Helping To Change Lives One Step At A Time

Jack Fussell running
Jack Fussell running the Boulder Flatirons

Jack Fussell’s Facebook page says he is “just a regular guy trying to help, like I promised I would.”

But Fussell is anything but regular. The 64 year old Navy veteran is walking and running more than 3500 miles from the Atlantic to the Pacific coasts, all to raise funds and awareness for Alzheimer’s disease.

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.

Jack Fussell running through Colorado
Jack Fussell running through the Colorado mountains

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.

Jack Fussell visits the Alzheimer's Association Colorado Chapter
Jack Fussell visits the Alzheimer’s Association Colorado Chapter

For more information about the Alzheimer’s Association or to follow Fussell’s journey, visit facebook.com/acrosstheland2015.

Leslie Mitchell

 

-by Leslie Mitchell, Alzheimer’s Association Volunteer.

#StillMe

StillMe-Sandra

Following the release of Still Alice, a movie staring Julianne Moore as a Columbia linguistics professor diagnosed with early-onset Alzheimer’s disease, several courageous members of our Early Stage Group got together to kick off a new social media campaign, ‪#‎StillMe‬. The campaign aims to raise awareness about Alzheimer’s disease by putting a face on a disease that affects more than 5 million Americans.

StillMe-Wayne

 

 

Every 67 seconds someone in the United States develops Alzheimer’s, a progressive disease, where dementia symptoms gradually worsen over time. In its early stages, memory loss is mild. In the late-stages of Alzheimer’s, individuals lose the ability to carry on a conversation and respond to their environment. The #StillMe project aims to emphasize the individuals behind a disease that slowly robs them of themselves.

 

It is the slow and sorrowful progression of Alzheimer’s disease in a loved one that inspired Brad Torchia, a Denver based professional photographer, to get involved with the project:

A few years ago my grandmother was diagnosed with Alzheimer’s disease.  My family lives across the country from me, and on my trips home every six months I would notice her decline, as well as the devastating effect it was having on everyone around her.  I started photographing her as a way to make sense of the situation, and slow the process in my mind.  Over time, this has turned into a larger scale portrait project that I have been working on in conjunction with the Alzheimer’s Association of Colorado. I provide portraits of those living with the disease to their families at no cost, and simultaneously create a personal body of work. With this series, my goal is to convey the personality, and subtle, but noticeable effects that begin to take shape within the first stages of diagnosis, as well as contribute to the growing conversation around this disease.

StillMe-Rick

 

Barring the development of medical breakthroughs to prevent, slow or stop the disease, by 2050, the number of people age 65 and older with Alzheimer’s disease may nearly triple to as many as 16 million. Despite this trajectory, Alzheimer’s remains the most expensive condition in the United States, and one of the most underfunded disease. Hopefully, the #StillMe campaign can shed a light on the individuals behind these statistics, because where there is humanity there is hope.

 

Now it’s your turn! Take a photo of someone in your life fighting Alzheimer’s disease and post it on Facebook or Twitter (@ColoAlzAssoc) with the hashtag #StillMe ‪#‎ENDALZ‬

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Living Life Well with A Diagnosis

Bruce Peterson
Bruce and Marikay Peterson

Yes, my wife’s diagnosis caused confusion at first. Initially we thought the short term memory loss was similar to others our age, but the tests identified a more severe limitation: Alzheimer’s

Candidly we have found many positives to this disease. It caused me to enter retirement at an earlier age than anticipated and found that I really didn’t mind missing work. The exchange from a business attitude to a more relaxed posture created a more solid marriage. Instead of me leaving an empty house to my wife(our children had moved out) at 6 am, I was sleeping longer, with less worries.

Currently we try to do something together, EACH DAY. Often times (maybe once per week) it involves an Alzheimer’s function, like our journey to Mt. Everest today. Friends have volunteered to help when I leave to play golf. It’s important to identify them before a crises, instead of after (when you can’t find them). At a recent Alzheimer’s luncheon 57 friends joined us for lunch to recognize my wife and share their concerns, to offer their prayers. You can imagine the positive impact on our entire family!

We have signed up for three/four programs that meet at the Alzheimer’s office throughout the month. We found out about Active Minds and Café Connect which encourages intellectual stimulation for seniors. Occasionally we receive free tickets to community activities. Never would we have enjoyed these many Denver activities if it were not for the diagnosis. While seeking treatment at the Anschutz Center we take pride in this wonderful expanding facility which means so much to our community. We always leave with a sense of confidence because the staff is professional while at the same time showing empathy.

Our friends have changed from a purely business and political association to new friends where we share something in common: fear about the future while coping day to day with the unknown. We enjoy our new friends as we wrestle with daily issues that are not understood by the public. We have no concerns about telling the same story multiple times or hearing a joke for the 10th time. This sincere friendship and comfort (“I understand what you’re going through”) would not have taken place a few years ago.

My wife is fully aware of her new limitations, something that might not have been admitted while working up the corporate ladder. Daily we work together to understand our feelings and how to better cope with confusion.

At this time I’m not certain of the future, but believe that this could be one of the best blessings of our retirement lives.

-Bruce Peterson

Living Life When the Diagnosis is Alzheimer’s

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.

While the symptoms of Alzheimer's disease are progressive, there is still a great deal of life to live after a diagnosis. What activities do you or a loved one continue to enjoy?
While the symptoms of Alzheimer’s disease are progressive, there is still a great deal of life to live after a diagnosis.

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.

To learn about the 10 Warning Signs of Alzheimer’s or for ways to keep a loved one active and content go to alz.org/co or call 800.272.3900

What activities do you or a loved one continue to enjoy?
What activities do you or a loved one continue to enjoy?

The Longest Day

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.

The Longest Day
Join us on June 21, 2013 for The Longest Day, as together we honor those living with Alzheimer’s disease and their caregivers.

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.

The Longest Day at Vail
My mom and dad walked throughout Vail for The Longest Day.

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.

Sara Spaulding,
Former caregiver for best friend, partner and husband Bill Perrin, Jr
Alz.org/thelongestday

Even A Rocket Scientist Can Be at Risk for Alzheimer’s

I retired from Mission Analysis and Design (MAD scientist) 11 years ago, having worked a diverse mission set, including Apollo, Comet Sample Return, Mars exploration and classified projects (if I told you, I’d have to kill you).  One of my favorite movies is “Dr.Strangelove”.

My symptoms were first noticed by my wife about 15 years ago, which started a search for answers.  About 3 years ago, I was diagnosed with Early Stage Alzheimer’s, soon followed with a diagnosis of the behavioral variation of Frontal Temporal lobe Degeneration, or bvFTD.

I believe FTD is the more correct diagnosis, but am attending the monthly Alzheimer’s Early Stage patient support group since my diagnoses.  I encourage anyone who has dementia to attend this or any other support group.  It is a great way to share experiences in a safe environment.  You would be surprised at how many symptoms you have in common with others.

My dementia has noticeably increased over the last couple of years.  Memory is a challenge, as is math, including simple arithmetic.  Verbal communication skills and comprehension have also significantly declined.

 Difficulty completing familiar tasks can be a sign of Alzheimer's disease.
Difficulty completing familiar tasks can be a sign of Alzheimer’s disease.

The scientist in me can observe these things in a detached and studious way (a defense mechanism?) which helps, plus being a naturally low key person with a sense of humor.  Either that or my brain has reduced my ability to feel and/or consciously express things.  Probably some combination of all the above.

I have done some consulting for NASA, my last job ending in early 2012.  But it is clear that I can no longer contribute as I once did.  It was fun, and paid well, but all good things come to an end.

My motto is as it always has been, to love and appreciate my wife, to adapt to cognitive decline as best as possible, and to enjoy life as much as possible.

-Phil

Year End Donations

Year-End_Giving_BannerThe holiday season is always a great time to give and exercise the spirit of giving by donating to a qualified charitable organization. Although tax savings are not usually the primary reason for charitable giving, your gift may qualify for significant tax benefits while providing much needed capital for a charity like the Alzheimer’s Association. The rate of diagnosis is on the rise and due to the popularity of Colorado as a retirement destination, the demand for our programs and services is expected to increase dramatically in the next few years. While we work hard to engage the business community in sponsorships for our special events, as is true with most non-profits, our budget is offset by individual giving. As you do your research and make decisions about your end of year giving, we hope you think of the Alzheimer’s Association and the thousands of Coloradoans who need our help.

There are a number of ways you could make that gift to the Association:

Direct Contributions – Gifts enable the Colorado Chapter to continue serving individuals and families in communities throughout Colorado who are living with Alzheimer’s. Designate your gift for general programs and services or to a specific program or to research.

Memorials and Honorariums – A way for family and friends to honor the memory of their loved one or those celebrating special occasions such as a birthday, Mother’s Day, Father’s Day or an anniversary. Tree of Hope LeafTree of Hope – Each leaf on the mural, on display at the Denver office, is inscribed with the name of an individual, group or event being honored. Employee Giving Program – Contribute by designating a specific amount to be deducted from your paycheck. #EndAlz Shirt Planned GiftsInclude the Alzheimer’s Association in your estate plan which can be structured to provide tax advantages and a life income while accomplishing a charitable intent. Shop online – The Alzheimer’s Association receives a percentage of your purchase when you shop at our Web site www.alz.org/co.

Car DonationDonate your car through Vehicles for Charity contributions to benefit the Alzheimer’s Association. Year-end charitable donations keep giving long after your gift is received. Your generous contribution is always appreciated especially in years where financial assets are still struggling to increase in value. -Robyn Moore, Chief Development Officer

Holiday Tips For Caregivers

The holidays offer unique challenges to family care partners as well as the person with Alzheimer’s.

Traditions once shared should be reevaluated and adjustments made if necessary. For instance if Dad always led the tree cutting to the local national forest, maybe this year an adult child could do the cutting after Dad picks out the perfect tree. If your family always attended a worship service together, maybe the local priest or Rabbi would make a visit to your home.

You also may want to consider the size of holiday parties and meals. Gatherings of family and friends can be loud, happy occasions but can increase anxiety and confusion for someone with Alzheimer’s. Consider smaller groups or dedicate a place in the house where a family member can sit quietly with the person with Alzheimer’s if things get overwhelming. Use music as a way to engage the family while including the person who has Alzheimer’s disease. Seasonal music and songs are often remembered long after more recent memories are gone.

Reducing stress for the care partner should be a focus for family and friends as well. Find ways to help by offering to shop, bake, decorate and gift wrap. Offer a respite from caregiving with coupons for a night out, movie tickets or a coffee break with care offered for the person with Alzheimer’s.
Thanksgiving Dinner with Family
Making small changes to your holiday tradition can go a long way toward creating a calmer, more relaxed season for everyone.

Tips for caregivers:
• Have everyone wear festive name badges so the person with memory issues isn’t embarrassed at not remembering the names of family members or old friends
• Use gift bags instead of wrapping paper to involve the person with dementia and save time
• Buy fresh bakery items or ready-to-bake dough instead of spending hours in the kitchen
• Ask neighbors or friends to help with outdoor decorations
• Use Elfster.com or simply draw names for gift giving to reduce the number and cost of gifts
• Plan dinner and parties for earlier in the day before sundowning occurs
• Identify another family member or friend to assist the person with the disease for signs of stress, especially if the primary caregiver is busy cooking or hosting the party
• Find a fun stamp to use for signing holiday cards or scan a signature from a past document and have cards pre printed
Fill an iPod with favorite tunes and make it available when things get overwhelming or you recognize signs of stress in a loved one with dementia

– Sharon Stokes, Alzheimer’s Association Early Stage Services Coordinator

National Caregivers Month: Betsy is a Younger Onset Caregiver

John and Betsy
John and Betsy attending the Alzheimer’s Public Policy Summit 2011
We were devastated when my loved one (John McClelland) was diagnosed at 55, everything changed. After a couple of years and my position ended, I decided to stay home rather than take another position that required heavy travel. I don’t see myself as a “caregiver” at this time, but I do try to help where I can. It has been an adjustment for me to not work and to deal with the loss of income, but it has been a gift to have time together before the full impact of the disease takes over.

We have traveled the country, visited friends and built new memories. I don’t know how long we will continue to do this, but it has been a special time for us.

I take a lead role in managing our finances; making more of the routine decisions; try to keep projects and plans on track; ensure John has a quiet environment to rest; and has healthy meals. It is hard to watch the days when John is caught in a fog trying to sort out the days activities, it exhausts him. Fortunately we have more good days than bad.

We jointly attend a support group for those in early stage. We have already lost one member and all share in seeing the slow transition of the disease together. The friendships and support we have is very important to us. I also attend a support group for caregivers; our leader is excellent; bringing in support for us on the ongoing grief process, as well as time for us to support one another. In that group, are my heroes who support their loved ones in the later stages of the disease. They are role models of strength, love and commitment. I only hope to be that capable when those demands are called upon to me.

-Betsy Anderson

Know the 10 Warning Signs of Alzheimer’s

The last two of the 10 Warning Signs of Alzheimer’s include withdrawal from work or social activities and changes in mood and personality. These two signs go hand in hand. As the person with Alzheimer’s is increasing unable to hold a conversation, follow a favorite sports team or participate in a much loved hobby, it may be hard to determine if signs of depression and mood swings are a result of the isolation or the disease.

For someone who is an avid baseball fan, this sign might be visible with confusion about the rules or trouble remembering who the star pitcher is. Involvement in hobbies might become harder and eventually impossible to continue enjoying. Missed meetings at work or an inability to stay on task, on budget and meet deadlines might be new occurrences for someone used to receiving accolades for performance.  Withdrawal from these activities may be a sign that continuing to be social, deal with the stress of a job or follow the steps required for a hobby are just too difficult.

In addition to the sign of withdrawing from work and social activities, changes to mood and personality are important to watch for. We all sometimes feel sad, anxious or depressed; however, someone with Alzheimer’s will have a more dramatic and sometimes an unexpected  reaction to what’s going on around them. Loud noises, large crowds, and unfamiliar surroundings can trigger anxiety, fear, anger and also increase the risk for wandering in order to get away from noise and people. In addition to mood and personality changes, Alzheimer’s also leads to confusion, suspicion, as well as being fearful and anxious. Family and friends report seeing significant changes in someone who was always cheerful and happy. The change can be very dramatic and unexpected with the person becoming angry and even aggressive. Sometimes that aggression is directed toward someone else. The opposite can also be true of a parent, aunt or uncle who has been characterized as grumpy or even mean all of their life, and now as Alzheimer’s progresses they appear docile, sweet and uncharacteristically loving.

The key to recognizing many of the 10 Warning Signs is the change seen by family and friends, however, if you have concerns about experiencing these signs yourself, your best first step is to see your doctor. Putting the whole picture together can be a challenge even for a healthcare professional and will require a series of tests and exams. While doctors can now be 90% accurate with an Alzheimer’s diagnosis, your own recognition of new trouble you’re having as well as what friends and family are telling you can help complete the puzzle and give you a chance to seek treatment and plan for your own future.

Please visit our Web site to learn more about the disease, the programs we offer you and your family, links to ongoing research and clinical trials that you might find interesting, and our Helpline to call or email for additional information. You are not alone.

 

Linda Mitchell,
Alzheimer’s Association
President and CEO