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On Pluto by Greg O'Brien
Mimi S.
Posted: Friday, May 1, 2015 7:16 PM
Joined: 11/29/2011
Posts: 6863


On Pluto by Greg O’Brien


Let’s read it together. Ask your librarian if it comes in a oral edition.


It’s not at all what I expected.


These are my notes/thoughts so far.


Introduction written by Lisa Genova of Still Alice fame. They have become the best of friends.


He is many times award winning journalist and writer. Lives on Cape Cod.


What is NMDA, a receptor regulator???


His journey began with a serious head injury that exposed an already proceeding brain shrinkage.


He writes about Glen Campbell Have you listed to I’ll be Me.”


He also writes about Pat Summit. She wrote not to expect a pity party from her.


His maternal grandfather and mother had it, as well as combined with other diseases at the end of his dad’s life.


Greg O’Brien also has cancer which he has chosen not to treat.


We’ve all heard of cognitive reserve. I’ve taken it to mean those with higher IQ’s, thus more in their brain, could stand to lose more than most people and still be fairly with it. His doctors seem to have a different interpretation. Each of us has so much in our brain. We need to conserve it. More like when you use it, you lose what’s there and so like your gas tank, someday it will run dry. I don’t like that interpretation.



The left side of the brain is the most affected. That’s the side for executive function, judgement (I thought they were the same). balance, continence, short term memory, financial analyses and recognition of friends and colleagues. (sounds familiar.) He practices daily exercise and writing. (Two parts of our Best Practices.)


The Pluto metaphor: Pluto’s orbit, like Alzheimer’s has a chaotic orbit.


There’s an old Irish saying: never get mad, get even. That’s what his doing to AD.


He says Ralph Waldo Emerson had AD.


Greg was diagnosed in 2009.

He has the ApoE4


Meds:

23 mg. Aricept.Remember when that was a big topic here?

20 mg. Namenda

50 mg Trazadome for sleep

20 mg. Celexa to control rage.


Beginning on page 14 there is an interesting discussion :

Once you begin to lose synapse which is the ability of the brain to pass a signal and once neurons are lost, the brain cannot recover. (I don’t understand that. But I wondered about recent research I’d read about that said vigorous exercise rebuilds brain cells.) He then went on to say that exercising the brain builds new dendrites, pathways for alternate routes for synapses. So my question is: is this talking about physical or cognitive exercise, both of which we include in our Best Practices?


Up to Chapter 3. Anyone want to join me?


Or stop, we could care less.


Iris L.
Posted: Friday, May 1, 2015 10:18 PM
Joined: 12/15/2011
Posts: 15632


Here is an article written about this author, including a comment regarding checking for Lyme disease as a cause of dementia. Lyme disease is due to a spirochete, similar to syphilis, which can cause dementia in the tertiary stage, so it is not unreasonable to search for evidence of chronic Lyme disease.

http://artery.wbur.org/2015/01/07/greg-obrien-on-pluto



Mimi, I had not heard of this author. My library does not carry his book, but I will see if they can order it through the interlibrary exchange for me.

I am disappointed that patients are not immediately refered to a full regimen of BEST PRACTICES. They have done wonders for me, with 6 years of improvement as of this month.

Iris L.

Mimi S.
Posted: Saturday, May 2, 2015 8:36 AM
Joined: 11/29/2011
Posts: 6863


Iris,
So far in the book I've not come across any reference to Lyme disease. Nor is it in the article.

The first comment does make a reference to it. It is true that dementia, especially short term memory, is part of Lyme Disease. I don't know that other symptoms that we patients have also go along with this disease.

And I also disagree with the part of the article that the book Still Alice focuses on suicide. Yes, it's there but, as I recall (hah!) isn't it's main focus.

Lane Simonian
Posted: Saturday, May 2, 2015 10:14 AM
Joined: 12/12/2011
Posts: 4420


Iris and Mimi, so many good points and interesting questions here.

Spirochetal infections can increase the risk for Alzheimer's disease (syphillis for certain, but Iris is right Lyme disease should be studied as well).

http://www.jneuroinflammation.com/content/8/1/90

Neurons can regenerate in the brain via the phosphatidylinositol 3-kinase/Akt pathway. This is one of the pathways blocked in Alzheimer's disease. Exercise helps stimulate this pathway and antioxidants help this pathway function again.

http://www.ncbi.nlm.nih.gov/pubmed/19936256

This is one of the reason Best Practices is so important because it combines exercise with an anti-oxidant regiment to ensure the production and survival of new brain cells.

The NMDA receptor (N-methyl-D-asparate is one of its agonists) plays a major role in Alzheimer's disease. Its activation (by peroxynitrites) plays a critical role in the death of neurons. I just found out that most mice genetically engineered to produce high levels of amyloid and tau tangles are genetically resistant to excitotoxicity (the damage done to the brain caused by NMDA receptor activity). So the mice have much less neuronal cell loss and memory loss in human beings with Alzheimer's disease despite having the same levels of amyloid and tau tangles. The "disease" is thus much easier to reverse in mice and things that work in mice often don't work in human beings.

Namenda is an antagonist of the NMDA receptor, but not a particularly good one. Eugenol in various essential oils (via aromatherapy) and ferulic acid in Panax ginseng are much better NMDA receptor antagonists and this partially explains the positive results in human clinical trials.

http://www.ncbi.nlm.nih.gov/pubmed/9147382

http://onlinelibrary.wiley.com/doi/10.1111/j.1479-8301.2009.00299.x/full

http://www.ncbi.nlm.nih.gov/pubmed/16257184

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3659550/

I cringe every time I read an article saying that Alzheimer's disease cannot be reversed past a certain point and that nothing has ever slowed down its progression or reversed the disease. There is currently no cure for Alzheimer's disease, but there are effective treatments.



Mimi S.
Posted: Saturday, May 2, 2015 11:09 AM
Joined: 11/29/2011
Posts: 6863


Thanks for the clarification, lane. Some of which I understand and some is now beyond me.

I cringe every time I read an article saying that Alzheimer's disease cannot be reversed past a certain point and that nothing has ever slowed down its progression or reversed the disease. There is currently no cure for Alzheimer's disease, but there are effective treatments.

I too cringe. I have two relatives, with some type of dementia, who believe that nothing can be done. In spite of seeing me because they reason, I'm obviously misdiagnosed. We know nothing can be done.

Re Lyme disease: my point was that possibly those who truly have dementia exhibit other losses than the short term memory loss of Alzheimer's. And those with Lyme Disease exhibit other symptoms that I've never heard of in those with dementia. I wonder if a test for Lyme Disease is routinely done at the major AD clinics. All the patient know is that they do draw a lot of blood.

Lane Simonian
Posted: Saturday, May 2, 2015 1:33 PM
Joined: 12/12/2011
Posts: 4420


The overlap between different diseases and Alzheimer's disease is not always clear cut. Each disease has its own characteristics but one of those characteristics in some circumstances may be progressive memory loss--that either mimics or is Alzheimer's disease. In the case of certain bacterial and viral infections, the body produces a defensive mechanism (peroxynitrites in some cases) designed to kill the bacteria or virus but which may over time end up killing brain cells.

More importantly is that people are making conjectures about Alzheimer's disease and then reasoning backwards. Alzheimer's disease is a progressive disease for which nothing can be done; therefore if a person has very slow changes or none at all or even improved it cannot be Alzheimer's disease.

I have a friend who was diagnosed with Alzheimer's disease as a result of a traumatic brain injury. A few years back she struggled to write coherently and could rarely remember anything that had happened the day before. Now she writes beautifully and has very few memory lapses. She uses aromatherapy, herbs, and has a healthy diet. Everyone tells her she was misdiagnosed. That's the mis-logic that is stopping most doctors and caregivers from being proactive against the disease. There is not one set of treatments that helps everyone, but with tinkering there are a set of things that can help most people.

Iris L.
Posted: Saturday, May 2, 2015 5:26 PM
Joined: 12/15/2011
Posts: 15632


Lane Simonian wrote:
There is currently no cure for Alzheimer's disease, but there are effective treatments.



Thank you, Lane, for your clarifications above and for your statement. I truly believe this statement. When I entered medical school over 40 years ago, our entering class was told the same thing about chronic disease. For most diseases, there may be no cure, but there are effective treatments. This is the case for common diseases such as diabetes and multiple sclerosis, and even the many various forms of heart disease.

Medication helps in part, so do lifestyle changes. I believe there is hope for Alzheimer's disease to be viewed as a chronic illness, and not a death sentence.

Thank you for continuing to encourage us, Lane!

Iris L.







Iris L.
Posted: Saturday, May 2, 2015 5:51 PM
Joined: 12/15/2011
Posts: 15632


I wanted to add, since I cannot edit my post, that the proof if the pie is in the eating. Meaning, that the proof of Best Practices is in the results that patients show.

I am doing better now, than 6 years ago, when I began Exelon patch in May, 2009. I had memory deficits and speech difficulties. I burned food and left the stove unattended. I regularly lost things and forgot to pay my bills. I wondered if I would have to move into an assisted living situation. My last experience with leaving the lit stove unattended was my impetus to begin Exelon patch.

Now, 6 years later, I am doing better. I am nowhere near cured, but I am doing better. I can use the stove. I take measures to monitor my use. I pay my bills. I live independently. I am satisfied with my treatment. If more treatment comes along, I will take it. But I am not despondent nor morose.

I feel enthusiastic and hopeful, most of the time. My only disappointments come from other people or authors who are morose and pessimistic about living with memory loss.

I am so glad I came to this board and learned about Best Practices, and that I found a neurologist who offered me a trial of Exelon patch and a geriatrician who offered me Namenda.

Iris L.



Lane Simonian
Posted: Saturday, May 2, 2015 6:38 PM
Joined: 12/12/2011
Posts: 4420


I could not agree more, Iris. There is a reason why people here have been able to do so well--and it is not just luck or that they were misdiagnosed. Alzheimer's disease can indeed be a chronic illness and not a death sentence.

Even though I have read it in some of your other posts and know it, it was still nice to read in one place the ways in which you are doing better, Iris. I like knowledge and inspiration and you and so many here provide both.

Mimi S.
Posted: Sunday, May 3, 2015 9:27 PM
Joined: 11/29/2011
Posts: 6863


Further thoughts on my reading of On Pluto will be on the same topic on the Younger Onset Board.
Controlady
Posted: Monday, May 25, 2015 10:15 AM
Joined: 5/22/2015
Posts: 4


Mimi- After reading the aforementioned dialogues, I am wondering if along with the memory issues, if you have frontoparietal lobe atrophy and you EEG shows synapse misfiring, would that not lead to a conclusion of Early onset AD or could it possibly still be one of the other things?

Mimi S.
Posted: Monday, May 25, 2015 11:06 AM
Joined: 11/29/2011
Posts: 6863


Controlady,

Early Onset has to do only with the age at which the person was diagnosed. It has nothing at all to do with the type of dementia found.

If I recall correctly, that would be you, but definitely not me.

I feel confident mine is the comm form of Alzheimer's that's why i could not understand why you had a neuro and nothing could be determined. That is often used to differentiate types as well as assess strengths and weaknesses.

My brain scan was normal for my age, but I was diagnosed at a very early stage before signs would normally show.i wonder what a spinal tap would have shown.

You might try reading either of the two books mentioned. Warning, some folks with Early Onset could not finish I'm Still Alice because it hit too close to home.

 
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