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Sandy's story
Lane Simonian
Posted: Tuesday, October 13, 2015 4:37 PM
Joined: 12/12/2011
Posts: 4233


Some of you know Sandy Halperin from these boards. Here is an update on him from CNN.

http://www.cnn.com/2015/10/12/health/alzheimers-sandys-story/

Iris L.
Posted: Tuesday, October 13, 2015 7:28 PM
Joined: 12/15/2011
Posts: 15302


Thanks for sharing, Lane.

I liked the video better than the story.

It is so nice to have an update on our members. Sandy used to post here, but he has not posted in a long while.

I would like to know what Sandy is doing for himself for treatment.

Iris L.

Lane Simonian
Posted: Tuesday, October 13, 2015 9:56 PM
Joined: 12/12/2011
Posts: 4233


Thanks, Iris. I kind of liked the video better than the story as well.

I cannot recall what Sandy posted on these boards about any treatment or treatments he was following. If that information was there, it would have been a valuable part of the story. Some day, it would be great if everything everyone is doing that has helped them--Best Practices, medicines, aromatherapy, herbs, etc.--could be reflected upon by researchers studying dementia.

Iris L.
Posted: Tuesday, October 13, 2015 11:14 PM
Joined: 12/15/2011
Posts: 15302


This is a transcript of an article about Sandy from 2012.



Sandy Halperin is volunteering as a way to fight his early-stage Alzheimer's Disease
Jul 15, 2012

Sitting in a local restaurant, Sandy Halperin looks like any other customer enjoying his morning coffee.

With his pad of paper and a pen in front of him, Halperin — whose resume boasts a long list of published work — looks as if he is preparing to get started on another manual or book. Halperin fondly sweeps the room with his eyes and said, “I used to lose myself in one of the booths here for weekends at a time. I would spend the entire day working on a piece to be published.”

But the pad and paper sit in front of Halperin not to become a published piece of work, but as a tool for him to use to remind himself of what he wants to say or do. He fears that in the next moment, it will be forgotten.

Alexander “Sandy” Halperin, 62, is in the early stages of Alzheimer’s disease. Diagnosed two years ago, part of his treatment plan includes volunteering and advocating on behalf of those with Alzheimer’s disease. One goal that Halperin has is to start an early stage support group for others like him who has been diagnosed in the early stages.

“I was diagnosed at 60 years old. I didn’t want to hide. I have an illness that you can’t see, but I have it” said Halperin, “I’m not ashamed to sit with someone and share my story. I might forget mid-sentence what I am saying. I get frustrated with myself that at times I forget what I forgot. Yes, I have a troublesome and challenging cognitive problem, but when somebody sees me, I want them to see me as Sandy, not as somebody with the multiple medical problems that I have.”

Part of his treatment plan includes volunteering. Halperin was encouraged by his doctor to do volunteer work.
“It is imperative to maximize the intellectual ability with a project that is exciting and emotionally involving the individual,” said Halperin’s physician, Dr. Angela Spencer. “When one feels to be a useful contributor to the care, either on an individual or a global level, the high emotional discharge can excel further the person — almost as if getting wings — and ignite interest and involvement in others.”

He became involved with the Central and North Florida chapter of the Alzheimer’s Association, and became dedicated to the mission of bringing more awareness to the local community about the disease and letting people know that early diagnosis and being proactive is key.
Moving forward, Halperin has set his sights on reaching those beyond this community, aiming for politicians and corporations.

In 1975, Halperin graduated from the New York University College of Dentistry with honors. He was city commissioner in Weston Florida, and his resume is filled with impressive positions and a long list of published works.

In 2009, Halperin was working at the Department of Health as a dental consultant when he began noticing symptoms.
“I would review complaints against dentists. Sometimes the cases would contain 30 pages of information, sometimes a file containing papers that measured 2 inches high,” said Halperin. “I began to notice that when someone came in to ask me a question about a file, I couldn’t recall what I had just read. I was able to cover for myself by re-reviewing the file immediately before going over it with someone. I would also have the file open for me to refer to whenever I was in a meeting. ”

In 2010, Halperin was sent to the Mayo Clinic, where he was given a series of tests. The definitive test was the clock test. Halperin was given a blank piece of paper and told to draw a clock.
“I was able to draw the circle, but I couldn’t figure out where the numbers went,” said Halperin.

According to the Alzheimer’s Association, an estimated 5.4 million Americans are currently living with Alzheimer’s disease. That number is expected to climb as high as 16 million by 2050. Alzheimer’s is the sixth leading killer in the United States and, at this time, has no known cure. It is believed that people can have the disease ten years before they ever show a symptom.

In Leon and surrounding counties, there are approximately 5,000 people living with Alzheimer's disease, according Margaret Farris, community specialist with the Central and North Florida chapter of the Alzheimer’s Association, which serves 31 counties. The chapter is part of the national Alzheimer’s Association, a nonprofit centered on Alzheimer’s care, support and research.
Halperin’s father had been diagnosed with Alzheimer’s, so he knew what the stages of the disease looked like.

“I remember my mom always whispering in my dad’s ear to remind him of whatever it was that he had forgotten. I don’t want to be like that.” said Halperin. “I used to write journals, I could recite literature. Suddenly, I found myself not even able to remember what I went to the grocery store to get.”

Farris said the regional chapter emphasizes the importance of early detection.
“The earlier it is diagnosed, the more things can be done to slow down the process,” said Farris. “It is important for patients to be diagnosed in the early stages to sharpen their memory and stimulate new brain cells.”
Brain games on the computer, game shows such as “Jeopardy”, puzzles and even volunteering are things recommended to help slow the progression of the disease.

Spencer agreed.
“I believe in the early education and treatment of dementia. Although currently we do not have a cure for the illness, we have several drugs available to slow down the disease progression, and have multiple methods to modify the course,” Spencer said.

Recently, Halperin was chosen to be part of 2012-2013 Alzheimer’s Associations early-stage advisory group.
The early-stage advisory group is made up of individuals living with the early stages of Alzheimer’s or dementia. The group is made up of individuals willing to share their personal experiences with the disease and a willingness to use their voices to draw attention to the early-stages issues. The role they play is to raise awareness and inform the public about the early stages of Alzheimer’s and about the work of the association.

Halperin is looking forward to sharing his story in Chicago later this month and is only beginning his crusade to bring more awareness to Alzheimer’s disease and the need for funding.

“I look forward to doing everything I can to secure funding from the government, from corporations and industries. The more people I can get in front of, suddenly this disease becomes someone, and it becomes personalized. It is no longer a debate about research and the cost, it is about a life.”

In May, the Obama administration finalized a national strategy called the National Alzheimer’s Plan which laid out numerous steps the government and private partners could take over the coming years to find effective ways to treat, or at least stall, the mind-robbing disease. The deadline is 2025. For Halperin, that deadline is too far off; the time to do something is now.

“I saw a coffee mug in Fresh Market last week that had a proverb on it that said, ‘Just as the caterpillar thought the world was going to end, it became a butterfly.’ The moment that I saw the mug, it hit me right in the heart and I saw myself as that butterfly set loose, with freedom to do all that I can do — not only with the Alzheimer's Association, but with my current and future life,” Halperin said. “Although I have a challenging cognitive problem ... I remain, being Sandy — that butterfly so to speak — with my heart and soul, making every moment as meaningful and productive as possible.”

Get involved
• The Central and North Florida Chapter of the Alzheimer’s Association, part of the national Alzheimer’s AssociationVisit www.alz.org/cnfl or call 850-408-9984
• The Alzheimer Project, Inc., a locally-funded nonprofit centered on providing respite care, support groups, counseling, referrals and other services to people with Alzheimer's disease and their caregivers. Visit www.alzheimersproject.org or call 386-2778.
• To register for the “Walk to End Alzheimer’s TALLAHASSEE” to benefit the Central and North Florida Chapter of the Alzheimer’s Association on September 29 at Lewis Park or to join Sandy’s walk team go to http://act.alz.org/tallahassee2012.
• To register for the “Forget Me Not Walk” on Sunday, November 4 at St. Paul’s United Methodist Church to benefit the Alzheimer’s Project, Inc. go to www.alzheimersproject.org.

http://www.tallahassee.com/article/20120716/TLHLOCAL08/307160011/Sandy-Halperin-volunteering-way-fight-his-early-stage-Alzheimer-s-Disease?odyssey=tab|topnews|text|frontpage




Lane Simonian
Posted: Wednesday, October 14, 2015 9:45 AM
Joined: 12/12/2011
Posts: 4233


Thanks for finding this article, Iris. It is important to think about what people did and what they can still do in addition to what they can no longer do.
dayn2nite
Posted: Wednesday, October 21, 2015 2:15 AM
Joined: 12/18/2011
Posts: 3100


I remember Sandy. I can't believe it's been 3 years!

Dr. Gupta is one of 2 physicians in the media who continue to put time into the stories of people with ALZ and related dementias.

The pressure feeling Sandy describes----he does a wonderful job of saying what it feels like. My mother used to try to describe this same feeling (she would call it "clouds" but I knew it had a physical sensation because she also would hold her forehead).



alz+
Posted: Saturday, October 24, 2015 12:11 PM
Joined: 9/12/2013
Posts: 3124


day 2 night

I am interested in knowing more about your Mom and her physical experience of dementia "clouds" and anything else you might want to share.

Every time I catch a bit of some one describing the experience it helps me and I am sure a lot of other people, and it is fascinating to get a glimpse of the caterpillar to butterfly aspect of dementia, how we are processing the world and life in a new in the moment way.

I also appreciate the ease of reading something posted right here. I should be going out to retrieve laundry I forgot but this was so interesting.

Good to know Sandy is not just "waiting for a cure" but living life. His own life.


Iris L.
Posted: Saturday, October 24, 2015 3:30 PM
Joined: 12/15/2011
Posts: 15302


I would post more full articles, but it seems that internet etiquette is to post a link to an article. Of course, that way, we are bombarded by all the ads. But I will try to post more full articles.

Iris L.

 
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