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Posts Tagged ‘memory loss’

From XETV San Diego 6

By Candice Nguyen February 11, 2013

 

A new drug is being tested at UCSD‘s Department of Neuroscience to help early onset Alzheimer’s patients. Doctors are studying the medication‘s ability to slow down memory loss. It’s part of research being conducted around the world called The Scarlet Road Study (www.scarletroadstudy.com).

Dr. Michael Rafii is one of the researchers.  He says, “The drugs are being used at an earlier stage where the patient is not dependent on anyone else. They would remain in the independent stage.” He adds, “What we really need to do is stop the progression of the disease before it reaches the dementia stage.”

Currently, six patients are being treated with this medication at UCSD. The school serves as one of the largest sites in the world. Subjects receive an injection once a month, MRI’s every couple of months, spinal taps and memory tests. The drug works to remove an abnormal protein in the brain called beta amyloid, which is known to cause memory loss.

70-year-old Pat Donnelly is one of the subjects. About four years ago, his wife Missy started noticing he would forget little things like leaving cabinet doors open. Then an incident at an airport luggage carousel alarmed her.

“Instead of letting it go around again and picking it up later, he continued holding it and was plowing into people almost knocking them over,” she described. A trip to the doctor’s office confirmed Pat had early stage Alzheimer’s Disease.  Missy worked with Dr. Rafii to get her husband into the clinical trial.

Pat has been part of the two-year study for just over a year now. However, he and his doctors are “blinded” meaning they don’t know if he is receiving a placebo or medication. Pat and Missy say they understand a cure for Alzheimer’s or a medication to slow down memory loss may not be discovered in their lifetimes, bu they are taking part in this groundbreaking research to hopefully help future patients.

If you think you may be eligible for the study, call 858-246-1300.

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Dr. Allen Powers Speaks Out

On Anti-psychotics

Today on Alzheimer’s Speaks Radio, Dr. Power shared his insights on Dementia Beyond Drugs, which was a fascinating conversation.  One which I’ve heard from several people with Dementia how wonderful it was to hear a professional that really seems to understand the disease and the needs of those diagnosed with memory loss.

He also just posted this this article on his blog about a new study from the Journal of Clinical Psychiatry raises some new questions.   The study looked at the 4 commonly-used atypical antipsychotics in 332 people for up to 2 years. They found

(1) lack of significant improvement,

(2) a high discontinuation rate, and

(3) high rates of both serious and minor adverse events for all four drugs.

Check out the rest of the article HERE

alz_spkslogofromwebsite_083112

 

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If you missed the Dementia Chats Session today, there is no need to worry.  All sessions are FREE and recorded for your convenience.  You can go to the Alzheimer’s Speaks website to find past recordings and handouts, along with upcoming sessions.  Here is the direct link to the page where you can find the links and handouts.  We all hope you find the discussion helpful.

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Hi Everyone,

Lori La Bey Host of
Alzheimer’s Speaks Radio

I don’t often write to ask for your help, but this is one of those times I must reach out to you.  One of the biggest advocates for dementia, Norrms McNamara has been BANNED FROM FACEBOOK.

 One man can make a difference. 

Norrms has proven that and you can too!

Norrms McNamara,  knows of which he speaks. 

He lives with the disease and has honored us all by allowing us an inside peak as to what life is like with dementia.  Norrms has helped so many people world wide with his beautiful poetry and prose, but even more so for his unwavering commitment to shift our dementia care culture world wide.

Norrms was the voice who shared with me the concept of the Memory Cafe which I brought over to the US and now they are popping up all over, as the need is so great for this new type of social support for people living with memory loss.

Norrms started Dementia Awareness Day last year and it has grow and gotten the support of individuals and communities world wide.  Here is the link for more information on Dementia Awareness Day.

This is a man who is working on dementia friendly communities and business models over in the UK.  His insights are many, his passion is endless and his purpose is powerful.

Please watch the video and then sign the petition for Norrms voice to be heard on facebook.  Facebook allows Norrms to make connections to people, organizations and communities in need; which would not be possible through other means.  Is that not one of the largest benefits to Facebook?  United people around the world…I sure  think so!  Norrms isn’t selling anything but hope and new ways to live with a disease that torments so many.  Please let his gift to the world continue.

One man can make a difference. 

Norrms has proven that and you can too!

Here is the Link to the Petition

Thank You for Your Help!

Lori La Bey

 

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“Love Them While They’re With You”

by: Libby L. Alle

 

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Memory Loss And

The Power Of Music Of Their Era

This is an amazing video.Please take the time to watch it you won’t be disappointed!

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Return to Sender

By Norrms McNarama

I know your name, I swear I do,
It’s on the tip of my tongue,
Sorry, what did you say?
I’ve known you for “HOW LONG?”
Your face is so familiar,
But no name comes to mind,
Please can you remind me?
If you`ll be so kind,
God! I hate dementia,
And all that it entails,
I sit here, head in hands
As my memory fails,
Will I ever remember?
How things used to be,
Who you actually are,
And what you mean to me?
I see sorrow on your face,
And tears are in your eyes,
To me you look so sad,
Then I hear your cries,
Please give me a smile,
So I can remember,
Then I will smile too,
And return it to the sender

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Ohio Department of Aging –

Finer with Age TV Show

Director Kantor-Burman sits down with Patty Callahan and Lynn Dobb, caregiver advocates with the Central Ohio Area Agency on Aging, to discuss how caregivers might experience added stress during the holiday season. They offer easy strategies to manage stress and make the holidays more enjoyable. Then, we chat with Rick Phelps, who created the Memory People group on Facebook to connect with others who, like he, have been diagnosed with early onset Alzheimer’s disease.

Here is the link tot he show

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 Living with Alzheimer’s – Rick Phelp’s Video Log on Day 12

This one talks about what it feels like to be treated “Child Like”

 

 

 Rick has been diagnosed with Early Onset Alzheimer’s Disease  EOAD.  I will posting these videos as I get them from Rick.  If you are interested in truly understanding what it is like to have Alzheimer’s or are caring for someone with the disease, I believe these video logs will change your life in a positive fashion. 

In addition to this video sequence, Rick has also started a group called “Memory People” on facebook.

The group is for both people with Memory Loss and their Caregivers.  Here is some more information on how to find “Memory People” on facebook.

1)      Log into facebook

2)      If you have not signed up for facebook yet, you must do this first.  Once you have done this you will have a home page and can follow the directions below.  To sign up for facebook, just google facebook.com and follow the directions.  It is very simple to do.  I did it! 

3)      Once you are logged in on your home page you will see a search box just left of the facebook logo and next to the little, people, comment, and world icons.  You can’t miss it.  

4)      Type in “Memory People” and a list of groups will appear

5)      Look for the drop down and click on the one that says “Memory People”  and it will bring you to their page.

6)      From there you can decide to join by clicking on the button that says “Join” I believe it is in the upper right corner of the page.

 

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Living with Alzheimer’s from the Otherside– Rick Phelp’s Video Log on Day 10

Today Rick’s Wife Phyllis June talks openly about Alzheimer’s from her side.

 A Caregivers Perspective

 

Rick has been diagnosed with Early Onset Alzheimer’s Disease  EOAD.  I will posting these videos as I get them from Rick.  If you are interested in truly understanding what it is like to have Alzheimer’s or are caring for someone with the disease, I believe these video logs will change your life in a positive fashion. 

In addition to this video sequence, Rick has also started a group called “Memory People” on facebook.

The group is for both people with Memory Loss and their Caregivers.  Here is some more information on how to find “Memory People” on facebook.

1)      Log into facebook

2)      If you have not signed up for facebook yet, you must do this first.  Once you have done this you will have a home page and can follow the directions below.  To sign up for facebook, just google facebook.com and follow the directions.  It is very simple to do.  I did it! 

3)      Once you are logged in on your home page you will see a search box just left of the facebook logo and next to the little, people, comment, and world icons.  You can’t miss it.  

4)      Type in “Memory People” and a list of groups will appear

5)      Look for the drop down and click on the one that says “Memory People”  and it will bring you to their page.

6)      From there you can decide to join by clicking on the button that says “Join” I believe it is in the upper right corner of the page.

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