Apr 122017
 

Perhaps your grandmother had Alzheimer’s disease; maybe your mom or dad is currently living with the disease. You may be concerned that you are seeing signs of the disease in yourself or a loved one. Whatever the situation, if your family has been touched by Alzheimer’s, it is natural to be curious if a genetic test is valuable in predicting the likelihood of developing the disease. Although the cause of Alzheimer’s is still unknown, scientists have identified a number of genes that impact your risk of developing the disease.

On Thursday, April 6, the U.S. Food and Drug Administration (FDA) announced that they have approved at-home genetic testing through the 23andMe Personal Genome Service Genetic Health Risk (GHR) test, which tests for genes associated with risk of 10 diseases or conditions, including late-onset Alzheimer’s. People will be able to send 23andMe a saliva sample and receive their genetic data back through the mail.

We spoke with Keith Fargo, Ph.D., Director of Scientific Programs and Outreach at the Alzheimer’s Association, about what you need to know about this type of testing – and what the results tell (and don’t tell) you.

Two categories of genes influence whether a person develops a disease: risk genes and deterministic genes. Alzheimer’s genes have been found in both categories. Can you explain the difference between these types of genes?

Risk genes increase the likelihood of developing a disease, but do not guarantee it will happen. Deterministic genes directly cause a disease; they guarantee that anyone who inherits one will develop the disorder.

23andMe says their genetic test evaluates more than 500,000 genes and gene variants. Regarding Alzheimer’s, it evaluates whether you have the APOE-e4 Alzheimer’s risk gene. It was the first Alzheimer’s risk gene identified and remains the one with strongest impact. Having one copy of the APOE-e4 gene increases your risk – having two copies increases it more – but it is hard to say exactly how much for any individual.

There are two other variations of APOE, known as e2 and e3. The e3 variation is relatively neutral and the e2 variation may provide some protection against Alzheimer’s dementia. The newly approved test does not evaluate for these variants. Plus, there are nearly 30 other genes that have been identified to also affect risk of late-onset Alzheimer’s, but (a) those genes don’t impact risk as much as APOE-e4, and (b) this test does not evaluate for them.

There are three more genes that have misspelling in their DNA or mutations where, if you have one, it’s a virtual certainty that you will develop Alzheimer’s dementia. These are the deterministic genes. The 23andMe test does not look for these gene mutations, either.

Part of the challenge with understanding the value of the newly approved test is that many people who have APOE-e4 never experience Alzheimer’s dementia symptoms, and many who do develop the disease do not have any copies of APOE-e4.

For this reason, and because of the current lack of proven preventive strategies, the Alzheimer’s Association does not recommend genetic testing for Alzheimer’s disease for the general population. If you are concerned about Alzheimer’s disease or memory changes in yourself or a loved one, the Association encourages you to have a frank conversation about your risk with your healthcare provider.

If someone’s parent or sibling had or has Alzheimer’s, is he or she at a higher risk of developing the disease?

The fact is this: everyone is already at risk. Of people 85 and older, one third of them have Alzheimer’s dementia. And having a family history of Alzheimer’s is not necessary for someone to develop the disease.

That being said, people who have a parent, brother or sister with Alzheimer’s are more likely to develop the disease, and those who have more than one first-degree relative with the disease are at even higher risk. But, again, it is hard to say exactly how much an individual’s risk may be.

If someone is interested in having genetic testing done, what are the first steps he or she should take?

The Alzheimer’s Association suggests that you talk to a genetic counselor before deciding to take the test and, if you decide to get genetic testing for Alzheimer’s, again after you receive the results. The National Society of Genetic Counselors website provides a searchable directory to locate a counselor by location and specialty.

What are the benefits of speaking with a genetic counselor?

A genetic counselor can help you understand what the test does and does not do. He or she can help you work through making a decision that is best for you in terms of ordering the genetic testing kit. Once you get the results back, he or she can help you determine what the results really mean.

Some people think that this is a diagnostic test for Alzheimer’s, but it’s not. It is a test for the presence of one or two copies of the APOE-e4 Alzheimer’s risk gene. It’s not going to answer the question most people have, which is: “Will I get Alzheimer’s disease?” You can have two copies of APOE-e4 and never develop Alzheimer’s disease. Conversely, you can have no copies of the gene and still develop the disease.

Do you believe that taking a genetic test is a proactive step in controlling one’s health?

For some people, yes. It may give them the motivation they need to make lifestyle changes that can reduce their risk of cognitive decline as they age, and possibly even reduce their risk of dementia. In fact, there are behaviors that we should all be doing to keep our brain healthy as we age. As a starting point, the Alzheimer’s Association has research-based brain health tips that we call 10 Ways to Love Your Brain. You can find them at www.alz.org.

That said, at the Alzheimer’s Association, we are concerned that people who receive results that confirm they don’t carry APOE-e4 will assume that means they won’t develop Alzheimer’s. The truth is that these people are still at risk.

With an unsupervised at-home test, there is a real possibility of people misunderstanding their results, which could result in making misinformed decisions about their health. A genetic counselor can be helpful in making informed decisions. If you choose to take a genetic test, discuss it with a genetic counselor before and after so that you are educated about the process, the test and what the results mean. And if you are already experiencing symptoms of cognitive decline, see a healthcare professional for a full evaluation.

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Apr 042017
 

“Mom has been very belligerent this morning,” Daddy told me on the phone. I was on the last leg of my journey to their apartment, having boarded the shared taxi from Tel Aviv to Netanya. “She’s been shouting and yelling. She pushed me out of the bathroom and swore at me and called me a ‘dirty old man.’ Then she refused my help getting dressed. I wanted you to know.”

I was still about forty-five minutes away, so there was not much I could do, but I did say hi to Mom on the phone. I was hoping I could help change the situation if Mom was still in a bad mood when I arrived.

Forty minutes later, Daddy called me again. By this time I was in Netanya, walking the few blocks from the central bus station to their apartment.

“Mom was insisting she needed to go out,” he said. “We had a hard time convincing her to stay inside.”

“Oh.” I was puzzled. “Why didn’t you take her out if she was insistent?”

“I wasn’t dressed yet,” Daddy replied. “And you were on your way.”

It wasn’t worth being frustrated from afar, but I could hear the annoyed tone in my voice as I responded.

“If she wants to go walking, let her go walking,” I said. “And if you don’t want to go, you can send Sahlee (the caregiver.) Don’t use me as an excuse.”

“It’s too late now,” he said. “She’s watching her favorite Danny Kaye video, and you’ll take her out when you get here.”

Five minutes later, as I greeted her at their door, Mom was searching for her coat and bag and hat so that she could go out. She said goodbye to us as if she was heading out by herself. She was very surprised when I told her I’d go out with her.

Mom was in a good mood when we left the house, and in fact we had an agenda. I’d made a salon appointment for Mom to get her hair cut. We walked through town, stopped for a quick cup of coffee, then headed to the salon. Mom was effervescent, singing and smiling, and when she saw the beautician, she praised her many times for her excellent work. At no time was she angry or bombastic or moody. Even when we were back at her apartment and I cut her nails—which Mom begrudgingly let me do—she was happy and relatively calm.

She did say some strange, disjointed things. As we were walking home, Mom tried to tell me that people she didn’t know often recognized her in the streets. “Sometimes they see my funny face and they say hello,” she said.

“Why is your face funny?” I asked.

“It is. There’s nothing I can do about it,” she said. “But I don’t know them.”

This was wonderfully ironic as Mom constantly greets strangers with warmth and unfounded familiarity whereas the people she doesn’t recognize who say hello to her are undoubtedly friends or acquaintances. And let’s not forget that the people who care about her the most and the ones with whom she is most familiar are often addressed with anger and curses.

Later on, I called to say I’d returned home safely only to hear Daddy’s frustrated voice on the phone again. “I can’t get her to sit still and watch anything,” he said. Mom’s caregiver Sahlee was on her break, so it was up to Daddy to help her.

“Why don’t you read a book together?” I asked. “Or sing some songs. Or look at photos.”

I realized that was the difference between living with someone with Alzheimer’s 24/7 and visiting once a week. The time I spend in Netanya is fully dedicated to Mom and all her needs. There is no need to focus on other tasks and chores as I do in my own home. I don’t have to worry about anything other than entertaining Mom and giving her my undivided attention. And I can also give advice freely. I have to accept, though, that it isn’t always welcome or wanted.

With no alternatives and pangs of sympathy for my dad’s frustration, I hung up the phone and started preparing dinner.

This isn’t exactly what I made for dinner, but in honor of my mother-in-law’s visit, I indulged and made her lemon meringue pie. What do we have a lemon tree for if not for this? With Passover just a week away, and the stores already carrying Kosher for Passover products, I decided to make this pie kosher for Passover, too. There’s not much difference in the Passover recipe and the year-round recipe. I’ve listed the ingredients for the regular crust and for the Passover crust. Enjoy!

Lemon Meringue Pie
Love is a great catalyst for trying new things. As a young bride, I wanted to please my mother-in-law by making one of her favorite desserts. I hope I succeeded.

Regular Crust:
2 cups ground petite beurre cookies
½ cup brown sugar
1/3 cup oil

(These can be ground in a mixer or in a closed plastic bag with a rolling pin.)

Pesach Crust:
1 cup ground almonds
1 cup fine matza meal
½ cup brown sugar
1/3 cup oil

Filling:
1 cup sugar
4 teaspoons potato starch
1 cup fresh lemon juice
4 egg yolks
2 whole eggs
Zest of 1 lemon

Meringue:
4 egg whites
½ cup sugar
½ teaspoon vanilla
½ teaspoon lemon juice

Directions:

  1. In a small bowl, combine ground almonds, matza meal and sugar for crust. Add oil and mix until the “dough” can be pat into pie pan. Cover sides of pan to edges. Bake at 350° for 15 minutes. Let cool.

  2. Separate eggs. Place yolks in a small bowl temporarily. Let whites sit in a glass bowl.

  3. Mix sugar and potato starch for filling in a saucepan. Add lemon juice, yolks, eggs and zest. Stir until sugar and potato starch are dissolved. Turn on medium flame and continue stirring until mixture begins to thicken (may take several minutes). Bring to boil then remove from heat. Pour over cooled pie crust. Place in refrigerator until meringue is ready.

  4. Beat whites until foamy. Slowly add sugar, vanilla and lemon juice. Continue beating on high for 2 or 3 minutes until stiff peaks form.

  5. Pour meringue over pie, making sure to spread to edges of crust. Form peaks for decoration with your spatula (or spoon).

  6. Set oven to broil. Move oven rack to highest slot. Place pie on oven rack and watch carefully as top of meringue browns. Remove immediately from oven when desired effect achieved.

  7. Keep pie in refrigerator until ready to serve.

    About the Author: Miriam Green writes a weekly blog at http://www.thelostkichen.org, featuring anecdotes about her mother’s Alzheimer’s and related recipes. Her poetry has appeared in several journals, including Poet Lore, the Prose Poem Project, Ilanot Review, The Barefoot Review and Poetica Magazine. Her poem, “Mercy of a Full Womb,” won the 2014 Jewish Literary Journal’s 1st anniversary competition. She holds an M.A. in Creative Writing from Bar Ilan University and a B.A. from Oberlin College. Miriam is a 20+-year resident of Israel and a mother of three.

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Mar 152017
 

These days nearly every member of Congress is using Twitter, Facebook or Instagram on a regular basis. The era of congressional offices sending out press releases as the main way to convey the Member’s message is long gone. Now, both staff and members alike use social media to push information out immediately and interact with their constituents every single day. Because social media has become the main form of communication with most congressional offices, advocates have had to adapt the way they interact with Congress.

I’m proud to announce our newest way to engage with members of Congress, by using personalized videos. Advocates and the general public can visit alzimpact.org/engage and send a short, personalized video message directly to their members of Congress. The Alzheimer’s Impact Movement (AIM) is launching the video platform in conjunction with the 2017 Alzheimer’s Association Advocacy Forum. Advocates can use the tool to urge Congress to increase federal Alzheimer’s research funding and make fighting this disease a national priority. Please take a minute to send a video to your members of Congress and then share with your social networks.

Additionally, the Alzheimer’s Association is urging all of its advocates to help increase the impact of the 2017 Advocacy Forum by joining Thunderclap. More than 1,200 advocates will flood Capitol Hill on March 29 to ask Congress for increased research funding. Thunderclap allows all Alzheimer’s advocates who can’t attend the Forum a way to amplify our unified message through social networks like Twitter and Facebook.

With a new Congress and administration, Alzheimer’s advocates must increase awareness about this devastating disease and educate leaders about the Alzheimer’s crisis and our policy solutions. Please help the Alzheimer’s Association and AIM continue our momentum on Capitol Hill during this year’s Advocacy Forum and sign up for both alzimpact.org/engage and Thunderclap, and then share with your social networks.   

 

About the Author: John Funderburk is the Senior Director of Advocacy for the Alzheimer’s Association and Senior Field Director for the Alzheimer’s Impact Movement (AIM). John oversees the Association’s nationwide grassroots and grasstops federal and state advocacy programs and manages its national issue advocacy campaigns, along with working to build AIM’s membership base. 

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Feb 282017
 

Like most college students, Alzheimer’s wasn’t something I thought about. In fact, I knew little about the disease – other than it robbed people of their memories. Then I happened to talk to a friend of mine who worked for the Alzheimer’s Association and I thought that interning with the organization could be a chance to offer my help while gaining some work experience. It felt invigorating and empowering to think of beginning a career this way. At that time, I didn’t know Alzheimer’s intimately.

Soon after, I called my family to share the news of the internship. That is when they informed me of my grandfather’s recent diagnosis with the disease. BAM! Alzheimer’s sucker-punched me. Now I had a personal reason to fight. The day I began the internship, I simultaneously gained a clear sense of purpose for my career while coming face-to-face with Alzheimer’s. This was the day I began to lose someone I love to this insidious disease. I discovered a new form of heartbreak that millions have experienced before me – millions of people I would hope to serve.

My grandfather, a person who has helped shape my world, can no longer remember his favorite life moments – like that he was the first person to hold me as a baby. Soon, he will not recognize my face.  And I’ve learned that Alzheimer’s affects more than just the individual living with the disease. It is a devastating force that multiplies; it affects everyone caring for, or about, the person with the disease.

And everyone will try and hold on, as the person with Alzheimer’s begins to slip away into a dark and viscous abyss of amyloid plaques and tangles. The loving moments we share as humans are the moments I fight for every day. What are we if not the love and life we have together as people?

I work harder and with newfound passion so that others won’t experience the despair I now do when my beloved grandfather forgets my name. I fight to protect families like mine who watch their loved ones’ minds fade and memories disappear. I fight for those who endure a debilitating weight of stress as they watch the person they love disappear without actually dying. I fight for the precious memories we have that take a lifetime to collect that then painfully and nightmarishly vanish. I must fight, because the day I joined the Alzheimer’s Association was also the day my grandfather didn’t know he was talking to me.

My grandfather will forget, but I will fight for a generation of young people who always remember. Our generation must make Alzheimer’s disease a priority or we are doomed to inherit this disease in exponential proportions. This disease may try and knock us out – but we must all fight back.

This blog originally appeared here.

About the Author: Evan Holler is a student at the University of North Florida in Jacksonville.

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Feb 162017
 

I am a hospice and palliative care nursing assistant for people living with Alzheimer’s disease.

I have experienced countless moments of bathing and toileting people who have forgotten what toilet paper is, and countless minutes flipping through photo albums pointing out family members, picture by picture. Most importantly, I have countless special memories of holding someone’s hand as death washes over and a sort of freedom sets in.

I have been someone’s doctor, someone’s granddaughter and just about anyone other than me because the Alzheimer’s tells the person with the disease otherwise. This is why I chose to advocate. I am more than a hospice and palliative care nurse assistant. I am a voice.

There’s something special about being a voice with the Alzheimer’s Association. The passion that flows within the physical walls of the organization and its people is rejuvenating; there is an overwhelming sense of pride in knowing that you’re a part of something that really matters.

The Making of an Advocate

I had been actively volunteering at local Alzheimer’s Association events when the volunteer coordinator suggested I look into a new group called the Young Advocates. Despite the fact that I had no clue what advocacy was, I decided to attend a meeting.

At the time, I knew nothing about politics. I couldn’t tell you how a bill becomes a law, how many districts were in my state of Georgia, or who my legislators were. I didn’t know what the impact of public policy was for those living with Alzheimer’s. I just knew my personal connection to the disease drove my passion. Along the way, I have learned that that’s enough. I felt the importance of the group at that first meeting, and ended up leading the group with another attendee.

A little over two years ago we were a group of five. Today the Alzheimer’s Association Georgia Chapter Young Advocates Group consists of 25 young adults that are passionate about Alzheimer’s advocacy. Together we learn how to make the needs of a community a part of legislation. We’re learning how to better use our voices, and as we grow in numbers, we grow in wisdom and perspective.

I’ve had the pleasure of advocating at both the state and federal level. We work throughout the year, holding meetings at our representative’s local office as well as traveling annually to the annual Advocacy Forum in Washington, D.C.

This spring, I’ll be heading back to Washington, D.C., with fellow advocates for the Alzheimer’s Association Advocacy Forum. I’m not sure I can conceptualize all of the magic that happens at this annual event. From the opening roll call of the states to the national dinner, state caucus training sessions and the last day where over 1,500 advocates from across the country march to Capitol Hill in our purple sashes, sharing our stories and our vision for change, it’s beyond moving.

As a young Alzheimer’s advocate, Forum is a chance to discuss my own vision and learn about the policies other advocates are implementing in their states. It’s also an opportunity to connect with other members of the Alzheimer’s Impact Movement, the nonpartisan sister organization of the Alzheimer’s Association that is working to make Alzheimer’s a national priority.

I know that the biggest impact is made when we all come together to share in fight to end Alzheimer’s. It’s like Mother Teresa said: “I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” I alone may never see the end of Alzheimer’s disease, but together we can create ripples that will eventually lead to a world without this disease.

Every time I am with other Alzheimer’s advocates or meeting with my elected officials, I am ignited and inspired. It’s as if ending Alzheimer’s is not only possible, it’s inevitable! As advocates for the Alzheimer’s Association, we are making change happen. Each change to legislation is a win. It’s a moment where we have honored those we’re advocating for. It’s a life we’ve changed for the better. It’s one step closer to ending Alzheimer’s disease – and it’s our voices that are helping make it happen.

About the Author: Native to Atlanta, Georgia, Sarah Collett is currently pursuing her master’s degree in social work with a graduate certificate in gerontology at Georgia State University. Sarah enjoys music, reading, community organizing and serving as a volunteer advocate for the Alzheimer’s Association. 

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Jan 132017
 

My dad and I tried to take Mom’s rings off today, but we had no success. In addition to her wedding and engagement ring, Mom wears four other rings, each one tightly hugging her fingers, so much so that even with liberal amounts of lubrication, the rings do not come off. She’s been wearing them for so long that her fingers have shaped themselves around the rings.

Mom has gained weight and her fingers are bigger than they used to be. She does not have pain in her fingers from her rings; they are not cutting off circulation (yet). But they look like they might.

The problem is that Mom won’t let me or my dad attempt to remove them. If we are to avoid cutting them, we have to be able to work them off each finger a little at a time, which may hurt if not irritate the fingers. I have visions of us putting Mom under local anesthesia in order to avoid a big scene.

Do the rings really need to come off? If the answer is yes, then we can’t let our fear of Mom’s Alzheimer’s stop us from doing the job. We’ve experienced Mom’s reaction to “invasive” medical procedures like a mammogram or taking blood samples, collecting urine or getting a flu shot.

Each time we go back to the clinic, I weigh the significance of the test or procedure not only in terms of its importance to mapping Mom’s health but also to my ability to cajole, persuade, wheedle, charm or even bully Mom into doing something she is disinclined and incapable of doing. If Mom won’t pee into a cup on the first try, she may do it on the fourth or fifth. She may be willing to let me help her, or miraculously, do it independently. Perhaps bribing her with chocolate will do the trick.

Mom is occasionally aware of her weight gain. “I’m getting so fat,” she’s said as she’s dressing. The good thing is that a comment like that is soon forgotten. I’m sure most women would love to be blissfully oblivious about their appearance, or at least unselfconscious of their bodies.

Mom certainly has a higher caloric intake than she needs. And the amount of exercise she engages in—usually in the form of walking—is insufficient. That’s a bad combination for an older person whose metabolism is decreasing.

I’m reminded of a nursery rhyme from my childhood:

“Ride a cock-horse to Banbury Cross
To see a fine lady upon a white horse;
Rings on her fingers and bells on her toes,
And she shall have music wherever she goes.”

Let’s keep the music, but the rings might have to go.

A jeweler may be more kind to the rings (and fingers) than a surgeon, if we can find one who will saw them off. Imagine needing to own a saw to cut rings. Apparently, once they’ve been cut, assuming it’s on the joint of the ring, rings can be soldered back together and resized. Mom would likely miss wearing her rings, but if we do have to go through it, we’ll only be doing it once.

If eating a good chocolate dessert gets Mom out of a funk, I might even prescribe a second slice. One of our favorite winter desserts is banana cake or bread or muffins, preferably with chocolate chips. If I find myself with overripe bananas, I’ll put them in the freezer until I’ve collected enough to make this moist, flavorful recipe.

Banana Muffins

Desserts that are “diet” can also be tasty. Here’s a way to cut down on the calories without compromising on the taste. Don’t just have one, though, eat three!

3 ripe bananas, mashed
1 banana, sliced
1 cup flour
2 tablespoons sugar
1 teaspoon baking soda
1 teaspoon baking powder
¼ teaspoon salt
2 eggs
¼ cup oil
1 teaspoon cinnamon
1 teaspoon vanilla

Directions:

Beat eggs and oil then add sugar, vanilla and mashed bananas. Add dry ingredients and mix to form a consistent batter. Place one heaping tablespoon of batter into each paper cupcake holder (size #3). Place a slice of banana on top. Bake at 350 F for 15 minutes.

 

About the Author: Miriam Green writes a weekly blog at http://www.thelostkichen.org, featuring anecdotes about her mother’s Alzheimer’s and related recipes. She is currently searching for a publisher for her cookbook, The Lost Kitchen: Reflections and Recipes from an Alzheimer’s Caregiver. Her poetry has appeared in several journals, including Poet Lore, the Prose Poem Project, Ilanot Review, The Barefoot Review and Poetica Magazine. Her poem, “Mercy of a Full Womb,” won the 2014 Jewish Literary Journal’s 1st anniversary competition. She holds an M.A. in Creative Writing from Bar Ilan University and a B.A. from Oberlin College. Miriam is a 20+-year resident of Israel and a mother of three.

Dec 222016
 

The holidays have long been known as the season of joy, but how do you truly define joy? As someone living with Alzheimer’s disease and approaching my first Christmas since receiving the diagnosis, I’m beginning to define joy differently than I have in previous years.

While I previously found joy during the holidays in festive decorations, music, meals and parties, I’ve come to realize these are fleeting. This year, spending time with my family, making new memories and remembering past holidays are the activities that bring me the most contentment.

In fact, joy has become less of a feeling and more of an action for me. I actively rejoice for the blessings I have in my family and friends. I show joy through acts of love and have let go of the small stresses that would’ve stolen my happiness during previous holidays.

Some will read this and wonder how I could possibly rejoice given the circumstances of my disease and its prognosis. Alzheimer’s is a fatal disease that has no cure. It worsens over time – slowly causing problems with memory, thinking and behavior, and it will eventually rob me of my ability to respond to the world around me. The disease will ultimately take my life, typically in eight years from now.

It’s not easy to cope with the reality of Alzheimer’s, but my faith has helped me rejoice this holiday season. Alzheimer’s is part of me now, but it does not define who I am. Alzheimer’s may have changed my brain’s biology, my personality and my expressions, but I tell my family that the essence of who I am in my heart remains the same.

Further, Alzheimer’s disease has added greater purpose to my life. For example, I put my joy into action by joining an advisory group of people in the early stages of Alzheimer’s through the Alzheimer’s Association. Working with this group to raise awareness, reduce stigma and help others living with this disease has provided a great sense of resolve and happiness in every season since my diagnosis.

If you or a loved one has been diagnosed with Alzheimer’s, it’s important to never deny the disease. While it can be painful to accept, it’s important to know that you are not alone – help and support services are available through the Alzheimer’s Association.

Until there is a cure, I am determined to continue living my life with Alzheimer’s to the fullest and helping others experience joy as we navigate the challenges and changes brought about by this disease. As I look toward my first Christmas with Alzheimer’s, relishing in the love of my family, my faith and kindness from others are the pillars of my season of joy.

May you, too, find joy in every circumstance.

About the Author: Jeff Borghoff is raising awareness of Alzheimer’s disease as a member of the Alzheimer’s Association 2016 National Early-Stage Advisory Group (ESAG).


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Dec 212016
 

Alzheimer’s has touched Madison Cowan’s life more than once. Both his father and father-in-law passed away from complications of Alzheimer’s disease. Here he shares the importance of food, family memories and enjoying every moment this holiday season.

My most prominent holiday memory is of my stepmum, who I consider my mum. I recall entering her home to the aroma of fresh-baked pastries wafting through the door. She had 10 children, and although her holiday party would include nearly 25 people, she would put together every cake, pastry and pie herself. She was astounding.

She was also astounding through my father’s 12-year-struggle with Alzheimer’s.  The love and care she provided spoke to her strength and character.

My memories of holidays with my mum and dad are phenomenal. While I was growing up in London, my mum and Dad lived in the inner city of Detroit, and the time I was able to spend in the States with them over the holidays was magical. It was quite a respite to get away. When I was at home in America, all I felt was the warmth and safety that a child does. Because I had that protection at home, it was a beautiful place and time.

The recipe I associate the most with that time is my mum’s 7-Up cake. It was by no means a healthy option, but it was the lightest, most delicious thing I ever had in my life. I’m making it for the first time for my family this year, and they are holding me to that promise! She also made German shortcake, coconut layer cake, sweet potato pie, holiday rolls and pecan pie. I salivate just speaking about that time.

Dad, who loved that cake, was a big proud man who was just a shell of that when he died at the age of 78. He gave me an appreciation for life and taught me to always cherish my loved ones.

I watched my father struggle day in and day out in the 12 years that he lived with the disease, and I relate most of that time to my mum. She embraced me when she didn’t have to; she helped shape the man I became and am today. She made certain I knew my way around the kitchen and would never have to depend on anyone for a meal. That is sage advice I now impart to my own daughter.

Dad also taught me to focus on family. My daughter just received her winter report card with honors, so that is something we will celebrate. I only demand that she is a compassionate, open-minded person who respects herself and others – the educational portion is simply a bonus. It is a delight to spend two weeks off with her during this holiday season.

Although I am a shrewd businessman, when it comes to play, I am probably one of the biggest kids of all. We will spend our time in New York together cooking, shopping and watching vintage retro Christmas specials on the telly. I am well-versed in the holiday films – 1938’s “A Christmas Carol”, “The Little Drummer Boy”, “Rudolph”, “It’s a Wonderful Life”, “A Christmas Story” – all the hyper-holiday films. I especially enjoy the cheesy 1964 ‘B’ film “Santa Claus Conquers the Martians!” With all of the things going on in the world, you have to be able to escape from it all from time to time.

Tomorrow isn’t promised to any of us. The power is in the present moment, and it’s imperative to enjoy each other. Focus on the things that are most important. My policy is this: if you’re not a positive person, check it on the other side of the door. I am all about good times, warmth, happiness and food. I wish you and yours the happiest of holidays. Be kind to one another.

About Madison: Madison Cowan is a family man and chef with roots in London, Jamaica and Detroit. CEO of Madison Cowan LLC, he is an author, producer and Food Network’s Iron Chef America & Chopped Grand Champion.

 

JEAN BEAN’S 7-UP POUND CAKE

This cake has a feather-light texture and a buttery, crunchy topping.
Servings: 12 – 15

3 cups unbleached cake flour, sifted
2 cups unrefined cane sugar
1 pound unsalted butter, softened at room temperature
6 eggs, room temperature
1 teaspoon pure vanilla extract
2 teaspoons lemon extract
¾ cup 7-Up lemon soda, room temperature

Heat the oven to 375 F. Place the flour into a large mixing bowl and make a well in the center. Add the remaining ingredients and blend with an electric hand mixer until smooth (begin slowly then increase to medium speed.) DO NOT OVERMIX.

Butter and lightly dust a fluted cake tin or two to three loaf tins with flour. Carefully pour the mixture into the tins as to not pack tight and bake mid-oven for 1 hour 15 minutes or until golden brown and an inserted paring knife or cake tester comes out clean.

Another tip is to keep the oven door closed and check doneness only after the first 50 minutes. Let stand for 10 minutes and remove from tins. Serve simply with fresh seasonal berries and whipped cream.

 

CRANBERY MOSTARDA

This recipe pairs beautifully with a cheese board and holiday roasts.
Servings: Makes 1.5 quarts

2 12-ounce bags fresh cranberries
2 Bosc pears, peeled, cored and cubed
1 ½ tablespoons mustard seeds
2 teaspoons dry mustard powder
Generous pinch red chili flakes
2 pinches sea salt
2 bay leaves
2 cinnamon sticks
½ cup raw cane sugar
½ brown sugar, packed
1 cup full-bodied merlot
1 cup fresh apple cider

Combine everything together in a medium saucepan and cook over medium-high heat until boiling. Reduce heat and simmer partially covered, stirring frequently, for 25 minutes until reduced. Remove from heat and allow to cool uncovered. Store in a mason jar in the fridge until ready to use. Bring to room temperature and remove bay leaves and cinnamon sticks before serving. This can be made several days in advance.

 

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Dec 132016
 
blogfamily

Lonni, seated, with her sister Mary Allen.

I was a college professor and nurse with my doctorate in education when I started having memory problems that were concerning me. Students had complained of inconsistent homework assignments, and my son Dan noticed that I was repeating myself in our phone conversations. Then one day while giving a speech in Washington D.C. about medical ethics, I totally blanked about where I was and why I was there – in the middle of my speech. That was a major turning point.

This was in 2014, and I was living in North Dakota. My physician acknowledged that she had noticed a change in me as well, and I was referred for neuropsychological testing. After completing those tests and a follow-up evaluation at Washington University in St. Louis, my diagnosis was confirmed as mild cognitive impairment (MCI).

Before I fully adjusted to living with this disease, the news was devastating to me. I couldn’t teach any longer; teaching completely depends on your ability to think on your feet and plan – things I was no longer able to do consistently. It was also devastating for my family, my always being so bright and articulate and then suddenly having speech pattern issues. The uncertainty of where “it goes from here” was overwhelming for them, but we have all adjusted and are doing very well.

My sister Mary and my son Dan and I are a team. We have made some heavy decisions – where I was going to live (I moved in with Dan), how we were going to gauge what I could and couldn’t do, what was safe, what wasn’t. We put plans of action into place. Sometimes it’s the little things, like how Dan calls me before he leaves work so I can start dinner then and not have the stove on all day.

danson

Lonni’s son Daniel.

I didn’t realize until I received this diagnosis that this support was always there. Not many people have a single 30-year-old son who would take them in and disrupt their life for the sake of their mother, but Dan does it without any regret or resentment. I didn’t realize how steadfast he and my sister were. They both instantly rallied and started taking care of everything I needed. I am in awe of them, and eternally grateful. I can’t imagine my life or going through this without them.

I have always done most or all of the cooking on Thanksgiving, but this year everyone brought something and I cooked the turkey and dressing. I knew Christmas would be a challenge, so my sister will be hosting Christmas this year. I have to change things around a bit to accommodate the fact that I’m not functioning at the same level I was previously. It doesn’t decrease the amount of joy and love we have at Christmas – in fact, we appreciate it more. My sister’s husband is also living with dementia, so we all take advantage of the time we do have together.

This Christmas, we will open half of the gifts on Christmas Eve and half on Christmas morning. We used to celebrate Christmas mornings with our immediate family but now we try to do more things together as an extended family. We are aware that we have more limited time and a need to be together. And actually, this arrangement has made it more fun!

I miss teaching a lot; I worked really hard to get the point where I could teach full-time. It was my goal for so long and I only got to do it for three years. Having said that, I’m a person who believes you just have to adjust your sails and go where the wind is taking you, even if it’s a place you weren’t planning on traveling.

And sometimes we do get to choose where we travel. This Christmas day, after we go to my sister’s home, my son and I are going to drive the 14 hours to North Dakota to see friends I previously taught with who I haven’t seen in two years. It’s people like them, my family and the friends who have stuck by my side who remind me that I am really lucky to have the time that I have. The life I am living now is not the life I planned, but I am living it.

To everyone living with dementia: do not put pressure on yourself to be what you aren’t anymore. Don’t force yourself to be excited or joyous just because it is the holiday season. You will feel better if you relax and be yourself and do what you can do. Don’t worry about what you can’t do anymore. Don’t try to live up to other people’s expectations. If you’re the person who has always cooked all of the food for the holiday gathering, it’s okay to be the person who does just some of it now. It is much more enjoyable than trying to be what you can’t be. Celebrate the season by being you, and giving what you can. Savor the moment.

About the Author:  As an Alzheimer’s Association 2016 National Early-Stage Advisor, Lonni Schicker would like to help reduce the stigma surrounding a dementia diagnosis and raise awareness for the value of an early diagnosis. She enjoys cooking and crafting and lives in St. Louis with her son Dan.

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Nov 172016
 

My experience with Alzheimer’s started in 2001. My grandfather (my father’s father) died of what was first described to me as senility. I was in my early 20s and thought nothing of it; people in their 80s just forgot things.

It was not until 2009 or 2010 that I started to pay closer attention. We later discovered that my grandfather had had dementia. That’s when I also learned that my grandparents on my mother’s side of the family – both my grandmother and grandfather – also had a form of the disease. My living grandfather has early stage Alzheimer’s. My grandmother was diagnosed with senior dementia.williamwalk

This cause is important to me not only because my grandparents have the disease, but also because I am a financial advisor with Edward Jones, and I work with families currently living with this disease. Over the years, Edward Jones has helped many families work toward their financial goals, many of whom have dealt with Alzheimer’s disease or dementia.

It wasn’t until January 2016, when Edward Jones announced it was stepping forward to become the National Presenting Sponsor of Walk to End Alzheimer’s, that I learned about the many resources provided by the Alzheimer’s Association, including educational and outreach programs right here in my own backyard (Reno). I now actively share this information so that members of my community are aware that the Alzheimer’s Association is in local communities and here to help them!

Getting involved was surprisingly simple. When Edward Jones asked about helping with local outreach at Walk to End Alzheimer’s, I responded immediately. They put me in touch with my local Alzheimer’s Association chapter and offered me a position as a volunteer for our local Walk. In addition to helping the Alzheimer’s Association, this also gave me the opportunity to learn more about the resources available to help my grandparents and my clients.

As part of my personal commitment:

  • I’m now the mission chair for the Reno Walk to End Alzheimer’s.
  • I serve as the Edward Jones Northern Nevada regional coordinator for the Walk partnership. I’m proud of Edward Jones’ $4.7 million commitment over two years to support the mission of the Alzheimer’s Association. As part of that commitment, the Alzheimer’s Association will work with Edward Jones to create the Edward Jones Alzheimer’s Research Fund, a targeted effort to advance research toward methods of treatment, prevention and, ultimately, a cure at a quicker pace. The Alzheimer’s Association will provide education programs to associates at Edward Jones, and will work to ensure Edward Jones associates are equipped to share the resources of the Alzheimer’s Association with their clients.
  • I volunteer with the Community Foundation of Western Nevada Caregiver Support Initiative.
  • And, I volunteer with AskSara, a free contact service for individuals facing life changes, such as caring for aging parents.

Photo courtesy BMW Photography

I want my family to be safe and sound, and I want to tell my clients – many of whom have become friends – that to know that they aren’t alone when facing this disease. Thanks to what seems like fate, I’m proud to say I work with this great organization and plan to continue until there is a cure.

About the Author: William Palmer is an Edward Jones financial advisor in Reno, NV and mission chair for the Reno Walk to End Alzheimer’s.

Group photo courtesy BMW Photography.

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