Wednesday, October 29, 2014

Glen Campbel's-A Farewell to His Fans and Himself


On the Road With Alzheimer’s in ‘I’ll Be Me’






From the very first scene, “I’ll Be Me”signals that it is not going to be a conventional documentary about a celebrity, in this case the country-pop singer and guitarist Glen Campbell. As Mr. Campbell sits in a darkened room watching home movies of his younger self, he asks his wife, Kim, “Who is that?”
“It’s you, honey,” she replies, “it’s a movie about you,” to which he, still puzzled, replies: “No kidding? I’ll be me.”
In 2011, Mr. Campbell, then 75, revealed that he had Alzheimer’s disease and announced a series of farewell concerts for that fall. So “Glen Campbell: I’ll Be Me,” opening Oct. 24, was conceived as a behind-the-scenes record both of that final tour and of the difficult struggle of Mr. Campbell and his family against an incurable disease that afflicts more than five million Americans.
“The more we learned about Alzheimer’s, the more we wanted to shine a light on it and the more we became aware of the potential of this movie to be a catalyst for change,” said Mrs. Campbell, a former Radio City Music Hall dancer who met the singer on a blind date in 1981. “It turned into something bigger than we had imagined.”
The original plan, said the film’s director, James Keach, was to follow Mr. Campbell on what was envisioned as a five-week tour. But that undertaking grew into 151 shows over 15 months, and Mr. Keach, operating with a very small crew, continued to tag along, even when the Campbells were at his doctor’s office or at home with family or friends.
“It was daunting, the idea of doing it, because how do you make something that is entertaining about a man with Alzheimer’s?” said Mr. Keach, who has directed episodes of numerous television shows and was also the co-producer of “Walk the Line,” the 2005 biopic about Johnny Cash. “In some ways, it’s more difficult than having a scripted movie, because there you have your structure figured out. In this case, you go from Stage 2 to Stage 4 or 5 of Alzheimer’s, and you have to be true to that.”
Mrs. Campbell also had a camera and shot events at home. The film does not emphasize moments that may be painful or embarrassing to watch, but neither does it flinch from them: Mr. Campbell is shown erupting in rage as his dementia worsens, and one discussion in his doctor’s office focuses on the singer’s difficulty in finding the toilet in hotel rooms and his own bedroom, which leads him to urinate in wastebaskets.
Mr. Keach said that one of the lessons he learned from “Walk the Line” focus groups that saw Johnny Cash consuming drugs was that “a little bit goes a long way” in showing such frailties. For her part, Mrs. Campbell said she trusted Mr. Keach to “edit and tailor the film to protect Glen’s dignity” while at the same time “telling the truth about this disease.”
In documentaries that get in so close to their subjects’ lives, especially those unable to fend for themselves, the moral issue of informed consent often arises. But in Mr. Campbell’s case, “he not only had the capacity, he had the desire” to have his situation documented, Mr. Keach said.
Mrs. Campbell added: “In the early stages of this disease, your short-term memory begins to falter, but you are still cognizant of what is going on and can still make decisions. Glen was fully aware of his diagnosis and what we were attempting to do.”
(Last month, Mr. Campbell and his management were sued by a Los Angeles-based media production company, which accused him of reneging on an agreement to make the documentary with it. In a statement issued last week, a lawyer for the film’s producers, Lisa Callif, said they do not “have any personal knowledge of the allegations set forth in the complaint.”)
The film has numerous concert sequences showing the highs and lows of Mr. Campbell’s performances as well as the compassion of audiences that knew they were getting their last glimpse of him. At the beginning of the tour, Mr. Campbell is still playing guitar fluidly, though often struggling to remember lyrics, but by the last show, in Napa, Calif., on Nov. 30, 2012, even his dexterity is suffering.
“It was almost like a game of roulette,” said Ashley Campbell, the singer’s youngest daughter, now 27, who played keyboards and banjo in the tour band, which also included her brothers Shannon and Cal. “You’d have a great show and then a difficult show, and you’d start to wonder, ‘Oh no, is this getting towards the end?’ ”
Mr. Campbell has been a part of the American musical landscape for so long that it is easy to forget that he has played many roles. As the country music stars Blake Shelton, Brad Paisley and Keith Urban note in the film, he was instrumental in bringing their genre into the pop mainstream in the late 1960s, but before that, he was a session musician on dozens of Top 10 pop hits and even toured as a member of the Beach Boys.
“He had this overall musicality, and was born with an encyclopedic knowledge of keys,” said the songwriter Jimmy Webb, a friend since 1967 who wrote “By The Time I Get to Phoenix,” “Wichita Lineman” and other hits for Mr. Campbell. “He’d take a scrap of paper and turn it into an arrangement, and did so many times for the Beach Boys and the Mamas and the Papas. He was more entertaining to work with than almost anyone because of the childish excitement he brought to that process.”
Films about musicians struggling with adversity, “Searching for Sugar Man” and “20 Feet from Stardom,” have won the Oscar in the feature documentary category the last two years. “I’ll Be Me” is already getting some Oscar buzz, but Mr. Keach said his film “is not a music doc, it’s about a man battling a disease and going out on the stage every night not knowing where he is.”
But the film also offers a broader examination of Alzheimer’s impact on society. In one particularly emotional scene, Ashley Campbell testifies before Congress about her father beginning to forget who she is, and in another, Mr. and Mrs. Campbell visit the House minority leader, Representative Nancy Pelosi of California, and push for more funding for Alzheimer’s research.
The film represents an important educational opportunity, said Dr. Ronald C. Petersen of the Mayo Clinic, who diagnosed Mr. Campbell’s disease and is also chairman of a nationalAlzheimer’s advisory council. “One of our biggest struggles is still getting people to acknowledge this disease,” he added. “So we need to embrace this and say he didn’t do anything wrong in his life to bring this on, that this can happen to virtually anyone.”
Sony Pictures Classics plans to release another movie this year that should also raise Alzheimer’s awareness, the fictional feature “Still Alice.” Based on Lisa Genova’s best-selling 2007 novel of the same name, that film stars Julianne Moore as a linguistics professor with early-onset Alzheimer’s.
“I’ll Be Me” features former President Bill Clinton talking about Mr. Campbell, a fellow Arkansan, and his courage in becoming a public face of Alzheimer’s. In addition, Bruce Springsteen, Chad Smith of the Red Hot Chili Peppers, Mr. Paisley and the country singer Kathy Mattea weigh in, talking about family members who suffer from the disease.
Mr. Webb also appears in the film, but he said has not yet seen it and is not sure when, or even if, he will. “It’s too personal, to be frank, too painful,” he said.
“In a very real sense, Glen the artist, the virtuoso and true master of so many aspects of musicality, in many ways that Glen is gone,” he added. “And I say that as a caress and not as a dismissal. The sense of loss is so complete that it’s difficult for me to find the words.”
By spring of this year, the disease had advanced to the point that Mr. Campbell moved into what his wife described as a “memory care community,” a long-term care and treatment facility near Nashville. She visits him daily, she said, but his musical skills and awareness are now so eroded that he is sometimes not even conscious of songs being played around him.
If he’s handed a guitar, “sometimes a melody will come out,” she said, “but often it’s very dissonant and doesn’t make sense.” She continued: “But our son Shannon was with him just the other day, and Glen just sounded out the melody for ‘By the Time I Get to Phoenix.’ So I do think that music is still the most deeply embedded thing in him, and it’s a delight when it comes back.”
Mr. Webb added: “It’s a curious feeling, difficult and poignant, when you reach that tipping point in the relationship where a person no longer recognizes you. I think that’s very difficult. I really wish I could go over and see him and play some songs. Really.”

Monday, October 27, 2014

Honoring Carmine

Carmin Depiano 10-10-2014
I got the pleasure of first meeting Carmine and his wife at the annual Alzheimer’ walk this year at the Sparks Marina 2014. He was honored on stage and held a blue flower representing those who currently live with Alzheimer’s.
What is unique and beautiful about Carmine is that he is sharing his story openly. He is one of the 5 million American’s living with Alzheimer’s. Not only did Carmine speak openly in front of several hundred people that came out to do the Alzheimer’s walk he is letting me share his story and photograph him.
When he spoke on stage he made many cry. There wasn't a dry eye anywhere around as his words rang home to a lot of people sitting in the audience and I was one of them.
I asked Carmine’s wife if they would be interested in being featured on my blog. She said “Ask Carmine, I am sure he would do it.” When Carmine came off the stage, I asked him and he said yes. I gave him my card.
Not knowing if I would hear from him I was delighted when he called me a few days later to schedule our first interview at his house with him and his wife. He asked when I answered the call if I knew who is was. I said “Yes, Hi Carmine I know this is you”. He laughed. He wanted to make sure I knew it was him.

(Carmine Depiano talks on the phone during our interview.)
I came over to his house on a Friday after work. I was greeted by two large dogs named:  Blue & Rainy who were really good and beyond friendly.
We sat in the dining room at his house and I shared with them why I wanted to photograph him and share his story.

Carmine is a 68 year old gentleman. He was diagnosed February of 2014 with early on-set Alzheimer's. Him and his lovely wife Suzan have been married for over 40 years. They have two sons and two grand kids. They live on there own with no help or assistants. Suzan works part time at the Washoe County Jail as a dental assistant.

Carmine is a retired Vet from the Air force where he was a weapons loader.  He served over-seas in Germany.  After serving for his country for three years and seven months he was honorable discharged. He spent the rest of his working career in the Trucking industry working several aspects of the trucking industry from dispatcher to supervisor. Him and his wife came to Sparks, Nevada nine years ago and it is now where they reside and call home.

Carmine joined the Alzheimer's walk after he saw and ad on tv. He felt it was something he needed to become part of after learning of his diagnosis.

(Carmine with Blue & Rainy)
When asked how he dealt with the diagnosis the answer was surprising. It actually took doctors eight months to figure out what was happening. Carmine had been showing signs and symptoms. He remembers feeling very out of sorts. He made an appointment with the VA. It took them six months for him to get in for his first appt. He was first given a CT scan and that came back negative; however he had failed a cognitive test. So the doctor was leaning on other diagnosis's at that time.  Carmine kept insisting that something else was happening. He was than giving an MRI one month later and that was also negative. He than was sent in for a PET scan where they discovered he had plaque sitting on his brain. Thus being the beginning of the early on-set Alzheimer's diagnosis.  The doctors response to his diagnosis "Get some exercise and take these medications." No resources, no support groups, just as simple as here is your diagnosis and out you go.  And this is common with the VA. They do not cover a second opinion. A vet gets two doctors appointments a year and if they miss those appointments it takes months to get back in to see the doctor.

Carmine said he came home angry and mad.  "I was given a death sentence." and then he recalls a statement that rang true, "Well get over it we are all gone die."  He was the first to be diagnosed in his family.

Carmine still drives right now. He is okay on the wide open road, but has difficulty driving in town.  Because his wife works part time, she is not always there to help him. Her biggest worry is Carmine falling. Right now he falls about once a month.  Last year Carmine took a fall in June of 2013 that was so bad he broke his jaw, some teeth and his shoulder.

(Carmine and his wife Suzan)
Carmine does not feel that he is in denial about what is going to happen, he said he "gets mad and I think why me?' He loved to play golf, but can no longer play due to having back issues from the Air force being 70% disabled. He loved to fish at Lake Davis. As these activities might be out, he said he dose hope to travel a bit with his wife and go to a family reunion that is happening taking place April of 2015.  He can still read, and his favorite color is red.  He does get out of the house and walks every 3 to 4 miles, three days in a row and than takes a day off.  He repeats this cycle exercise at the Sparks Marina.  Right now Carmine also gets a lot of help from his wife and his son Cody.  The hardest thing for him right now is that he can not work. Both him and Suzan take one day at a time, but know that down the road it will only get harder.

Carmine & Suzan
Carmine said he decided to speak about his diagnosis because he has never spoken about himself and he is getting enjoyment knowing that it is helping someone out. And this would be why I titled this article/blog Honoring Carmine. For serving our country, and now for standing up and sharing his story, his life and his diagnosis with early on-set Alzheimer's. This is article one of a series Carmine and I are going to do through blogging and photography. I salute you Carmine, for your bravery is truly worn on your sleeve.






Monday, October 20, 2014

Hilarity For Charity- 3rd Annual Prom Night!!!!

Hilarity For Charity- 3rd Annual Fundraiser
Date: Friday October 17, 2014
Time: 6:30pm
Place: Hollywood, Palladium
Theme: Prom
Total Raised: 1 Million!!!!
Website: http://www.hilarityforcharity.org/
Red Carpet, Hilarity For Charity 10/2017
My husband and I flew into Los Angeles  on a Friday afternoon. We got checked into our hotel that was only 2 building over from where the amazing fundraiser was set to take place. The guest star on stage lineup included: Joseph Gordon-Levitt, Sarah Silverman, Bill Burr, Craig Robinson & The Nasty Delicious, Kumail Nanjiani, Mayer Hawthorne and David & Leeman.

We left the hotel promptly and walked right around the corner to the red carpet. The event was surreal to me on many levels. I was there for a cause a cause that is near and dear to my heart. It was both a powerful moment for me to be a part of this amazing fundraising opportunity but to reflect on the great things I have become a part of thanks to the memory of my grandma. How she would be beaming cheek to cheek at that moment.





Giving Maria Shriver a hug and Kiss!
Prom Night has Arrived!
The red carpet was intense. My official “First” Hollywood red carpet and hopefully many more to come. It was all kind of a blur. I do recall my husband pointing out that Seth Rogan was standing right in front of us. We got to the end of the carpet and took a few funny photos with the Seth Rogan cardboard cutout. Then we decided to walk back on the red carpet 2 times. This ensuring I would be seen with my crown and sash. Rob Lowe and his lovely wife walked right behind us. Once in the Palladium, we got our wrist bands. We walked over to a photo booth to do an old fashion prom photo together. There were plenty of drinks and snacks to eat. We talked to the many others that were at this event in the prior years. They expressed their joys of why they came out to support Hilarity of Charity.. For others it was also there first time at this fundraiser.  We walked into the open room of the Palladium and I saw Maria Shriver. I went up to tell her how beautiful she was. She hugged and kissed me. J Yes I have a big smile on my face. She is an advocate for Alzheimer’s.
Seth Rogan! WOOT WOOT!




Reserved for BMW
Walking into the Hollywood, Palladium
We than headed to the second floor balcony where our table had reserved signs on it “Reserved for Brooke Westlake-Kelley”. We decided to head over to the upstairs bar, and while there Seth Rogan came in. My husband walked over and asked if we could get a photo with him, and he said “Of Course”. We were delighted. Ate lots of food, watched an amazing group of musicians and comedian line ups and sat at our table. The joy and sadness can truly not be expressed at that moment, as I did end up getting emotional towards the end of the night. To be a part of this event to raise money for Alzheimer’s was beyond great and meaningful to me. To be there in honor of my grandma was both a great feeling but heart breaking at the same time.  I hope I am able to go to this event in the future. At the end of the day helping to raise money for the cause and do it with some laughter would have made my Grandma Bev happy.   That was one of our favorite things to do together.
Laugh.

Monday, October 6, 2014

Medicine Nobel Prize goes for work on cells that form brain's GPS system

By Ben Brumfield, CNN
(CNN) -- You may know where you are and where you're going to, but do you know why you know that?
The Nobel Prize in Physiology or Medicine has honored three neuroscientists, whose work is helping answer that question.
John O'Keefe, along with May-Britt Moser and Edvard Moser, discovered cells that form a positioning system in the brain -- our hard-wired GPS.
Those cells mark our position, navigate where we're going and help us remember it all, so that we can repeat our trips, the Nobel Assembly said in a statement.
Alzheimer's insights
Their research could also prove useful in Alzheimer's research, because of the parts of the brain those cells lie in -- the hippocampus and the entorhinal cortex.
Humans and other mammals have two hippocampi, which lie in the inner core of the bottom of the brain and are responsible for memory and orientation. The entorhinal cortices share these functions and connect the hippocampi with the huge neocortex, the bulk of our gray matter.
In Alzheimer's patients, those two brain components break down early on, causing sufferers to get lost more easily. Understanding how the brain's GPS works may help scientists in the future understand how this disorientation occurs.
The research is also important, because it pinpoints "a cellular basis for higher cognitive function," the Nobel Assembly said.
The scientists conducted their research on rats, but other research on humans indicates that we have these same cells.
Nerve cell discoveries
O'Keefe, a British neuroscientist who is also an American-born U.S. citizen, made the first discovery in 1971, when he came upon a nerve cell in the brain of a rat that was set off whenever the rat was in a particular place, the statement said.
The scientist called them "place cells."

Sandy's Story: A devastating diagnosis
In 2005, the Mosers, Norwegian neuroscientists, discovered yet another component.
"They identified another type of nerve cell, which they called 'grid cells,' that generate a coordinate system and allow for precise positioning and pathfinding," the statement read.
They also later figured out how place and grid cells work together to make the brain know where it is and where it's headed.
Oversimplified, one could say that the place cells mark point A and point B in the brain, and the grid cells help the brain get from point A to point B.
The prize money of 8 million Swedish kronor ($1.2 million) took an interesting split. Half went to O'Keefe and half went jointly to the Mosers, who are a couple.
It would seem to reflect the half-half nature of their discoveries.
Nobel background
Monday's ceremony at the Karolinska Institute in Stockholm, Sweden, will be followed by the announcement of the physics prize Tuesday, the chemistry prize Wednesday and the economics prize on October 13. The prize for literature will be awarded on a date to be announced later.
The Nobel Peace Prize will be awarded Friday.
Two Americans and a German shared the Nobel Prize in physiology last year. James E. Rothman and Randy W. Schekman, and German Thomas C. Sudhof were awarded the prize for discoveries of how the body's cells decide when and where to deliver the molecules they produce.
Swedish industrialist Alfred Nobel created the prizes in 1895 to honor work in physics, chemistry, literature and peace. The first economics prize was awarded in 1969.

Sunday, September 28, 2014

Remember My Photo: Walking to Remember

Ready for the ALZ walk 2014!!!
I arrived at 5:45am on Saturday September 27, 2014 to the Sparks Marina. Coffee and water in tote, and decked out in my purple sweat suit compliments of Cindy Locke, a Facebook friend whom had made it for me as a gift for being Mrs. Nevada International. 

Checking Walkers in for the walk.
I helped set up the registration table. Once the walkers began to arrive I helped check them in, collected additional donations, gave them there purple wrist band and sent them on their way to meet up with their other team mates for the walk. I was greeted by many smiling faces. Young and old. All walking for different people. Loved ones, family members, mothers, fathers, bother, sisters, aunts , uncles, grandma’s,  grandpa’s, and friends.

On stage with my purple flower.....
On stage I got to represent and hold up the purple flower to symbolize that I have lost a loved one to Alzheimer’s . The tears flowed down my face from the moment I walked on the stage to the moment I came off the stage.  I was not alone with my tears. There were many in the audience that cried and held their loved ones hands.  It was clear to me that this disease knew no boundaries to of discrimination. It only knew to take loved ones lives by robbing them of their memories and then there bodies.

My Awesome Walking Team!
My walking team joined me off stage to start our walk.  We were cheered on by the UNR Cheer leaders. I was joined for the walk with several friends from Facebook. Stephanie Campbell and her husband Scott, there two darling daughters and her parents joined my team.  Also my mother in law joined me on the walk..With my team we gained strength in numbers which meant we can fight this battle together. Supporting one another and sharing each of our stories for the reasons we walk can bring us closer and break the stigma’s around Alzheimer’s.

My family joined me for a bit.
Walking with my team.

The money we raised doesn't reverse the disease yet, or bring back the ones that we have already lost along the way, but it does make us stronger together and I hope to one day say I was part of the Alzheimer’s association and we together raised money and found a cure. We had a goal to raise $500.00 to end Alzheimer’s. We raised a total of $407.00 getting to 81% of our goal. In the Reno Sparks community the goal was $125,000.00. The community raised $112,125.42 getting to 90% of the overall community goal.






At the end of the walk there is a hill. I was able to go on the hill and find the purple flower that had my grandma’s name on it to take it home with me to place in my garden.  Once the walk was complete. I checked back to see if there were any additional volunteer items to do before going home to rest.  This had been not only a memorable experience for me but an emotional journey.
RIP: Beverly Jean Charles.

Tuesday, September 23, 2014

Join us for a discussion about Alzheimer's

(CNN) -- It is the scariest diagnosis imaginable. So terrifying, it seems, that many people with early signs of Alzheimer's disease dwell for years in a state of denial.
Sandy Halperin, who was diagnosed with early stage Alzheimer's at age 60, is trying to change that. He's allowing CNN to follow him and his family as he faces his diagnosis bravely.
See the first chapter of his story here:http://www.cnn.com/interactive/2014/09/health/sandys-story/
Then join Sandy, Ruth Drew, director of family and information services for the Alzheimer's Association, and CNN producer Stephanie Smith in the comments section on this page for a discussion on Tuesday, September 23 at 3 p.m. ET.
The comments section will open a few minutes before 3 p.m. and will remain open for an hour.

Wednesday, September 17, 2014

Reduce your risk of dementia right now

 By Ben Tinker, CNN updated 7:04 PM EDT, Tue September 16, 2014
The statistics, unfortunately, are staggering. An estimated 44 million people worldwide are living with dementia, according to a report released Tuesday by Alzheimer's Disease International.
As life expectancies continue to rise around the globe, that number is expected to nearly double by 2030 and more than triple by 2050.
But there is some good news laid out in the sixth annual World Alzheimer's Report. For the first time, we're starting to get a clearer understanding of cause and effect when it comes to this debilitating disease.
Here's the takeaway, according to Alzheimer's Disease International: What's good for your heart is also good for your brain.
More specifically, there is now "persuasive evidence that dementia risk ... can be modified through reduction in tobacco use and better control and detection for hypertension and diabetes, as well as cardiovascular risk factors."
Alzheimer's is No. 6 on the Centers for Disease Control and Prevention's list of the top 10 causes of death in the United States, claiming nearly 85,000 lives in 2010.
"Given this epidemic scale and with no known cure, it's crucial that we look at what we can do to reduce the risk or delay the onset of developing the disease," wrote Marc Wortmann, executive director of Alzheimer's Disease International. "Governments must develop adequate strategies to deal with the epidemic holistically, including tacking both reduction in risk for future generations, and adequately caring for people living with the condition and supporting their friends and family."
The bottom line is that it's never too late to make some changes to improve your physical and mental well-being. Here are five things you can do right now to reduce your risk of dementia:
1. Look after your heart.
2. Be physically active.
3. Follow a healthy diet.
4. Challenge your brain.
5. Enjoy social activity.
The strongest evidence exists in linking dementia to a lack of education in early life, hypertension in midlife and smoking and diabetes across a lifetime, according to the new report.
"There's also relatively strong evidence that people in low-education countries have a higher risk for Alzheimer's and other dementias," said Keith Fargo, director of scientific programs for the Alzheimer's Association. "(This) can be controlled across the lifespan. Taking people and giving them a better education in grade school, high school, and college significantly lowers risk at the population level."
It's also important to keep our brains buzzing as we get older.
"While we don't endorse specific activity like crosswords or mazes," Fargo said, "we say, 'Find a mentally challenging activity that's fun or enjoyable for you, and you'll maintain it. That's going to be good for your brain health as you age.' "
"If we can all enter old age with better developed, healthier brains," the report concludes, "we are likely to live longer, happier and more independent lives, with a much reduced chance of developing dementia."
The global cost of dementia in 2010 (the latest year for which data are available) was estimated at $604 billion. That number is expected to rise to $1 trillion by 2030.
"With this in mind," wrote World Dementia Envoy Dr. Dennis Gillings, "we can't afford to do nothing."