Alzheimer’s Breakthrough Ride - Sedalia MO

I began this day of vacation at 4:30 a.m. to meet and greet the four Missouri researchers who will cycle 71 miles from Sedalia to Jefferson City. Jon Cirrito, PhD, and Jessica Restivo, are researchers from Washington University School of Medicine in St. Louis. Joining them were Ben Timson, PhD, Professor of Biomedical Sciences at MU and David Oliver, PhD, Assistant Director of MU Interdisciplinary Center on Aging and Board President of the Alzheimer’s Association Mid-Missouri Chapter.

The four researchers and the support team stayed the night at Comfort Inn in Sedalia, and I wanted to catch up with them before they left town. I had a cup of coffee while they ate fruit, drank juice, and prepared for the ride.

I know David Oliver and he introduced me to the other members of the team. Dr. Jon Cirrito showed me a Google map of the route. They would be passing through some small towns that many of the locals have never visited. The bicyclists will go through Clifton City (“not a city,” I informed them), Prairie Home, and Jamestown before arriving in Jefferson City. They have three scheduled rest stops along the way and have no time limit other than to reach their final destination before dark.

“Some of the other groups have hit really bad weather in other states,” Dr. Oliver said as he applied generous amounts of sunscreen to his face and arms. “We credit this beautiful 60 degree weather to collective prayer.”

Dr. Oliver, 68, was the oldest in this group of cyclists. He said cyclists had to sign a release and list the medicines they took. “My list was long,” he said. “I have a stent, poor knees, and lousy hearing, but I am functional and know I can ride this bike 71 miles for this worthwhile cause. I’m looking forward to it.”

We walked outside where the four cyclists each filled two bottles—one with water and the other with Gatorade. Finally, the bicycles were loaded onto the two support vehicles, and we headed across town to Hubbard Park.

The bicycles were unloaded, and Jessica decided she needed long sleeves and pulled a long-sleeved T-shirt over her official Alzheimer’s Breakthrough Ride shirt. They climbed on their bikes and fastened their helmets. Dr. Cirrito took the lead on his bicycle equipped with a GPS.

It was exciting to see this group of researchers be part of a nationwide effort to make Alzheimer’s disease a national priority. The Ride began in San Francisco on July 17 and will end in Washington DC on World Alzheimer’s Day, September 21. More than 55 researchers have been collecting signatures to present to Congress urging them to make Alzheimer’s disease a national priority. The original goal to obtain 50,000 signatures has been doubled to 100,000.

Approximately 110,000 Missourians have Alzheimer’s disease. An estimated 5.3 million Americans have Alzheimer’s and as the baby boomers age, the number is expected to swell to as many as 16 million by 2050.

Dr. Oliver explains that research funding is dismal especially considering the toll on individuals, families, and others. “I believe current research spending is around 375 million. We are riding to encourage Congress to push this to $2 Billion and make AD a major priority like other killer and devastating diseases.”

The side of the “pony” (as the truck is called) says, “The toughest hill to climb is Capitol Hill.” Even with the winding, hilly blacktop ahead of them, I’m sure Jessica, Jon, Ben, and David wholeheartedly agree.

Follow the progress of Alzheimer’s Breakthrough Ride at http://www.alz.org/. While you’re there, sign the petition.

Copyright ? L. S. Fisher August 2010
http://earlyonset.blogspot.com

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Alzheimer's: Strategies for dementia caregiving

This summer's Greater Iowa Chapter Alzheimer's Association newsletter had a piece titled, "Ten real-life strategies for dementia caregiving." I like the piece and want to share a few of them with you, plus one of my own.

Being reasonable, rational and logical will just get you into trouble.
When someone is acting in ways that don't make sense, we tend to carefully explain the situation, calling on his or her sense of appropriateness to get compliance. However, the person with dementia doesn't have a "boss" in his brain any longer, so he doesn't respond to our arguments, no matter how logical. Straightforward, simple sentences about what's going to happen are usually the best.

Therapeutic communication reduces stress.
We tend to be meticulously honest with people. However, when someone has dementia, excessive details may lead to distress, for both them and the caregiver. Does it really matter that your loved one thinks she's the volunteer at the day care center? Is it OK to tell your loved one that the two of you are going out to lunch and then "coincidentally" stop by the doctor's office on the way home to pick something up as a way to get her to the doctor?

It's perfectly normal to question the diagnosis when someone has moments of lucidity.
One of the hardest things to do is remember that we are responding to a disease, not the person. Everyone with dementia has times when they make perfect sense and can respond appropriately. We often feel like that person has been faking it or that we've been exaggerating the problem when these moments occur. We're not imagining things; they're just having one of those moments to be treasured when they occur.

Offering a sense of control goes a long way.
All of us want to feel like we're in control of our own lives and have the capability to make our own choices. This doesn't change when someone has dementia — even the later stages of Alzheimer's disease. Although somebody with advanced Alzheimer's disease is no longer capable of maintaining the independence and choice they once had, we have the opportunity to offer them at least an "illusion of control". For example, instead of saying, "I want you to take a bath now" you could say, "I know how much you love taking a bath on Sunday evenings, thank you for letting me help you out."

The advice I often give caregivers is to communicate with words, tone and body language that can most often generate reassurance and a sense of contentment.? When we communicate in this way, we're letting go of our own need to control a disease which we simply cannot.

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Alzheimer's crisis emerging, but progress being made

Alzheimer's is an emerging crisis as the population ages.

One in eight persons 65 and older has Alzheimer's, and that number increases to nearly 1 in 2 persons aged 85 and older, according to the Alzheimer's Association 2009 Alzheimer's Disease Facts and Figures report.
By 2050, the number of individuals aged 65 and older with Alzheimer's is projected to number between 11 and 16 million unless medical breakthroughs identify ways to prevent or more effectively treat the disease.
"The fact is that the older the population the more cases of Alzheimer's there will be," says Dr. David Knopman, a Mayo Clinic neurologist.

Seventy percent of people with Alzheimer's live at home where friends and family take care of them. More than 40 percent of family and other unpaid caregivers rate their emotional stress as high or very high.
So, what are we doing about it?

The Alzheimer's Association organizes memory walks nationwide to help research and fund support and education programs in local communities, including the Alzheimer's Association Helpline. Helpline has highly trained and knowledgeable staff answering the phone 24 hours a day, seven days a week, in 140 languages. Call 1-800-272-3900.

In Minnesota, legislation was recently passed to establish an Alzheimer's working group to examine the needs of individuals diagnosed with the disease, the services available to them, and the capacity of the state to meet current and future needs. The working group and other interested persons is made up of researchers, professional and family caregivers, and persons diagnosed with the disease. The group will ultimately present a comprehensive report to the governor.

In North Dakota, recent legislation resulted in passage of a dementia services bill. This bill created a care consultant system to provide community education and individual consultation to families impacted by Alzheimer's. This is a tremendous victory and one that will impact families immediately. Other states and communities are beginning to take similar action.

Research has made considerable progress over the past decade and is moving forward with great momentum. Research has lead to current therapies that can ease symptoms and reduce the rate of cognitive decline. We now know the fundamentals of the disease process and how it damages and destroys brain cells and their ability to communicate. Experimental drugs are being explored every day. The next generation of drugs will target not only the symptoms but rather the underlying pathology.

Evidence from epidemiological studies suggests that the factors affecting heart health, such as blood pressure, cholesterol and blood glucose, may play a role in risk factors and protective factors involved in Alzheimer's. Research offers us hope that we can one day prevent the disease.

Most of you reading this blog have been diagnosed with Alzheimer's, or are caring for someone with it. Yet, it may seem that our efforts are focused on better days down the road, not today. So, what can you do today? Many things! My recommendations to persons with memory concerns, or who have a diagnosis of Alzheimer's disease, or who are caring for someone with dementia are:

Know the 10 warning signs.Seek a diagnosis early and get treatment.Maintain overall brain and body wellness.Seek out and understand the resources in your area.Get support (in your own way).Plan ahead.Reduce stress by improving/changing the way in which you (caregivers) communicate. Believe that if you are a caregiver, you must first care for yourself.Join the efforts to move research forward.

Over the next several blogs, I will speak to each of these recommendations in detail. Meanwhile, continue to share with one another your concerns and struggles, but also your joys and successes and the ways you are taking action to live with Alzheimer's.
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Alzheimer's Reading Room: What is it like being an Alzheimer's caregiver? Unconditional Love

I submitted an article to Alzheimer's Reading Room about my caregiving experience. The Reading Room is an excellent source of information about Alzheimer's and includes everything from research information to personal stories like mine. Kudos to Bob DeMarco for maintaining and constantly updating this excellent site!

Alzheimer's Reading Room: What is it like being an Alzheimer's caregiver? Unconditional Love

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Alzheimer’s Awareness - The Color Purple

I’ve always had a love affair with the color purple which worked well when I discovered it was the Alzheimer’s color. We are gearing up for Memory Walk so I’ve gotten into the spirit by painting my fingernails and toenails purple. Not just any purple—Xtreme Wear Deep Purple.

I dressed for church today in my “Walk to End Alzheimer’s” shirt and topped, or bottomed, it all off with my brand new purple high-heeled Crocs I bought at the Crocs Outlet in Branson.

It so happened that the air conditioning was broken so we shopped in heat more Xtreme than my nail polish. Perhaps, my brain was overheated when I fell in love with the purple shoes, or so my granddaughter seemed to think. She said the shoes were a little weird, but Crocs are comfortable shoes with cushiony padding underfoot that's a lot like walking around with a Memory Foam pillow tied to the bottom of your feet.

At church this morning during the “greet those around you” moment, the lady sitting behind me said she loved my shirt. On the way out the door, another lady admired my shoes.

“My granddaughter thought they were a little strange,” I admitted.

“They are such a fun color!” she said. I had to agree—but then they are purple slippers so gotta love ’em, right?

“They're comfortable too,” I added.

Getting into the purple zone is more than wearing the appropriate clothing and accessories. It is a time to fundraise and get out the word about the Memory Walk. On Labor Day, Jim’s Team raised $1150 at our traffic stop.

Saturday some of us stood in front of Walmart handing out “Save the Date” cards and forget-me-not seed packets with the tiny sheets of paper with stapled to it with walk information and contact numbers. We had a collection bucket available for donations, but our main purpose was to create awareness about the Alzheimer’s Memory Walk.

The Walk Committee has a busy week ahead. We plan to gather door prizes and last minute items. We will make a lot of last minute preparations so that everything goes smoothly on Saturday, September 18.

I’m trying not to panic because my books haven’t come in. Part of my sponsorship is signing and distributing Early Onset Blog: The Friendship Connection. The turnaround is usually a few days on book orders, but as of the last time I checked they were still “in production.”

A lot of work and planning goes into the Memory Walk and that cuts down on the chances of things going too wrong. Rain or shine, I know one thing for certain—a lot of people will be up early Saturday morning and head to the Fairgrounds for Memory Walk. Purple will the color of the day when we grab up the banner and walk to end Alzheimer’s.

Copyright ? Sept. 2010 L. S. Fisher
http://earlyonset.blogspot.com

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An incomparable act of heroism

The last series of blog entries underscores that each of us is on a similar, yet very different, journey. I like how Annette put it: "Each one of you fights a different battle, but in my eyes you're all angels. Let's soldier on!"

In the past, I've written some about a program we offer at Mayo Clinic called HABIT (Healthy Action to Benefit Independence and Thinking). The 10-day, 50-hour program is designed for persons with mild cognitive impairment and a care partner (generally a spouse).

One of the incredible outcomes of this program is the transformation that takes place between some couples as they move toward accepting (keeping in mind that accepting is not the same as liking) the situation they are faced with. More importantly, couples begin to pull together at a time when uncertainty and fear can unravel even the strongest, most loving relationships.

During a HABIT therapy session last month one of my colleagues witnessed an incomparable act of heroism — a testament to how brave one can be who is facing the diagnosis of mild cognitive impairment or a dementia. A woman in her late 50s who has been told she's developing Alzheimer's requested that the therapy session with her and her husband focus on "the end game."

Mind you, talking casually to her you would have no idea that anything was wrong. In this therapy session, she began to tell her husband what she wanted for him (the caregiver) at the time when she became so impaired that she didn't recognize him any longer. These are some of her words:

"... Most importantly Tom, take care of and be kind to yourself. Seek companionship — you should not be alone or lonely. Use any and all resources to help care for me; do not take on the role of caregiving by yourself, nobody should. Know now that I will miss you and everything about us, especially our long walks together."

The husband and the therapist said nothing, they could only weep and admire her strength, generosity and courage.

There can be no greater gift then telling those you love what you want and wish for them in the end.

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Avoiding Alzheimer's Disease

The highest risk factor for Alzheimer's disease is age. Risk increases as people grow older. About 1% of people who are over 60 years of age can have Alzheimer's disease, but cases will double every five years at the age between 65 and 85. If under the assumption that the age onset can be deferred for 5 years, the number of cases will be halved. This is the basis for lowering the risk of having the disease in order to attain the goal of a hypothetical "Alzheimer free" society.

Over the years many epidemiological, brain perfusion studies and animal experiments have shown that highly educated have a lesser chance to have Alzheimer's disease. In fact, education and busy use of brain cannot change the brain structure, but may strengthen the brain to prevent brain degeneration. Even if Alzheimer's disease is contracted, the symptoms of dementia will not occur right away.

The most effective approaches to keep the brain active are reading, playing card games, doing cross word puzzles and visiting friends and relatives. Watching TV, listening to the radio, and other recreational activities are also good choices. Continue learning after retirement is the best defense for elders against the disease, whether it is continued education, on-line learning, development of new interests or participation in community activities.

Exercise is the real deal in keeping young. Experiments on animals showed that aerobic exercise can increase brain capillaries and nerve cells and reduce brain amyloid levels. Exercise can also prevent chronic diseases such as blood pressure, high cholesterol, cardiovascular disease, colorectal cancer, osteoporosis, diabetes, obesity, depression, etc.

Scientists have long noted that by cutting down food intake in rats by 30%, they not only live 30% longer, their spatial memory is larger with stronger learning ability. Survey also found that the diet containing more unsaturated fatty acids of fish or low-fat can lower the chance of Alzheimer's disease. According to a Columbia University study in 2006, tracking 2,258 residents age 77 in average, those who were on Mediterranean diet (i.e., more fruits, vegetables, beans, grains, olive oil, fish, wine, a small amount of meat and poultry) have a lower chance (40% less) for Alzheimer's disease than those who were not. The importance of low calorie diet is so obvious.

Therefore everyone, young or old, should develop learning habits, keep in touch with friends, and participate more in recreational activities. Try to walk at least 40 minutes a day. Stay light on diet with more emphasis on fruits and vegetables. You can cut down the chance of getting the Alzheimer's disease. You will be healthy and have a more pleasant life.