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Alzheimer's Prevention Clinic visits

Posted by betty  
Alzheimer's Prevention Clinic visits
April 02, 2015 06:43PM
Has anyone here been seen as a patient in an Alzheimer's Prevention Clinic? There were a few listed on the See a Doctor page (unlocked after I completed the first 2 Lessons) but im not sure if I should travel. What is it like to be a patient? What tests do they run or what were you told to do to reduce risk? Was it worth the visit?

Ive been caring for my mama for several years who is now in Stage 3 of AD (dementia) and am interested in things I can do for myself...

Thank you
Betty
Re: Alzheimer's Prevention Clinic visits
April 07, 2015 11:43PM
Hi Betty,

Thanks for writing and for joining AlzU.org! If you would like more information about how the Alzheimer's Prevention Clinic works at Weill Cornell Medical College / NewYork-Presbyterian Hospital, please visit our webpage [neurology.weill.cornell.edu] or you can read our clinic brochure [cornellneurology.org]

The clinic brochure has a lot of information about what it is like to be a patient. This includes direct clinical care by a treating neurologist, a blood draw, vital signs, body measurements etc, as well as computer-based cognitive testing activities (similar to those available on the Activities page of AlzU.org, but more extensive), and comprehensive surveys so that we can get to know each patient better.

Hope this helps!

- The AlzU.org Team
Re: Alzheimer's Prevention Clinic visits
April 22, 2015 10:54PM
I am a skeptic. You don't need to pay a specialist to tell you to eat right, etc. I think these people are jumping on the bandwagon and setting themselves up to prey on people who already have enough problems. Are they certified to provide this kind of care? Is there such a certification yet? From a legit agency? Are they pushing a nutritional formula (pills, maybe) that you can get only through them? That would be a very, very bad sign. Or if they prescribe anything they say came from Tibet or a South American tribe or any kind of hogwash like that.

The word "natural" (of a medication) is like a big, ol' stop sign.

If only there was a preventive medicine. If there was, everybody would know it, because it would be advertised on all possible media (remember Viagra's debut?), and AD would gradually cease to be a problem.

It might be a good idea to search for "Alzheimer's" in quackwatch.com. Most of the entries seem to be alleged, and of course fraudulent, cures, but there are some that work in prevention too. You must avoid thinking that the people behind quackwatch are paid shills for big pharma, or just prejudiced or skeptical by nature. They rely on proven data, and yes, there is such a thing, but no, not everybody who says they have it really have it. Getting a paper published in a so-called scientific journal run by their fellow quacks does not prove anything except that people will _believe_ anything. You or I could put on a white coat and buy a stethoscope, and call ourselves any kind of health-oriented name except M.D., and patients would not be hard to find. Because it is so hard to hear that nothing can be done.

Maybe something can be done to prevent or postpone Alzheimer's. This site is going to tell us what they think it is. This site is not listed in quackwatch. I have no reason to believe they are anything but on the level. Nevertheless, a second opinion is always good.
Re: Alzheimer's Prevention Clinic visits
May 27, 2015 01:40AM
Betty,
I think if there are specialists fairly near by you who offer counselling in prevention and they are affiliated with one of the NIH Clinical Trial Centers (which are in many major cities across the U.S.) you could be assured they were not "quacks" like Claudia warned against. It is true there are no hard and fast preventions that will keep you from developing AD but since you already are at increased risk due to your mother having the illness I think being well informed about things you can do which MAY reduce your risk while you are still without symptoms is the most pro-active step available to you. I am in a similar situation and I read everything I can find about AD and try to reduce my risks. I also am enrolled in several studies specifically to help identify those biomarkers and other ways to detect who is more likely to develop the illness.
On the whole most Family Practice and Internal Medicine health care providers are not going to be helpful in counselling for prevention of AD. They are the exception to the rule if they are even routinely providing screening, making diagnosis and including a plan of care for people with AD along with taking care of all the other health issues of people who are at the age of highest risk. After all, they have all of 10-15 minutes appointments 1 to 4 times per year to cover that along with everything else such as blood pressure, cholesterol, arthritis, thyroid dysfunction, menopause, erectile dysfunction, heartburn, fibramyalgia, COPD, and on and on and on.
Re: Alzheimer's Prevention Clinic visits
July 20, 2015 08:04PM
For more information and a recent overview about the three Alzheimer's disease prevention clinics currently in the United States, please read this story on CNN.com: [www.cnn.com]

The upcoming issue of US News and World Report Best Hospitals edition 2015-16 (published on September 1, 2015) will also feature a story on the Alzheimer's Prevention Clinic at Weill Cornell Medical College / NewYork-Presbyterian Hospital.

To learn more, click on the links above in the first post, read this Wall Street Journal article or watch the NBC Nightly News report.

Wall Street Journal: [www.wsj.com]

NBC Nightly News: [www.nbcnews.com]

- The AlzU.org Team



Edited 1 time(s). Last edit at 07/20/2015 08:05PM by admin .
Re: Alzheimer's Prevention Clinic visits
August 18, 2015 05:08PM
There is no prevention for ALZ because no one knows exactly what causes it. There are theories such as diet, small strokes and a list of other things, but more research is needed. I would be wary of anyone touting "prevention." Common sense tells me your best bet is to eat a diet rich in vitamins, nutrients and minerals that you get from whole foods.
Re: Alzheimer's Prevention Clinic visits
August 23, 2015 10:58AM
As a patient in the AD prevention clinic and a (now retired) registered nurse, I'd like to share my experience so far from both a patient and former healthcare provider perspective. The clinic and program is extremely comprehensive and very rigorous when it come the assessment of my risk and the steps I need to take to protect my cognitive functioning as best as I possible can. I was scared and somewhat skeptical (or more uncertain) initially but my first visit was a long (and comprehensive one) where I completed a 30 minute initial questionnaire online, followed by this course on alzu, then in person cognitive testing for over an hour, then over an hour and a half with the doctor. The next day I had fasting labs drawn and body meaurements done. I was given 4 pages (yes, four pages!) of typed out recommendations, and came back 8 weeks later to discuss the lab results. I was absolutely fascinated when I learned about my results (including my genetics, I didn't have the one gene I was expecting to have). The doctor then refined the suggestions I was given, and gave me a detailed plan based on my genes, vitamin levels, omega 3 levels, cholesterol and most surprisingly, I was found to be insulin resistant and on the border of pre-diabetes. I then decided to be evaluated for the main Alzheimer's prevention clinical trial (I qualified initially and am now awaiting my pet scan next week).
Overall I have to say that the approach toward my care has been in a word, fascinating. I learned about risk factors I had that shocked me. I've had to make many changes to my lifestyle and feel empowered that I am now really doing everything I can. I can understand the skeptics out there who have posted, but if you really understood what it was like to be a patient and the detailed and personalized methods they use to help reduce risk, you would understand this is in my opinion cutting edge medicine I am 67 and my mother was diagnosed at 83, and my aunt at 87. I also have a first cousin who is just starting to have mild symptoms. I bet in 5 years from now these clinics will be the norm and not the exception. While I know there are no guarantees with anything in life, if I can delay this terrible disease by even a few months or a year or two, or more by enrolling in this clinical trial, I can't ask for more than that.
Re: Alzheimer's Prevention Clinic visits
September 03, 2015 10:47PM
Thank you M.
Re: Alzheimer's Prevention Clinic visits
January 27, 2016 03:21PM
m, you inspire me. I wish you the very best on your journey and find it heartwarming that you recognize your condition and are doing something about it. God bless....
Re: Alzheimer's Prevention Clinic visits
March 09, 2016 10:11PM
Last week, patients and staff from the Alzheimer's Prevention Clinic at Weill Cornell Medicine / NewYork-Presbyterian gathered to discuss experiences in the clinic and share observations. Also, an update on the progress of the clinic was discussed at the beginning (first ~20 min) of the session.

We would love to hear your thoughts and comments about this special event.

[youtu.be]

- The AlzU team
Re: Alzheimer's Prevention Clinic visits
June 10, 2016 12:33AM
For more information about the approach to Alzheimer's prevention in a clinic setting, watch the video interview with Maria Shriver and Dr. Isaacson on our facebook page at [www.facebook.com] posted today!



Edited 1 time(s). Last edit at 06/10/2016 12:34AM by admin .
Re: Alzheimer's Prevention Clinic visits
August 01, 2016 08:05PM
Thank you for this valuable information. I asked my doctor about what i should be doing to help protect my brain and he gave me a few general suggestions (the usual "exercise and diet and use your brain or lose it"winking smiley but i was shocked that he didnt know much about the clinical trials for prevention or anything about this or similar clinics. Do you have a suggestion on what my doctor can read to learn more about this approach? i would like to share with him some information next time i go. Since i am not yet 65 i dont think i am eligible for any trials, is that true??

Thank you!
Rochelle G.
Re: Alzheimer's Prevention Clinic visits
June 18, 2018 05:47AM
Here is an amazing article on Alzheimer's Disease.
Read more: [www.inkwoodresearch.com]
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