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I believe that it is time to declare a "War on Alzheimer's" - Without Delay
SandyHalperin
Posted: Friday, December 28, 2012 6:13 PM
Joined: 4/29/2012
Posts: 76


I believe that it is time, without delay, for both the US government and many in the private sector (public - private partnerships so to speak) to declare a "War on Alzheimer's" in search for cures... Alzheimer's does get funding, but certainly not the amount of funding that is provided to many other diseases. I am not saying to take money from the other diseases, but I do not believe that Alzheimer's has gotten the recognition that it is one of the leading causes of death in the United States and it is rapidly on the rise (baby boomers and all). It is said that Alzheimer's is the 6th leading cause of death in the US, but as many have mentioned to me, many docs do not list Alzheimer's as the cause of death of many, rather the death certificates say heart disease, cancer, diabetes, etc. --- all when the person has had Alzheimer's for many years. I hope that what I have stated is clear and understood. 

 

I am prepared to do all that I can do to help in my role on the Early-Stage Advisory Group of the National Alzheimer's Association --- and continue to work tirelessly when my term is up on the group in July 2013.

 

I believe that clear and personal awareness to the country's legislators (those that serve in the Senate and Congress) and President Barack Obama are key - it's time for not just talk and talk, and meetings and meetings - rather real tangible funding for curative research endeavors. 

 

Happy New Year and with my best regards,

Sandy


Mimi S.
Posted: Friday, December 28, 2012 6:36 PM
Joined: 11/29/2011
Posts: 7029


Sandy, Didn't know you were on this year's ASAG board. Lisa and I are alums. Hope to see you at the Forum in DC. I can just see you with your Congress persons.
Charee
Posted: Friday, December 28, 2012 10:00 PM
Joined: 11/10/2012
Posts: 10


Well said Sandy.  I have early onset Alzheimer's. My first issues started in my mid forties and all the doctors said I was too young. I have been a radio broadcaster for most of my career life, I first noticed issues when I could'nt memorize my news stories or react and update things as quickly as I used to. All the doctors blamed it on menopause. It took me two years to get my diagnosis, due to my young age, even with the poor scores on the tests the neuro -psych did. Finally a very smart and young Physicians Assistant forced the issue of a lumbar puncture with my insurance company and I did finally get my answers. I have had to give up a career I love and it just breaks my heart.

 

Yes, it is time. Time to delare war on this devasting disease; raise awareness about just how many people are living with it and most of all make accurate testing available so people can get the answers they need and can start fighting the disease earlier!

 

Thanks for listening!

 

Charee Tillotson


SandyHalperin
Posted: Saturday, December 29, 2012 9:03 AM
Joined: 4/29/2012
Posts: 76


Charee,

Yeah, so sorry to hear about the loss of your career - mine too.Believe me, I know how hard it must have been for you and I acknowledge how it dramatically changed your life.

 

We know that it is a devastating often "invisible" disease that causes other medical problems - and yeah, then the cause of death can often be listed as another cause. Stay strong and lots of folks are with you and I am eager to see our legislators (and President) finally declare a "War on Alzheimer's". It is not the time to not look the other way.

Stay in touch.

Happy New Year and my best regards,

Sandy


SandyHalperin
Posted: Saturday, December 29, 2012 9:07 AM
Joined: 4/29/2012
Posts: 76


Thanks Mimi - and yes, I am eager to sit before many legislators, even the President if I could. I really believe that it is time for our nation to declare a "War on Alzheimer's" from many fronts - and I want to help in any way that I can, as you are doing. 

I am open for any and all ideas on how to proceed... >>> and as said, I will do all that I can do. 

The national public relations related to having a "War on Alzheimer's" could be significant and draw lots of attentions of those that provide funds - public and private.

Best regards and Happy New Year,

Sandy


SandyHalperin
Posted: Sunday, December 30, 2012 5:55 AM
Joined: 4/29/2012
Posts: 76


Do any researchers on this blog have thoughts to write on what I have posted with regards to having a "War on Alzheimer's?" Thanks so much and Happy New Year, Sandy
Lane Simonian
Posted: Sunday, December 30, 2012 10:57 AM
Joined: 12/12/2011
Posts: 4855


I do have some views on this, but they are not very positive, so I have hesitated to post them.  I have my own myths of Alzheimer's and they go like this: 

 

Alzheimer's disease is such a complicated disease that it will take billions of dollars and decades to solve.  The solution requires a lot more money to be spent on the disease (this serves the interest of those researching and collecting money to research the disease and discourages those seeking answers on their own). 

 

Alzheimer's disease cannot be treated past a certain point (this serves the interest of those involved in the early testing of the disease and drug companies whose drugs have failed to treat Alzheimer's disease past its earliest stages and then with only very limited success). 

 

Alzheimer's disease can only be treated with patented drugs (this serves the interest of the pharmaceutical companies). 

 

We have no idea what causes Alzheimer's disease nor how to prevent it (this serves the interest of everyone who makes a living off of this disease). 

 

Here is some of the evidence that these are all myths.  

 

Alzheimer's disease can at least be delayed through a diet high in phenols (in various fruits, vegetables, spices, and essential oils) and polyunsaturated fats (such as fish oil without mercury). 

 

http://www.ncbi.nlm.nih.gov/pubmed/16266772 

 

Peroxynitrites--a toxic oxidant--is critical for the pathogenesis of Alzheimer's disease. 

 

http://www.jneurosci.org/content/17/8/2653.full 

 

Alzheimer's disease can be treated with peroxynitrite scavengers (for more information see my post on the subject). 

 

Nearly all the studies on peroxynitrite scavengers to treat Alzheimer's disease have come from overseas and they have all involved natural products.  In this country only a pharmaceutical solution--which unfortunately is based on a partially flawed understanding of the disease-- will do, and thus an effective treatment for the disease will not come for decades no matter how much money is spent on it. 

 

Happy New Year, anyway!  I greatly appreciate your advocacy, so don't let my pessimism get you down. 


SandyHalperin
Posted: Tuesday, January 1, 2013 8:12 AM
Joined: 4/29/2012
Posts: 76


Lane,

Thanks so much for your post and expression of your views, +++ appreciated. I understand what you are saying and I acknowledge your views and statements. 

The National Alzheimer's Association and many other Alzheimer organizations, associations and researchers on Alzheimer's have been incredibly and are dedicated to raising awareness and raising the amount of money that is needed for curative research.

I just feel and I want to do all that I can do to help - to help raise awareness, etc. And I believe that by our nation declaring a so-called "War on Alzheimer's" will help to bring Alzheimer's disease to a higher level of awareness among the legislative leaders in our country, and others. So much has been done, and I understand that it may take longer than most of us want it to for cures to help arrest the disease in those that are currently suffering or for those who will be diagnosed. 

So, I sit her today, optimistic that research is underway (some that I or we may be unaware of) that is in the curative arena --- or that more monies will become available so that additional research will be initiated.

Let's stay in touch and my best to you for a Happy New Year!  Again, thanks!


Sandy


Mimi S.
Posted: Tuesday, January 1, 2013 8:29 AM
Joined: 11/29/2011
Posts: 7029


As the bracelet says that's on my wrist: A REASON FOR HOPE.

May the New Year be the best possible for all of us.

May we be joined by the thousands of Early Stagers out there who are as yet, undiagnosed.

May the media play a more important role in bringing those Early Stagers to the diagnostic clinic.

May the methods that are known about to make the disease more endurable, be spread near and far. So many more in the middle and end stage could be helped with the knowledge of care that is currently available but not widely practices. May the media also help spread the knowledge of these practices.


May there be research money made available to study all modes of care, not just pharmaceutical, that may solve the dementia mysteries, delay the onset and hopefully bring us closer to a cure this year.


Myriam
Posted: Tuesday, January 1, 2013 3:06 PM
Joined: 12/6/2011
Posts: 3326


Very well said!
SandyHalperin
Posted: Wednesday, January 2, 2013 3:37 PM
Joined: 4/29/2012
Posts: 76


Mimi S.


Hi and Happy New Year - all well stated.

Yes, there's a road ahead for all of us early-stagers, but there is hope that the more substantial monies and curative research is on the way so that we can benefit - in addition to those as you mentioned who are not yet diagnosed...

Take care and will be here along with you posting.

Best regards,

Sandy