“House of Memories” re-creates the 1950s for people living with Alzheimer’s
Tucked away in one corner of the Den Gamle By (The Old Town) Museum in Aarhus, Denmark, is an entire apartment straight out of the 1950s. The “House of Memories” isn’t usually open to the public and is intended for visitors living with Alzheimer’s and other forms of dementia to experience their history.
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Orange sherbet, the basement train set and pumpkin cookies are three wonderful memories I have with my nana. But things started to change with her – forgetting my name and becoming confused with typical daily tasks and activities. Nana was diagnosed with Alzheimer’s disease which progressed quickly and she passed away from complications due to Alzheimer’s. The impact this had on our family will forever stick with me, as will Nana in our hearts.
My name is Jonathan Grimwood. I am a 23-year-old graduate student at Illinois State University, studying Exercise Physiology, who also provides pizza to the wonderful people of Bloomington-Normal, Illinois on the weekends. I first became interested in running in 2009, my junior year of high school, when my friend Derrick told me to come to cross country practice after the first day of school.
Being the irrational teenager that I was, I proceeded to quit my job the very next day and go to practice. Using the word “rough” to describe those first two weeks of practice would be an understatement. For some strange reason, I stuck with it. I fell in love with what running was doing for me, both mentally and physically. Something had finally come along to bump polar bears out of the number one spot of Jon’s favorite things.
Chicago Marathon volunteer
Our cross country team volunteered at the Bank of American Chicago Marathon in 2009. We were handing out water and Gatorade to participants at the 13.1 mile marker. The energy and excitement is what originally piqued my interest in races longer than 3.1 miles. I continued to run recreationally through the first few years of college at Illinois State, the occasional 5K or 10K.
In 2012, I volunteered with the medical staff at the finish line of the Chicago Marathon. Seeing the determination of the participants as they crossed the finish line gave me chills. The constant support from friends and family as they exited the finisher’s chute struck my emotions more than I could have imagined.
Marathon participant
That solidified my decision to run and complete the Chicago Marathon in 2013, which changed my life in ways I wish I had more words to describe. It gave me so much confidence, mental strength, and appreciation of life that within a week of finishing my first one, I wanted to share this passion with others and complete another marathon. As cliché as it sounds, I knew I needed to do it for something much larger than myself.
The Alzheimer’s Association was the first organization that came to mind. I did have prior involvement with the Alzheimer’s Association. In the early 2000s, things started to change with Nana. It started out with forgetting my name, followed by playfully chanting, “Bill, Bob, Sam” to make a joke out of it. Nana then began to become confused with typical daily tasks and activities. It all seemed a little peculiar. Shortly after, she was diagnosed with Alzheimer’s disease.
During middle school, my mom, siblings and I would go visit Nana immediately after school in order to spend time with her and attempt to keep her memory fresh. Unfortunately the disease progressed very quickly, and in 2006 Nana passed away from complications due to Alzheimer’s.
A personal connection
The impact this had on our family will forever stick with me, as will Nana in our hearts. Those daily trips we made to spend time with Nana gave us the opportunity to appreciate our time together and taught us to never take anything or anyone for granted.
It also gave me a first-hand look at the terrible things this disease does, slowly changing a person from the inside out. From that point forward, my family decided to help make a difference by getting involved with the Alzheimer’s Association and participated in the Walk to End Alzheimer’s for multiple years. Now, as a 23-year-old looking back at this experience, I knew it was time to become involved again.
Since the 2013 marathon, I have completed five half-marathons, a few 10-mile races and a triathlon, but I knew it was time to revisit the past. After deciding that 2016 was going to be the year of the next marathon, I was discussing it with my great friend Elizabeth Cook, who works for the Alzheimer’s Association. She mentioned that they have a running team for the Bank of America Chicago Marathon called the ALZ Stars. Since I was already familiar with the great things this organization does for the advancement of research and care for individuals with Alzheimer’s, I knew that it was the way to go.
Joining the ALZ Stars
My previous experiences with this organization proved how wonderful the people truly are. Elizabeth put me in contact with Sharri Scott in order to join the ALZ Stars team. There was not a doubt in my mind that running in the 2016 Bank of America Chicago Marathon is how I wanted to start making a difference.
From the second I joined the team, the entire ALZ Stars community opened up and accepted me right into the family. The passion behind all of the stories is truly inspiring. The support system is unrivaled and continues to make me more excited as every week of training goes by. The sense of commitment emanating from each team member really helps to form the sense of community, even though we are spread all over the country.
Being a part of this community helps drive me towards my goal of raising $2,000 for the race. While that number can be quite intimidating for any college kid, I have confidence that it is very achievable with the help of generous and loving people who want to help put an end to suffering and help researchers eventually find a cure for Alzheimer’s disease.
If this story touches only one person, I would still consider it a success. In the end, all that we have to continue moving this world forward is each other. All we can do is love, support, and help each other. Participating in the 2016 Chicago Marathon with the ALZ Stars on October 9 is how I hope to do this. I sure hope to see some of your wonderful faces there this October.
I am missing the last homecoming of my college career for this, but I wouldn’t have it any other way.
http://www.optimumseniorcare.com/services/alzheimerscare.php
Participating in Alzheimer’s clinical trials could help lead to potential treatments
More than 150 Alzheimer’s disease and related clinical trials in the United States are looking for volunteers. Every study gives researchers invaluable information that may eventually lead to answers on how to treat Alzheimer’s disease. Alzheimer’s Association TrialMatch® is a free, easy-to-use clinical studies matching service that connects individuals with Alzheimer’s, caregivers, healthy volunteers and physicians with current studies.
When you or a loved one receives an Alzheimer’s disease (AD) diagnosis and the equally bad news is that there isn’t a single medication on the market that can stop the mind-robbing disease in its tracks, it’s easy to feel hopeless. Who wouldn’t? But on the contrary, there is every reason to be hopeful. Why?
More than 150 Alzheimer’s and related clinical trials in the U.S. are looking for volunteers.
Each of these studies is testing an experimental treatment to discover whether one of them could be an effective treatment or a cure, the answer to so many prayers. Although the investigational medications currently being tested in clinical studies may not stop the disease progression or prevent its devastating escalation, every study gives researchers one more bit of invaluable information that will eventually lead to answers on how to treat Alzheimer’s disease.
Effective treatments, however, will only come by way of rigorous research and the thousands of dedicated volunteers who enroll in clinical trials. This includes both people with Alzheimer’s disease and other dementias, as well as healthy volunteers. Researchers have learned much from previous studies, and while some might call them failures for not discovering that elusive “cure,” they are anything but failures. Every study teaches a lesson; like a puzzle, each piece bringing us a bit closer to the solution.
It is through clinical studies that researchers learn how brain changes caused by AD offer potential targets for new drugs that may stop or slow the progress of the disease.
Researchers are on a quest to learn everything they can about Alzheimer-related changes in the brain; the more they know, the greater the chance of finding a treatment that will prevent or even reverse these brain changes. The ultimate therapy may not be one drug at all but rather several aimed at various targets.
I think this combination approach holds the most promise and here’s why: When AIDS exploded on the scene in the 1970s, the medical community was as frustrated as today’s Alzheimer’s disease researchers – nothing could stop this medical hurricane. Eventually, after years of research and clinical studies, they found the elusive treatment…and it wasn’t one, it was several. They discovered that if they administered a cocktail of medications that targeted various biological aspects of the disease and gave it to people in the HIV stage that they could prevent HIV from advancing to AIDS. Today this drug cocktail is the quintessential treatment for AIDS that has saved thousands of lives. Many Alzheimer’s researchers believe a successful treatment for Alzheimer’s will eventually involve a similar “cocktail” of medications that will concurrently target different brain changes.
But to get there, we have to accelerate the pace of research. According to drugdevelopment-technology.com, “Patient recruitment is absolutely essential to the success of pharmaceutical research, and consequently patient care, but today nearly 80% of clinical trials fail to meet their enrollment timelines and up to 50% of research sites enroll one or no patients. Not only does this translate into as much as $8m in lost revenue for each day a drug is delayed, it also means that cutting-edge new medications are significantly delayed in their journey to the patients who need them most.”
Without volunteers to participate in research, the progress of discovery will not hasten. The faster the studies enroll participants, the faster researchers can discover if the drug they are testing works, and the closer we will get to a therapy or medication that may give people with Alzheimer’s a longer quality of life.
For example, the MINDSET study is testing an investigational treatment for mild-to-moderate Alzheimer’s disease that is taken together with the medication donepezil (Aricept®). In a previous study, researchers observed that the combination of RVT-101 and donepezil improved cognition and activities of daily living, compared to donepezil alone.
Ready to help move research forward?
Visit the Alzheimer’s Association’s TrialMatch website. It’s free, all information is kept confidential and the Association provides extensive information on various clinical trials in addition to individualized trial matching.
Oh, and the hopeful part that I mentioned at the top of this post? By participating in a clinical study you get first crack at investigational medications that you can’t get any other way. You may or may not benefit from taking one of those medications. But if you don’t enroll, then you can only wait until a medication or cocktail of medications is approved by the FDA. That could be years from now. And every trial – whether the results are positive or negative – provides learnings that move research one step closer to putting this horrific disease behind us.
About the Author: Jeffree Wyn Itrich spent over nine years managing communications and patient recruitment for clinical studies at the Alzheimer’s Disease Cooperative Study (ADCS) at UC San Diego. The blog she managed at the ADCS, Alzheimer’s Insights, was named the number one Alzheimer’s blog in 2016 by Healthline.com. After her early retirement, she couldn’t stay away from the field and now works in patient recruitment at Bioclinica, Inc.
http://www.optimumseniorcare.com/services/alzheimerscare.php
You never know how any disease truly affects families until it’s happening to you. We all started seeing signs of Alzheimer’s in my grandpa but didn’t want to admit that he was changing. This man that we all looked up to was turning into someone we didn’t know. He forgot memories, the grandkids’ names, friends’ names. It was okay, as long as he could remember who I was, and that I was his family. Then as time went on, that faded too.
You never know how any disease truly affects families until it’s happening to you. Alzheimer’s started to affect my family several years ago. We all started seeing signs of Alzheimer’s in my grandpa, but didn’t want to admit it yet. My sweet, quiet grandpa was changing. This man that we all looked up to, the glue behind our family, was turning into someone we didn’t know. He would start to forget memories, the grandkids’ names, and other friends’ names. It was okay, as long as he could remember who I was, and that I was his family. Then as time went on, that faded too.
We would go see him and he would have no idea who we were or why we would even bother visiting him. He would get frustrated sometimes that we were there. We just wanted to see the grandpa that we knew and loved, but that person was no longer there. We would still go to visit, some days he would tolerate us and some days he didn’t want to see us. As years went on, we would watch the grandpa we once knew slowly disappear.
Not long after my grandpa passed away, my grandma was diagnosed with dementia. My grandma loves her grandkids; we are her world. She is so proud of every one of us and she has a lot of them to be proud of – over 20 grandkids that all love and adore her. It is like we are starting this heart wrenching journey all over again.
She will sit there and tell us the same story over and over again, but all we can do is enjoy it. At least she still smiles when she sees us. She still knows who we are and how much we mean to her. We will walk around with her and she stops to tell everyone that we are her grandkids, that we are precious and the best looking kids she has ever seen. She makes sure that we never leave without a kiss and she tells us how much she loves us.
This is why I walk in the Bloomington-Normal Walk to End Alzheimer’s. I walk in the hopes that we can find a cure and I won’t have to watch any more grandparents, parents, sisters or brothers forget me or the times we shared. I walk to raise awareness in the hopes that someday we won’t have to watch our loved ones disappear before our eyes.
Volunteers needed for Walk to End Alzheimer’s
Walk to End Alzheimer’s would not be possible without the support of our fantastic volunteers. We count on the invaluable contribution of time and energy of our dedicated volunteers to make the event a success. Sign up today and let us know how you’d like to help!
http://www.optimumseniorcare.com/services/alzheimerscare.php
Enter for a chance to be Seth Rogen’s date to Hilarity for Charity
Alzheimer’s Association Champions Lauren Miller Rogen and Seth Rogen continue to use hope and humor to inspire change and raise awareness of Alzheimer’s disease among millennials with their fifth annual Hilarity for Charity Variety Show, taking place Oct. 15 in Los Angeles. You can enter for a chance to be Seth’s date to this Halloween-themed event. Hilarity for Charity was established in partnership with the Alzheimer’s Association.
http://www.optimumseniorcare.com/services/alzheimerscare.php