Fussell started his incredible cross-country journey on November 4, 2014 from Tybee Island in his home state of Georgia, and he will be finishing the trek in Monterey, California. Currently, Fussell is racing across Colorado. This ‘regular guy’ covers an impressive 20-25 miles each day, inspiring and educating those he meets along the way, and changing the lives of people affected by the disease one step at a time.
But his journey isn’t just about completing the physical challenge. Talking to as many people as possible about the disease is one of his most important goals. “Every 67 seconds, a diagnosis of Alzheimer’s is made,” he said. “This disease is devastating…and not just for the people living with the disease, also for their caregivers.”
In 2000, Fussell lost his father to Alzheimer’s disease. His father came from a family of 12 siblings, seven of whom died of the disease. Faced with the loss of his father and a personal health scare, Fussell was inspired to reevaluate his life. He lost 100 pounds and made it his new mission to raise awareness of Alzheimer’s disease by trekking across the country.
His campaign, “Across the Land, raising awareness one step at a time” has been featured in hundreds of media outlets across the country and has enabled him to meet four governors as well as countless people affected by the disease. “I’ve spent about 55 nights in Alzheimer’s units talking to patients and caregivers. These special experiences are life changing and remind me that I need to keep going forward with our mission.”
Although his journey is physically and emotionally draining, Fussell is constantly inspired by the many brave people he meets that are either affected by the disease or working towards finding a cure. “I feel like the luckiest guy in the world to be able to do this.” But he stresses that so much work needs to be done in terms of legislation and funding. “It is shocking how little funding is provided for this disease – people can help by talking to their lawmakers and demanding change.”
Fussell said his trek doesn’t exactly have a set-in-stone plan. He usually just travels wherever there is an Alzheimer’s Association chapter. Fussell also wants to raise awareness of the network that is available to inform and support anyone touched by Alzheimer’s. “People can call 800-272-3900 to reach a 24-hour-a-day help line that has counselors for caregivers or anyone concerned about the illness,” he said.
On The Longest Day, June 21, 2014, teams around the world came together to honor the strength, passion and endurance of those facing Alzheimer’s with a day of activity. Worldwide, 2,713 participants and 1,113 teams raised millions of dollars to advance the efforts of the Alzheimer’s Association, the world’s largest voluntary health organization in Alzheimer’s care, support and research.
Colorado had 55 Longest Day teams, the most in the nation! Collectively, Coloradans raised over $62,000. What’s more, team members and communities came together to raise Alzheimer’s awareness from sunrise to sunset. Here are a few of their stories:
Josephine’s Team -Team Ceja honored their mother with a motorcycle rally and poker tournament. They raised over $1,500 through their Texas Hold ‘Em” tournament.
The energy on the Longest Day was truly contagious with 1,113 teams participating across the country, including 55 teams right here in Colorado. Thank you to all of the teams who were part of such a special event! Together, you are making difference on The Longest Day and every day!
The threat of Alzheimer’s is real. This is why I volunteer with and support The Alzheimer’s Association of Colorado. No immediate members of my family have been diagnosed with Alzheimer’s, but I have some extended family members that have/had the disease. My Pastor’s husband died with Alzheimer’s. I don’t remember the man, because he was ill with the disease when I met him as a child. From what my Pastor speaks about her husband, he was an exceptional man. He was respected by his church as a Deacon, and an excellent provider for his wife and nine children.
I have an Uncle who’s wife’s mom and dad have/had Alzheimer’s. Her mom is still alive, but her dad passed away with the disease. He served as mayor of his city, Altheimer, AR. I wasn’t familiar with former Mayor Fred Martin, but I did meet his wife. I remember during family reunions, my Aunt would have her mom re-fold t-shirts to keep her busy, while others enjoyed the family reunion festivities. I understand eventually, they had to put Mrs. Martin in a nursing home.
These three examples of people with great minds getting Alzheimer’s proves, as Alzheimer’s Association board member, and fellow member of The Association’s African American Advisory Committee, Phillip Heath states, “Alzheimer’s is an equal opportunity destroyer.” There is a form of dementia called “younger-onset Alzheimer’s,” that can occur in the 40-50 age group. This concerns me, because I’m getting older.
I appreciate that the Alzheimer’s Association has a multicultural outreach that caters to African Americans, Hispanics, and other minorities. I’ve volunteered on The Helpline, which is a great first contact for people that have questions about Alzheimer’s. Being a member of The African American Advisory Committee, has granted me great opportunities to meet and engage with important people of our time. People like Dr. Ben Carson, Neurosurgeon and Dr. Huntington Potter.
Now the Alzheimer’s Association, through staff member, Rosalyn Reese and The African American Advisory Committee, have launched an enterprising plan called, “Purple Power Champions Initiative.” It’s about going to black churches, via their health ministries to bring awareness about Alzheimer’s. Since African Americans are more likely to get Alzheimer’s then other ethnic groups, it makes sense that African Americans, and people in general get educated about the disease [African Americans are twice as likely to develop Alzheimer’s due to the correlation of the disease to high blood pressure and diabetes both of which have a higher incidence among blacks and Hispanics]. The Alzheimer’s Association of Colorado also has many free classes and courses available to the public.
Not only has the Alzheimer’s Association of Colorado made me more aware about the seriousness of this deadly disease called Alzheimer’s, the Association is fun! I enjoy the annual fundraisers, Walk To End Alzheimer’s and The Blonde vs. Brunette Flag Football Game. The staff and volunteers I’ve met at the Alzheimer’s Association are good people to know. So whether you are African American, or any other ethnic group or race, The Alzheimer’s Association of Colorado is a good organization to utilize and support. I am proud to be associated with this organization.
At the Alzheimer’s Association we often hear from families that their first reaction after a diagnosis is one of relief, because now they finally know what they are dealing with. However, what follows shortly after is a profound sense of loss at what’s to come as the disease progresses.
What many people don’t understand is that while this disease steals so much of the person known and loved by friends and family, changes can happen relatively slowly. Speech, for instance, begins to deteriorate with a person initially having trouble finding nouns and eventually, they may be unable to put sentences together. Following step-by-step instructions or a recipe may get increasingly difficult. Balance may be impacted so falling down and dropping and spilling things may occur more often. In addition, the ability to use good judgment to make decisions may begin to decrease. That doesn’t mean life can’t be enjoyed, or trips can’t be taken or new adventures can’t be planned. Simple adjustments may just need to be made to the way you’ve always done things.
One man, who thoroughly enjoyed cooking in his beautifully-equipped kitchen, enlisted his wife’s help. They removed all the sharp knives, labeled drawers and moved things around so he could easily find what he needed. Then they simplified recipes and used the ones still most familiar to him so he could continue doing what he loved. Another couple who loved to dance was worried the wife’s balance problems would mean they had to stop. In fact, her dancing feet remembered all the right steps. And yet another family switched to croquet instead of golf and now the grandchildren get out on the course with grandpa, giving them a wonderful new way to play and interact together.
Alzheimer’s is a fatal disease but it doesn’t have to bring life to a screeching halt. You can still do what you enjoy, maybe just a little differently. In fact slowing things down a bit and allowing additional time for an activity creates a more comfortable and enjoyable environment for someone with dementia . Figure out what kinds of activities are available in your area and adapt them when you can. If you enjoy visiting local museums, find out if there are hours when the crowds are smaller and whether there are docents who are trained for groups with special needs. The Denver Art Museum has a program specifically for those with dementia called Art and About that is coordinated with the Alzheimer’s Association. Tours are offered each time a new exhibit comes to town. Walking trails designed for the sight impaired offer a unique way to follow guided walkways when balance and direction are issues for a friend or family member with dementia. If you’ve always loved to camp, try an RV instead of a tent. A pop up camper or RV makes things easier on the care partner. More time can be spent enjoying the out of doors than on the set up, cooking and cleaning up involved with tent camping. If gardening is a special hobby, create a special bin for equipment and help mom find it each time she wants to putter with her roses. And try large-print playing cards to keep dad winning at the Bridge table. Keeping your friend or loved one busy, active, engaged and socializing may mean the disease progresses just a little bit slower. Regardless of the activity or the hobby, the real benefit is that by looking for ways to keep someone you love doing what they love, you have been given the gift of time with them to treasure.
Last year my friends and family participated in The Longest Day on June 20, for the first time. We’ve had a Walk team for the past six first walking in honor and then in memory of my husband Bill and wanted to find a way to involve more family and friends in the cause.
After struggling for five years with symptoms, Bill was diagnosed with Younger Onset Alzheimer’s when he was just 57. Our journey lasted a total of nine years and he died in 2010. He was my soul mate and my best buddy on so many adventures. We camped across Colorado and into Utah, South Dakota and Wyoming. We skied resorts from Vermont to New Hampshire to Colorado to Utah and the Tetons. Even in the midst of his disease, we pushed our limits in the search for new, challenging adventures. When the Alzheimer’s Association launched The Longest Day it seemed like the perfect way to continue to honor Bill’s legacy. Along with my friends and family, we took up activities that fit best with what we love to do. My younger sister in Durango rode her horses and her road bike trainer, my parents walked the streets of Vail during what was their anniversary trip, my sister Lynne walked the trails near her home in Lakewood, and my good friend Bob and I rode our mountain bikes near Boulder for four hours. All day, somewhere in the country, our team was doing something they love to raise money and awareness in memory of Bill. Thanks to our generous friends and family, we also raised nearly $1,700 for the Association.
Did I mention The Longest Day is scheduled to take place on the longest day of the year? The summer solstice occurs each year in June, this year on Friday, June 21. That means there are 16 hours of daylight from sunrise to sunset. The Alzheimer’s Association chose that day in recognition of caregivers, who like me spend every day from sunrise to sunset and into the night providing care for someone they love who is living with Alzheimer’s. The tagline for the event is “for them every day is the longest day, for you it’s just one” and it rings true. The Longest Day offers us an opportunity to give up one day to raise money, awareness and an understanding that this disease steals the person you love long before they die. We have to find effective treatments, we have to stop this disease before more spouses, children, grandchildren and friends lose people who mean so very much. Please consider forming a team this year and join us in 16 hours of doing whatever you love to help end Alzheimer’s.
Former caregiver for best friend, partner and husband Bill Perrin, Jr Alz.org/thelongestday
As the temperature finally dips into seasonal ranges for winter, those caring for someone with Alzheimer’s and other forms of dementia should all be on notice that snow, extreme temperatures and early darkness present special problems.
A loved one with Alzheimer’s won’t necessarily dress appropriately for colder weather. Cover as much exposed skin as possible and provide several layers of lightweight clothing for easy movement, especially if plans include time outside. A hat is important since so much body heat escapes from an uncovered head and don’t forget to add a scarf to cover up an exposed neck. Mittens keep hands warmer than gloves and may be easier to help get on and off. Clips designed for skiers can help keep track of gloves or mittens that are otherwise easily misplaced or lost.
Sundowning is a term that refers to increased anxiety, confusion and even increased sleepiness due to the decreased sunlight in the winter months. Visual perception is already an issue for many people with Alzheimer’s and can cause increased confusion or disorientation in dark or shadowy environments both inside and out. Turn lights on earlier, open curtains during daylight hours and add bulbs that simulate sunlight. Install motion detector lights to help illuminate walkways around the home as darkness may fall before arriving home from an outing. Dressing in light or bright colors or adding reflective material to clothing will help a loved one be more easily seen.
To avoid slips and falls, make sure boots are non-skid. There are many boot styles on the market that use Velcro instead of laces to allow the person with dementia some success with dressing themselves. Try separate “tracks” that attach to the soles for added traction on icy surfaces. You can also add a sharp tip to canes for that extra grip on winter days. This device is available at home health care stores.
Assume ALL surfaces are slick and by taking smaller steps and slowing down, the person with Alzheimer’s can match gait and speed to a safer level.
Perception problems can make it difficult for the person with Alzheimer’s to see ice on the sidewalk or realize that ice is slippery or that snow is not a solid surface.
Keep sidewalks and driveways clear of ice and snow to make walking outside safe for everyone, but do not overuse ice melt products which can reduce traction.
Use indoor or garage parking whenever possible.
Especially on stairs or slick spots, insist on handrail use and walk arm in arm when possible.
Acquire and use a State issued Handicapped placard enabling closer access to the door of buildings.
Is fearful of unfamiliar sights, sounds or hallucinations.
Searches for something specific such as food, drink, the bathroom or companionship.
Never assume that being at home with someone who has Alzheimer’s makes wandering less of an issue. It only takes a moment for someone to leave the house, and the confusion and disorientation that accompany the disease means a friend or loved one can get hopelessly lost in a matter of minutes. Having some type of tracking device can provide peace of mind that a loved one could be located within a short period of time after becoming separated. Medic Alert + Safe Return and Comfort Zone are two programs that protect people diagnosed with dementia in case of a medical emergency or a wandering incident.
It is not uncommon for a wanderer to require medical attention following an incident. Through the use of a 1-800 number, MedicAlert + Safe Return provides the member’s personal health record including medical conditions, medications and allergies and can be updated 24-hours a day through a private online account or by calling the toll free number during business hours.
When someone enrolled in the program wanders, the MedicAlert + Safe Return hotline activates the resources of law enforcement, medical professionals and the local Alzheimer’s Association chapter staff to assist the member when an incident – either wandering or a medical emergency – occurs.
Comfort Zone® is a comprehensive web-based location management service. Families can remotely monitor a person with Alzheimer’s by receiving automated alerts throughout the day and night when a person has traveled beyond a preset zone. The alert can be received in any location, even notifying family members or caregivers in another state. This program is particularly useful for those in the early stages who want to maintain as much independence as possible for as long as they are able. Comfort Zone uses a location-based mapping service, or LBS . This term refers to a wide range of services that provide information about a person’s (or object’s) location very similar to a GPS device for turn-by-turn driving directions or tracking packages online. A person with Alzheimer’s wears or carries a locator device (such as a pager or cell phone) or mounts one in his or her car.
To learn more about MedicAlert + Safe Return and Comfort Zone, contact the Alzheimer’s Association Colorado Chapter at 800-272-3900 or go online to alz.org/co. For help caring for someone with Alzheimer’s or for answers to questions about memory loss, call 800-272-3900.