Loading discussion content. Please wait...
I Have Alzheimer’s or Another Dementia
Hi, I'm new to ALZconnected and trying to get my arms around Alzheimer's Disease and the slew of other dementia types.
The following is from this website:
I hope it helps.
Research has shown that when amyloid beta is no longer cleared from the brain, it accumulates and can lead to neurodegeneration1,2 long before the first symptoms of Alzheimer’s disease start to become visible.3-6
This understanding of Alzheimer’s disease highlights the importance of early detection and diagnosis as a central component of future patient care.
It is believed that Alzheimer’s disease is based on the buildup of two proteins in the brain—amyloid beta and tau—thought to be caused by advanced age and/or genetic factors.1,7-9
One of the pathological hallmarks of Alzheimer’s disease is the abnormal accumulation of amyloid beta, due to an imbalance in production and inadequate clearance in the brain.1,7,9
While beta-amyloid plaques are a hallmark of Alzheimer’s disease, amyloid beta exists in multiple forms, including1:
It is unclear whether all or only some of these beta-amyloid forms are damaging to the brain, but there is evidence to support that aggregated forms, such as oligomers and plaques, may be toxic to nerve cells.1
In people with Alzheimer’s disease, the presence of amyloid beta is believed to trigger a pathological cascade that may promote the abnormal phosphorylation of tau protein, which leads to the formation of neurofibrillary tangles within neurons.7
Together, abnormal accumulation of beta-amyloid plaques and neurofibrillary tangles can impair neuronal function because of neuronal and synaptic loss (atrophy) in the brain, and may cause neurodegeneration.1,7
Dementia is becoming epidemic-why? Why is amyloid beta "no longer cleared" from some brains and not others? Why are women disproportionately affected? Why did these diseases' meteoric rise start with my grandparent's generation (it is not an issue of identifying)? How "long before symptoms of Alz start" does this accumulation of amyloid beta happen? Is this manifested in subtle personality changes? Does the amyloid beta -cause-the mis-processing of tau? How is early detection ever going to be possible with insurance companies, and thus our massively for profit only health care system, completely resistant?
And that's just for starters.
I found one of the best explanations of the amyloid buildup in this book
Dr Dale E. Bredesen, MD has written and excellent book The end of Alzheimer's.
He has really gone in depth in researching Alzheimers and has some excellent theories as to why it has become more of an epidemic in these days, and is on the cutting edge as to what we can do about it.
The book is available from Amazon. Also in kindle. It is quite a detailed book.
I have the book in kindle and hardback. It really helped me understand some of the dynamics of dementia and actually offered some help where we could find no other.
I think it may be unreasonable to come to the conclusions you have come to.
You have made a blank and unjustified statement.
I have come to this board seeking help and answers.
I found the book helpful in its explanation of a amaloid plaque and many things which I questioned about the conditions surrounding Alzheimer's and Dementia.
I am a seeker of solutions and help as you are.
I am really hurt by this blast. Please do not dismiss me in this way.
I am not hawking any book of a questionable nature. I am just sharing something's which I am finding useful in my quest to cope, as a caregiver and friend of one who has dementia.
I am still seeking answers, help and friendship, which I have found at this forum
I cannot believe there are people who are so insensitive here.
I guess that is life, but we do not need this kind of thing when our hearts are heavy with all that we face with a friend who has dementia.
I am not letting this make me leave the forum. I have already found answers and consolation here, for which I am very grateful.
Please let me stay.
Just to tell you why i came to this forum,
My Mum had dementia when she died age 97. My best friend has been developing symptoms of dementia, and i am looking for answers and other peoples experiences. This is a terrific forum.
I also signed up once, to this forum, and asked a question of the other participants, and forgot my password . So i may be also developing symptoms of the disease.! I signed up again,with this username, and wrote my password down.
This is a wonderful place and i am looking forward to learning and sharing.
Welcome to our world, newbies. I am so glad you found our site.
There is a lot of information available about tau and amyloid. Currently, one has to have evidence of amyloid to have a definite diagnosis of Alz. Since this is difficult to find out without expensive tests.
Some folks find out years later that they don't technically have the disease. Some of these feel they have misled others. They should not. They now something is wrong. perhaps someday there will be a new definition. An amyloid Alzheimer's and a non-amylid variety.
I find it interesting that someone else with a user name starting with "Alice" also posted today on the Clinical Trials board hawking the same book.
Feel free to post about other subjects, if you're not just here to sell it then post about other things.Just pointing out facts. Stop trying to sell that book.
I bought that book and it's very informative and easy to read. My mom had alz and passed on and I didn't put her on that diet due to, a little late in the game. Thank you
Bless you, MissHer!
My Mom passed on before we had the book or knew anything at all about her symptoms or what to do about dementia..
This has all been a learning experience for me.
It is SO difficult to watch someone suffer the different symptoms of dementia/Alz.
First I had to watch my Mom and suffered with her, and now my best friend is beginning to have the same symptoms .and it is agony as a caregiver, because we so much want them to have the best possible life.
So I am just trying to learn everything I can, and be of whatever help I can be to whoever crosses my path.
I think the book had some tips to follow, but quite difficult to do in practice..like limiting sweets when they are craved so much. Like fasting 16 hours, when it is difficult to do.. But all these little things we learn from each other, and especially the support we find when we are being crushed by it all ..well, they help,us get through it all.
Thank you for your kindness.
Please read my posts, please.dayn2nite2
I mentioned that I signed up once and forgot my password and had to sign up again. I am not trying to sell the book. Please please please try to understand. I am trying to tell you everything..to open my heart here..I am not hawking anything. Please read my posts.
I posted another one following this one. I hope it is ok. I do not want to upset anyone.
I am so sorry I offended you. I am so sorry for anyone who has to suffer through caring for someone with Alz/ or dementia. I am so sorry for the loss of your Mom to The disease. I also lost my Mom. It is agony seeing another suffer through this.
This is the second time I am experiencing this as now my best friend is showing symptoms. I feel so helpless to do anything. and it is not fun. I am just trying to learn everything I can and find a place where I can find support and give support.
Thank you for trying to understand, I hope.
Got a reply
It was a post asking for I pad helps..
Thanks to all for kindnesses
I had a simple answer to your post, when first reading it over the holidays, but now with some good additional comments, I realize that a more complicated answer is necessary.
One of the big questions in Alzheimer's disease is what role does amyloid play in the disease. The most likely explanation is that amyloid (especially amyloid oligomers) can contribute to the disease but are not the main cause. Thus some people can have significant amounts of different forms of amyloid in their brain without having Alzheimer's disease and some people have very little amyloid in their brain and still have Alzheimer's disease.
Oxidative stress precedes and contributes amyloid formation in the brain (it also inhibits the clearance of amyloid). Many factors contribute to oxidative stress in the brain including but not limited to a diet high in sugar, carbohydrates, and salt, environmental toxins, various medications, and a stressful life. Dr. Bredesen has identified 36 such factors. In addition to trying to reduce exposure to these risk factors, his protocol also involves the use of antioxidants. His list is not likely complete and a few of the risk factors that he identifies may not be actual risk factors. And there may be more effective antioxidants (such as compounds found in panax ginseng and in some essential oils via aromatherapy) than the ones on his list.
The misfolding of amyloid and tau proteins may be contributing factors to Alzheimer's disease but they are rarely the sole causes. Most likely that is why efforts to go after these proteins has not resulted in any real progress against the disease.
Welcome to our world Vic. I'm so glad you found our site and sorry to hear about your recent diagnosis.
To prevent toxic amyloid build-up, here are some suggestions:
Use aromatherapy. (Read Lane Simonian)
Eat more spices that have anti-inflammatory properties, Turmeric is one.
Eat yogurt. The good bacteria in yogurt fights bad bacteria, that are believed to go from the gut to the brain and cause inflammation.
You can drink Kefir milk, its like yogurt, but stronger. You can also get Kefir coconut water if you can't drink milk.
Be sure to brush and floss daily, or use a waterpik, rinse with warm salty water or a mouthwash to kill germs, prevent dental infections which can get into the bloodstream.
You can go outside and get the benefits of the full spectrum of 'light', which includes NearInfraRed light. NIR light only comes from the Sun, and specialty lights. Regular light bulbs don't give the benefits that sun exposure does.
Exercise, (check out KeepIt100's posts)
Then there are a whole bunch of clinical trials you can join, and retail products you can try.
Reasoning for Seasoning. Copied and pasted from Lane Simonian's post. Spacing added by me.
Certain spices and foods have anti-inflammatory properties which interrupt the pathways of inflammatory disease, including Alzheimer's (me: summarizing)
" extensive research in the last few years has shown that the pathway that activates this transcription factor can be interrupted by phytochemicals derived from spices such as:
red pepper (capsaicin),
basil and rosemary (ursolic acid)
garlic (diallyl sulfide, S-allylmercaptocysteine, ajoene),
and pomegranate (ellagic acid).
"The activation of nuclear transcription factor kappaB has now been linked with a variety of inflammatory diseases, including cancer, atherosclerosis, myocardial infarction, diabetes, allergy, asthma, arthritis, Crohn's disease, multiple sclerosis, Alzheimer's disease, osteoporosis, psoriasis, septic shock, and AIDS.
Extensive research in the last few years has shown that the pathway that activates this transcription factor can be interrupted by phytochemicals derived from spices such as turmeric (curcumin), red pepper (capsaicin), cloves (eugenol), ginger (gingerol), cumin, anise, and fennel (anethol), basil and rosemary (ursolic acid), garlic (diallyl sulfide, S-allylmercaptocysteine, ajoene), and pomegranate (ellagic acid).
For the first time, therefore, research provides "reasoning for seasoning."
A device called Vielight uses a special 'red' light that is outside a human's visual capability to see, to get past the bones and into the brain somewhat. I can tell you more but now I need to eat lunch.
If you follow Lane, in the clinical trials post, I believe he has posted some studies that show that essential oils like Rosemary are peroxide nitrate scavengers. He can recommend essential oils scents for particular situations.
Its not the amyloid itself, that seems to be the problem, its only under certain conditions which are triggered by peroxide nitrate, so if you can decrease that, less toxicity should be the result.
If you have a recent ipad (2017+) there is software called ALZlife, which has light and sound that flickers at 40 cycles per second.
Its not free, its like 13 bucks per month, and the improvement won't be immediate or spectacular *, but you can google it and read some reviews of people who have used the light alone, and seen some improvements.
If your ipad is older, I think only the audio works, but that does still have benefits, just not as much as the combined therapy.
If you do try the ALZlife app, its critical that its the only light source in the room, you don't even need to play the brain games, exposure to the light itself is what has helped people.
There is anecdotal evidence on the light only Flicker therapy, and partial successes from early, trials, 2 of 6 people had less plaque overall than they started with.(-4.5 % less for one person, 12.5% less for the other).
Once they found out that light and sound produces better results, they stopped testing light flickering only.
There are also some really cool clinical trials happening, by Vielight, and other PphotoNeuroModulation (PNB) studies.
As well as a non-toxic serum (from a greek plant used for medicine since the 1800's via twice weekly injection,
there are gene therapy trials,
and more studies on existing drugs repurposed to treat Alzheimers, most significantly, Singulair, check out Larry-the-Runner's post for more.
* In the story I read, the father in a family was using a flickering light device created by an independent individual who designed and built it, the father didn't think it was doing anything, and he didn't like wearing it. 3 months later, the family is back from a vacation, and they get in contact with the designer again, during the vacation, the father experienced a big drop in memory, awareness and MOOD. The family asked for the device back. It hadn't been making him better, per se, it had been keeping him from getting worse.