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How to explain times of lucidity in dementia? (Question for JAB and everyone)
onward
Posted: Tuesday, January 3, 2012 11:15 AM
Joined: 12/20/2011
Posts: 217


Caregivers sometimes report witnessing occasional, unusual periods of lucidity in people with dementia.

Any ideas on why this happens?

Any theories on how it might be encouraged or even perpetuated?

 

Thanks.


Lane Simonian
Posted: Tuesday, January 3, 2012 1:52 PM
Joined: 12/12/2011
Posts: 4813


This is a question that has been on my mind for a very long time.  Certain antibiotics have shown effectiveness in the treatment of Alzheimer's disease and it is possible that in some cases that the person with Alzheimer's disease was suffering from an infection and was receiving high doses of antibiotics.http://www.alzforum.org/res/for/journal/balin/default.asp (see bottom of page).  I doubt, however, that this explains all cases (or even most cases) of lucidity.  I will be intereted in reading other possible explanations.
skericheri
Posted: Friday, January 6, 2012 5:59 AM
Joined: 12/10/2011
Posts: 287


I was so lucky...Charlie was relatively 'with it' during most of his A/D journey.  There were times when he seemed less compromised.  In hopes of finding ways to continually  maximize his abilities,  After journaling things like medications and vitamins given. I learned that no one thing was responsible...and...Came to the conclusion that his brain might have become lazy and reacted favorably to changes in his regimen as opposed to a specific change.

 

Eventually I decided that those periods of increased performance were a gift from God to be treasured and enjoyed.

 

 



Lane Simonian
Posted: Friday, January 6, 2012 10:21 AM
Joined: 12/12/2011
Posts: 4813


I was wondering what vitamins and medications your loved one took and if that may have contributed to slowing the progression of Alzheimer's if not necessarily to moments of greater lucidity. 

 

Undoubtedly, the environment plays some role in the overall quality of life for Alzheimer's patients http://www.alzheimersreadingroom.com/2011/10/why-do-alzheimers-patients-have-lucid.html Whether bright lights, exercise, and music extend beyond mood to affect moments of lucidity, I don't know.  Greater exposure to sunlight might increase Vitamin D levels which may be linked to improvements in Alzheimer's patients.  Exercise may increase blood flow to the brain which may be helpful. 

 

What changes in regimen helped Charlie?  Maybe if more people provide insights such as you have,  we could come closer to explaining moments of lucidity in Alzheimer's patients.


skericheri
Posted: Friday, January 6, 2012 1:31 PM
Joined: 12/10/2011
Posts: 287


Sunlight, his favorite music, and up beat interaction with others always brought out the best in Charlie.   

  .

He often seemed less compromised when he received a dose of a prescribed cold medication or a prescribed pain medication.  An OTC NSAID also produced similar results. I gave these medications to Charlie as needed for their intended use and noticed that none always produced increased lucidity.

 

Supplement wise we regularly used Vitamin B; D, Cinnamon, Fish Oil as well a Coconut Oil.  Occasionally…during periods of increased losses…I would discontinue one for a week or so and then reinitiate in the mix.  It may have been my imagination…but,…He often appeared to return to his prior base line.

 

Charlie, who could not take A C inhibitors like Aricept,  participated in the Dimebon clinical trial from 08/08 until they discontinued his group in 03/10 and basically held his ground.  I considered attempting to purchase Dimebon on the black market.  The fear of receiving counterfeit product and the fact that the prohibitive cost would have threatened our economic survival caused me to dismiss the notion.  Once his medication supply ran out things appeared to go into a slow downhill spiral
JAB
Posted: Friday, January 6, 2012 5:27 PM
Joined: 11/30/2011
Posts: 740


Onward, I have no answers for you.  I've kept a detailed journal for several years, including things such as the weather (hot, cold, sunny, cloudy, humid, dry), diet, exercise, activities, medicines/supplements, illnesses, etc etc etc and there just doesn't seem to be any sort of pattern that I can detect.

 

Stress definitely makes his symptoms worse, that's always been obvious, so perhaps lucidity is from decreased stress ... ?

 

The truly strange and intriguing observation is that end-stage patients who are actively dying may have a period of marked lucidity.

 

I like Cheri's conclusion.


Lane Simonian
Posted: Friday, January 6, 2012 8:03 PM
Joined: 12/12/2011
Posts: 4813


Thank you, Cheri for all the information.  I am a great believer that individual observations about what helped a loved one is part of the key to understanding Alzheimer's disease.  You did all the right things, which perhaps brings some consolation. 

 

It is my belief that with the right combination of therapy and compounds the progression of Alzheimer's disease cannot only be slowed down but partially reversed.  This is because the oxidation of key systems and the nitration of proteins which occurs during the disease can be partially eversed.  Even neurons can be regenerated in the hippocampus.  The idea that Alzheimer's disease cannot be treated (and will never be treated) past a certain point is a misplaced conjecture.

 

As JAB noted, lucidity in Alzheimer's patients sometimes occurs right before death.  I know that from my own family.  Lucidity near death can be the result of either antibiotics or other medications used to treat a life threatening illness in an Alzheimer's patient or it can be due to alteration in brain chemistry right before death.  One compound--dimethyltryptamine--has been associated with near death experiences and may be at least one chemical change that explains increased lucidity near death.

 

My more hopeful point is this, there are a number of things that can be done to improve the lives of Alzheimer's patients and not all of the damage done by the disease is permanent.  The key is to find those compounds that gradually increase lucidity for people with Alzheimer's disease (here's a possible short list: dimethyl compounds--Dimebon and Namenda for instance, or better yet ketone bodies from coconut oil and phenolic compounds in cinnamon extract, grape seed extract, in various essential oils, etc., and Vitamins B, C, D, and some forms of E).   

 

 

 


homer100
Posted: Friday, January 6, 2012 9:13 PM
Joined: 1/4/2012
Posts: 4


I was thinking that it may be  because the patient actuallyt has vascular dementia, or at least dementia is due partially to vascular issues such as blood pressure which narrow the blood vessels but dont necessarily cause things such as strokes or even mini strokes which would be seen by MRIs etc. If blood pressure improves somehow or one took fish oil  for example, one might see improvement.

Also,Lane, i am fascinated by what u had to say re antibiotics at the end of life. I know that some of the research I have read described either autoimmune mechanisms(and in that instance the body does begin by fighting a true pathogen or invader of the body, and then the body begins to attack itself.) or research that actually talks about infection as direct cause of dementia. The blood brain barrier is not so strong and the body will attack the brain.

In that case, the pathogens may go directly thru the blood brain barrier and attack the brain directly. in either case, perhaps, the administration of antibiotics could have a positive effect.i  think i once posted some research re the plaques possibly being the body's defense against pathogens which appear  in the brain.That would make the plaques an attempt the body makes to help itself!

Perhaps relevant to idea of infection-My mom's story of last half year is this:She had shown signs for past ten years of slow moving dementia.A doctor, using Intellectual testing, dx her alzheimer's in august of 2011. In Sept, she had a series of  hospitalizations, starting with fainting from aricept, and  a resulting fall.  In hosp, she became agitiated, developed  paranoia and   delirium, which got progressively worse. At a certain point, she began yelling, screaming in a fog, unable to stop herself. The screaming was rhythmic, uncontrollable and tourettelike(i know tourette's  wellfrom a family member!).She also had   hand wringing which seemed unusual to me. In the hospital, it was seen that she had a high white blood count, and she was treated for cdif, tho conclusive tests were never done. The ranting behavior still went on for some time, along with certain delusional and aggressive behavior, but it lessened.(Behaviorally, she now needs to take 2.5 zyprexa to keep delusions at bay). I happened to think, and still think, that she had sydenham's chorea or 'pandas' which is seen only as pediatric condition and is often a cause of tourette's or ocd. Both however, are caused by strep. They never tested her for strep tho. They did use strong antibiotic therapy, tho the kind of meds was specifically for Cdif.


Lane Simonian
Posted: Friday, January 6, 2012 11:59 PM
Joined: 12/12/2011
Posts: 4813


I am glad that your mother is doing better.  I have almost no background in infectious diseases, but your explanation for what happened to your mother certainly seems plausible: strep may have caused many of her symptoms.  Many of the behavioral issues exhibited by some Alzheimer's patients may be the disease plus something else. 

 

I am curious, Homer, what kind of antibiotics were used? Beyond apparently treating part of the cause of the delusions, did they produce a greater clarity of thought?   

 

Here's why I think certain antibiotics may be effective in the treatment of Alzheimer's disease.  I believe the main cause of Alzheimer's is toxin called peroxynitrite.  Peroxynitrites may develop in response to a bacterial or viral infection (other factors that contribute to peroxynitrite formation are high blood pressure, high glucose levels, the APOE4 gene, presenilin gene mutations, bisphosphonate osteoporosis drugs such as Fosamax, late estrogen replacement therapy, mercury, aluminium fluoride, and stress).  Unfortunately, peroxynitrites cause a whole series of problems in the brain including the oxidation of receptors involved in smell (olfactory), short-term memory (muscarinic acetylcholine), sleep (melatonin), mood (serotonin and opioid), social recognition (oxytocin),  behavior (adrenergic), and alertness (dopamine).  Certain antibiotics scavenge peroxynitrites and perhaps reverse some of this oxidative damagehttp://www.ncbi.nlm.nih.gov/pubmed/9018471 

http://www.nature.com/npp/journal/v32/n11/full/1301377a.html 

http://www.jbc.org/content/286/7/4991.abstract 

 

Unfortunately, what I don't have from the previously cited case studies is the knowledge of what antibiotics were used.  If anyone has seen improvements in cognitive function/lucidity in their loved ones after the use of antibiotics, perhaps they could post the information in this thread on what antibiotics were used.


onward
Posted: Saturday, January 7, 2012 11:47 AM
Joined: 12/20/2011
Posts: 217


Thanks very much to all of you who've shared your observations and ideas in this thread.

 

... The issue of possible improvement from antibiotics has been raised. As some of you remember, this was discussed in the old forum, and scientific studies were cited that noted improvement from a couple of specific antibiotics.

 

If I remember right, someone (swarfmaker???) tried one such antibiotic and reported what seemed to be some possible improvement.(???)  Wish we could get an update on that.

 

Of course there are also various downsides to antibiotics, and that needs to be noted, as I think JAB pointed out on the old board.

 

It sure would be a help if the moderators would quickly restore access to the old boards, along with a good search function, so that we can easily review all that previously discussed info.


JAB
Posted: Saturday, January 7, 2012 12:57 PM
Joined: 11/30/2011
Posts: 740


Well, in the meantime, you can refresh your memory of some of it with several review articles...

 

Possible roles of chronic infections in neurodegenerative disorders:

http://www.medscape.com/viewarticle/574944

http://www.bjmp.org/content/role-chronic-bacterial-and-viral-infections-neurodegenerative-neurobehavioral-psychiatric-au

http://www.bjmp.org/content/role-chronic-bacterial-and-viral-infections-neurodegenerative-neurobehavioural-psychiatric-a

http://www.agehealthy.org/pdf/frontmatter_1017.pdf

http://www.biomedcentral.com/content/pdf/1742-4933-7-16.pdf


Antibiotic resistance:

http://www.biomedcentral.com/1741-7007/8/123/abstract

http://mmbr.asm.org/content/74/3/417.full

http://aac.asm.org/content/55/8/3649.full

http://www.bmj.com/content/340/bmj.c2096.full

http://rspb.royalsocietypublishing.org/content/early/2011/10/25/rspb.2011.1933.full




Lane Simonian
Posted: Saturday, January 7, 2012 7:22 PM
Joined: 12/12/2011
Posts: 4813


Thank you JAB for the articles on the role which pathogens may play in Alzheimer's disease and on antibiotic resistance. I joined the old boards late, so I particular miss having access to the wealth of information contained there. 

 

I don't advocate the use of antibiotics to treat Alzheimer's disease in part because I worry about the consequences of using such high levels to possibly achieve better results in regards to lucidity.  I just like to suggest that certain antibiotics are one of many peroxynitrite scavengers that could provide an effective treatment for Alzheimer's disease.  http://www.ei-resource.org/articles/chronic-fatigue-syndrome-articles/the-no!-oh-noo!-theory-and-suggestions-for-treatment/ If you read through this tract it contains many of the compounds that have been reputed to have a positive effect on Alzheimer's patients.  I only use aromatherapy with my mother because she tolerates it well and has done much better over the four years since we began its use.  This does not mean, however, that it will be well-tolerated by everyone.

 

The following piece is lengthy, so I just wanted to quote from the most relevant section.http://lpi.oregonstate.edu/ss01/neuro.html "[Beckman's] group discovered a new biological oxidant called peroxynitrite (ONOO-) produced by inflammatory cells to kill parasites, viruses, bacteria, and cancerous cells.  While important for defending against infection, peroxynitrite is also a component of oxidative stress that has been strongly implicated in atherosclerosis, lung disease, heart attack, stroke, trauma, organ rejection, Alzheimer's disease, Parkinson's disease, multiple sclerosis, and ALS."  One of the problems with peroxynitrites is that it damages the body's own defense systems against the diseases it helps cause http://www.sciencedaily.com/releases/2011/09/110930195137.htm 

http://www.nature.com/nm/journal/v10/n7s/full/nrn1434.html 

The provision of external antioxidants (especially peroxynitrite scavengers) provides a potentially critical avenue to treating Alzheimer's disease, as well as several other diseases in which peroxynitrites appear to play a prominent role.


amelia99
Posted: Saturday, January 7, 2012 9:52 PM
Joined: 12/1/2011
Posts: 6


Swarfmaker was the one who got a RX for his father for a daily antibiotic for demetia. I believe it was Doxycycline and the dosage was 100mg a day, if I remember right. The other antibiotic that is reputed to be helpful for dementia is minocycline. There is much about this on the old message board and hopefully we'll soon have access to this.
amelia99
Posted: Saturday, January 7, 2012 10:23 PM
Joined: 12/1/2011
Posts: 6


Onward, as to your question about periods of lucidity. I have observed in my lady that after a seizure, she improves for a while. When I questioned her PCP about this, he said that a seizure is like an electric shock treatment. It fires up the brain cells for a while which is why you will see an improvement. During a seizure, the cells are releasing all the neurotransmitters and everything else at once during the electrical brain storm. The cells may get something they are lacking and then they work correctly for a while.

 

 In someone who doesn't have seizures, they may eat something or take something that improves the synapses between cells and then they work right for a while. Maybe some sunlight, or exercise, or a food causes a reaction and the cells get what they need for a time. Maybe an antibiotic or some other medicine that keeps some brain inflammation at bay for a while  could be a reason

 

Another explanation could be that since we can regenerate new neurons in the brain, maybe they have some new ones that made it to adulthood, so to speak, and these are able to make connections to neurons that have lost their other links but aren't dead yet. The memory in these is then accessed.

 

This is just conjecture on my part. Very interesting to think about. Maybe if scientists could study AD from this angle, they might find more answers.


homer100
Posted: Sunday, January 8, 2012 9:52 AM
Joined: 1/4/2012
Posts: 4


lane- i am afraid i dont remember or didnt take note of what antibiotic my mom was given- i need to get her records.
onward
Posted: Sunday, January 8, 2012 10:59 AM
Joined: 12/20/2011
Posts: 217


amelia99 wrote:

Very interesting to think about... 


 Very interesting indeed. Thanks, Amelia (& all).


JAB
Posted: Sunday, January 8, 2012 4:16 PM
Joined: 11/30/2011
Posts: 740


amelia99 wrote:
Swarfmaker was the one who got a RX for his father for a daily antibiotic for demetia. I believe it was Doxycycline and the dosage was 100mg a day, if I remember right. The other antibiotic that is reputed to be helpful for dementia is minocycline. There is much about this on the old message board and hopefully we'll soon have access to this.

Amelia, were those the antibiotics that were specifically for treating Helicobacter pylori?  I remember swarf was particularly interested in the hypothesis that H. pylori might play a role in triggering dementia, but the protocols for treating that particular bug involved two or three antibiotics and might be expected to be very hard on a loved one with dementia ... and if I recall correctly, that's why he decided to start off with just one.  He was also very big on broccoli sprouts for treating H. pylori, too.  Wasn't it his father who died?  I remember he was so very discouraged after that, so sad.

 

Anyway, there have been many different pathogens linked to dementia, but very little solid evidence of a causal relationship ... and clinical trials designed to evaluate the use of different antibiotics for treating dementia in patients known to be infected with a linked pathogen have produced inconsistent or conflicting results.  It's still a very active area of research, however, and one that's very intriguing.



AlphaLeah
Posted: Sunday, January 8, 2012 4:22 PM

I believe that there is an aspect of dementias that has to do with neurochemical imbalances and that the symptoms we see are not solely related to changes in brain structure.

We're able to diagnose structural changes post-mortem and therefore place a great deal of importance on them. But I've recently read a number of articles about how there are people whose brains, upon autopsy, reveal a structural changes associated with dementias but who did not exhibit dementia while living.


Also, most of the research on ALZ is (understandably) directed at the brain. Importantly, our digestive system has an entire nervous system of its own that is in direct relationship with the brain. So I wonder what role the functioning or lack thereof of our digestive systems might have on adequate production of certain neurochemicals. This is not to mention our thyroid, parathyroid, adrenal and other hormone producing glands and what their role might be. And then there is inflammation. Inflammation has a role in so many disease processes, I can't help but believe it does in dementias as well.


So I think there is a great deal more to learn.

Finally, it's been remarkable to me with my maternal grandfather (vascular dementia), my paternal grandmother (ALZ) how they were able to "pull it together" for short periods of time, with a great amount of will power or something. However, these short periods were not something I could predict and appeared to be dependent on internal forces within them rather than "special occasions" or the like. But I am grateful for whatever it is that made them possible, because during one of these episodes of clarity during the end-stage of my grandmother's illness, I was able to say goodbye to her and tell her how much I loved her and how I knew always how much she loved me. And she was right there, fully present for those few minutes.


JAB
Posted: Sunday, January 8, 2012 4:29 PM
Joined: 11/30/2011
Posts: 740


Amelia, I am quite enchanted by your seizures hypothesis. 

 

 Virtually every kind of seizure disorder can develop in Alzheimer's patients, and they can develop at any point in the progression.  There is some evidence, in fact, that they may precede dementia symptoms.  Many of us tend to think of epileptic seizures when we hear the word, but some types of seizures are so mild that the symptoms they produce are not readily detectable.

 

We have had a number of caregivers report improvement after a seizure.  And electroconvulsive therapy (ECT), which causes a brief seizure in the brain, is sometimes used for severe behavioral problems that do not respond to other treatments in dementia patients, and can cause improvements in cognitive function.

 

Transcranial magnetic stimulation induces a much smaller electric current in a specific part of the brain without causing seizure or loss of consciousness.  It has been used to treat depression, and is under study for treating Alzheimer's.

 

Naturally, the links I've kept in my files are to the threads in which we discussed this, sigh.  I do hope that when the archives finally become available, the thread URLs will still work.


homer100
Posted: Sunday, January 8, 2012 6:24 PM
Joined: 1/4/2012
Posts: 4


yep, i know what u mean re fully present.

re the intestinal system. It is true and it reminds me how the research of other disorders such as autism,tourettes etc focus on the allergies and autoimmune mechanisms that begin in the intestines where proteins are broken down or not, and where a huge amount of bacteria reside.  I think celiacs (an autoimmune disorder)have a great deal of neurological symptoms. There isnt causal relationship proven,but pub med has lots of studies ithink.