Friday, May 22, 2009

Know the 10 Signs

#10 Changes in Mood and Personality

"My boyfriend would tell me I was forgetting conversations we had. I was forgetting certain things yet retaining others, so he accused me of "remembering only what I wanted to remember." He also told me I wasn't the same person. I wasn't acting like my "old self." I often became irritated and aggravated with many things which was unlike my normal personality.

With the help of Early Diagnosis and Intervention with medication and treatment, I found out I wasn't going crazy. I found medications to slow down the AD process and therapy to help me cope with my disease. I am still an active member of society, do volunteer work, help take care of my mom who, also has Alzheimer's disease, and am still able to take care of myself. I am able to live alone and function pretty well. I have been able to put all my affairs in order so that my daughter won't have to face that when I can no longer make those decisions. I am able to participate in clinical trials of new medications which may be disease modifying.

Early Diagnosis and treatment has helped me and my loved ones make the best of the situation."

-Lisa Carbo

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Thursday, May 21, 2009

Know the 10 Signs

#5 Trouble with Visual or Spatial Relationships

"I felt my wife was nagging me about my driving; in my view, there was nothing wrong with it. I agreed to a meeting with my doctor to discuss her complaints. He agreed with her; he told me not to drive.

To foil their view and show them how wrong they were, I took a simulated driving test at Sister Kenny Institute in Minneapolis. I failed it miserably.

After a Neuropsychometric test, I was diagnosed as having Alzheimer’s disease.

The test told them I had substantial visual peripheral perception deficiency. This meant that I would see things but they had no meaning. This explained why I was screwing up driving, why I was falling after tripping over things in plain sight. It explained why I bumped into closed windows and was clumsy as could be.

My tripping and falling shattered a 12- year-old hip replacement that required surgery that had me on my back homebound, unable to walk, for 2 months. The recovery was rough. That was price enough! I am now on my feet ready to live again.

Knowing about the source of my clumsiness has helped me and my family create a safer environment. It has also given me the opportunity to pursue creative, social and fun activities as much as I want, which is very important to me. I just let my wife drive!"

-Mike Donohue

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Wednesday, May 20, 2009

Know the 10 Signs

#3 Difficulty Completing Familiar Tasks

"The first sign for me was forgetting and having trouble at work. I was trusting my brain to be there and denying that something was wrong. The problem with that I was forgetting too many things and I thought it was menopause. I saw my OBGYN and she said that all was well. I then went to my primary care doctor and we did blood tests. Everything came back normal.

As time went on, it was getting worse and my family, friends and co-workers were growing very impatient with me, especially when I missed dinners or events that were planned. Working as a meeting planner was a more specific problem: I was not able to multitask as I had been for years. I could not remember things without writing them down, and then I could not find the paper with the note on them. And that was that...I had Younger-Onset Alzheimer’s Disease...

It was a blow, but I am not the type of person that gives up that easily. Now, I am active in my community, educating others about this disease and getting involved."

-Karen Zimmerman

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Tuesday, May 19, 2009

Know the 10 Signs

#2 Challenges in Planning or Solving Problems

"One of the first indications that something was awry was missing appointments that were on my schedule. Frequently, I put times down wrong, or failed to follow the time I had down correctly, arriving too early, late or not at all.

Now that I am diagnosed with Alzheimer’s, I keep two schedules to avoid missing anything. At one time I didn’t keep a schedule. A busy lawyer, I had every appointment, deadline and due date in my head.

With Alzheimer’s, I know I need to take these extra steps and it helps me be able to continue to be active and involved."

-Mike Donohue

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Monday, May 18, 2009

When is it normal and when is it Alzheimer's?

Since the release of Still Alice, I've had the privilege of talking to a lot of audiences about Alzheimer's. One of the most common questions people ask me is:

"When I can't find my keys, how do I know if that's normal forgetting or a symptom of Alzheimer's?"

My quick and dirty answers are usually something like:

"Well, when you find your keys, are they on the table or in the refrigerator?"


"We all have trouble finding where we put our keys. It's worrisome if you find your keys and then can't remember what you're supposed to do with them."

Forgetting keys, names, how to get somewhere, how to do something--How do we know when it's normal and when it's Alzheimer's?

The Alzheimer's Association has put together the 10 Warning Signs List.

They also provide this phone number if you'd like to talk to someone about your concerns: 877 IS IT ALZ

My friend Kris recently shared one of her early warning signs (warning sign #4) with me:

My biggest tell-tale sign was when I'd gone shopping with my husband, and we went to a Best Buy store. I was looking at some CDs, and my husband had gone off somewhere else, and I looked up from the CDs, and I didn’t know where I was or how I had gotten there. It's kind of hard to be in a Best Buy store and not know you’re in a Best Buy store, you know, with all the Best Buy signs everywhere. The only way I can describe it, and it’s so funny because in your book it was like this, it’s like an out of body experience.

I remember going out of the store to look at my surroundings, and I looked at the sign, but I couldn’t read that it was Best Buy. I saw the sign, but I couldn’t put together that I was at the Best Buy store. So I remember sitting down on the steps in front of the store and thinking, 'Well, I got here somehow, I’m just going to have to figure out how I got here.'

I sat there for a while and then went back in the store, and I recognized my husband. And I thought, 'OK. I got here with him, I’m still not sure where I am, but I got here with him and I’m okay because I know I can get home with him.' And I didn’t say anything to him. I just followed him out to the car, got in the car, went home, and that night I still could not remember where I had been.

I didn’t want to alarm my husband about it, so just jokingly I said to him, 'You know, I know we went out today, but I can’t remember where we went.'

He said, 'We went to Best Buy.'

And I said, 'Oh, yeah.'

How old were you?


When I was diagnosed with Alzheimer's, I was relieved because now I knew there was a name to it. I know there’s no cure, and it broke my heart, but by the same token, now I knew what I was dealing with and that I wasn’t crazy.

Lisa Genova, Ph.D., author of Still Alice,

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Know the 10 Signs

#1 Memory Changes that disrupt Daily Life.

"There was one episode with my memory that scared me a great deal. When I was trying to recall something, in my mind, a large black cloud appeared, covered the answer and it was gone.

I was on a bus on my way to visit my daughter when an elderly woman sat next to me. We began to chat as strangers do. During the conversation she asked where my daughter lived. I got out “Allen…” and that black cloud enveloped the rest. And I stammered, "No it's not Allentown, that's in Pennsylvania. It's not Allenberg, I never heard of that. It's Allen something or other." I must have looked as upset as I felt, because she patted my hand and said, "That's all right dear, we all forget things as we get older."

I know now that the black cloud wasn’t just a sign of aging. Once I was diagnosed and starting getting treated for Alzheimer’s, the black cloud disappeared."

-Mimi Steffen

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Early Detection Matters

This week, the Alzheimer’s Association is launching its new Early Detection campaign, “Know the 10 Signs.” We’ve asked our Early Stage Advisors to contribute some of their personal experiences recognizing the signs of Alzheimer’s. These courageous individuals have all endured the arduous process of discovering their disease and have volunteered their energy to the Alzheimer’s Association to advance the most effective step in Alzheimer’s treatment: Early Detection.

Every day this week, we’ll be posting real stories of diagnosis and the relation of each to the 10 Signs of Alzheimer’s disease. For more information on the 10 Signs, please contact the Alzheimer’s Association at 877-IS IT ALZ (877.474.8259) or visit

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Sunday, May 3, 2009

It's All In How You Hold It

Two years ago, I had a conversation with my friend, Jay, that changed my life. Here is some of what we talked about.

I ask him, “What did it feel like to hear those three words---You Have Alzheimer’s?”

“We (he and his wife) never really did have a moment of denial. I’d accepted the Alzheimer’s Disease diagnosis when the doctor put me on Aricept. That was the time of shock and relief. Finally, we have an answer. We never thought of Alzheimer’s, but it was great to know that it’s not something mysterious anymore. It’s just this thing that five million other Americans have.”

When Jay and his wife left his doctor’s office, they went straight to a bookstore to learn more about Alzheimer’s Disease. They bought The Forgetting (Shenk), Alzheimer’s Early Stages (Kuhn), and Alzheimer’s for Dummies. They learned about the symptoms and stages, living with the disease, and planning for the future. He took the medications prescribed by his physician. But something in Jay urged him to learn and do more.

Armed with a diagnosis, they attended a mind-body retreat, where Jay began to discover new parts of himself, unused by Jay the architect, undamaged by Jay the man with Alzheimer’s.

He ate vegan meals rich in anti-oxidants and learned about natural healing. He began exercising.

“Every morning at the retreat, we did exercises focused on strength and balance and getting the lymph system moving. Aerobic exercise is the number one thing you can do for your health, your brain, and the growth of your brain.”

He started reading more, but not about Alzheimer’s Disease. He tells me that I absolutely have to read Eckhart Tolle, Deepak Choprah, Jon Kabat-Zinn, Stephen Levine, Gary Zukav.

“I’ve been spending a lot of time and attention on books about consciousness and healing. This is the real deal about who we really are, the stuff they never taught you in school. I’m taking it all in as fast as I can without getting in a hurry and falling over myself.”

Jay is looking at me now, his eyes alive and bright, his voice louder and sure of itself. He’s excited about all this, and his mood infects me easily. I perk up.

Look at all you’re discovering.

“I’ve taken my life back. I’m happy. I’ve never been happier. I’ve been spending a lot of time on self-awareness, discovery, and actualization through meditation. I never meditated before this disease. I’m starting to get it down. In the last year, I’ve been actively involved in an intensive meditation group that meets weekly, and the miracles that have been happening since I’ve started doing it have been just amazing.”

I’m nothing short of awed by Jay’s transformation. Here’s a man who has been diagnosed with a disease synonymous with death, but the man before me, in this present moment, is not a dying man.

“My main avocation has always been music. I’m in a folk string group, and I’d always played the banjo and guitar. Recently, my friends in the group encouraged me to try mandolin, so for a few years now I’m becoming a serious mandolin player.”

Wow, that’s impressive. You realize that you have a disease that makes it difficult to learn new tasks.

“Yes, but that’s exactly what you need to do! It’s like doing my Sudoko every morning. Learning a new song, a new skill, challenging the grey matter and forging new pathways. And music also gives me a connection to the people I play with. My wife and I have been in a community chorus for years. It’s a great outlet for self-expression and creativity..”

Jay, what you’re doing is incredible. You know, most people can’t imagine you. When most people think of Alzheimer’s, they see end stage. They skip immediately from diagnosis to deathbed.

“For the first time in my life, I’ve got nothing to lose. It’s liberating. It’s real clear to me. Our priority is living the good years we have left. We know the shape of the end of this thing, but we still have a lot of living to do. Right after diagnosis, I began attending a guitar/mandolin camp, including a couples weekend with my wife, and I’ve already signed us up for next year’s mandolin camp and couples’ weekend. And I bought a new car, even though I may not be able to drive much longer.

I’ve come to see the importance acceptance and accommodation—accepting the diagnosis and all its implications, and learning to adjust and accommodate to the limitations it imposes—and then refocusing and reprioritizing my life to my newly rediscovered core values. Anyone can discover their own. Mine are family, creativity, life-long learning, service to community.”

A man with a video camera is hovering a few feet away. I look down at my watch. My time with Jay is about up. He has an interview with some folks from HBO next. I wish I we had more time together. I’m learning, inspired. I like him. He knows who he is and what he’s about. It’s magnetic. I want to be in the presence of his peace and excitement for life. I don’t know many people in this world who have what Jay has found with Alzheimer’s.

“A brilliant young professor left me, over 50 years ago, with 'it’s all in how you hold it.' For me, after all of this, it all boils down to living my life like there’s no tomorrow, while conducting myself and treating my body-mind-spirit in such as way as to maximize the number of tomorrows that I’ll have available.”

Lisa Genova, Ph.D., author of Still Alice,

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Location: Chicago, Illinois, United States

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.

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