They say that memories last forever…but we know the terrible exception to this; that’s why we WALK to END ALZ…

ROBIN

She was there every morning, getting you ready for school, no matter how much you fussed. He was there, taking you to sports games and lifting your chin when the score didn’t pan out. She lent you her shoulder, the day you discovered that a first love isn’t usually your last. And although he never admitted it, he cried when he let go of your hand and gave you away to another man. 

So many moments and so many memories… slowly and horrifyingly taken. And, the only person left to cherish them and make sure they existed at all is you…
 
This is the story of Robin Sullivan… and it is all too familiar, isn’t it? Not only did her father develop Alzheimer’s but shortly after his death, her mother also succumbed to this devastating disease.
 
Robin Sullivan walks for her mother AND her father. Here is her story… 

Jack and Pearl Mier were the epitome of devoted parents. Jack was a coast guard veteran and Pearl worked in the school cafeteria so she could spend more time with the kids.  Their story is now Robin’s story – the story of Robin struggling to keep the memories of her parents alive. Robin walks to remember them. 

Robin is a self-described daddy’s girl, which made it all the more devastating when Jack underwent open-heart surgery, resulting in two strokes. After this, Jack began showing symptoms of  Alzheimer’s disease. He passed away five short years later.

During the process of helping her mom, Pearl cope with Jack’s death,  Robin began to notice her mother’s mind slipping. It came on much slower than Jack’s dementia, but eventually Robin and her three sisters had to accept the fact that their mother, too, had Alzheimer’s.

Robin, with help from her sister, took the role as caregiver to her mother. Robin cared for Pearl even after she’d forgotten who her daughters were; even after she’d forgotten herself; even after she’d forgotten how to eat, bathe or speak. Pearl lived with Alzheimer’s for seven years; she passed away just last year, in 2015.

Robin Sullivan walks for her mother AND her father. She walks for their legacy and to remember them. Most importantly, she walks so this doesn’t happen to future generations. 

Robin Sullivan walks for the over 5 million people in the United States living with Alzheimer’s.

Anne and Conrad: From Wife and Husband to Caregiver and Patient

By  Alzheimer’s Association Interns: Diana Gomez, Nadia Lieb and Cullen Peele

As interns for The Alzheimer’s Association, we understand the grave reality of a dementia diagnosis and the dark cloud it can cast over a family.  Whether it has been through personal experience or a simple insight into the disease’s plague, it’s a common observation that Alzheimer’s is truly the purple elephant in a room no one wants to talk about.

Listening; or in some cases not listening; to our families deal with a disease which affects nearly 65 million people worldwide can be a negative experience.  Recently, we spoke to a woman with a thick Georgia accent, classic southern charm and an extraordinarily positive outlook on life. She was a breath of fresh air for us all.  Anne is a woman who is not afraid to acknowledge Alzheimer’s with a charging fist.

anne conradAnne and Conrad of Amelia Island, Florida have been married for 34 years. They are two of the many faces of Alzheimer’s disease. Anne is a caregiver, wife and advocate of this tragic disease. Anne discusses her and Conrad’s marriage and likens it more to a parent –  child relationship. She talks about the emotional toll this experience has had on them.

When Conrad started letting their dog, Lilly outside and forgetting where she was, Anne knew something wasn’t right.  Through a series of trials and studies at Emory University over the course of a few years, the couple finally received a diagnosis in 2007. By then, Conrad already experiencing  the typical stages of decline, was subsequently prescribed almost all the Alzheimer’s drugs currently available (according to Anne).   

Anne: “We participated in every study they [Emory] asked us to participate in, even if he didn’t want to. I would say ‘yes we are’. We are going to help other people, Conrad.’”  

Anne, who also plays bridge, decided to organize a tournament this year in honor of The Longest Day – a signature event hosted by the Alzheimer’s Association each June to raise funds and awareness.  Teams donate money to further advance Alzheimer’s research and treatment. Like many other caregivers who carry a similar millstone for their loved ones, Anne is very passionate about fighting for a cure.

“He [Conrad] has been dealing with this disease for eight or nine years, and he is doing better than anyone I know,” Anne jovially expressed in her southern drawl.  

A Day in The Life of Anne and Conrad

As early risers, Anne and Conrad start their day around 6:00 A.M.  The two enjoy coffee together, and she helps him get dressed before the bus comes to take him to the local adult daycare facility for a few hours.  Their favorite activities together include running anneconraderrands – with Conrad watching the dog in the car during each stop – or simply enjoying a (watered down) cocktail together each night.

Anne: “If you do not take care of yourself, you cannot take care of your loved one,” she says, speaking of her own transformation from wife to caregiver. Then, she pauses and offers some words of wisdom, “You’ve got to laugh; you’ve got to get out; you’ve got to see other people; you’ve got to have a life”. 

On Saturdays and Sundays, Anne takes a few hours to herself and gets some much-needed
help. Someone comes in to watch Conrad while she shops, has dinner with friends or goes to see a movie.  Anne talks about being extremely blessed to have these luxuries, “Some
people don’t have enough money to get the kind of help and support we have,” she says. “I have the ability to utilize adult daycare and provide private help for Conrad – there are so many others who can’t afford to do this.”

Today, Conrad is still unaware of the severity of his condition.

Anne laughed as she reminisced on this past year’s Easter Egg hunt at their church. “Conrad laughed and said to me ‘the best part of memory loss is that I can hide the eggs and find them too,’” she shares. “It’s important to find the humor in things and Conrad always does. If we didn’t laugh, we would cry,” she laments. 

With Science Beginning to Catch Up, We Find More Reasons to Hope…

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With each year, we find more reasons to hope – As science begins to catch up to this dreadful disease, the Alzheimer’s Association is excited to share the latest findings at the annual Alzheimer’s Association International Conference (AAIC)

This month, we hosted the Alzheimer’s Association’s International Conference (AAIC), which is the largest convening of scientists, researchers and healthcare providers for Alzheimer’s and dementia in the world. Each summer over 5,000 people attend, and over 2,000 presentations are made throughout the week long event that spaaic7otlights recent developments, research and new science in the area of Alzheimer’s disease and related dementias!

“By now, you may have seen some of the news from research results released at AAIC including results from studies released on Sunday that suggested behaviors can
help build resilience to the effects of Alzheimer’s disease,” said our president and CEO Harry Johns.

What happened at AAIC last week?

The event kicked off on Friday, July 22nd, in Toronto with over 5,050 people in attendance.
37 of those attendees were from our Central and North Florida area. Some of our favorite doctors, scientists and researchers from Mayo Clinic, University of Central Florida, University of Florida, and University of North Florida were in attendance!  

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AAIC concluded on Thursday and left us with some promising major highlights and findings:

  • According to Melissa Murray, a medical researcher at Mayo Clinic in Jacksonville, Florida – Men living with Alzheimer’s are more likely to be misdiagnosed than women impacted by this disease. (For more information, click here.)
  • Preliminary results from the conference showed that aerobic exercise combined with ongoing cognitive training can play a major role in slowing cognitive decline for those diagnosed with MCI (Mild Cognitive Impairment). AAIC2
  • According to a study from the Wisconsin Disease Research Center and the Wisconsin Alzheimer’s Institute, those with more complex or stressful jobs,  may have a better chance of fighting off Alzheimer’s.
  • Technology plays a big role when it comes to Alzheimer’s. Computers and “telemedicine” (the remote diagnosis of patients through telecommunications like telephone and skype),  alike can help increase engagement and make routine check ups and testing easier and more convenient for patients and caregivers living in rural or remote areas.
  • According to Alzheimer’s Association, CEO Harry Johns, four additional studies also suggested that modifiable risk factors can help build resilience to age-related cognitive decline. Formal education, complex work and newly identified genes may increase resilience to cognitive decline and dementia, even in people at high risk for the disease. 

For a more comprehensive list of presentations and updates from the Alzheimer’s Association International Conference (AAIC), visit us at  http://www.alz.org/aaic/.

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Tips to Coordinate Your Care & Resources

david huckabee profile picBy David Huckabee

Coordination of care and resources can be one of the greatest challenges faced by a caregiver. Making sure that all needs are addressed, medical appointments are kept, financial records are accurate, and that nothing falls through the cracks can seem overwhelming even to the most diligent caregiver. At the Alzheimer’s Association, we offer several suggestions to help caregivers through the maze of care coordination. The first of these suggestions seems almost too simple, but it is one that we often forget in the moment.

20100823_carbo_nola_0085_lowres1. Write everything down. Studies have shown that the mere act of writing something down helps us remember it. Even if we don’t remember it, we have the written list to refer to as needed. When we say everything, we mean everything. Doctor’s appointments, questions about symptoms, phone numbers of neighbors and friends who have offered to help (and what they might be able/willing to do)…the list goes on and on. Obviously, what ends up being written will depend on the situation but when in doubt, write it out.

2. Stay organized. Reducing clutter and keeping important information in a central location can reduce the time and energy needed to find something in the moment. This includes legal papers, financial statements, medical information, etc. We also suggest that at least two people have knowledge of where these important papers are located.

3. Plan ahead. Unfortunately, much of the stress caregivers experience happens when situations that could have been planned for were ignored or put off until another day. myf018None of us enjoy thinking about end of life decisions, facility placement, and other stressful situations. However, planning ahead as much as possible for these events greatly reduces stress in the moment.

4. BREATHE! With very few exceptions, decisions that you need to make as a caregiver do not need to be made immediately (no matter how much other people want you to have to make them in the moment). We always think better and make better decisions if we give ourselves time to reflect and consider our options. Being a great caregiver doesn’t necessarily mean being a fast caregiver.

If you would like more information about any of these suggestions or would like to participate in our educational/support opportunities, please contact the Alzheimer’s Association Central and North Florida Chapter at (800) 272-3900 or e-mail me directly at dhuckabee@alz.org. David Huckabee is the Associate Director of Programs for the North Central Florida Regional Office of the Alzheimer’s Association.

Alzheimer’s Association Summer Safety Tips

Alzheimer’s Association Summer Safety Tips:

The pleasures of summer include longer, warmer and sunnier days, celebrations with family and friends, and backyard BBQs. For the person caring for a loved one wialzblog1th Alzheimer’s disease, summer can also bring with it additional safety challenges. By taking a few minutes to review the following safety tips, families can enjoy a fulfilling and pleasant summertime together.

Sunshine and Warm Weather

• Limit your loved one’s exposure to the sun. Place lawn chairs in shaded areas. Stay indoors between 10 a.m. and 2 p.m. when the suns rays are the strongest. Encourage your loved one to wear a hat and sunglasses.

• Remind your loved one with Alzheimer’s disease to apply and reapply sunscreen when outside for long periods of time. 

• During the summer it is especially important to drink lots of fluids. Keep a cool glass of water within arm’s reach as a reminder. Add a flavor to the water to make is more interesting and tasty. Provide non-alcoholic beer or lemonade for backyard BBQs. alzblog2

• Decision making may be increasingly difficult so dressing appropriately for hot days can be hard. Put away winter clothes, boots, gloves and hats, and replace them with just one or two choices of shirts, pants or shorts/skirts, a hat with a large brim and a light jacket or sweater.  

• Enroll in or if necessary, update information with, the Medic Alert + Alzheimer’s Association Safe Return to reduce the risk of wandering.

Summer Fun

• Loud noises and crowds can increase anxiety. Consider watching fireworks from your home or in the quiet of the car and parades on television; picnic on a weekday or early in the day on a weekend when crowds are lighter. 

• Never allow unsupervised access to fire pits, and the hot surfaces of BBQ grills or campfires.Woman meditating

• Attending a minor or major league ballgame may be something your loved one has always enjoyed. However, large crowds can be overwhelming for the person with Alzheimer’s disease. Identify a “buddy” so you don’t lose track of who was supposed to stay with your loved one, accompany your loved one to the restroom and the concession stand, and stay with them at all times. Watch for signs of discomfort or confusion.

• Do not allow an individual with Alzheimer’s disease to swim unsupervised, and do not leave children in the pool under the supervision of the person with Alzheimer’s disease, even for a short period of time.

• If your loved one still enjoys bicycling, consider accompanying him on the ride or ask a trusted companion to accompany him.  Encourage your loved one to wear a helmet and to ride on trails designated for pedestrians and cyclists. Or look into spin classes at the local recreation center.

• Keep an eye on sharp gardening shears or tools and closely monitor their use. Use fertilizers that are not harmful if swallowed accidentally and ensure that the plants in the garden are not poisonous. Keep a box full of tools with gloves so your loved one can easily find it and everything is in one place.alzblog3

• Family reunions can be overwhelming to the person with Alzheimer’s disease and may rely greatly on her ability to recall names and faces. Consider limiting the amount of visitors and prepare both family members and the person with Alzheimer’s disease in advance for the visit. Try using fun name tags and get everyone involved to reduce embarrassment for the person struggling with names. Have a back-up plan that will allow for a quiet place to rest if things become overwhelming or confusing. 

• Many families plan vacations and trips during the summer. New and unfamiliar places can be confusing for the person with Alzheimer’s disease. It may also provide clarity for the family that there is in fact an issue with memory loss and other symptoms of dementia that earlier were undetected. Contact the Alzheimer’s Association upon your return if you are concerned about new behaviors or symptoms you may have noticed once away from home. Consider simplifying travel plans or traveling to a familiar destination. Most airlines offer companion programs for those traveling with special needs. That way you can be assured a loved one has arrived safely alzblog5 made a connection without any problems. Alert the Medic Alert + Safe Return registration phone line of your travel plans and provide them with contact information for your destination. 

Important Contact Information

  • Alzheimer’s Association 24-Hour Helpline – 1-800-272-3900
  • Medic Alert + Safe Return Enrollment Line – 1-888-572-8566
  • Medic Alert + Safe Return Incident/Emergency Line – 1-800-625-3780

Orlando Goes Purple for a Purpose

The City of Orlando and the City of Winter Garden turn purple for a purpose on Monday, June 20th

June 16, 2016, Orlando, FL – In light of recent, tragic events, Orlando remains vibrant, strong and committed to casting a spotlight on Alzheimer’s disease as the City goes “purple with a purpose” on Monday, June 20th. 

There are an estimated 5.2 million Americans, over 500,000 Floridians, and nearly 60,000 Orlando area residents living with Alzheimer’s disease. Florida has the second highest incidence rate in the country for Alzheimer’s and dementia making it “ground zero” for the disease. Alzheimer’s it the sixth leading cause of death in the country, and the only disease among the top 10 leading causes of death without a prevention, treatment or cure.

During the month of June, the Alzheimer’s Association is celebrating Alzheimer’s & Brain Awareness Month (ABAM) in an effort to raise awareness and support, as well as to let Orlando area residents know that there is help in the community. “We offer a 24/7 Helpline manned by dementia specialists every day of the year, every hour of the day and night,” says vice president of programs, Julie Shatzer. “We provide caregiver support groups, education programs, art programs and a host of offerings both in English and in Spanish to all residents,” she adds.

The City of Orlando and the City Winter Garden, have committed to going “Purple with a Purpose” in honor of Alzheimer’s & Brain Awareness Month. Major landmarks in the area will be purple all day and night on June 20, the summer solstice – the longest day of the year. To honor those who are caregivers for their loved ones; where every day might feel like the longest day, the Alzheimer’s Association is hosting its annual Longest Day® event from sunrise to sunset nationwide to celebrate all those that have succumbed to the disease and the many caregivers who have loved them. Major sites that are going purple with a purpose should include:

Orlando:
· Astrogenesis II

· Global Coverage

· Take Flight

· Union

· Cedar of Lebanon

· Amway Center Sign

· Orlando’s Tower of Light

· Lake Eola Fountain, Lake Eola Park – Downtown

· Orlando Sign at Citrus Bowl

Winter Garden:

· Citrus Fountain

· City Hall

· Local Downtown Art Gallery
Alzheimer’s Association®

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research. It is the largest nonprofit funder of Alzheimer’s research. The Association’s 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. Its vision is a world without Alzheimer’s. Visit our website or call 800-272-3900.

The Longest Day with Gary Koski

The longest day of the year will be June 20 th and on behalf of Eastbrooke Gardens, Gary Koski will participate in a 16 hour triathlon to benefit the Alzheimer’s Association. The triathlon will commence at 5am from the Downtown Orlando, YMCA and concludes at the Winter Springs, Tijuana Flats at 9pm.


Gary will complete the following:
 Swimming (5hrs & 20mins);

 Cycling (5hrs & 20mins); and

 Running (5hrs & 20mins).

Gary will complete most the activities solo except the running portion where he will be joined by his brother, Steve Koski, who has graciously, offered to accompany him. Gary is the Activities Director at Eastbrooke Gardens and has witnessed the effects this disease has on the elderly population. As the Activity Director Gary and his staff work to engage the residents with their cognitive functions and ensure they are continuously entertained to minimize distress or frustration brought on by this progressive disease. The staff at Eastbrooke Gardens is incredibly proud that Gary has opted to take on this event and will be cheering him along with his wife, Catharine Koski. We invite all to come and congratulate him at Tijuana Flats on the Monday, June 20 th between 8-10PM. If you mention his name or Eastbrooke Gardens upon your order a portion of your receipt will be donated to the Alzheimer’s Association.

Support Gary

Uncovering the Truth About Alzheimer’s Confronts Damaging Myths About the Disease

The Alzheimer’s Association Offers More Information for Alzheimer’s & Brain Awareness Month this June. 

June 1, 2016, Daytona Beach, FL – June 1 begins Alzheimer’s & Brain Awareness Month (ABAM), as the Alzheimer’s Association confronts damaging myths about the disease.  It is now common knowledge that Alzheimer’s robs people of their ability to remember, but we now know that it is a fatal disease with symptoms that extend past memory loss and can affect anyone, at any age.

6th cause of death

  • Truth: Alzheimer’s disease, the sixth-leading cause of death among Americans, leaves no survivors and is the only cause of death among the top 10 in America that cannot be prevented, slowed, or cured. Every 66 seconds, someone is diagnosed with Alzheimer’s disease.
  • Truth: Early diagnosis matters. A common misconception is that Alzheimer’s disease is normal aging. With an estimated half a million Floridians and nearly 16,000 Volusia County residents living with Alzheimer’s disease, studies show less than half have been diagnosed. Early diagnosis means families living with the disease can plan and build a solid support system.
  • Truth: Risks are higher among some more than others. African-Americans are about twice as likely as Caucasians to have Alzheimer’s or another dementia. Hispanics are about one and a half times as likely; and
    cullen with collateral at forum

    Cullen Peele advocates on Capitol Hill.

    more than two-thirds of Americans with Alzheimer’s disease are women – making women nearly two times as likely to get Alzheimer’s as men.

  • Myth: Alzheimer’s is an older person’s disease. The truth is one in nine people age 65 and older will be diagnosed; and one in three seniors will die with Alzheimer’s disease. Although age is the biggest risk factor, Alzheimer’s disease can affect anyone with a brain.  “My father was diagnosed at age 59 when I was a junior in high school.  It blindsided our family and devastated our future plans,” says Cullen Peele, Alzheimer’s Association Young Advocate.  “Now, I work with the Alzheimer’s Association so there is a chance others can avoid our tragic loss.”

  • Myth: Alzheimer’s disease is just memory loss. The truth is Alzheimer’s is a fatal disease there are no survivors. From 2000-2013, the number of Alzheimer’s deaths increased 71 percent, while deaths from other major diseases decreased.

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  • Myth: There is no way to reduce your risk of Alzheimer’s disease. The truth is staying mentally active, engaging in regular physical activity and eating a healthy diet benefits your body and your brain. There is also some evidence people may benefit from staying socially engaged with friends, family and the community. The Alzheimer’s Association is sharing steps to reduce your risk of cognitive decline with 10 Ways to Love Your Brain.

 

 

“Our Central and North Florida Chapter provides education programs, support services and resources to all of our local families in need,” says chapter CEO Kay Redington. “During Alzheimer’s & Brain Awareness Month, we encourage everyone to show their support by participating in the Longest Day on June 20th and wearing purple during the month of June.”

To get involved: Longest Day Kayaking

Participate in The Longest Day® on June 20, a sunrise-to-sunset event to honor those facing  Alzheimer’s disease with strength, heart and endurance.

             longest day picture gardening team

Alzheimer 01 mw 061615

 

Local businesses and organizations are encouraged to shine a light on Alzheimer’s by lighting their buildings purple this month to show their support and raise awareness. Visit alz.org/cnfl or call 800-272-3900.

turn-fb-purple

 

Join the Alzheimer’s Association in wearing purple throughout the month, especially on June 20. Share photos of yourself, family, friends and co-workers wearing the movement’s signature color via Twitter, Facebook, Instagram, etc. with the hashtag #ENDALZ and #IGoPurpleFor. At alz.org/gopurple, find out who else is going purple for Alzheimer’s.

 

Alzheimer’s Association®

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research. It is the largest nonprofit funder of Alzheimer’s research. The Association’s 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. Its vision is a world without Alzheimer’s. Visit alz.org or call 800-272-3900.

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Alzheimer’s: A Real Love Story…

Julia Balson; a slight, red-haired woman with a big smile, English accent and twinkling eyes, now knows that Alzheimer’s disease affects nearly 47 million people worldwide; a growing percentage of which are under the age of 65 – she knows this ugly statistic because her beloved husband, Mike was diagnosed at age 58. “But isn’t Alzheimer’s an “older person’s” disease” I ask her? I know this is what a lot of people think, so I put the question out there… She sighs heavily and tries to steady her vital, yet sad voice, “Unfortunately not”, she finally says.

Mike and Julia 1

Mike and Julia Balson, along with thousands of others living with younger-onset Alzheimer’s disease need the world to know that while theirs is a true and lasting love story, the reality of Alzheimer’s isn’t what’s depicted in The Notebook, and the disease doesn’t just affect “old people” memories at the end of lives.

Married for over 47 years, the Balsons are world travelers, adapting to many global cultures during their life together. Like any couple, they’ve had children, challenges, joys and regrets.  But one thing they never planned for, or ever thought about, was the possibility of Alzheimer’s wreaking havom and julia balson, beachc on their family.

Mike was a strong, elite athlete who played professional soccer on the international circuit for more than a decade. He played on big teams in the UK and, at one point in his playing career, moved his family to South Africa to join a professional team there. (The family had to eventually leave due to the overwhelming violence from the Apartheid riots in the area). So, Mike and Julia, no strangers to adversity, felt they could take on any problem that came their way. When Mike started showing signs of mental “fogginess”, they both dismissed it (or denied it, as Julia tells me later) until the symptoms became so apparent one day when Mike filed his paycheck in one of Julia’s “cookery” books…

Despite such a difficult diagnosis, they both maintain sunny dispositions and a strong desire to help others in similar situations. I recently had the privilege of speaking with Julia and Mike about their journey with Mike’s diagnosis. Both of them were quick to offer advice about love, acceptance, and living with “ALZ”.

Tell me a little bit about being married for 47 years – what would you say the secrets to success are for a marriage?

Julia: Big factors for us are hard work, accepting the ups and downs, our faith in God, and our prayers for a miracle cure. I think it’s also important to love and respect each other and try to ignore each others faults. No one is perfect! We look for ways to serve each other, and put each others needs above our own. We definitely try to encourage each other; and we make it a point to laugh a lot. Now we hold the motto that unless a situation is life and death at the moment, we don’t worry about it.

Mike: Never give up; it’s so easy to give up when you’re faced with this kind of situation but you just can’t.

Julia, when did you first realize there was something “off” with Mike? How did you respond to this?

Julia: Two things stand out- I found a paycheck in a “cookery book”- it was lost and we couldn’t find it for weeks. This was odd because Mike had always been so “on-top” of everything. Also, his driving abilities seemed to be declining. Honestly, I panicked at first and then I was definitely in denial. We ended up getting help through the Alzheimer’s Association much later on; looking back, we should’ve reached out earlier, but I was scared and felt helpless and isolated.

Mike, what about you? When did you first start noticing things? What did you notice? 

Mike: Things just weren’t right, but I couldn’t figure out exactly what wasn’t right. And, I don’t think I could accept it. I kept asking for directions to go to work (as a soccer coach), and it took 20 minutes to do a bank deposit once which was unusual because I always had a keen mind.

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What did you do when you noticed these things? Can you take us through the time you began to notice problems, through getting the diagnosis?

Julia: We didn’t do anything at first.  Eventually, we realized we needed to get help because Mike was struggling with day-to-day tasks. Initially, Mike was diagnosed with Mild Cognitive Impairment (MCI) that we think was caused by carbon monoxide poisoning and a subsequent mini stroke. However, after visiting a specialist, we later got the diagnosis of Alzheimer’s Disease.

What has been the biggest change to your relationship since the diagnosis? What do you find to be the biggest issues you have to tackle on a daily basis? 

Julia: I’d say our biggest change has been the role reversal, because I now have to take care of everything that Mike used to do, like all the driving, the financing, and house stuff. I also have to help Mike choose clothes (He would sometimes dress awkwardly with clothes in the wrong order, or not seasonally appropriate), make sure he takes his medications correctly, and make sure he is bathing correctly. I know it upsets Mike that he isn’t able to take care of me like he used to, but I am a pretty strong person and can take care of myself, so I don’t mind that as much.

Mike: The lack of driving ability is upsetting and it’s a struggle to remember day-to-day details. (An example: even being sent to get something from another room in the house is a challenge because once he gets to that room, he likely won’t remember what it was he was supposed to get.) It is also upsetting that I can’t take care of Julia like I used to. I have a problem remembering to eat- Julia will leave food prepared for me and I’ll forget about it completely. Also, I’m trying to work on interacting with others.

What adjustments have you made that you consider to be a success that you can share with other couples living with this disease? 

Julia: A key thing for us it to write everything down (appointments, instructions, reminders, etc.).  Writing everything down really helps Mike to remember to do things. When I was in denial, I didn’t write everything down and that would get frustrating for both of us. Now, we keep a calendar on hand with everything written down. I also joined an Alzheimer’s Association support group; I’ve found that spending time with others on the same journey is a great comfort. I take Mike to the Memories in the Making(R) art classes; something he’d never done before but he really enjoys. Another big thing was to accept the changes, to recognize that there is life after the diagnosis even though it’s never going to be the same as it was.

Mike: I really enjoy going to the gym and trying to exercise as much as possible because exercise is so important for brain health. I also try to get plenty of rest. I like to read out loud as this can be helpful for dementia because it forces blood to the brain. I also used to go to the brain fitness center in Winter Park, and we now go to the Memories in the Making(R) classes with the Alzheimer’s Association.

Working with the Alzheimer’s Association, what do you regard to be the most beneficial support services they provide? What would you suggest to a couple who is just receiving a diagnosis?

m&j balson selfie

Mike: Their monthly couples support group has been our biggest lifeline. When all this started, Julia was constantly stressed and ill from trying to handle everything on her own.

Julia: There is a church service the first Wednesday of every month in Winter Park that has been very important and beneficial for us. To anyone who is just receiving a diagnosis-don’t panic. There are so many resources offered by the Alzheimer’s Association. They can get help by joining a support group-the staff are kind and wonderful-and no one should go through it alone. Also, remember that there is life after an Alzheimer’s diagnosis-it’s different, but there is life.

Tell me about your current status. I heard Mike was involved in a clinical trial. Can you tell me about the trial and his response to the medication? How optimistic do you feel about Alzheimer’s and dementia treatments, preventions, and, one day, a cure?

Julia: Participating in the clinical trial improved his health and memory so much that he is able to laugh again. The success he’s had with the clinical trial has really allowed Mike to return to many activities that were formerly lost to him. He was able to get his soccer book published (it offers helpful hints for coaches, parents, players, and those who’ve never played before). Also, he’s able to converse more easily with others, and we’re enjoying a lot of our favorite activities again. We are very optimistic about the progress with the trial, despite the challenges. We are constantly praying and hoping for a miracle cure because this is such debilitating disease.

Mike: It’s like this is a big game and dementia is losing. I was very impressed by the research company behind the clinical trial, and my experience with the trial was good. I’m very happy about it and feeling good overall.

If you could tell people one thing about life after diagnosis, what would it be?

mike and julia2

Julia: You should appreciate every day that you have together as a blessing from God and take life one day at a time. No matter how much you love each other-or the person you are caring for-you just get frustrated sometimes. So take time to sit and say “let’s regroup” when you are frustrated or upset with each other.

Mike: I would say to remember that caregivers must take time for themselves because life as a caregiver can get challenging and overwhelming.

The Balsons hope that sharing their story will encourage others who may be dealing with similar struggles and fears. Before working with the Alzheimer’s Association, and subsequently interviewing Julia and Mike, my only exposure to Alzheimer’s disease was the romanticized version shown in The Notebook. I had no idea how debilitating this disease really is until a few months ago, and like many others, I was frightened and horrified by the reality of Alzheimer’s. Talking with the Balsons was encouraging and comforting, and knowing that love and compassion could survive and evolve in such a devastating situation was truly inspiring. Though Alzheimer’s is more than just losing memories, Mike and Julia will be the first to remind you that it doesn’t have to mean losing love.

If you or a loved one is dealing with Alzheimer’s or another dementia, feel free to contact our 24/7 helpline at 800.272.3900 or visit us online at alz.org. We offer support groups and many other services; and we are here to help!

Written by:

Abby Nehring, April 2016

Blondes vs. Brunettes Spotlights

Support Team Blondes or Team Brunettes! Either way we all win!

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PAMELA – Captain Team Blondes

“This is my second year playing and I am so happy to be back! This is my first year as
Captain of the Blondes and I’m honored to be able to lead my team to a win!

I BVB to honor my patients who have trust in me during this scary and confusing time in their life as they battle Alzheimer’s. I work as a PTA in both a hospital and a skilled nursing facility. I think it’s important to advocate for those people who don’t have anyone fighting for them. I also really enjoy the social aspect and helping to spread the word of Alzheimer’s to the younger generation.

I am proud to be involved with an organization that is fighting for a cure to a disease that destroys families and changes who you once knew. GO BLONDES!”

 

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DAN – Coach of Team Brunettes

This is Dan Brackett’s second year coaching Team Brunettes. Dan knows that though it’s important to beat the Blondes for a second year in a row, it’s more important to win the fight against a disease that affects 5.4 million Americans.

He is proud to be part of an event that involves camaraderie and competitive spirit to raise awareness and money in the fight to end Alzheimer’s.

 

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PACE – Coach for Team Blondes

“I’m playing football this year in this exciting, unique fundraiser to honor the memory of my grandfather who passed from Alzheimer’s disease. With our family’s personal struggle, I realized this disease affects so many people. Blondes vs. Brunettes is a great way for me to do my part to help raise awareness for Alzheimer’s. I mean, what could be a better way to have fun and give back to such a worthy cause then to play some football?!

This is my first year playing; and I can tell you I’m already having fun at our practices and meeting such a great group of people! I look forward to continuing with this amazing effort and play a great game of football on May 14th! No matter who actually wins; we’re all winning because we’re working on beating Alzheimer’s disease!”

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SAM – Coach for Team Brunettes

This is Sam’s first year as Team Brunette coach and “I’m having a great time!” he says. Along with having fun, that is not the only reason he participates in BvB. “I want to support families dealing with this disease that don’t have an advocate” he says.

A long time football player, Sam is lending his skills to teach the brunettes the secrets of success on the field. Sam adds “I know we are making an impact and I am happy to be part of such a great experience. Go Brunettes!”