Volume 14, Number 3

Living Each Day with Alzheimer’s

By Phil Reinoehl

am 59 years old and in September, 2007, I had what has been described as possible mini-strokes or TIA's. Af-

ter finally getting to the right kind of doc-tor (a neurologist) and having all the proper testing done, I was diagnosed with Alzheimer's in March of 2008. I went through a few months of depression and just quit living. I thought my life was over. All I knew about dementia or Alz-heimer's was what I had heard about this nasty disease.

A good friend of mine, unknown to me, knew something was not right with me for a couple of years even before I had the episodes in September. She had been checking my symptoms out online without me knowing it. In addition to helping me see that I needed to get checked for Alzheimer’s she also finally convinced me that my life was not over.

Also about the same time another doctor I was going to for another medical condi-tion explained to me it was not the Alz-heimer’s that was causing me all the problems I was having but my depression that was the cause. It was like I was hit in the head with a baseball bat. I could have

February – April, 2009 a decent life and still feel good about living as long as I made some changes to learn to live with the disease. I could ei-ther let Alzheimer's manage my life or I could learn to mange the Alzheimer's and depression. Over time I made changes to live my life the best I can.

First, I changed my view of mental illness. I, and too many other people, viewed mental illness as a weakness of the mind like the movie "One Flew over the Cuckoo’s Nest." Now that I have Alz-heimer’s, I am not ashamed nor do I think I have to keep quiet about what is going on with me. I changed my attitude and

accepted what I have and started to live like I have preached for many years, one day at a time. This is a list of what I do on a daily basis:

1. Make a written list each evening of what I want to do the next day.

2. Do the same daily routine at the same time. Eat breakfast, get cleaned

up, and then do anything else I need to do.

3. I slowed down my walking. If I make a quick turn I lose my balance.

4. Avoid stress at any cost. I even ended a relationship with a friend who was having a difficult time handling my condition and where it is leading. I believe stress will cause my brain to get worse faster. (continued on page 2)

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Perspectives

A Newsletter for Individuals with Alzheimer’s or a Related Disorder

Phil Reinoehl

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Living Each Day (continued from page 1) 5. Years ago when I quit drinking, one of the steps was turning the problem over to a "Higher Power" which I know is God. So I have turned my medical problems over to Flops (Alzheimer's) and Flossie (depression). When something happens, I think of it as a Flops or Flossie moment. 6. Faith and trust. I always thought I had faith and trust, now I am living it. I have faith and trust I will be able to deal with each day one day at a time. Maybe I will find out differently as time goes on, but for today it gives me a lot of peace not to worry about it.

“Now, I do not live beyond today; I do not live in yesterday or expect anything from tomorrow except what it brings and I will deal with it then.” I am really excited about my life now, but for a long time, I wasn’t. It has been over 10 years since I first noticed I did not have any vision of a future for myself. Before then I always had something to look forward to. But, somewhere along my journey I lost that vision. I still do not know what happened; I think it may have had something to do with the earliest stages of my brain going haywire. Now, I do not live beyond today; I do not live in yesterday or expect anything from tomorrow except what it brings and I will deal with it then. I am more at peace and content with what is going on and I love humor. I think and feel God is alive and guiding me along my path. I have trust and faith that I am where he wants me to be. If not, I would be somewhere else, wouldn't I?

ANNOUNCING:

Austin's Camp Building Bridges

f you are a young teen, ages 13-16, and have a parent or grandparent

with dementia there is a place where you won't feel alone. Austin's Camp Building Bridges is now in its second year of develop-ment.

Attendees receive one day of educational services during a week filled with activities and are able to meet others like themselves who have a parent or grandparent with Alzheimer's or Fron-tal Temporal Dementia. The teenagers are able to form a connection amongst them-selves and to realize that they are not alone on this caregiving journey.

Camp is being held July 19th-25th in Chouteau, Oklahoma. Scholarships are available. To find out more, contact Tracy or Allen Mobley at 417-933-5520 or through e-mail tiger@centurytel.net.

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: 858-622-5800 Fax: 858-622-1012 Email: lsnyder@ucsd.edu

Editor: Lisa Snyder, MSW, LCSW, Clinical Social Worker

Editorial Advisors: Robyn Yale, MSW, LCSW 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 2008. 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. Sur-face mail subscription is a requested $20.00 donation.

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.

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Mailbox Dear Readers:

It’s easy to always look at our own faults, whether it’s something about the way we look or the fact we were late for an appointment, or couldn’t remember we had an appoint-ment. The North Shore’s Early Stage Sup-port Group (North Vancouver, British Columbia) decided to look at the positive – at what we admire about ourselves. One by one, we answered the question: What’s one of my best qualities? What a great group we turned out to be! Here are some of the qualities our members are proud to claim:

“I’m a kind person.”

“Friends tell me I’m a good friend to them.”

“I’ve always been an organized person.”

“I’m patient.”

“I’m learning to be less stressed.”

“I don’t judge other people.”

“Even though I’ve never had a lot of self- confidence about myself, I’ve been a pretty good mom and wife.” “I make time for what’s most important in my life – my family.”

The North Shore Group would like to sug-gest that other groups try the same thing in your next meeting and let us know, through our Insight newsletter, what your best qualities are. One last tip: try not to compare yourself to others or even to the way you used to be before your diagnosis. Remember, “comparison is the thief of

joy.” Regardless of dementia, you are still you!

Sincerely,

Participants of the North Shore Early-Stage Support Group, North Vancouver British Columbia, Canada To reply to the North Vancouver support group members, send your comments to:

Mail: Alzheimer Society of B.C. #300-828 West 8th Avenue Vancouver, BC V5Z 1E2 Canada

Fax: (604)-669-6907

Email: info@alzheimerbc.org. This letter is reprinted with permission from Insight – A Newsletter for and by People with Dementia, December, 2008. To request information about this Canadian newsletter, write, phone, or email to the above contact information.

Let Us Hear From You

Perspectives newsletter is written by and for people with Alzheimer’s or a related disorder and we value hearing from our readers. Let us know how you are coping with symptoms, managing day-to day life, dealing with feelings, or finding mean-ingful activity. If you have helpful tips, resources, or advice, please share it with others. We also value poetry or other creative expressions. While we cannot guarantee that we can publish everything we receive, we will do our best to reply to your correspondence.

We also aim to be a source of information for our readers. If you have any questions about Alzheimer’s or a related disorder, just submit the question by mail or email to Lisa Snyder at the contact information on page 2.

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Informative NEW Resources

The National Institute on Aging (NIA) has released the latest edition of the Progress Report on Alzheimer's Disease, a summary of Alzheimer's re-search conducted or sponsored by NIA and other components of the National In-stitutes of Health (NIH).

2007 Progress Report on Alzheimer's Disease: Discovery and Hope describes NIH's important AD research effort. The 48-page publication begins with an introduction followed by a brief primer on AD that reviews the main features of the disease, discusses the causes, and de-scribes how AD is diagnosed and treated. The main section high-lights recent advances in nine topic areas:

Improving Our Understanding of AD

Learning About Cognitive Aging

Normal Cognitive Aging, Cogni-tive Decline, and AD: What's the Difference?

Accelerating the Search for Genetic Causes and Risk Factors

Attention to Non-Genetic Risk and Pro-tective Factors Pays Off

Exploring All Possibilities to Improve AD Diagnosis

Making the Most of Translational Re-search

Supporting the Gold Standard: AD Clini-cal Trials

Helping Caregivers Cope

To download or order free copies of the 2007 Progress Report on Alzheimer's Disease, visit:

http://www.nia.nih.gov/Alzheimers/Publications/ADProgress2007/ or call the Alzheimer's Disease Education and Referral Center at 800-438-4380. The By Us For Us Guides are a series of guides created by a group of persons with dementia in the Ontario, Canada area. The guides are designed to equip persons with dementia with the necessary tools to enhance their well-being and manage daily challenges. The first three guides were published in 2007 on the topics of Memory Workout, Managing Triggers, and Enhancing Communication

and were reviewed last year in Perspectives newsletter. This year brings the introduction of two additional booklets, Enhancing Wellness and Tips and Strategies.

The Enhancing Wellness Guide focuses on how en-hancing physical, psychologi-cal, emotional, social, and spiritual well-being can help persons with Alzheimer’s or a related disorder live full lives. The booklet provides tips on

healthy eating, physical activity, main-taining connections with others, and en-hancing overall wellness.

The Tips and Strategies Guide con-tains ideas and suggestions for daily living with memory loss and other symptoms of a dementia. The booklet includes addi-tional memory “workout” ideas, tips for those in the workforce, and general recommendations and strategies for daily living.

To order copies of the guides, visit the MAREP website at: http://www.marep.uwaterloo.ca

or phone Janet Mooney (in Canada) at 519-888-4567 ext. 32920.

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Photo: Ed Heiland Brain Fitness Club participant playing

Nintendo Wii bowling

Graduate students provide one-on-one therapy and then play games such as bowling with their clients through the Brain Fitness program.

The Brain Fitness Club

wice a week for 4 hours, a group of 12 adults meet at the First United Methodist Church in Winter Park,

Florida for the Brain Fitness Club. This collaborative program incorporates stu-dents from the University of Central Florida (UCF).

The program was founded by Nancy and Tom Gerrity. Tom was diagnosed at age 55 with early-onset Alzheimer’s. The former engineer could no longer work, but he was able to be by himself during the day with-out any difficulties. There was only one problem — he was “terribly bored.” There was “a support group and adult day care, but nothing in be-tween,” Nancy said, so she decided to start a program on her own. “It’s just a dream come true…to see how folks are benefiting and getting the stimu-lation, where they would just be sitting at home.”

Dr. Janet Whiteside, PhD, clinical in-structor at UCF’s Communicative Disor-ders Clinic supervises graduate students who create an individualized plan of care for each member. The clinicians evaluate the members’ thinking and communica-tion abilities and design exercises around them. The members have one-on-one therapy 40 minutes each week. At the end of the session, members are provided with a binder of exercises tailored to their in-terests and abilities that serves as their daily homework for mental stimulation. According to Whiteside there are groups that provide mental stimulation for people with dementia, but the Brain Fitness Club offers a level of therapy that is not

provided elsewhere.

“You don’t find many places like this,” says 78 year-old Bob Tomcavage. He says he looks forward to his time at the club and being with the other members. “When you come to a place like this you have a different attitude,” he said. “I come here, and I am different…It’s like giving you a gift. They work with you, and they talk with you.”

When not working individually with the graduate students, the members are en-gaged in group activities that stimulate the brain like word games, problem- solving activities, and creative writing or

physical activities like ping pong, pool, foos-ball, bowling on the Nintendo Wii, or at-tending line dancing les-sons. It’s a fun, stimu-lating environment that is geared to serve indi-viduals experiencing early memory loss.

“Our philosophy is challenge without frustration,” said Peggy Bargmann, R.N, coordinator of the pro-gram. “The program is designed to stimulate the brain and build new con-nections.”

“Everything they do teaches us some-thing,” says Fred Tombros, a member of the club. Bob Tomcavage thinks the work is making a difference. “I can go home and go into the closet and remember what I was in there for,” he says with a laugh.

For more information about the Brain Fitness Club, contact Peggy Bargmann at pbargmann@cfl.rr.com or 407-927-4380. Adapted from an article in the March 16, 2009 issue of e-Review Florida United Methodist News Service. Permission for reprint granted by Tita Parham, managing editor.

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Principles for a Dignified Diagnosis

Principles for a Dignified Diagnosis is written by people with dementia

on the subject of the Alzheimer diagnosis experience.

n the 2008 report Voices of Alzheimer’s Disease: A Summary Report on the Nationwide Town Hall

Meetings for People with Early-Stage Dementia, the Alzheimer’s Association identified diagnostic challenges and dis-satisfying interactions with the medical community as two major challenges ar-ticulated by people living with the disease. These principles are their insights on how to make the experience better. Talk to me directly, the person with dementia.

I am the person with the disease, and though my loved ones will also be af-fected, I am the person who needs to know first. Tell the truth.

Even if you don’t have all the answers, be honest about what you do know and why you believe it to be so. Test early.

Helping me get an accurate diagnosis as soon as possible gives me more time to

cope and live to my fullest potential and to get information about appropriate clinical trials. Take my concerns seriously, regardless of my age.

Age may be the biggest risk factor for Alzheimer’s, but Alzheimer’s is not a nor-mal part of aging. Don’t discount my con-cerns because I am old. At the same time, don’t forget that Alzheimer’s can also af-fect people in their 40s, 50s, and 60s. Deliver the news in plain but sensitive language.

This may be one of the most important things I ever hear. Please use language that I can understand and is sensitive to how this may make me feel. Coordinate with other care providers.

I may be seeing more than one specialist – it is important that you talk to my other providers to ensure you all have the in-formation so that changes can be identi-fied early on and I don’t have to repeat any tests unnecessarily. Explain the purpose of different tests and what you hope to learn.

Testing can be very physically and emo-tionally challenging. It would help me to know what the purpose of the test is, how long it will take and what you expect to learn from the process. I would also ap-preciate the option of breaks during longer tests and an opportunity to ask questions. Give me tools for living with this disease.

Please don’t give me my diagnosis and then leave me alone to confront it. I need to know not only about medical treatment (continued on page 7)

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A Dignified Diagnosis (continued from page 6 ) options but also what support is available through the Alzheimer’s Association and other resources in my community. Work with me on a plan for healthy living.

Medication may help modify some of my neurological symptoms, but I am also in-terested in other recommendations for keeping myself as healthy as possible through diet, exercise, and social engage-ment. Recognize that I am an individual and the way I experience this disease is unique.

This disease affects each person in differ-ent ways and at a different pace. Please be sure to couch your explanation of how this disease may change my life with this in mind. Alzheimer’s is a journey, not a destination.

Treatment doesn’t end with the writing of a prescription. Please continue to be an advocate – not just for my medical care but for my quality of life as I continue to live with Alzheimer’s.

To obtain a copy of Principles for a Dignified Diagnosis, call your local chapter of the Alzheimer’s Association or find the document online at: http://www.alz.org/national/documents/brochure_dignified_diagnosis.pd

Research Update

rain Derived Neurotrophic Factor (BDNF)

is a naturally occur-ring protein and “growth factor” that helps neurons to function in a healthy brain, and facilitates electrical communication between neu-rons. BDNF is normally made in our brain circuits throughout life, but levels are reduced in Alzheimer's disease (AD).

Dr. Mark Tuszynski is Professor of Neuro-sciences at University of California, San Diego and Director of the Center on Neu-ral Repair. He and his research team were interested in determining whether BDNF could prevent cell death, stimulate cell function, improve connections between cells, and improve learning and memory in laboratory animals with Alzheimer’s.

In their animal model research, they ad-ministered BDNF to regions of the brain that are important for memory, the en-torhinal cortex and hippocampus. The most compelling evidence of a beneficial effect of BDNF was the observation that brain cell (neuronal) death was prevented in some of the animal models, and that connections between neurons (synapses) were improved in density by about 25%. Improvement in thinking was also ob-served in many of the animal models. “I am unaware of other therapies that pre-vent the death of neurons and stimulate brain connectivity (synapses) to the extent we observed with BDNF. An important question is whether we can harness these biological effects to treat AD in humans,” states Dr. Tuszynski. “If animal model studies continue to be safe, we hope to be-gin human trials in about two years.”

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Lisa Snyder, LCSW UCSD Shiley-Marcos Alzheimer’s Research Center 9500 Gilman Drive – 0948 La Jolla, CA 92093