Volume 20, Number 2

My Thoughts About Living with Alzheimer’s

By Cynthia Guzman

was a nurse for 30 years and during those years I did a lot of traveling. For eight years I trav-

eled throughout Mari-copa County [in Arizona] doing 300-400 miles a week and I never got lost. And I used to maintain my home inside and out and I never had trouble with that, and I had a pretty good memory. But I started having trouble with some of those things. I was getting lost and my memory wasn’t too good. So I went to the doctor and I was diag-nosed with Alz-heimer’s.

Now today, two and a half years later, I can’t do most of those things – not just a few, I don’t do any of them. I live in a retirement community so I guess I’m in retirement. I’m getting re-ally retired! But I can care for myself and like a lot of my friends, we do fine socially outside. But if you come into our rooms and follow us day-to-day and live with us for a long time, you’d see our problems.

Spring, 2015 One time when I went shopping I didn’t hear the gentleman - I don’t hear right. I thought it was 20 dollars and he said 28 and I thought, “Why are you charging me so much?” I had three items over seven dollars, but in my mind, I didn’t understand that. Then I went to the store,

and I tried to scan the stuff but I couldn’t figure out where to put the money. It was like a blank to me and I had to ask the girl to come and help me. I used to do that by myself all the time.

Then I walked outside and was getting my things ready to wait for the bus and I didn’t find my bag and I had to go back in. I didn’t even take the stuff after I had purchased it. That was like a whole bad day and I went home and went to bed. Be-

cause when I get to bed I can’t get into trouble and my mind feels so much better. That’s how I fix it. And my friends say they do the same thing.

A friend of mine was talking about spir-itual - I don’t think I have that either anymore. I think I’ve lost the spiritual part of my life. It isn’t that I don't’ believe, (continued on page 2)

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Cynthia and son, Ed, at the Alzheimer’s Association’s Memory Walk

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Some Thoughts (continued from page 1)

but it’s also not like I can go to a service and really gain anything from it anymore. I’ve had these changes and I just have to learn to live with them and go with the flow. Like when I first started having trouble, I got lost in the car and I was hav-ing trouble with the lines in the road. I couldn’t make out the white lines and what side to be on. But when they said it was probably better that I didn’t drive, I said OK, I just won’t drive then. I experience enough stress with it that I think maybe it’s good to stop.

I had to write an article one day and my friend who writes for me was out of town. I don’t know how to cut and paste [on the computer] and do all of that, so I wrote the article in an email and it took me about an hour and a half. And then out of the next 24 hours, I slept 20! It’s like

Perspectives is published by

Shiley-Marcos Alzheimer's Disease Research Center University of California, San Diego 9500 Gilman Drive- 0948 La Jolla, California 92093 Phone: 858-822-4800 Email: lsnyder@ucsd.edu

Editor:

Lisa Snyder, MSW, LCSW, Clinical Social Worker

Editorial Advisors: Staff of the Shiley-Marcos Alzheimer's Research Center

Perspectives is published quarterly and is supported by the National Institute on Aging grant P50 AG05131. Copyright 2015. Electronic formats may be printed for personal or professional use, but please do not reprint newsletter articles for other publications without per-mission. Electronic subscription is free of charge. We no longer provide printed surface mail subscriptions.

All articles, unless otherwise cited, are written by Lisa Snyder, LCSW. For citation purposes, refer to the article author, title, and the newsletter’s complete name.

physical work, but it did that to my brain. My son said, “Don’t do that anymore”, and I just had to accept that it was too much for me to do. I’m in a support group and there is some-thing about sitting at a table with people who have the same problem. The thing about some groups is that they like to fo-

cus on what they did. But I think it’s better for us to talk about what we do now because that’s where we’re at. You get such a feeling that the others really know what you’re going through. I want to tell my story so other

people get help because I’m not having a hard time dealing with this. It’s the support of my family, good doctors I’m going to, and the Alzheimer’s Association. I deal with it day-to-day and I don’t get up thinking, “Oh I have Alzheimer’s.” I just get up thinking it’s another day.

I just have to take a little bit more time. People need to go slower or repeat some-times. But they don’t need to treat me any differently because I’m OK. I am a whole person. Maybe not with the mind, but the rest of me is a whole person. People need to learn more about the disease process so they don’t look at me and think I need some special treatment. They need to treat me like anyone else.

I want people to know that it’s so im-portant that they get an early diagnosis because sometimes it isn’t Alzheimer’s. They feel that word is such a stigma that they don’t want to go to the doctor. But it’s so important that they do so they can get diagnosed correctly so they can take the medications or get a medical plan. And once they get the written diagnosis, that gets them into benefits or programs.

(continued on page 3)

“Everyone should get the help because it’s not just affecting

the person who has it. It’s affecting the people around

them. We all need help but it only comes when you’re

willing to accept that there’s something wrong.”

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Some Thoughts (continued from page 2)

It’s not just for the person with Alz-heimer’s. It’s for the family members. We didn’t ask for this disease and they didn’t do anything wrong that they have to deal with us. I compare it to going to the Grand Canyon and putting our loved ones in lawn chairs by the ledge. They see us walking towards the ledge and they think, ‘‘We see these changes but they can still walk” and they just won’t look into it. And then we fall off the ledge and then they get all excited and say, “We saw it and we should have done something about it.” My goal is to stop the falling off the ledge. I want people to do something when they see things that are going wrong. Everyone should get the help because it’s not just affecting the person who has it. It’s affect-ing the people around them. We all need help but it only comes when you’re willing to accept that there’s something wrong.

I’m running a race and our race isn’t one that we get a gold metal, but our race is one that we’re going to find an end to Alz-heimer’s. So I just want it as a legacy to have my name there with theirs that we worked as a team. I’d like to put everyone at the Alzheimer’s Association out of work. I know that doesn’t sound right but I know that when they are put out of work, then together we have worked and put an end to Alzheimer’s.

Editor’s note: Grateful acknowledgment to Cynthia Guzman and to the Alzheimer’s Association, Northern California and Northern Nevada Chapter for permission to transcribe and reprint Cynthia Guzman’s messages from their website blog. See the blog and other in-formation, and listen to her messages at: http://www.alzheimersblog.org/2014/04/18/alzheimers-person-account/

Helpful  Information  About    Young-­‐Onset  Dementia  

oung-onset (also know as early-onset) dementia occurs in people under age

65. It is estimated that one in ten people with Alzheimer’s or a related dementia are young-onset. Cynthia Guzman, diagnosed at age 63, (see cover story) and the new book, “On Pluto” (reviewed on page 4) both reflect voices of persons with young-onset dementia. These individuals and their loved ones may struggle with unique financial, social, and family challenges, and there are a growing number of re-sources to address these concerns.

The National Institute on Aging’s Alz-heimer’s Disease Education and Referral (ADEAR) has a great deal of written materials for young-onset families:

http://www.nia.nih.gov/alzheimers/early-onset-alzheimers-disease-resource-list This section is directed specifically to chil-dren and teens:

http://www.nia.nih.gov/alzheimers/resources-children-and-teens-about-alzheimers-disease Alzheimer's Foundation of America has an excellent teens program for families who still have children at home:

http://www.afateens.org/ The Alzheimer’s Association also provides helpful information on their website at:

http://www.alz.org/i-have-alz/if-you-have-younger-onset-alzheimers.asp

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BOOK REVIEW

On Pluto Inside the Mind of Alzheimer’s

By Greg O’Brien

Reviewed By Daniel Kuhn, LCSW

On Pluto: Inside the Mind of Alzheimer’s is both a memoir and a personal account of Greg O’Brien’s experi-ence of young-on-set Alzheimer’s disease. A head injury sustained in a bicycle accident evidently un-

masked the disease that he believes was inherited from his mother and grandfa-ther. A veteran journalist and publisher, O’Brien records his thoughts and feelings about the disease since he was diagnosed at age 58. Due to remarkably well-pre-served writing skills, he produced this book seven years later.

From the beginning, O’Brien states that his goal is not to describe “a pity party” but rather to offer an insider’s guide of how to battle this disease for as long as possible. He explains his anger and sad-ness about having his career cut short and becoming dependent upon his family and friends. However, he deepens his appreciation for them as well as other im-portant figures and events in his life.

O’Brien uses the metaphor of the mysteri-ous planet Pluto to describe his experience of Alzheimer’s. The pivotal point in his story is the actual diagnosis when he entered a phase of “full-throttle denial.” But in due time he makes a choice to make the most of his situation in spite of his erratic symptoms that eventually become a pattern to be

reckoned with on a daily basis. He heeds his doctor’s advice to remain as physically and mentally active as possible. He re-flects upon the blessings of his early years within a large family, his wife and chil-dren, and an award-winning career. And he compares his struggle with Alzheimer’s with how his aging parents dealt with their own illnesses.

O’Brien is coming to terms with a disease that is slowly robbing his intellectual skills that had served him well. At once fighting and accepting his fate, he describes the delicate balance between living and dying and how to appreciate the past as well as the present moment.

+++++++++++++++++++++++++++++ Daniel Kuhn is author of Alzheimer’s Early Stages: First Steps for Family, Friends and Caregivers (third edition, 2013).

A WEBSITE TO EXPLORE

The Alzheimer’s Society is the primary organi-zation devoted to Alzheimer’s disease and re-

lated dementias in the United Kingdom. Their extensive website has an excellent section on “Living with Dementia” with a wealth of practical information and personal testimonies from people with dementia on topics including dealing with memory loss; remaining independent; younger people with dementia; and sharing your experiences. Click on to Living with Dementia at their website at: http://www.alzheimers.org.uk/ The Alzheimer’s Society also provides a series of informative “Living with Demen-tia” booklets that are available to down-load from their website at: http://www.alzheimers.org.uk/site/scripts/download_info.php?downloadID=147

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RESEARCH UPDATE

 

he past decade has seen many disappointments in hopeful clinical trials aimed at the treatment of Alz-

heimer’s disease. It is easy to become dis-couraged or feel that progress is advanc-ing too slowly. While many scientists and families affected by Alzheimer’s or a re-lated disorder share in this impatience, it is also important to realize that each “failed” clinical trial adds to the body of knowledge essential to progress. Every person’s participation in these trials is of value regardless of the outcome.

Promising New Treatment Under Investigation

One very active area of research and clini-cal trials has been in the development of an anti-amyloid antibody. An antibody is

a kind of protein used by the immune sys-tem to identify and fight off foreign enti-ties in the body. The body commonly pro-duces antibodies to fight off viruses or infections. Pharmaceutical companies have been attempting to create an anti-amyloid antibody because abnormal amy-loid protein accumulation in the brain (amyloid plaque) is thought to be a likely cause of Alzheimer’s. However, anti-amyloid antibody studies thus far have not been successful.

Despite these setbacks, one new antibody has recently received considerable press in the scientific community. Biogen Idec’s BIIB37, (also known as Aducanumab) is an anti-amyloid antibody that appears on initial study to clear amyloid from multi-ple areas of the brain better than previ-ously studied antibodies. In a Phase 1 trial (primarily evaluating safety and tolerabil-ity of the drug) in people with mild Alz-heimer’s, the drug resulted in an improve-ment in thinking abilities in study partici-pants and indicated a stabilization of fur-ther decline when given at the highest dose. These very encouraging results will need to be replicated in much larger clini-cal trials. Based on these exciting prelimi-nary findings, the drug will skip from Phase 1 to Phase 3 in the clinical trial pro-cess with new trials likely to be announced later this year.

Finding a Clinical Trial

The National Institute on Aging’s Alz-heimer’s Disease Education and Referral Center (ADEAR) provides a wealth of helpful information to answer common questions about participating in clinical trials for Alzheimer’s or a related disorder including descriptions of over 150 trials, a nation-wide map of their locations, and online educational videos about experi-ences with clinical trials.

Call ADEAR at 1-800-438-4380 of view their website at:

http://www.nia.nih.gov/alzheimers/volunteer

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The  Importance  of  “Staying  Connected”  

 

By Lisa Rummler Communications Specialist

Alzheimer’s Association Oregon Chapter

enneth and Lucille got engaged when she was a senior in high school (he had graduated the year

before). Shortly thereafter, acting on the advice of his father, Kenneth bought a plot of land in Portland, Oregon, and the cou-ple had a house built.

Fast-forward several decades, and the high school sweethearts are still married, and they still live in the same house with a lovely backyard. They’ve spent countless hours together in and around their home, but Kenneth says he and Lucille (who has dementia) never enjoyed spending time together in their backyard as much as they did this past summer. “After dinner every night, we would sit out in our backyard, enjoy the fresh air and discuss pleasant events,” he says. “One evening, we found ourselves staring at the clouds, and it brought back memories of being children,

when we would look for shapes in the clouds. That memory inspired us to look for shapes in the clouds again and to talk about memories of our childhood.”

Kenneth says he and Lucille gained this renewed enjoyment of their backyard — and benefited from everything that came with it — thanks to Staying Connected, a health-promotion and social-support pro-gram designed for people with early memory loss, and their care partners.

Researchers at the University of Washing-ton designed the four-week program, which was funded in part by a grant from the Administration for Community Living and provided in Oregon by the state’s Alz-heimer’s Disease Research Center, and the Alzheimer’s Association Oregon Chapter. Staying Connected focuses on the benefits of social engagement for people directly and indirectly affected by early memory loss. In the program, participants learn strategies to help carry out enjoyable pas-times, how to cope — and live — with hav-ing early memory loss, how to celebrate accomplishments, and how to communi-cate one’s memory loss to others.

A key component of the program is participants’ weekly homework assign-ment: creating a “pleasant events plan.” By engaging in the activities and pastimes in their plan, individuals with early memory loss and their caregivers can fo-cus on being in the moment. As the pro-gram progresses, participants begin to

make the connection between the “pleasant events” and their im-proved mood, as well as a sense of accom-plishment.

Kenneth says Staying Connected also in-spired him and Lucille to visit places they had never been, such as certain parks and museums. He and his wife also developed a good rapport with the other participants.

(continued on page 7)

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By engaging in the activities and pastimes in their plan, individuals with early memory loss and their caregivers can focus on being in

the moment.

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“Staying  Connected”  (continued from page 6)

“It seemed kind of like a support group, and it made it easier to share your feelings,” he says. “We became particu-larly acquainted with the other two couples in the program, and we all have lunch together once a month.”

Fred and Ginger, one of the couples Kenneth and Lucille befriended in Stay-ing Connected, also had a positive experi-ence with the program, and they both rec-ommend it to anyone facing a similar situation. “We were pretty isolated,” Ginger says. “We got involved to learn more about how to cope and to get infor-mation. It was helpful to get involved with other people facing the same issues. It also made me more mindful of resources that are available, and it’s given me an outlet; I’ve become involved in a monthly [support] group.”

For Janice, who participated in a different session of Staying Connected, the pro-gram “turned into a wonderful support group. It became a safe place to ask ques-tions, and I looked forward to going to it,” she says. “It was an opportunity to inter-act with people at the same stage I was in, and it helped me have a greater under-standing that I’m not alone. And I don’t feel alone anymore.” For more information about Staying Con-nected — and how to bring the program to your community — contact Rebecca Logsdon at logsdon@uw.edu. Editor’s note: In each issue of Perspectives, we profile a program that aims to meet the educational and support needs of families facing early-stage dementia. To find out if there are available programs in your own community, contact your local chapter of the Alzheimer’s Association or other related organization. If there are no early-stage programs, ask that one be started and show them samples from Perspectives!

BRAINSTORMING

In the article on Staying Connected the author mentions the importance of having scheduled “pleasant events.” We asked participants of the early-stage support group at UC San Diego’s Shiley-Marcos Alzheimer’s Disease Research Center: “What is your idea of a “pleasant event?” Here are a few of their replies:

“I like my current events group especially when the group focus is on foreign rela-tions.”

“I like playing golf once a week.”

“I look forward to going to church. I look forward to the people more than the ser-mon.”

“I like going to the YMCA every day. I take classes and get to know the people.”

“Reading the newspaper.”

“I like to walk on the beach with my wife and dog. We walk about three miles and my dog loves it and it’s good exercise walking in the sand.”

“I look forward to watching my kitties and getting them breakfast. They make me smile and laugh.”

“I like playing bridge when it’s a good day. Otherwise when it’s not a good day, my brain feels like swiss cheese and the thoughts go through the holes!”

“I am trying to relearn the guitar. I dug it out and had to fix three broken strings.” [[

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