Jul 182017
 

There are boxes stacked neatly in my parents’ apartment, evidence that they are truly going through with their move in two months to Beer Sheva. There’s so much left to pack—a life’s collection—that I suggested that my dad start early and work in short shifts. And with another heat wave gripping Israel, today during my visit, we decided to stay inside and clear out some of the cupboards.

Our rule of thumb: if an item hasn’t been used in more than a year, it should probably not be saved. That goes for the hundreds of music tapes and the assortment of belts and bags and other random objects, some of which my dad can’t part with because they have sentimental value. Mom no longer has an attachment to things; the memories associated with most of her possessions are lost.

Making disorder out of her ordered space, however, is difficult for Mom. I can’t count the number of times she started swearing at me for messing around with her belongings.

Just as we had emptied three cupboards in the spare bedroom, one filled with toys and games my kids used to play with when they were little, Mom decided she needed to go out. So, despite the heat, Mom and I left the air conditioned apartment and walked to the neighboring park. We found a bench in the shade and watched the kids running around. We even swung on a swing together!

As we were heading back, a woman recognized Mom and stopped to say hello. That was exactly what we needed. Mom opened up and became her charming, complimentary self. She even told the woman that the ratty house dress she was wearing had beautiful colors and looked lovely on her.

When we returned to the apartment, Mom was more passive. As we sorted and packed, she gladly joined me in singing some of our standard repertoire.

And then it was time to head home. I am left with a sense of not having done enough with Mom today to lift her above the disease and allow her to connect with the world around her. I only have those few hours with her each week, and I try to engage with her as much as possible. She didn’t smile or laugh enough, though there were certain moments of pure joy. I must be satisfied with what there is. In two more months, with their move next door, our lives will be thrown into confusion. What emerges, and how we spend time together, will change completely. It is a challenge I embrace, even if with trepidation.

I often think that challenges in my day-to-day life are reflected in my kitchen. I love to try new dishes, push myself to make something that is not on our standard menu. This week, for the first time, I made stuffed onions. They are a little patchkied—messy—as my grandmother might say, but worth the effort.

Stuffed Onions

Middle Eastern cooks stuff anything they can get their hands on—tomatoes, squash, artichoke bottoms, even onions. This recipe has several stages, but it is not difficult to pull it all together. The combination of spices and the sweet lemony sauce were a big hit.

Stuffing:

1 pound ground beef
3 large onions
2-3 cloves garlic, crushed
2 carrots, grated
1 medium onion, grated
¼ cup parsley, chopped
1½ teaspoons cumin
½ teaspoon cinnamon
Salt and pepper to taste

Sauce:

2 tablespoons date honey (silan)
1 tablespoon teriyaki sauce
4 teaspoons lemon juice
5 cloves garlic, chopped

Directions:

  1. Cut a triangular wedge out of the side of the three large onions. This will allow for easy peeling of the onion’s layers. Blanche by placing in boiling water for 10 minutes. Remove and let cool.

  2. In a large bowl, combine ground beef with garlic, grated vegetables and spices.

  3. Carefully peel onion layers from cooled onion. (Notice how they fold in on themselves.)

  4. Using a tablespoon, spoon the ground beef mixture into onion layers, close them and place in a baking dish.

  5. Combine sauce ingredients and pour over stuffed onions.

  6. Cover pan and cook for up to 2 hours at 350° until onions are soft and cooked through.

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 MagazineHer 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 CollegeMiriam is a 20+-year resident of Israel and a mother of three.

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Jul 122017
 

Progressive and eventually debilitating, Alzheimer’s disease is devastating. Just ask anyone who knows or loves someone with the disease. Sadly, that includes many of us.

Dom Moloney lost his grandfather, Arthur, to the disease. His wife lost her great aunt Milly, who was like a mother to her when she was younger.

Dom is from the United Kingdom and works at PRA Health Sciences, where he is getting ready to be part of a cycling event with more than 100 of his colleagues from 15 different countries.  PRA Cares: Vienna to Prague will benefit the Alzheimer’s Association, and from July 12-16, the team will travel approximately 100 kilometers (70 miles) per day. 

We spoke to Dom about the event and his personal connection to Alzheimer’s.

Can you tell us about the people you have lost to Alzheimer’s?

My grandfather, Arthur, died of vascular dementia and my wife’s great aunt Milly died of Alzheimer’s a couple of years ago. Arthur had a strong influence on me from a young age. He was a very spiritual man and had a brilliant sense of humor. He was there at many of the important moments in my life, including being my sponsor at confirmation. I have many happy memories of playing as a child at his house; holidaying together; and, after his wife died, helping him in his garden. My favorite memory was the first time he met my then girlfriend (now wife) but without looking up, assumed it was my sister. His first greeting to her was, “Hello O pregnant one…” Obviously everyone fell about laughing whilst my very slim girlfriend looked around for my very pregnant sister!

Milly looked after my wife and taught her many life skills. Milly was very mischievous and always had a cheeky glint in her eye. She was always a little batty and often played for attention by pretending to forget things. This made it all the harder when Alzheimer’s disease set in, as we never knew when she was just playing around and when she really couldn’t remember where the bathroom was in her one-bedroom flat!

What do you think is the most difficult aspect of the disease?

There are many things that make Alzheimer’s difficult.  The fact that someone you love not only doesn’t recognize you but sometimes thinks you’re coming to do them harm, or mistakes you for someone they used to love…it’s hard. One time, my grandfather saw my mother and her brother and asked where Margaret was. (Margaret was his first wife who had died a decade or more earlier.) When they broke it gently to him, he was distraught. It was only after several minutes they realized he meant my mother and just got the name wrong and hadn’t recognized her.

Physically, Alzheimer’s destroys people. Milly was never a small woman and must have weighed 15 or 16 stone when she first went to the hospital. By the end, she had literally shriveled to a 5-stone shell with paper-thin skin covering her bones. She ‘drank’ water from a toothbrush as she was too weak to use a cup.

What helped you and your family during this difficult time?

We are very fortunate to have two sons of our own who were quite young at the time Milly was in hospital. They would often come to visit with us, and the people living with Alzheimer’s and dementia in the hospital would all coo over these beautiful children.  Seeing the light that a little bit of youth brought to their day – or just someone to talk to – really cheered them up, which in turn helped us. Ultimately, we relied on each other as a family to get through the tough times.

What advice would you give someone who might first be learning that a loved one has been diagnosed with the disease?

Be patient and loving. Alzheimer’s confuses the person living with it and frustrates them enormously. Simply sitting with them and holding their hand is often enough for them. And use the periods of clarity – even when quite far gone, you may get short bursts of clarity where you’re recognized or a shared memory resurfaces. Grab these times and enjoy the moment. Be kind, be loving and cherish every moment. And when at last they pass on, rejoice that they are no longer in distress.

 Are you hopeful that we will find a cure?

Alzheimer’s is a horrific disease and I have to believe we will one day find a cure. I never wish to see anyone suffer as Milly did – or her family and friends.

Knowing your personal connection to the disease and the fact that PRA Cares: Vienna to Prague will benefit the Alzheimer’s Association, how does this cycle event take on added significance for you?

Whilst I always loved cycling as a child, I’d not done it for 25 years until last year when my sister wanted to do a crazy challenge raising money for multiple sclerosis (MS) charities. We cycled up the Col du Galibier (a French Alp on the Tour de France route), raising £2500 (more than $3200) in the process.  I loved being on the bike, out in nature and raising money for a good cause, so when the opportunity came up to cycle with PRA to raise money for Alzheimer’s, a cause that is so close to my heart, I had to do it.

Last year, when the going got tough, I remembered those people I know battling MS. This year, I’ll remember Arthur and Milly; their memory will get me up the steep hills and through the last 10 km!

 

Jul 052017
 

Charles James Ogletree, Jr. is the Jesse Climenko Professor at Harvard Law School and the founder of the school’s Charles Hamilton Houston Institute. With prolific former students such as Michelle Obama and trials under his belt for Tupac Shakur and Anita Hill, Professor Ogletree has fought for decades for justice and civil rights. He is also living with Alzheimer’s disease, having disclosed his diagnosis in July 2016. We spoke to him about his experiences and his Alzheimer’s story.

“I’ve learned that every person’s Alzheimer’s journey is different – not one is the same,” the professor reflects. “It’s interesting, because in my case, I didn’t have any sense about what was happening to me as the disease came to light. I didn’t notice the symptoms of Alzheimer’s in myself.

I was recently at a conference where I gave a speech about the disease and I was surprised to see how many people – black, white, all nationalities and backgrounds – were there, living with the disease or taking care of someone with the disease. It truly is affecting us all, and we must all join the fight to end Alzheimer’s.”

Professor Ogletree wants to encourage African-Americans, who have a higher risk for the disease, to become educated about Alzheimer’s – and encourage people to get an early diagnosis.

“Early detection and diagnosis is key. The most important thing is to not be afraid to talk about it, because talking about it will encourage other people to open up,” he says.

“In every speech I give – sometimes on a weekly basis – I have been talking openly about my Alzheimer’s diagnosis. I’ve spoken to people with the disease and people who love someone with the disease. In a way, we are all in the same boat. It is amazing how many people are affected; something has to be done to slow this epidemic. We all have to tell our stories to keep the lines of communication open.”

Professor Ogletree has been a mentor to many, including Michelle and Barack Obama, who both attended Harvard. The support of the former President, who released a statement about Ogletree’s diagnosis last year, along with family, friends and colleagues isn’t lost on the professor.

“It is so important for people with a diagnosis to have the support of their loved ones; I think it matters very much. My son Chuck (Charles III) visits Boston to spend time with my wife Pamela and I, and my daughter Rashida will be getting a visit from us soon in her new home. Every Thanksgiving, Pamela and I spend the first part of the holiday at home and then travel to my son; every Christmas, we do the same with our daughter. I have a good friend from Mississippi who has been very supportive, along with his wife. Having their support while I continue to fight this disease means the world to me.”

When it comes to his own journey, exercise and keeping busy with activities are an important part of his daily routine.

“My wife is trying to keep up with me! I like to run – running is definitely very important to me. I enjoy attending Harvard basketball games, even if they didn’t quite make the tournament this year! I also stay involved with the community by attending lunch and dinner social events. I feel that it’s important for me to keep active, mentally and physically.”

Public service and seeking justice have been a huge part of Professor Ogletree’s background, and he has begun a new fight for reason. “I talk about Alzheimer’s disease everywhere I go; I don’t shy away from it. The people I have spoken to are very responsive to my message of continuing to fight – and hope – and I find triumph in that.”

The professor continues to believe education and lifelong learning are vital, both for those living with dementia and those who are not.

After he defended Tupac Shakur in court in the turbulent year of 1993, Tupac’s mother asked Ogletree to try and convince Tupac to apply to Harvard. “It was so interesting to have that experience. Tupac was a talented guy who could have taken a Harvard education very far. In the end, he decided it was not for him. These days, I still work with students who apply to and attend Harvard. Educating every child we can is key, because that key can turn a life in the right direction. I try to inspire new generations and show them how far an education can take them. It fills me with joy when my students embrace their education; their hard work shows in their successes. They – and I – don’t take our time together for granted.”

As for his personal view of his impact on society, Professor Ogletree is very clear about what his legacy will be. “I want to be known as the guy who was always concerned about justice and equality. Nothing more, nothing less.”

There is no doubt he will be, and given how much he is talking openly about his Alzheimer’s diagnosis – and educating others about his own disease experience – he hopes he will be known for that as well. “My next fight has begun. I am ready.”

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Jun 302017
 

Difficulty understanding new technologies at work. Lack of focus while driving. Forgetting to pay bills.

Flash back roughly 10 years, when Joey Daley began to notice irregularities in his mother’s behavior. She ended up having to quit her job, and things only went downhill from there.

She was in and out of doctors’ offices; some doctors would say her behavior was the effects of medication, but others would say it was depression. Dementia was never even brought up as a possibility until three years ago, when she was finally diagnosed with dementia with Lewy bodies.

After her diagnosis, the pursuit was on. The pursuit to raise awareness about dementia and Alzheimer’s disease. The pursuit to corral government funding. The pursuit for a son, the 45-year-old caregiver, to ensure his mom, the 67-year-old woman living with dementia, continued to experience some of life’s favorite offerings so often taken for granted. Things like grabbing a chocolate milkshake, taking a trip to the racetrack  or enjoying a home-cooked meal in the company of family.

For the past five months, Joey Daley has been documenting his and his mother’s journey with dementia in a twice-weekly video series and started a movement – “Molly’s Movement.”

To date, Joey has posted 47 video episodes, but Episode #6 – the first day Molly ever failed to recognize her only son, followed by Joey’s heart-wrenching, on-camera breakdown – caught the world’s attention. That episode alone has been viewed over 2.2 million times. Collectively, the series of videos has been watched over 80 million times, having gone viral in more than a dozen countries. Recently, Joey  chronicled his and Molly’s painstaking journey with us.

What an inspiring yet monumental undertaking. Do you have a team that helps you do all the behind-the-scenes work?

No, I don’t. To be honest, things are starting to get exhausting. Here I am with a video series that documents my mother’s slow descent into dementia. At the same time, I’ve created a support group that I feel very responsible for.

I created this movement, have a business, a family, everyday life. My mindset has always been: When you do things, go full-force. I’ve always thought I was unstoppable. I’m not going to quit, but it can be difficult. My ultimate goal is to help secure a steady flow of government funding for research, because that’s what I think it’s going to take, and that’s what’s going to keep me going.

Talk about your journey together, mother and son.

Some people think I just started picking her up and hanging out, but what I’m doing now (publicly with the video series) is exactly what we were doing before I started the movement. I’d pick her up to go out to eat, watch horse races, bring her to visit my house – some kind of activity that she enjoys. Then one day I asked her, “Would you want to do a video series and help other people understand more about dementia?” And her exact words were, “Well, yeah, if it’s going to help people!”

When she said that, I said, “Let’s do it.” I grabbed my GoPro camera and just started recording our time together.

You’ve posted 47 videos to date. How often do you try to produce a new one?

I release a new video every Thursday and Saturday. I don’t know if I’ll ever slow down from that schedule; it really depends on my mom’s condition. I’m not an expert on dementia and I never tell people that I am, so maybe they can learn what not to do with the video series; that was the whole goal – to create awareness in a different way and be honest and open about how dementia impacts both those who live with it and their caregivers.

What triggered you to launch “Molly’s Movement?”

The group (of video-series followers) moved me towards it. I had had people reach out to me wanting to get involved in the production, but I didn’t want the project to move away from what I had envisioned. I wanted my mother to have her own movement and for us to do things to give back the way I thought my mom would – and that’s giving back to caregivers. It just kind of evolved into everything it is today.

What was your reaction to the enormous response the videos generated?

After it went viral, I knew it would mean I would be on the phone non-stop talking to reporters and radio stations and anyone else interested in the story. It’s bittersweet. I’m excited that my mother is not going to die in vain, yet she’s still dying. It’s hard to get excited.

Why did you make it your personal mission to advocate for the cause vs. throwing your support behind another movement like so many have with yours?

I wanted to do what I felt was best for my mother and how she would have done things if she was in my position. She’s always given back in different, unique ways. It is unbelievable to me how she talks about her friends; even in her current situation grappling with this disease, she is still always thinking about the well-being of others. She even worries about what will happen to me when she dies. That is just the person she is – and I want to honor that.

 

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Jun 272017
 

On more than one occasion, when I was a young boy, my grandmother roamed the streets of Washington, D.C. at night. One night she was picked up by the police, and ultimately placed in a home with others “like her.” Back then, these types of events were attributed to old age and senility. 

Today, my mother is living with Alzheimer’s disease – just like my aunt and grandmother. And at the age of 66, I am living with mild cognitive impairment (MCI).

Looking back, I realize that I had had symptoms for many years. There was the time I bought multiple cartons of milk in one shopping trip. Often, I’d leave my phone on top of my car and drive away. I started forgetting social dates and critical appointments.

I spent 20 years as an international flight attendant, with a revolving door of co-workers, so the seriousness of these events was often dismissed by people as carelessness, or worse, went unnoticed. I lived alone, and I didn’t have family and friends around often enough to notice any changes in my daily life. And because of my lifestyle, it was so difficult for me to come to grips with the possibility of losing my independence.

Life changed once I reached out to the Alzheimer’s Association for information and support; I never could have imagined how life-changing that one phone call would be! In the Association, I found all I was looking for and more, including the inspiration to share my voice.

Today, I focus on maintaining my independence as much as possible, and I’ve found creative and safe ways to continue enjoying some of my favorite activities. While I am retired from a long career of serving others, I now serve an even greater purpose in life: I have “re-imagined” myself as an Alzheimer’s advocate, serving as a member of the Association’s National Early-Stage Advisory Group for the past year.

When speaking openly about my diagnosis, the first response I typically receive is: “I’m so sorry!” Understandably, people don’t know what to say. But my advice is this: “Don’t say anything – just listen.” Listen to my thoughts, concerns and funny stories. Listen to my hopes and fears. Listen to how this diagnosis has affected me — for worse and for better. Keep listening, and keep sharing stories. They truly are the most powerful weapon we have in the fight against this disease.

Even though I have MCI, I’m still living. I’m just living a new chapter of my life – and my story is not over yet.

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

 
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Jun 212017
 

The Longest Day is finally here and my excitement is at fever pitch! All of the planning and hard work has come together, and I know it will be another fun and successful event. My team is certainly ready to make the most of this special day.

Why do I fight Alzheimer’s on The Longest Day, year after year? It is because my wonderful husband Warren is courageously living with Alzheimer’s.

This is my fourth year as team captain and I’m proud to say that each year has gotten better than the year before. In my “rookie” year, my team raised $12,000, and in my second year of participation, I added an auction and raffle to my event and raised $34,000. Last year was a big year for my team, equaling a whopping $43,000 in donations!

I am proud and truly astonished by all my team has accomplished, and today is the day to celebrate. We all know that in order to find a cure and support families facing this disease, we need more funding, so every dollar we raise is a step closer. Knowing we are a part of that drives us even more!

I feel blessed to be part of the St. Louis Bridge Center, surrounded by hundreds of people that support me and care about this cause. Besides playing bridge all day and evening, we will have a silent auction and multiple raffles. There will also be t-shirts available for sale that will help all of us “go purple!” We have raised more than $25,000 so far and look forward to adding much more throughout the day today.

There are a lot of longest days in the life of a caregiver; there are days when I am exhausted and wonder how I’m going to get through this experience. But then I remember how much Warren needs me. Thankfully our family, friends and our support group are a major part of helping me cope. They help make the longest days seem a little less long – and days like today a lot more fun!

Participating in The Longest Day is my way of saying “I love you, Warren” while helping the millions of others that are living and struggling with this disease. I wish the best of luck to everyone celebrating today, no matter how you are participating. Have fun, and remember: the fight must go on!

 

About the Author: Linda Powers and her family and friends are participating in Alzheimer’s Association The Longest Day®. Linda is captain of the St. Louis Bridge Center team and plays as a member of the American Contract Bridge League (ACBL). Click here to visit Linda’s team page.

Jun 202017
 

Today we have honored the life of my aunt Jeanine Brown.

This incredible woman was responsible for my first-ever public dance moment. It was her wedding reception, there was a Soul Train dance line…and I was paired up with my grandmother.  Needless to say, it was quite the night!

Aunt Jeanine was far too young to have been taken from us by Alzheimer’s disease this past January. Not long after her passing, my wife Daisey struck up a conversation with one of our long-time dance students at the Arthur Murray Dance Studios; we learned that she was a board member of the Northern California and Northern Nevada Chapter of the Alzheimer’s Association. She told us about how the Association is leading the fight to end Alzheimer’s.

As business owners, making a donation here and there of course seems like the right thing to do.  But to us – with our close connection to Alzheimer’s disease – that simply didn’t feel like it was enough. We needed to do more. That is how we became participants in The Longest Day, which provides us an opportunity to do what we love – DANCE! – and raise funds and awareness to fight this disease at the same time.  It feels like the perfect match.

My wife and I are competitive about the things we’re passionate about, and we’re very passionate about The Longest Day. Being affected by the disease firsthand is why we decided to lead the charge within our dance community, and our community has responded! Today, members of our staff have each donated the proceeds from the dance classes they love to teach, and everyone around us is showing their love. We have honored Jeanine and everyone in the Arthur Murray community touched by this disease – and millions more.

The thought that people around the world are joining together today to make sure that this generation will be the last generation affected by Alzheimer’s is astounding. For our part, we have danced all types of ballroom dance to support Jeanine. While it isn’t quite the same as that Soul Train line I joined so many years ago, we are all dancing with that same kind of joy in our hearts.

This may be our first year participating in The Longest Day – but it is the first of many more to come!

About the Author:  Chris Lynam, his wife Daisey and family and friends of the Arthur Murray Dance Studio are participating in Alzheimer’s Association The Longest Day® on June 21, 2017, to raise awareness and funds for Alzheimer’s care, support and research. Chris and Daisey are captains of Team Arthur Murray in Redwood City, California. To date, the Arthur Murray group has raised over $40,000 for The Longest Day.

Jun 192017
 

Our Longest Day is spent playing golf, my husband Mickey’s favorite sport, which he grew up enjoying with his dad.

In 2013, at age 55, Mickey was diagnosed with early-onset (also known as younger-onset) Alzheimer’s disease. Our family wanted to find a way to fight back, and we wanted to include Mickey in whatever we did. A golf tournament in his honor on The Longest Day was the best – and most obvious – choice! 

Today marks our third annual “Mickey’s Mania” Golf Classic. Our friends will come from far (and not so far) to join us for a great day of fun, laughter, food and libations. Everyone is here because they know that even after Mickey is gone, there will be people who need caregiver support and resources from the Alzheimer’s Association – and we raise funds and awareness in honor of his amazing fight.

We started the day by setting up signs acknowledging our donors and supporters; as the players make their way through the 18 holes, they will see all the people who were crucial to putting this event together – and there are so many.

Players arrived bright and early at 7 a.m. to pick up their goody bags – of course wearing hats monogrammed with our “Mickey’s Mania” logo – and then enjoyed a breakfast assortment of traditional San Antonio breakfast tacos; these delicious essentials are crucial to powering through the long day ahead! As the players lined up, I reminded them that we are here to rejoice in life – making this day, The Longest Day, the best day ever.

Mickey has almost been in tears as he greets old friends he hasn’t seen in some time, along with people we don’t even know who showed up to play golf today and support the fight.  He asks: “Is this all for me?!”  I tell him yes, it is – for him and the millions of others living with Alzheimer’s disease.

As each team finishes their round, they make their way to the silent auction. Then The Kimberly Dunn Band entertains us through lunch, as they’ve done for the past two years.

Shortly, the top three teams will be awarded prizes and the winning team will be awarded the coveted monogrammed “Purple Jacket”, much in the style of the green Master’s tournament jacket given to the pros. As the players eat, our family will stop at each table, thanking everyone for coming. We are already a little sunburned, but it has all been worth it!

My favorite part of The Longest Day is driving in the golf cart and seeing each team as they play. Some people have run up to hug me or introduce themselves, and as always, this day will result in so many wonderful memories and photos. Mickey really enjoys looking at the pictures from the last two years of the event on our wall at home even though he can’t remember the celebrations. I am lucky to have my memories from each of those amazing days.

We won’t have the final numbers for few days, but our hope is always to raise more than the previous year. To date, our efforts have raised more than $50,000 for the Alzheimer’s Association; we hope that the numbers this year will exceed that, making it a record year for Mickey’s Mania.

Alzheimer’s is a cruel disease, and we wonder if Mickey will be here for next year’s tournament, which we are already in the midst of planning. As scary as that thought is, what we don’t have to wonder about is our commitment to this cause. Our family will continue to raise funds until our task is finished, and a cure is found – eradicating Alzheimer’s disease for good.

About the Author: Together with her family and friends, Jane Wakely is participating in Alzheimer’s Association The Longest Day® on June 21, 2017, to raise awareness and funds for Alzheimer’s care, support and research. You can visit Jane’s team page here.

Jun 132017
 

The fact that my dad even knows who Matt is feels quite incredible. My dad was diagnosed with early-onset Alzheimer’s disease 11 years ago, and my husband Matt came into our lives just three years ago.

What makes my heart soar is how they’ve become best buddies. My dad still lives at home with my mom, his soulmate turned full-time caregiver. While he cannot be left alone, dress himself, buckle his seatbelt, or even open the door, when Matt is around, his former self shines through. The two are downright squirrely together!

When Matt and I got engaged, we decided to have a small ceremony, because we were worried about how my dad would handle a large crowd. While wedding planning, Matt’s only requests included a canoe full of beer and a food truck parked in the driveway.  The only “must” on my list was for my dad to walk me down the aisle, and that I would wear red Converse chucks since my dad also rocked a pair when he married my mom 33 years earlier.

We invited 80 guests to the ceremony. Locked arm-in-arm with my dad – with the biggest smile I’ve ever had in my life – I remember hearing my cue: “A Thousand Years” by The Piano Guys. This was it. The big moment.

The chapel doors opened, and I locked eyes with the most handsome groom I’ve ever seen in my life. But then I felt my dad start to tense up.  Even though there was a sea of familiar faces smiling brightly at us, my dad didn’t recognize a single face.

“Dad,” I said with my biggest, reassuring smile, “do you see Matt down there?” I pointed down the aisle. “Today’s my wedding day; you just need to walk me down this aisle, and give me away to Matt. We’ve got this.”

Ever so slowly he began to shuffle down the aisle on our way to my groom. At this point, everyone was crying and smiling. The song may have repeated, but I can’t be sure.

When we got to the front of the church, I gave my dad a huge hug; we had made it!  With lots of happy tears in her eyes, my mom joined us to help my dad to his seat. Slowly, with a wink, I said: “Do you see mom? You’re going to go sit next to her while I marry this kid.” Choking back tears, my dad said, “I love you. I just love you so much!” The day was about as close to perfect as they come.

Alzheimer’s disease has taught me so much about living life to the fullest and cherishing the time I have with my family. Matt is such a special part of our family now, and I know my dad would have chosen no one else to be by our side as we battle this terrible disease. Recently, my dad asked if I was “still hanging out with that astronaut guy.” I replied, “Dad, do you mean Matt? He’s a pilot, but yes, he’s my husband, so he’s stuck with me!”

My dad comes to hang out with Matt and I every Thursday, even sleeping over, to give my mom a much-needed break. The memories I made on that milestone that was our wedding day continue to fuel my fight to find a cure…but our “Thursdate” adventures are pretty darn special too. Happy Father’s Day, Dad.

About the Author: As a member of the Minnesota-North Dakota chapter’s young professionals group and Blondes vs. Brunettes and as an Alzheimer’s Congressional Team member, Chloe Misner has been a powerful motivator for her peers in the fight to end Alzheimer’s.

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Jun 092017
 

For a while now, I’ve been worried about memory lapses. About big vacant holes where my memories should live.

For example, I completely forgot that one of my best friends growing up also worked for me at the school newspaper at Penn State. I all too often looked at my sister with blank stares when she described her memories of our family life; I just don’t remember the stories.

But I didn’t rush off for testing because I didn’t think anything could be done about my memory. And besides, I’m only in my mid-50s and that is awfully young for Alzheimer’s or dementia, isn’t it?

About a year ago, my sister saw a research study notice for a drug that has shown some success in slowing down the progression of memory loss. I took the online test and “passed” on to a telephone conversation. I “passed” that, too, and soon found myself in a medical research office in suburban New Jersey – giving lots of blood, having an EKG and being poked and prodded by a neurologist.

The key test was the RBANS (Repeatable Battery for Neuropsychological Status), a series of mini-memory and cognitive tasks. I needed to score an 85 or less to get into the trial; the research coordinator told me that, based on our conversation, she really didn’t expect me to “pass.”

She then came back with the news that I scored a 71, much lower than the number needed to qualify for the trial. Soon I was meeting with the director of research and hearing the news that more testing was needed, but that it was very likely that something serious was wrong. A subsequent PET scan confirmed it: I do indeed have younger-onset Alzheimer’s.

Am I terrified? Absolutely. More than a bit numb? Yep. Determined to do what I can for myself and for others? Even more so.

I’m told that my level of memory loss and cognitive impairment is considered mild to moderate. I’m proudly participating in a clinical trial for a drug which has shown promise in slowing the progression of the disease, particularly in folks in the early stages of Alzheimer’s.

In addition to participating in the clinical trial, I’m also joining others in the Alzheimer’s community to chronicle this disease and my fight against it. My first article appeared in today’s edition of The New York Times, and I’m hopeful that the paper will periodically publish more pieces about my experiences and my fight.

Most importantly, I’m reaching out to others with the hope that it will help me overcome the overwhelming wave of fear that sometimes hits me. For example, I was just chosen to serve on the Alzheimer’s Association National Early Stage Advisory Group, a group composed of people in the early stages of Alzheimer’s disease who help raise awareness and advocate for others living with dementia.

I want to learn as much as possible so I can become an effective advocate. Yes, I have a story to tell, but these days – to be as effective as possible – we need to share the facts and find ways to reach as many people as we can.

I’m going to fight, just like I fought for our civil liberties and the environment throughout my career. Just like I’ve fought diabetes and the clinical depression that I’ve lived with for most of my life.

At the end of the day, I hope to be the same guy I’ve been for quite some time. Perhaps I’m a bit more forgetful about some things – remembering names, handling simple math and figuring out directions are increasingly difficult – but I’m already more willing to slow down and appreciate the world around me. And that’s not such a bad thing.

About the Author: After graduating from Penn State University, Phil Gutis started at The New York Times as a copy boy and earned promotion through the clerical ranks until he was selected as a reporter trainee and then full-time reporter. After journalism, Phil transitioned into advocacy and for several decades established and managed multi-million dollar communications programs for large advocacy organizations including the Natural Resources Defense Council and the American Civil Liberties Union. Phil currently manages the Prallsville Mills, an early industrial village along the Delaware River in Stockton, NJ.

 

 

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