I'll Be Me: Effecting Change and Awareness

Building on Glen and his family’s vision for awareness of Alzheimer's disease and caregivers' support

Re: I'll Be Me: Effecting Change and Awareness

Postby Dee » Tue Sep 06, 2016 8:08 pm

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Glen Campbell Alzheimer's movie lifts awareness
By JELANI GIBSON
Weatherford Democrat.com
September 5, 2016
“I love that the (Campbell) family was willing to go public because when you have somebody who’s out there that people can identify with and relate to ... they see this happening and they take notice a little bit more. It’s really an act of courage to be willing to go public.” - Theresa Hocker, Alzheimer’s Association North Central Texas Chapter president

Read the article here: http://www.weatherforddemocrat.com/news ... ed77f.html

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Re: I'll Be Me: Effecting Change and Awareness

Postby Dee » Wed Jul 22, 2015 8:29 pm

Reducing the stigma of Alzheimer’s, one concert at a time
NorthumberlandToday.com
By Diana Storen
July 22, 2015

Ms. Storen writes about Glen Campbell and "I'll Be Me" as well as her father who had Alzheimer's disease:
(Glen) Campbell’s vulnerability in the face of such an unrelenting enemy (Alzheimer's disease) is evident, and yet in no way does this compromise his image. I admire him for allowing his plight to be made public. By his example he has given hope to so many, and has demonstrated that there is no shame in having Alzheimer’s. . . .I wish everyone could see this film.

From: http://www.northumberlandtoday.com/2015 ... -at-a-time

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Re: I'll Be Me: Effecting Change and Awareness

Postby Dee » Mon Jul 20, 2015 5:37 pm

How One Film Is Raising Awareness for Alzheimer’s
Lillypad.com
by Amy O'Connor
June 26, 2015

James Keach: "I'll Be Me" was one of the “most important personal experiences and films of my career.”

Kim Campbell: Kim’s perspective gives voice to the crucial role that millions of caregivers across the country play in helping a loved one with Alzheimer’s disease.

CNN: In conjunction with the June 28th broadcast of "I'll Be Me", CNN brought attention to a disease that impacts nearly 5.3 million Americans and their families and "illuminate(d) pathways toward progress in the fight to end Alzheimer’s".

Eli Lilly and Company: sponsored "Glen Campbell: I'll Be Me" and helped "to share Glen’s amazing story with the world."

Read the article at: http://lillypad.lilly.com/entry.php?e=7478

And don't miss Amy O'Connor's June 24th article, "The Rhinestone Cowboy Takes on Alzheimer’s Disease", posted at: https://lillypad.lilly.com/entry.php?e=7344

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Re: I'll Be Me: Effecting Change and Awareness

Postby Dee » Tue Jun 30, 2015 7:56 pm

Relegating Alzheimer's Disease to the History Books
by Senator Edward J. Markey of Massachusetts
Huffington Post
June 30, 2015

Glen Campbell has been waging an inspiring battle against the disease with music and the love of his family. They are heroes, but even heroes need help. Only with significant funding for innovative research will we succeed in finding a cure so that someday Alzheimer's disease will be found only in the history books.

http://www.huffingtonpost.com/rep-ed-ma ... 01248.html

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Re: I'll Be Me: Effecting Change and Awareness

Postby Dee » Wed Jun 24, 2015 12:31 am

Special Screening Event
"Glen Campbell: I'll Be Me"
June 11, 2015
By Dee

Part II: The Panel Discussion

Continuing my post about the special “I’ll Be Me” event at UMBC that I attended, I am happy to share highlights from the panel discussion that preceded the screening of Glen’s documentary. I have paraphrased some of the discussion and also provided quotations.

To re-cap, the panel discussion was led by Jackie Harris, President and CEO of Integrace. The panel participants included:

Kim Campbell
Ashley Campbell
Cass Naugle, Executive Director, Alzheimer’s Association Greater Maryland Chapter
Dr. Nicole Absar, Medical Director, Copper Ridge Outpatient Assessment Clinic
(pictured left to right below)

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Dr. Absar discussed the importance of determining the point at which we need to find out what is happening with a person who appears to have symptoms of Alzheimer’s disease. It is critical to find out what type of memory issue the person is experiencing. Is it a memory issue due to Alzheimer’s or is it a memory issue due to a sleep disorder or another disorder that might be treatable? For example, depression can mimic dementia; therefore, evaluation and assessment would be needed to determine if symptoms are caused by depression and not Alzheimer’s disease.

Furthermore, it is important to understand that memory loss may not be the first (or obvious) symptom of Alzheimer’s disease. For example, are personality changes evident? Or other changes?

Dr. Absar: “We are concerned about forgetfulness when it becomes consistent and unlike (that person) before (these symptoms became evident). We are underdiagnosing Alzheimer’s because there are other criteria – a person’s memory does not have to be bad; other things can be present that still indicate that this person has Alz’s. This is when we need to seek help. Early diagnosis is very crucial.”

Jackie Harris asked Ashley Campbell: “I have gotten to know you over the last year – you have such a positive outlook. How do you continue to remain so positive as you watch your father go through this disease process?”

Ashley: “I have always tried to look at it as: it’s not about me, it is about him. I have a job to do and that job is making his transitions easier for him and making him feel comfortable and safe. This definitely helps to keep my mind off of any kind of sadness that I am going through…I am very sad. But you know, when you have a job to do, it is a lot easier to manage that sadness. So, I just try to keep the focus on my Dad because I don’t have Alzheimer’s, and so it is not about me, it is about him.”

Jackie asked Kim Campbell: “I have also had the opportunity to get to know you over this past year and to watch you on this journey that you are taking with Glen, handling it with such grace and love and, oftentimes, … with humor. How have you taken care of your health needs with the stress of being a caregiver?”

Kim: “There definitely is a lot of stress to being a caregiver, and there are many times, many days, nights that it does get you down, and it is crushing. Sometimes the depression is debilitating…but like Ashley said, I do have to take care of myself to take care of Glen, he is the one who needs help.

I have been blessed to have a support system:

--Our children have been there for us, not … just to take care of Glen but to take care of me; they give me the breaks that I need.

--Friends. In the film, you will see a friend we call the “golf angel” who, when we were in Malibu, which is where we lived, would come and get Glen every day and take him to play golf. That gave me a really good break to do some things for myself like (taking) a ballet class or having lunch with a friend. You need to stay connected to other people, your friends, your life; connect with who you are because caregivers often (tend to) isolate themselves. They feel like they need to stay home and take care of their loved one. … We tried to just keep living our lives and just being who we were as long as we could. Surround yourself with friends.

--I have to say it is mostly my faith in God. I prayed a lot, and I just trusted that we are on this journey for a reason and that He would give us strength to face each day.

--And then the love that Glen and I have for each other. Also, the love we have as a family. Love, faith, friends, that’s what it is all about.”

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Jackie asked Cass Naugle for three recommendations for caregivers. Cass suggested:

“Learn everything you can about the disease. You do not need to do this alone.
Develop a network of support.
Learn how to accept change and the next phase. Learn what you can do, so you can plan ahead as a caregiver.”

Cass added, “It is hard to go out there and talk to people about what this (Alzheimer‘s) is…it is so hard to explain.”

Jackie asked Kim: “Was it difficult for you, as a family, to do that (go out there and talk to people about Alz’s)? You were a vibrant family out in the public’s eye, and then this (diagnosis) happened. How difficult was that? How did you handle it?”

Kim: “When we first received the diagnosis, I didn’t know anything about Alzheimer’s. The Alzheimer’s Association was one of the first websites I visited to educate myself. We let some of our friends know what was going on, and they started giving me books, and so I started reading (about the disease). I would share things I was learning with the kids and with our friends. We just began to equip ourselves with the knowledge we needed to keep Glen happy and content, to support his strengths, and to compensate for his weaknesses; to give him the support he needed to continue being who he was and doing what he loved.

It is a continual learning process because you go through so many different stages of this illness—and (the stages) … overlap, too. It is different for everybody. Alzheimer’s disease is really a strange disease to navigate but we just take each day as it comes. When you love somebody, you just do whatever it takes and roll with the punches. That is how we approached it.”

Dr. Absar then spoke about the availability of treatments for Alzheimer’s disease. She said that there are a few treatments—some of these treatments have mixed results on a phase two and a phase three level. Most of the research is focused on how to break down amyloid, how to clear it from the brain neurons. Research is also focused on finding out if there is any way of decreasing the production of amyloid.

Researchers are also looking at how to modify this disease, said Dr. Absar. By combining therapies, there is a better chance that the progression rate of the disease will slow down--better than when only one therapy or treatment is used.

The usage of Vitamin E is also being looked at again.

“We have a lot of promising new research coming,” said Dr. Absar. “However, the most important research is, like Kim and Ashley have said, family. How can we strengthen the skills of a person with Alzheimer’s disease, and how can we stimulate the person’s strengths? (This is important) because if we focus on the disability model, then what you lose, you lose. How can you focus on the strengths they have? (I’ll Be Me) is a film about strength. I am amazed by Kim and Ashley and her brothers: how wonderfully strong they were (in the film) and how they challenged the disease. (They showed) that mind matters. Mind power (helped Glen)."

Jackie then asked the audience: “How many people in this audience either have or know someone with Alzheimer’s or is caring for somebody that does have this disease?” (Most of the audience raised their hands.) In response to the show of hands, Jackie said, “This never changes. It doesn’t matter where we are and how we ask this question, it is almost everyone that is touched by Alzheimer’s in some way.”

Jackie asked Ashley: “What advice would you give to this group who all just raised their hands in regard to how you have managed in the way that you have?”

Ashley: “I think a lot of people look at Alzheimer’s and dementia as a journey because it is a progressive disease, there are steps, and you never know if it is going to be a quick decline or if it is going to be a long one. I would say, just get in the roller coaster cart next to (the person with Alzheimer’s), and put the bar down, and just be on the ride with them, experience it with them, and help them through everything they do.

I’ve always found this piece of caregiving advice very useful and that a lot of people ask me about it:

When they (a person with Alzheimer’s) are having trouble remembering something, just act like it is the first time. Don’t say that you just did this or you just ate or you just asked that question five times because that frustrates them, and it makes them feel like there is something wrong with them.

Don’t make them feel like there is something wrong with them—just focus on what is right and cherish every moment. Get to know them as who they are at that moment and don’t completely hold on to who they were. We are all changing as we go through life; we aren’t the same person we were when we were twenty (years old). … Just appreciate who they are at the moment.”

Jackie to Ashley: “You and your Mom have just been, and are, and continue to be such wonderful role models as caregivers, and I think that seeing that is very helpful.”

Jackie to the panelists: “As we close the panel, I want to do a couple of things. I want to thank the panel for being here, thank you for your insights and for your commitment to this work every day."

Jackie to Kim: “I can’t imagine anyone better to introduce this documentary (I’ll Be Me) than you. Could you say a few words to introduce the story for us?”

Kim: “Glen was diagnosed with NCI (cognitive impairment) in 2009. The doctor said that sometimes NCI changes into Alzheimer’s and sometimes it doesn’t. The doctor advised to bring him back (for evaluation) yearly. In 2011, Glen had just finished this beautiful album called ‘Ghost On The Canvas’, it got great reviews, we were all set to go out on this wonderful tour, our kids—we have three children together--had been playing in his band, so we were all excited about promoting this album, and then we got the diagnosis of Alzheimer’s disease. It was shocking. I knew that there was a possibility that that could happen, but I had hoped it wouldn’t. When we learned the diagnosis, we had to sit down with our team and discuss what do we do? Are we going to go out and do this tour? The doctor had told me that ‘if Glen is still functioning well and he enjoys (touring), I think it would be good for him.’ And Glen said, ‘I feel fine, I want to go out and do my tour!’ We discussed what if there are problems, what if you forget lyrics, chords, or have some difficulties (when performing)? Glen said, ‘I’ll just tell them I got Alzheimer’s!’ (big laugh from the audience) ‘No big deal’, he said. So, we said okay…. It was Glen’s decision to go public with the diagnosis.”

(Kim then described how Julian Raymond urged James Keach and Trevor Albert to meet the Campbell family because Julian believed that they were living a story that should be shared with others.)

“We were afraid of what the public would think, maybe they wouldn’t buy tickets to see Glen. However, our first show was sold out, standing room only! The crowds (of fans) came out to support him and love him and root for him. We didn’t realize how many families around the country were affected by Alzheimer’s, too. So, (the audiences) were really empathizing with our journey. What started out as five weeks turned into 151 shows. The documentary just started snowballing, we ended up going to Washington and lobbying, and we started feeling like we were making a difference. Also, we were learning and being educated ourselves, so it is an amazing journey. (The documentary) was a blessing to our family, it is funny and uplifting…. We are so proud of Glen for doing it.”

The audience warmly applauded the panelists, and then the screening of “Glen Campbell I’ll Be Me” took place.

(Scroll to Part I if you haven't already read about the audience’s reaction to the documentary and about Ashley’s musical tribute that followed the film screening.)

I wish all of you an opportunity to attend a special screening of “Glen Campbell: I’ll Be Me” to support Glen Campbell and his family, to support their film, and to support Alzheimer’s awareness. If you have attended a similar screening, I hope you will share your experience with us here on the forums!

Many thanks to the Erickson School at UMBC for contributing photos for this post and to all of the sponsors who made this event possible. --Dee

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Re: I'll Be Me: Effecting Change and Awareness

Postby Dee » Thu Jun 18, 2015 11:06 pm

Special Screening Event
"Glen Campbell: I'll Be Me"

June 11, 2015
By Dee

Part 1: Background, A Warm Welcome, Film Screening, and Musical Tribute

Glen Campbell Forums now has over 40 pages of reviews, articles, links to videos, comments and discussion about “Glen Campbell: I’ll Be Me”. I thought readers and members might like to read about an “I’ll Be Me” special event that was held on June 11th to provide a screening of Glen’s film and to help promote awareness of Alzheimer’s disease and caretaking issues.

This special event was held at the Erickson School at the University of Maryland Baltimore County (“UMBC”). The Erickson School offers an innovative, cutting edge graduate program to educate people to manage services that other people will need as our population ages. The program integrates aging studies, management, and public policy. According to the school’s program brochure, “no other graduate program in the world integrates these three components” for developing the next generation of leaders in aging services. Two thousand students are currently enrolled in this program.

The event sponsors were UMBC Management of Aging Services / The Erickson School, Integrace, and the Alzheimer’s Association Greater Maryland Chapter.

In addition to the screening of “I’ll Be Me”, a panel discussion was held to discuss the film and honor Glen. The panel included four speakers with special guests, Kim Campbell and Ashley Campbell. Post-film, a musical tribute was performed by Ashley.

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I was fortunate to have been able to attend this event and, for many reasons, it is one that I will never forget.

As soon as I approached the newly-constructed Performing Arts and Humanities Building ("PAHB") on the campus of UMBC where the “I’ll Be Me” event was being held, I felt as if Glen Campbell himself was being welcomed. Special signage labeled with “I’ll Be Me” was posted on campus to direct guests to the parking lot and building. The parking attendants were wearing official “I’ll Be Me” t-shirts with the documentary’s original graphic design. Not even the Nashville Film Festival site, where “I’ll Be Me” premiered, felt as celebratory of “I’ll Be Me” as UMBC’s event! See photos below:

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After I parked my car, I spoke to two parking attendants who, I later learned, were graduate students at the Erickson School. I asked them about their “I’ll Be Me” t-shirts (actually, I said, “I want your shirts!” lol), explaining that these t-shirts were very rare! The students shared with me that they were honored to work (actually, volunteer) for this event because it was an important one that would help educate people about Alzheimer's disease. Also, they considered it a "historic event” for their university.

During our conversation, one of the students said to me, “We are glad to do this for Glen”, and then he put his hand over his heart. Readers, I thought I would lose my composure right there in the parking lot. It was all I could do to not cry, I was so touched by this man’s passion for ‘the cause’ and for Glen Campbell and his film. He and I then spoke about the need for Alzheimer’s awareness and the need for funding to find a cure. Exasperated, he said, “even a (former) president, Ronald Reagan, had Alzheimer’s—and we still don’t have a cure.” [Ronald Reagan publicly announced that he had been diagnosed with Alzheimer’s disease in November 1994. Twenty-one years ago.] After thanking these remarkable students for volunteering “for Glen”, I left their company and went to the performing arts building.

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The lobby of this building was Glen Campbell friendly, too, with a large “I’ll Be Me” poster on display, welcoming staff and volunteers, and giveaways for guests.

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Representatives from Integrace and the Alzheimer’s Association were present, and I asked one of the volunteers from AA about how I could obtain information to learn how to handle a personal family matter (my Mom has Alzheimer’s disease), and she provided me with advice right on the spot and shared a similar experience that she had had with a family member.

By this time, I was feeling a great vibe from this event because fans of Glen Campbell were present as well as people who were willing and able to discuss Alzheimer’s disease knowledgeably. I have personally found that unless I attend an Alzheimer’s-related event hosted or sponsored by professionals who specialize in Alzheimer's disease/dementia/caretaking, there really aren’t “Alz’s aware” people with whom I can discuss and question Alz’s-related issues. For example, even my family doctor has not been a source of guidance or information for me.

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After the theatre doors opened and about 275 patrons and special guests were seated, a panel discussion, introduced by Jackie Harris, President and CEO of Integrace, was held. Panel participants included:

Kim Campbell
Ashley Campbell
Dr. Nicole Absar, Medical Director, Copper Ridge Outpatient Assessment Clinic
Cass Naugle, Executive Director, Alzheimer’s Association Greater Maryland Chapter

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From the introductions of the panelists, it became quickly evident that Kim is highly regarded by the Erickson School, the school considers her “part of the faculty”, and the staff have learned and are learning about Alz’s-related issues from her. Also, Kim had previously liaised with the school for an event held last January, “The Memory Care Summit 2015: The Positive Case for Change in Dementia Services.” At this event, Kim and other guest speakers addressed practical issues for the future of caring for those persons with memory impairment and their families.

It was mentioned that this “I’ll Be Me” event was the first event held by an outside group in UMBC's new performing arts building, and the University at-large (in addition to the grad students whom I met) therefore considered it a historic event in addition to a very special event for Alzheimer's disease awareness.

At this point, I am going to "fast forward" to the film screening and Ashley's tribute and then separately post information shared by the panelists.

After the panel discussion concluded, Kim introduced “Glen Campbell: I’ll Be Me” and then the documentary was shown. I have attended several public screenings and one private screening of "I'll Be Me", and this audience seemed to be the most appreciative one. They laughed in all the “right” places, picking up on every nuance of humor in the film. They even laughed appreciatively when Glen Campbell ended his performance of “Rhinestone Cowboy” with his typical “…and cowgirl” at the 2012 Grammy Awards, one of the many highlights in the documentary. I heard quiet exclamations when the audience watched the brief segment in the film of Glen appearing on “The Glen Campbell Goodtime Hour” (a funny scene with, if I remember correctly, the Smothers Brothers, Glen, and a hippo). There were quiet expressions of sorrow and sympathy during sad, disheartening scenes. As soon as the film's last scene ended, the audience applauded immediately before the credits rolled. When the house lights came up, I asked the person seated next to me what she thought of the film. She couldn’t answer me; too late I realized that tears were streaming down her face. (I had spoken to her briefly before the panel discussion started. Her husband had passed away six years ago from Alzheimer’s disease and she was a Glen Campbell fan.)

Ashley Campbell was re-introduced, and then she sang three beautiful songs accompanying herself on acoustic guitar. The songs were: a new song she has written (title unknown…possibly “A New Year, A New Me”); "Blackbird”, which she introduced as “one of my favorite Beatles’ songs and one of the first I learned on the guitar”; and “Remembering” which Ashley had written for her father. She explained the meaning behind this last song: “I … wrote it to say something to my Dad, to say you don’t have to worry, I got you, I got your back.”

[Click on each image once to enlarge viewing window:]

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Ashley’s musical tribute was a wonderful and moving ending to a most special evening.

(Many thanks to the Erickson School at UMBC for contributing photos for this post. --Dee)

See Part II: The Panel Discussion

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Re: I'll Be Me: Effecting Change and Awareness

Postby Cowpoke » Fri Jun 12, 2015 5:05 am

JAA’s Memory Care Programs get boost from Glen Campbell film

"I'll Be Me", screened on June 4 at the SouthSide Works in Pittsburgh, PA, was presented as part of the Jewish Association on Aging's fundraising event to raise awareness and funds for its Memory Care Programs. Interesting article with quotes from Ashley Campbell.

Image

“I think the music was keeping him sharp,” she said of the tour. “[But now] the memory support community is where he feels safe to just be.”

From: http://thejewishchronicle.net/view/full ... pbell-film

Ashley also performed a musical tribute to her Dad at this event.
Here is Ashley singing "Remembering":



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I'll Be Me: Effecting Change and Awareness

Postby Dee » Mon Jun 01, 2015 7:50 pm

Seniors learn about life with Alzheimer’s from country music icon
By Ron Mizutani
khon2.com
May 14, 2015

"Glen Campbell: I'll Be Me" helps residents of a care facility to understand Alzheimer's disease. Following are comments from two of the residents who saw this documentary:

“When we have someone like Glen that will share his story with us, then we wake up and face what’s ahead. For many of us, we don’t know from one minute to the next.” (Gladys “Pepper” Hartness)

“For them (the Campbell family) to share, takes a lot of guts.” (Gene Kaneshiro)

“I think that everyone will stop to give it a little more thought than they have because many of us, you try to push these things aside, deny what’s happening instead of facing up to the fact,” (Gladys “Pepper” Hartness)

Read more at: http://khon2.com/2015/05/14/seniors-lea ... usic-icon/

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I'll Be Me: Effecting Change and Awareness

Postby Dee » Fri May 22, 2015 8:14 am

SMC symposium to focus on public health policy
Can Mainstream Entertainment Affect Public Policy?
By Grace Smith
Santa Monica Daily Press
May 10, 2015

The Santa Monica College Public Policy Institute will present its 4th annual Spring Symposium from May 11-14. This event will include a screening of music legend Glen Campbell’s compelling documentary, “I’ll Be Me”, covering his unprecedented tour across America after receiving a devastating diagnosis of Alzheimer’s disease. A post-screening discussion with executive producer Susan Disney Lord and producer Trevor Albert addresses leveraging the medium of film as a stimulus for how public policy and entertainment co-exist and can provoke activism.

For more information about this event, visit: http://smdp.com/smc-symposium-focus-pub ... icy/147859

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