spinal tap to check cerebrospinal fluid for proteins then you might get a diagnosis of something. In my case it was early onset Alzheimer's. If you get a spinal tap, you should ask for an experienced person. A first timer resident can mess it up a few times and it could be painful until the supervising resident shows them how its done. First hand knowledge again. I was diagnosed with early onset ALZ in 2014.


But don't despair. Many people who have been diagnosed with Alzheimer's have beaten it. I am following Tom Warren's book “Beating Alzheimer's” and have already improved. In my case and many others it was due to mercury poisoning from mercury dental fillings. Since mercury fillings have been used for 185 years it is reasonably possible that may have caused your grandmother's and mother's issues instead of generational genetic ALZ. Low levels of “mercury reproduces all the pathological changes seen in AD” from http://content.iospress.com/articles/journal-of-alzheimers-disease/jad100705 and perhaps your mother's and your issues are due to this. My blog contains dozens of links to videos and articles about this subject and people who have reversed their ALZ as well as all the books you need to read if you think you want to investigate this treatment as well as other alternative treatments that help. My blog is at http://thestevenalztreatment.blogspot.com/ if you want to check it out.



toefeather
Posted: Saturday, September 26, 2015 11:15 AM
Joined: 1/29/2014
Posts: 2


Hi everyone,
I am a caregiver as well. My husband was told he had memory loss due to depression and sleep apnea. He is 56, but has been having some memory issues since around the age of 50. He has seen therapists for years, has not shown any signs of depression, has been put on a CPAP machine for sleep apnea, had his deviated septum fixed, has had sleep studies that show he is doing fine, but still the memory problems. His Neuro Psych test showed MCI.His neurologist said it is curable.
We finally took him to University of Michigan for testing. The Neurologist there was wonderful.He said it was definately dementia and most likely Early Onset Alzheimer's, as my mother in law died from that. He said with a PET scan he could definitively diagnose my husband, but our Ohio insurance denied it. The doctor appealed 3 times and was still denied.
I can't afford the out of pocket for a PET scan. Any advice? Is it important to have this specific diagnosis, or can we assume that it is Az.? He is on Namenda.

Unforgiven
Posted: Saturday, September 26, 2015 11:25 AM
Joined: 1/28/2013
Posts: 2659


Has your DH had other tests to rule out physical causes other than YOAD? Such as brain tumors, hydrocephalus, or thyroid issues? As long as those have been ruled out, I would say the neurologist knows what he is seeing. Others with more medical education than me will be along shortly.

Welcome to the group. Glad to meet you, but sorry you're here.

The_Sun_Still_Rises
Posted: Saturday, September 26, 2015 12:29 PM
Joined: 7/24/2015
Posts: 3020


I am sorry that I have no advice for getting PET scans covered. I am not that far into the road of dx yet (still waiting to see the neurologist). My thoughts, however, on it (for myself) were to not bother with the PET scans if they were not covered.

Alz and dementia can never be 100% confirmed by any test except brain biopsy, which generally happens after death...just a thought to consider in all this. Everything else they do is guess work.

It is nice to know what areas of decline their are, what strengths are from the neuropsych report...that is useful in trying to figure out why some things are harder for you than another.

I wish I had better answers on the PET scans. I think they are still very new...and thus not part of insurance. If you ever find a way to get it covered, I hope you will come back and share that info...would be very helpful to many here.


Iris L.
Posted: Saturday, September 26, 2015 2:58 PM
Joined: 12/15/2011
Posts: 18354


Welcome toefeather. I had a PET scan done at no charge to me. I agreed to be a control subject for a brain cancer clinical trial. My PET scan came back unremarkable.

Your neurologist might search local clinical trials and other research centers to see if there are any that involve PET scans.


Iris L.





toefeather
Posted: Saturday, September 26, 2015 3:20 PM
Joined: 1/29/2014
Posts: 2


He has had all of the tests except PET. Thanks for the replies and reassurance and welcomes everyone. I think I jumped in to the wrong place. I didn't mean to ignore the original post. I cannot imagine what you must be going through!
llee08032
Posted: Monday, September 28, 2015 8:24 AM
Joined: 5/20/2014
Posts: 4408


The path dx is still fresh in my mind. I didn't know what to do but am thankful to everyone on the board who led me in the right direction. First see neurologist, labs, MRI, sleep study, full neuro psych eval = diagnosis or cause of cognitive decline. I feel like I left something out?
llee08032
Posted: Wednesday, September 30, 2015 6:12 AM
Joined: 5/20/2014
Posts: 4408


I am sorry that I have no advice for getting PET scans covered. I am not that far into the road of dx yet (still waiting to see the neurologist).

Sun, I am surprised that you have not yet seen a neurologist.
For some reason I thought you had a confirmed dx of young onset at stage 5? You have so much knowledge about dementia I didn't realize you are a babe in the woods and still working on getting a dx. I too was on the board before dx and it was so helpful to me to know what all the steps are that lead to dx. To know what questions to ask, what tests you have to get and what information is important for the neurologist to know etc. The board also gave me the courage to pursue dx as I had went to neurologist got scared and then in denial and didn't go back until a year later. It is hard not knowing and yet knowing that something is very wrong. Please keep us posted on how you make out with your neurology appt. Best of luck to you!

The_Sun_Still_Rises
Posted: Wednesday, September 30, 2015 7:03 AM
Joined: 7/24/2015
Posts: 3020


llee08032 wrote:
Sun, I am surprised that you have not yet seen a neurologist.
For some reason I thought you had a confirmed dx of young onset at stage 5? You have so much knowledge about dementia I didn't realize you are a babe in the woods and still working on getting a dx. I too was on the board before dx and it was so helpful to me to know what all the steps are that lead to dx. To know what questions to ask, what tests you have to get and what information is important for the neurologist to know etc. The board also gave me the courage to pursue dx as I had went to neurologist got scared and then in denial and didn't go back until a year later. It is hard not knowing and yet knowing that something is very wrong. Please keep us posted on how you make out with your neurology appt. Best of luck to you!

---------------------------------------------------------------------------------------------------------

I have had my testing, I have my dx, and I have my staging - my dx and stage is not at all in question from any of my medical or other care providers, they are all in agreement and consensus. I also respond well to Aricept which removed any doubt I may have had. Depression and anxiety are ruled out. Tumor and stroke are also ruled out per previous normal MRIs and CT scans.

I just got my dx in June. However, I have been dealing with cognitive issues that have interfered with daily life for over 5 years and was noticeable over 6 years ago. It has been progressive, and has progressed pretty steadily through that time. So far, it has been a 6+ year decline (also typical of young onset - a faster rate of decline than older folk).

The only open question I had had, was why I am so good at some things and absolutely cannot do other things...which made no sense to me (since I thought Alz attacked the whole brain at once). Only come to find, upon doing all these video groups with PWD, that I fit very classically the dx of dementia/Alz. So the only thing left is for me to accept it.

THE ONLY THING LEFT IN QUESTION - is whether there is a medical cause or whether it is Alz proper. I also have Myasthenia Gravis, but pretty much already know that it does NOT cause brain degeneration. We await a neurologist to say one way or the other (medical or not medical). If not for a medical cause, then I am told by my doctors that it is Alz proper. I also hold out hope for the Normal Pressure Whatever thing because I am just optimistic that way...as well as genetic testing (so my kids can get tested). I am also seeing the neurologist for the MG issue. I am not seeing the neurologist for confirmation of my diagnosis...just clarification.

I am young onset by virtue of the fact that I am not 65 yet.

The only way to ever "confirm a dx" is by brain biopsy after death and I am not there yet either.

My report says Major (not minor, not moderate) Neurocognitive Disorder (which is the new fancy name for dementia). I do not have Mild Cognitive Impairment.

I see a neurologist in November, but am still a ways away from conversations with any of my doctors re PET scans...so I am just not there (as in PET scan convos) yet. I also do not feel a need, personally, for a PET scan as my providers already have everything they need for meds, services, etc. For me, a PET scan would be purely for curiosity...and then, only if it was covered by insurance. I am sure I will know more on the PET scan subject if/when it is presented to me and if/when I take that course of action.

Hope that clarifies.


llee08032
Posted: Wednesday, September 30, 2015 7:46 AM
Joined: 5/20/2014
Posts: 4408


Sun-Do keep and hold on to being being optimistic. Maybe it is medical and can perhaps be cured. I am not familiar with medical causes/or treatments of dementia. Thanks for clarifying.
Mimi S.
Posted: Wednesday, September 30, 2015 10:29 AM
Joined: 11/29/2011
Posts: 7027


For all those who are afraid they have dementia: From your library get a copy of The Alzheimer's Action Plan by Doraiswamy and Gwyther. This is the standard of what a good diagnosis consists of.

Yes, some folks do all the right things and still get it. That's why I hate articles proclaiming ways to PREVENT AD. Perhaps because they have led such a healthy life style, the age at which symptoms appeared may have been delayed. In my opinion, it is vital that patients with the dx continue or begin a healthy life style aka Best Practices.

The brain scan for hydrocephalus should have been part of the diagnosis.

A PET scan with the Pittsburg Compound would be nice. However the cost is prohibitive for most. It is often given if you take part in a clinical study.

However, I'm a little mixed up. The scans I've seen show increasingly empty spots in the brain as the disease progresses. My question: is this the one that shows amalyoid tissue and tangles? If so, how does one explain those nuns in that study who had no amalyoid tissue post mortem, but who were well into dementia at time of death?

Sun, As I've written before I also have MG. I too, take massive doses of Mestinon, but mine are mostly in the 180 mg slow release form. Two neurologists have speculated that this Mestinon may be a major factor in why my AD is progressing at a snail's pace. It is extremely rare for a person to have both. I wonder if our neurologist could somehow get in touch with each other?

Iris L.
Posted: Wednesday, September 30, 2015 4:04 PM
Joined: 12/15/2011
Posts: 18354


Mimi S. wrote:



However, I'm a little mixed up. The scans I've seen show increasingly empty spots in the brain as the disease progresses. My question: is this the one that shows amalyoid tissue and tangles? If so, how does one explain those nuns in that study who had no amalyoid tissue post mortem, but who were well into dementia at time of death?



Mimi, I am mixed up too. My neurologist, at my last visit, introduced me to a new term, leukoaraiosis, which refers to spots in the what matter of the brain seen on CT scan or MRI scan. These spots are thought to be cardiovascular in origin.

As far as the nun without amyloid and tau tangles but who did have dementia, my understanding is that there is currently no explanation, other than they must have had another cause of dementia that was not classic Alzheimer's Disease.

If I remember, I will bring this up at my next appt later on in October.

Iris L.

TheSteven
Posted: Wednesday, September 30, 2015 8:12 PM
Joined: 10/11/2014
Posts: 167


Mimi S. wrote:



However, I'm a little mixed up. The scans I've seen show increasingly empty spots in the brain as the disease progresses. My question: is this the one that shows amalyoid tissue and tangles? If so, how does one explain those nuns in that study who had no amalyoid tissue post mortem, but who were well into dementia at time of death?

Those nuns probably had what they call Primary age-related tauopathy (PART) which I also referenced in my blog. Depending on how your genetics handles mercury and how you take care of yourself.

llee08032
Posted: Wednesday, September 30, 2015 10:04 PM
Joined: 5/20/2014
Posts: 4408


I'm glad we have a place to come to with questions and help getting un-confused. It seems as if new info about AD and dementia is always cropping up just when you think you have gathered enough pieces of the puzzle to get by and lend a helping hand to new persons coming on the board. I just want to clarify now that it seems I have conflicting information about dx between neuro psychologist, neurologist and now the new neuro opthalmology report that whatever the neurologist concludes from all of this trumps all the other opinions? For example the neuro opthalmologist concluded that I AD given some of the consistent 1st percentile scores on neuro psych evals with visual processing because the extensive vision tests he conducted were unremarkable. The neuro psychologist says Lewy Body or AD with Lewy Body and my neurologist disagrees with her. I won't know that the neurologist will concur or not with the neurological opthalmologist until my next appt. Do I sound confused yet? One thing I am not confused about now is how dx can change when your only a year or more into this whole conundrum. I am not in a constant state of chaos and fear like I was when I first came on the board but it still feels new and I feel naive' sometimes compared to others who seem to know much more than I.
Iris L.
Posted: Thursday, October 1, 2015 2:04 AM
Joined: 12/15/2011
Posts: 18354


Ilee, one of the aspects of Lewy Body dementia is vivid hallucinations. One of the patient members told me she would see large animals, such as elephants, on her lawn outside her home. She was aware she was hallucinating. Her father had had the same hallucinations. I do not recall you ever posting about hallucinations. There are also auditory and olfactory (smell) hallucinations.

Lewy Body dementia may be associated with Parkinson's disease.

One thing that may be thought of as a benefit is that it takes time to make a diagnosis. Even after a diagnosis is given, it may be corrected after some more time. So you have time to see what develops, if anything. After all, you might just remain at the same level that you are at right now.

Iris L.

Iris L.
Posted: Thursday, October 1, 2015 2:13 AM
Joined: 12/15/2011
Posts: 18354


Thanks, Steven. Here is some information on Primary age-related tauopathy.

Alzheimers-Related “Primary Age-related Tauopathy” Memory Disorder Discovered


In a research article entitled “Primary age-related tauopathy (PART): a common pathology associated with human aging,” recently published in the Acta Neuropathologica, researchers uncovered new insights into an Alzheimers-related memory disorder.

This multi-institutional study, co-led by Peter T. Nelson, MD, PhD, of the University of Kentucky’s Sanders-Brown Center on Aging, and John F. Crary, MD, PhD, of Columbia University Medical Center, has defined and established criteria for a new neurological disease closely resembling Alzheimer’s disease called “primary age-related tauopathy “(PART).

PART is a pathologic continuum ranging from focally distributed neurofibrillary tangles (NTF’s) observed in cognitively normal aged individuals, through the pathology observed in persons with dementing illnesses that have been referred to as “tangle-predominant senile dementia” (TPSD), “tangle-only dementia”, among other nomenclatures. The assumption behind this new terminology proposal is to achieve a consensual conceptual framework to facilitate communication between the scientific and medical community.

The study establishes PART as primary tauopathy, directly caused by the tau protein in tangles. Many of the neurofibrillary tangles in Alzheimer’s are thought to arise secondarily to amyloid or some other stimuli. The researchers propose that individuals who have tangles resembling those found in Alzheimer’s but have no detectable amyloid plaques should be diagnosed as having PART.

PART patients may have confounded clinical trials of amyloid-targeting drugs for Alzheimer’s disease as these treatments are unlikely to be effective against tangles researchers expect that the study of tau biomarkers will broaden the recognition of PART and improve comprehension of a condition currently know mostly only from neuropathological studies.

The team concluded that more studies are crucial to understand the pathogenesis of the disease, its relation to other neurodegenerative disorders and the full clinical spectrum of this age-related brain disorder, in order for patients to receive appropriate treatment.

In a press release, Peter Nelson stated “Until now, PART has been difficult to treat or even study because of lack of well-defined criteria.” Furthermore he added “Now that the scientific community has come to a consensus on what the key features of PART are, this will help doctors diagnose different forms of memory impairment early. These advancements will have a big impact on our ability to recognize and develop effective treatments for brain diseases seen in older persons.”

This is from :

http://alzheimersnewstoday.com/2014/11/14/alzheimers-related-primary-age-related-tauopathy-memory-disorder-discovered/


There is still so much about dementia that we do not know.

Iris L.


llee08032
Posted: Thursday, October 1, 2015 9:23 PM
Joined: 5/20/2014
Posts: 4408


Iris, I do see bugs (moving bugs) that disappear, but not all the time. The week before on several occasions I saw a fly zooming past me and it seemed so real I looked to see if I could find them landing but could not find them anywhere! Also see smoke wafting. I think someone on the board maybe you perhaps told me that I was having visual distortions a while back.
Iris L.
Posted: Friday, October 2, 2015 1:37 AM
Joined: 12/15/2011
Posts: 18354


That's interesting, Ilee. Were you able to relate these visual distortions to the neuro-ophthalmologist?

I see things but they are floaters. I have circular floaters that look like tiny Cheerios. The opthalmologist confirmed that I have Cheerios-like floaters in my vitreous humor. I also see things that look like tiny fruit flies in my peripheral vision.

Ilee, do you keep a journal of these sightings? You might notice a pattern. You might also want to review the differences between hallucinations and visual distortions that Alz+ posted a while back. I will see if I can locate that thread.

http://www.alzconnected.org/discussion.aspx?g=posts&t=2147510624&page=-1

There is a lot of good information in that thread.

Iris L.

llee08032
Posted: Friday, October 2, 2015 6:35 AM
Joined: 5/20/2014
Posts: 4408


Iris, Yes, I did talk to the neuro opthalmologist about the bugs and smoke wafting. Shadows and objects also appear to be something else at times. It's hard to explain but a shadow can look like an object, bug or animal depending on the size (I think when this happens it is a distortion and not a visual hallucination). I do also mistake statues for real animals or people. I have a pattern with several days in a row where I fuzzy vision like vaseline is smeared on my eye glasses. The Dr suggested eye drops for the fuzzy vision days. Thank you for re-posting that link. Fortunately, it is not a constant issue and I am becoming increasingly aware that what I think I see is not always accurate.
The_Sun_Still_Rises
Posted: Friday, October 2, 2015 8:56 AM
Joined: 7/24/2015
Posts: 3020


Mimi S. wrote:
Sun, As I've written before I also have MG. I too, take massive doses of Mestinon, but mine are mostly in the 180 mg slow release form. Two neurologists have speculated that this Mestinon may be a major factor in why my AD is progressing at a snail's pace. It is extremely rare for a person to have both. I wonder if our neurologist could somehow get in touch with each other?
----------------------------------------------------------------------------------------------------------------------------
Hi Mimi,

I take x10 doses of the mestinon, during the day x5 doses are 180mg, and at night x5 doses are 120. I think I am maxed out on dosage...and it is slowly wearing off working. In other words, I am becoming slowly weaker in general. It is my understanding that this is to be expected...may it never happen to anyone else.

Even when I started taking it, my brain kept getting worse...even on the Aricept my brain is getting worse, but I feel much clearer...if that is any consultation.

What I find so incredibly interesting is the mestinon = actyl-choline enzyme inhibitor and Aricept = choline enzyme inhibitor. Which leads me to consider auto-immune causes???

One other person in our small group here has MG as well.

It will be very interesting to see what the neurologist has to say on it. I have half a feeling that I will be referred when I see him.



The_Sun_Still_Rises
Posted: Friday, October 2, 2015 8:58 AM
Joined: 7/24/2015
Posts: 3020


Re Lewy body, the 2 primary tell tails are hallucinations (which do not always occur) and that it gets better and worse. The second sign has me suspecting whether I may have Lewy body, coupled with Parkinson's like symptoms I had during antibiotic treatment for Lyme.



Iris L.
Posted: Friday, October 2, 2015 2:36 PM
Joined: 12/15/2011
Posts: 18354


Ilee, in the very beginning of my illness, ~1986 and 1987, I had three episodes of dimming of vision. Not blurring, but dimming, as if I were seeing everything with a 40 watt bulb. The ophthalmologist could find nothing wrong. I had no hallucinations or floaters in those days. Each episode lasted about a month, and my vision returned to normal spontaneously. After the third episode, I never have had such dimming.

I think it will be very helpful to you and the doctors for you to keep a journal, since your symptoms fluctuate so much.

Iris L.

llee08032
Posted: Saturday, October 3, 2015 8:43 AM
Joined: 5/20/2014
Posts: 4408


There is this other symptom also (must be related to vision) where I miss things. For example, I will be looking for something and it will be right in front of me and I don't see it. I'll move around environment searching and then when I return to the original place I began looking I find it and cant figure out how I didn't see it. I also miss important points in emails, reading, posts etc.
I could do better at keeping a journal of these things.

I just accidently hit the wrong key and can't figure out how to fix it.

Mimi S.
Posted: Saturday, October 3, 2015 9:09 AM
Joined: 11/29/2011
Posts: 7027


HLlee,
I've been doing that for years, so I'm not sure it is AD. But it is getting worse.

Iris L.
Posted: Saturday, October 3, 2015 10:34 AM
Joined: 12/15/2011
Posts: 18354


Not recognizing something that is right in front of you is called agnosia, and is one of the seven A's of Alzheimer's Disease.

Iris L.

llee08032
Posted: Sunday, October 4, 2015 10:18 AM
Joined: 5/20/2014
Posts: 4408


Mimi, It is frustrating at times running back and forth and trying to find things that were in front of you the whole time. I think the important thing is to try to stay calm when this happens. If I'm hurrying and trying to find something the anxiety makes it worse and more confusing. Sometimes I will just sit down, take a breather and try to calmly think about where the item or object may be.

Iris, In my case I can't figure out if it's not recognizing what I've misplaced or not seeing?

Iris L.
Posted: Sunday, October 4, 2015 12:00 PM
Joined: 12/15/2011
Posts: 18354


Ilee, the ophthalmologist has determined that your eyes see well. It is that your brain does not interpret the images correctly.

Iris L.