Barb’s Buzz – Be Hopeful and Thankful

Since I broke my right wrist from a slip and fall incident on a slippery, snow covered sidewalk last winter, I am afraid to venture out in the winter. I know that I will remember to be more cautious.  But I think about myself and my ability to navigate safely as Alzheimer’s disease progresses.

I am hopeful that with research our medical community can continue to develop medicines to keep those of us with Alzheimer’s and related dementias alert and help keep our ability to remember. The medical research community welcomes people to participate in studies.  I have been a research participant since I was diagnosed with Alzheimer’s disease. I am currently enrolled in a longitudinal study through the Alzheimers Disease Research Center at University of Wisconsin-Madison. I feel like I am contributing to the research to find a cure for Alzheimer’s disease.

I must admit I am thankful for climate warming this winter. The roads and sidewalks are easier to navigate. They are safer for driving and walking. The meetings and Memories in the Making art classes at the Alzheimer’s Association provide a safe haven to share stories, be creative and develop friendships for those with Alzheimer’s disease and their partners. The art therapy classes at Donna Lexa Art Studio gives those with Alzheimer’s disease and other disabilities a safe haven to socialize and be creative with the gentle guidance and teaching art forms with caring art therapists.

The friendships that my husband and I have made are an added gift to our lives.  All I can say is that the Alzheimer’s Association is a safe haven. We are so grateful for the support and the friendships we have made.  I feel hopeful and thankful and gratified for the support.

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~Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s~

For more information on how to participate in Alzheimer’s research and clinical trials, visit TrialMatch

Barb’s Buzz – The Little Things That Make the New Year Bright

As my husband Dan and I were putting some of our Christmas gifts away in bedroom drawers, we came across something that our grandson thought he had he lost.  It was the baseball glove that our grandson was wearing when we were playing ball with him at a local park.

My memory is a bit fuzzy.  When it was time to take our grandson back to  his family  in Chicago, we couldn’t find the baseball glove.  We looked all over the house for it.  No baseball glove.

We went back to the park to look for it.  No glove.  So we decided to buy him a new glove.

As Dan was looking for something in one of the drawers in a guest bedroom , lo and behold he found our grandson Ian’s original baseball glove that we thought was lost forever.  We were amazed  and smiled at each other shaking our heads.   So we decided to send him his original baseball glove to him in Richmond, Virginia where his family was celebrating Christmas with his other grandparents.   He will be surprised as we were when what was lost was found.

I have a little prayer that my father James Anthony taught me when I would lose things.  It goes like this:

James Anthony.

James Anthony.

What ever is lost.

Let it be found.

And that’s my little gift to you, my readers.  May our doctors find a cure or medications to keep those with Alzheimer’s disease going so we can find our gift of knowing what to say, what to do, and where to find things once again.  :)

Happy New Year.

Barb in New York

~Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s disease.~

Barb’s Buzz – Relax and Enjoy the Holidays

The season has begun.

As my husband and I are driving along in the car, we are noticing more and more Christmas decorations and displays among the houses we pass.  The stores are already filled with holiday shoppers and festive displays.  Soon we will hear bell ringers and Christmas carolers. We enjoy viewing the elaborate light  displays on houses as we drive by or watching children as they visit Santa at our favorite department stores.

Our Christmas gathering changes each year depending on those who will be traveling or staying in town.  This year we have a brand new grand-niece who was born recently.  She is a gift to all of us in the family.

Enjoy everything you do in preparation for the holidays-baking and frosting cookies, finding that special gift for someone, listening to the bell ringers, or watching the excitement of youngsters playing in the snow. Take time to examine a snow flake-each one is different.  Attend a church service and sing, hang a wreath on your front door, put up and decorate a Christmas tree, listen to the carolers, see the smiles on children’s faces, attend Christmas programs at schools or churches. Get together with friends to view the holiday lights. Go and see a movie.

Get into the spirit of the season.  Open up your hearts.  Donate to a cause. Sing along to the holiday music on your favorite radio station.  Build a Snow Man.

Even though Alzheimer’s disease  makes me a bit tired,  I sip that second cup of coffee or hot chocolate, and take time to chat with a friend or family member on the phone or visit a shut in. Put a smile on your face. It is time to enjoy the season.

~ Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s disease ~

Barb and Dan Johnson are surrounded by their grandchildren, Kipton, Ian and Sophia

Barb and Dan Johnson are surrounded by their grandchildren, Kipton, Ian and Sophia

Barb’s Buzz – Being Grateful & Living with Alzheimer’s

As Halloween takes its last bow, we say goodbye to the jack-o’-lanterns, ghosts, witches and costumed trick or treaters that have both “scared” us and endeared us over the last month.  I just put away the leftover Trick or Treat candy and my witch costume and now I am beginning to decorate and plan my family’s Thanksgiving Day feast.

Hosting Thanksgiving dinner in our home has been an annual tradition for my husband Dan and me.  Preparing the meal is a large task in and of itself.  Purchasing the big bird, along with ingredients for the stuffing, sides and desert must be done first.  Next is rinsing the cavity, stuffing, and then seasoning and basting as the turkey is roasting.  My favorite part of this process is the aroma that stirs up my appetite.

Every one of the guests contribute by  bringing a side dish or dessert  like pumpkin, apple, or cherry pie, lemon bars, brownies or cookies in the shape of pumpkins or leaves.

Now that I have Alzheimer’s disease I appreciate receiving help from my “staff” including our son Michael  and daughter- in- law, Kelly,  our daughter Julie and son- in-law Joe, my nephew Todd and his girl friend Annie,  and my niece Marin and her husband Dave, and their daughters.

My husband Dan will take over this year as head chef. He will help me with putting the turkey in the oven, basting, taking it out of the oven and carving.  He has always carved the turkey and says the prayer of Thanksgiving before the feast.   Everyone seems to pitch in when it’s time to clear the plates and load the dishwasher and clean and dry the large pans by hand.  I appreciate all the helping hands.

I realize since my diagnosis with Alzheimer’s disease that my stamina is much shorter now.  I feel the need to rest more often to regain my energy.   As the saying goes, I am not exactly the same person I was before the disease. Reduced stamina also affects the majority of the human race. It is just basically an aging process – getting older.  I call it my “new normal”.

I am grateful especially at Thanksgiving time for basic good health, good doctors, family and friends and the relationships that both my husband and I have developed in our Alzheimer’s group.  These caring relationships are like family and I am grateful to have them and the Alzheimer’s Association to give us support, encouragement and guidance as we travel this journey together. It is so important to be able to cope day each day, living with the disease, knowing that we have people who care about our well being.

Before I close, I want to share a story that Dan and I experienced recently.  We celebrated our 44th wedding anniversary a few days ago.  We had dinner with two couples from our Alzheimer’s group at the Country Springs Hotel in Waukesha. Dan and I then went on to a symphony orchestra concert at the Performing Arts Center in Milwaukee.  I was so focused on watching the musicians magically play their instruments.  The grand climax featured a well known violinist.  He was so talented that the minute he began playing, my heart stopped beating.  He was absolutely wonderful.   I began to tear up when I heard his story.  He was burned in a terrible house fire.  He recovered after receiving painful plastic surgery, and now lives and plays more beautifully than ever.  He returned to the lime light to share his beautiful music with us.

Experiencing his music and knowing his story helps me accept my Alzheimer’s diagnosis and live with this disease.   Yes, I am grateful!   Live brave and strong as long as you possibly can. You owe it to yourself and your loved ones.  Be yourself – Just do it!

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~ Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s ~

Barb’s Buzz – It Was a New York City Minute

I must admit that Alzheimer`s disease is not the best traveling partner.  However, I have it, so it travels with me wherever I go.

When my husband, Dan, and I decided to take a trip to New York City recently, we contacted Dan`s brother and his partner, and Dan`s cousin and his wife to be our travel companions.  New York was a bit daunting for me.  The pace is fast. It made me feel more comfortable, though, to be in the company of five close relatives.  Let`s call our little group the “Traveling Johnsons”.

We stayed at a nice hotel in a great neighborhood near the Flatiron Building and Madison Square Park. It was very convenient to walk around or to take the subway.  We also took a three hour boat tour around Manhattan. Our tour guide was a local actor.  He was interesting, clever and funny, all rolled up in one. He had long hair flowing that extended to his waist.  He was the best tour guide I ever heard.

We knew that Manhattan is loaded with celebrities, but we got unusually lucky, being in the right place at the right time.  We not only saw Pope Francis ride by near the World Trade Center, but also President Obama over on 53rd Street and Lexington Avenue.

One of my favorite evenings was going to Dizzy`s Club, a jazz club where we heard the very talented Bryan Carter Quintet. Dizzy’s is located in Columbus Circle, across from Central Park.

The travels were very tiring for me, especially the long delay we had at the airport as we were starting our journey home.  But, the time I spent with Dan and close family and sharing these remarkable experiences was a gift in my lifetime that I hope I will never forget.
You only live once, right?

Barb in New York

~ Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s disease.

Walk with Me with Purpose in Mind

The purpose of the Walk to End Alzheimer’s is to raise awareness of Alzheimer’s disease.   The disease attacks a person’s brain.  It slowly erases memories.  The disease can be genetic, but is not in most cases.  Anyone can be affected by Alzheimer’s.

Individuals with Alzheimer’s begin forgetting daily routines, and how to perform everyday activities like walking, showering, washing your hair, going to the bathroom, getting dressed, talking, sitting, and standing.  They lose their ability to lead a normal life.  They not only are robbed of their self sufficiency, they often must surrender their dignity.    This makes me very sad.

Care partners need lots of extra help to care for their loved one who is no longer independent.  Alzheimer’s has affected many women in my family including myself, my maternal grandmother, my mother, and her sister, my Aunt Anita.  Anita is still living and resides at Luther Manor.  She can no longer talk, feed, dress herself, or bathe by herself.  This makes me very sad.

These dear ones in my life are my reason to keep going and to keep living to the best of my ability.  I will fight this disease.  I will continue to support research and I will never give up hope.  I do this for my daughter, my granddaughter, my cousin whose mother still lives in silence with Alzheimer’s at the Lutheran Home, and for everyone who has been touched by this disease.

Please take part in a Walk to End Alzheimer’s event in your community.  You can locate the event nearest you at http://www.alz.org/walk  No matter where you walk, you will be on my team, and we will all be walking with this important purpose in mind – let’s put an end to Alzheimer’s disease.

Barb and Dan Johnson

Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s disease.  She and her husband Dan will be walking at the Walk to End Alzheimer’s in Waukesha and Milwaukee, Wisconsin this September.

The Purple Canoe Club

In June, our early-stage Alzheimer’s group of friends prepared to do something almost everyone loves to do in the summer.  Attend a baseball game.  It was Harlan Mueller’s idea.  He arranged for the group to get in for half price though an AARP promotion.  We bought a block of 25 tickets and with that we found out  the Milwaukee Brewers Baseball Club would identify our group on the scoreboard.

Only problem was our group didn’t have an “official” name.  The next day, Steve Schultz, another member of our group who attends with his wife Peggy, began pondering a name for our group. It was actually something he’d been thinking about for a while.

Steve’s favorite restaurant is “Duke’s Canoe Club” in Hawaii.  He really, really likes their teriyaki tofu.  Duke’s namesake is Duke Paoa Kahaimoku who won an Olympic gold swimming medal in 1912.  He brought surfing to the mainland.  The logo for the establishment incorporates three upright surfboards.

That got Steve thinking. While he didn’t see a direct connection with surfboards he really liked the idea of a canoe club. Of course, there are lots of canoe clubs around the country. Some are groups who go canoeing together. Others paddle kayaks.  But Steve was actually envisioning something more like a big canoe like the Native Americans used and later Lewis and Clark used to explore the Louisiana Purchase. Those canoes were really big and unwieldy. They were hard to paddle, in-fact almost impossible to paddle unless a number of paddlers really worked together as a team.

There it was… the perfect symbolism for our group.  A big canoe that’s hard to paddle alone, but can be paddled by a group of friends working together as a team, even allowing a paddler to rest occasionally while the others keep the vessel on course.  In our case, the friends are a group of couples living and surviving with early-stage Alzheimer’s disease.

Of course, the official color of Alzheimer’s disease is Purple.  And so the Purple Canoe Club was born.  Who knew that a baseball game and a scoreboard opportunity could create so much excitement – and an identity – for our social group.  All thanks to Steve Schultz and his dear wife, Peggy.  We are all in this journey together.  Sharing and supporting each other on this venture.

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~ Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s disease ~

Barb’s Buzz – I Just Want to be Me

Yes, I am living with Alzheimer’s disease. But nevertheless, I have a need to hold on to my sense of self worth.  I want my ideas and opinions heard.  I need to get up and out of my bed each morning, and stretch my arms. Wave them over my head, say hello to myself in the mirror, and ask myself who I want to be today.

I’ve learned it’s important to make a positive statement to yourself every day about how you view life.  I am going to think happy thoughts today. I am going to hear the birds chirping when they soar past me.

I am going to identify the birds as they are flying to their nests. Is it a Robin Red Breast, a Sparrow, a Black-capped Chickadee or a Blue Bird of Happiness? Listen to their songs. Identify the bird calls. And whistle back. They do answer you.  I know. They do make me feel alive and worthy of their songs.

Take time to watch the squirrels scamper up the trees and back down again to bring food to their hungry babies.

My husband Dan and I sat for our granddaughter recently.  She is like a little bird with her baby talk and adorable antics as she plays. Looking at her makes me so happy to be alive.  I taught her to put her toys away, and it actually felt good to be able to teach her something.  Again, that feeling of self-worth is very empowering.

I remember my aunt and my grandmother who were almost blind. They would feel my face and hear my voice and that would make their day.  My advice for anyone living with Alzheimer’s disease or another chronic health condition – do something that pleases you each day. It will help you live and feel a sense of self worth.

Today our group of friends with early-stage Alzheimer’s attended the funeral of a spouse who was the husband and caregiver to a member of our group.  He enjoyed his life as a former Pastor of the church where the funeral was held. We will miss him.  His daughters and other family members and friends will now have the responsibility to take care of our friend with Alzheimer’s who is now a widow. We will all miss him and will continue to nurture our friendship with his wife.

After we returned from the funeral, my husband and I took a walk and enjoyed identifying the birds along the way and the flowers growing in our yard.  My thoughts became consumed with playing with grandchildren and going to an annual family gathering at a lake home in the not too distant future. Life is good.

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~Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s disease ~

The Importance of Friendships

You might recall the content of my last blog piece about the deer with the broken leg.  The deer never gave up.  She not only survived through the winter, but recovered from her injury and returned to my backyard with not only a limp, but her healthy new fawn.  Her story is inspiring.

If that deer can carry on, so can I.  And what helps me carry on are the friendships that my husband Dan and I have made through the Alzheimer’s Association.  We have added them to our life time friendship list.

Now I want my readers to take the time to think about your friends. Go back in time and recall how you met them. Did you meet through mutual friends in school, at work or play? What did you like about them?  If you have lost touch with them, take the time to find them.  See what they are up to.  Care about the friendship.

I met my husband Dan when I out having fun with a co-worker named Jane.  Neither Jane nor I wanted to go out that evening. Exhausted from our work day with a very demanding boss, we both decided to stay at home. After hours went by, we changed our agenda and went out on the town.  That evening ended up to be pivotal because Jane and I met our future husbands that magical night.

I will never forget her husband tapping me on the shoulder, asking me to introduce him to her. And so I did.

Later that evening, I saw a good friend of mine. He asked me to excuse his appearance.  He wanted to introduce me to his good friend Dan Johnson. I looked up and shook Dan’s hand.  Both guys were sweaty and under dressed after playing basketball at the local YMCA.  I met Dan, my husband, that evening.

What if I had decided to stay home?  The rest is history.

So my point here is – don’t sit and mope because you have Alzheimer’s disease.  Stay active as long as you can.  Be social with your Alzheimer’s friends and your old friends. If they are genuine friends, they will be understanding.  Mine are.

Dan and I have a standing Tuesday Night Movie and Dinner with a couple who are life-long friends.   I have known Tom since grade school and Dolly since high school.  Dan was a fraternity brother of Tom’s in college. Old friends are golden.

I have been a member of a weekly Bible study for years.  It started at church and continued in each other’s homes even throughout our various moves.  The group has been so kind to me since my Alzheimer’s diagnosis.   They truly understand that sometimes I am not always sharp in the discussion and struggle to keep up and answer the questions.

What’s really important here – the socialization and the friendships are far more important than being able to answer all of the questions.  Do not let Alzheimer’s disease get in your way. Enjoy each and every day.

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~ Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s disease ~

Barb’s Buzz – Climbing the Hill

My husband Dan and I recently visited the nation’s capital as advocates for the Alzheimer’s Association. A trip to D.C. is usually exciting. Our son Michael lived in Washington, D.C. for nine and a half years. During that time we were there at least thirty times.  He and his family live in Chicago now.

On this trip, Dan and I were in the thick of the action at the National Advocacy Forum.  More than 1100 people from across the nation were in attendance.   During our time at the conference at the Marriott Hotel in the Wardman Park Area., we met Wisconsin Senators Ron Johnson and Tammy Baldwin and Congressman Jim Sensenbrenner.  Dan and I along with other advocates and representatives from the Alzheimer’s Association chapters in Wisconsin talked about what is needed to eliminate Alzheimer’s including research and care and support services.

At one of the banquets, I met Lisa Genova, the Author of “Still Alice.”  I hugged her, thanked her and told her that I wanted to read her book. My husband does not think that I should read the book. I will give his concern some thought, because I know how depressing it might be.  I know what Alzheimer’s is like. I am living with early-stage Alzheimer’s and I have many other members of my family that have been impacted too.

I have experienced the Alzheimer’s  journey with my strong and light hearted Grandmother, Dorothy,  her sister, my beautiful, talented, dear Mother, and her sister (my aunt)  who is living with Alzheimer’s disease at Luther Manor at age 91.  She is still a beautiful woman but has been silent for many years.  My cousin, Lynn, (her daughter) told me that she spoke to her recently.  Lynn was in shock and very excited about the development.

There is always hope.  That is one of the reasons we traveled to Washington, D.C.  Because we hope that someday there will be no more Alzheimer’s disease.  The three day conference was interesting, exhilarating, educational, emotional and exhausting rolled into one. I participated along with other early- stage couples from Southeastern Wisconsin.  We were there to support each other and listen to the many speeches.  It was exhausting and exciting at the same time for a person living with Alzheimer’s.

But it was well worth it to be together with our group, in force, to learn together, speak about living with Alzheimer’s, ask questions, and listen to other speakers tell their stories.

I hope our voices were heard and that there is hope for the future – through advanced research, greater awareness and one day a cure to end this devastating disease.

Roll Call of the State - Barb and Dan Johnson

 

(Dan and Barb Johnson take the stage at the 2015 Alzheimer’s Association Advocacy Forum in Washington, D.C.)