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.)

Barb’s Buzz – Never Give Up!

 Alzheimer’s disease can be very taxing on the brain of the individual with the disease.  I should know – I have early-stage Alzheimer’s. The disease zaps your energy, your goals, your outlook on life. It drags you down. Sometimes, it drags me way down and makes me so angry that I want to spell it out on the sidewalk and spit on it, then wash it away with a hose!

However to survive with thoughts that bring on depression we – the individuals living with Alzheimer’s –  must fight the disease.  Something I saw out my window this winter gave me the courage to stop feeling sorry for myself. I believe that God gave me courage.

When I saw the deer up on the hill in our back yard limping, I knew that she was injured. She was still there later in the day. I watched her lie down. My husband Dan and I thought that she might have sprained or broken her leg coming down the rocky, snow covered hill. She stayed there on the hill for three days.

During that time, we called the local police department.  An officer came. He was sympathetic and understanding of our feelings. We discussed the option of having him shoot her to put her out of her pain. We decided to let nature take its course.

Dan I would get up in the morning, raise the bedroom shades to see if she was still there, alive.

One morning, we got up, raised the shades. She was gone.

A month later we saw three deer walk through our yard. One deer walked with a limp. Dan and I looked at each other and said in unison “She survived!”  We hugged each other and I said “So will we.”

This is my message: Make the best of each and every day. Walk with courage and a purpose.

And maybe one day, just like the deer, we will be able to walk away too, free of Alzheimer’s disease. Let’s #ENDALZ!

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

The Fall

Seemingly, my day was off to its usual, and mostly unremarkable start. I headed out the front door to get the newspaper. The sidewalk and driveway looked clean. I took my first step, wearing boots, and then it happened. All of a sudden I slipped and fell.  As I went sailing down, I instinctively braced with my right hand. I still landed very hard on my tailbone and wrist. I sat stunned, freezing and shaking, and then crying. I knew that I was hurt pretty severely. I found my way back into the house.  Through sobs I explained to my husband Dan what had happened.  In just minutes, this average, ordinary day was turning into a no good, very bad day.

We immediately headed to the Emergency Room at Waukesha Memorial Hospital. There, they confirmed  I had suffered a bruised tailbone and a fracture in the right wrist. This new, temporary disability has now been added to my ongoing challenge of living with Alzheimer`s disease. I have found that my struggle to avoid getting depressed has become a lot more difficult since my injury.  A part of it is the physical pain. The other part, though, is that it has been a real downer to suddenly lose the ability to do any number of routine things that one takes for granted.

I know that this part will begin to get better soon, and that there is a light at the end of the tunnel for my broken wrist.  I wish I could say the same was true about Alzheimer’s disease.  But I will remain positive. My hope and prayer is that soon, with increased research and funding, we can climb to a higher pedestal –  a world without Alzheimer’s disease.

“The harder you fall, the heavier your heart; the heavier your heart, the stronger you climb; the stronger you climb, the higher your pedestal.” 
Criss Jami

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

Ringing in 2015

It’s a brand New Year.  But some things haven’t changed. O.K. I am still living with Alzheimer’s disease.  And sure – I am still looking to the New Year to give us miracle remedies and some added assurance that living with the disease is do-able with a good Doctor, a strong and caring family, support from friends and the Alzheimer’s Association.

The Alzheimer’s Association has been supportive, educational and a surprisingly great place for my husband Dan and me to form new friendships.  We are thankful to have met so many nice people on this journey. A daughter of one of the members in our Alzheimer’s Support Network opened up her home to us, to ring in the New Year. It was a thoughtful gesture and ringing in the New Year together was a lot of fun! Yes, people with Alzheimer’s disease want to socialize and have fun, just like everyone else.

This bonding with others that my husband and I are experiencing on this journey, is a gift.  We need each other…to cry, hug, laugh and cope together during the venture we are on.  I hope others all over the world who are struggling with this disease, open up their hearts and homes and make the kinds of friendships that our Alzheimer’s Association staff has encouraged and that we have been blessed with.

I hope I will see a cure for this debilitating disease in my life time.  Meantime, I am thankful for the gift of friendships that my husband, my family and I have been given.

Happy New Year!

“A real friend is one who walks in when the rest of the world walks out.”

Walter Winchell

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~ Barbara Cheek Johnson is a journalist living with Early-Stage Alzheimer’s disease. ~

Barb’s Buzz – Modifying Holiday Traditions

The holidays are fast approaching.  It can be something to look forward to or a stressful time depending on how we handle it.  Before I was diagnosed with early-stage Alzheimer’s disease, I would traditionally bake dozens of Christmas cookies, and scramble to get my shopping list in order for presents to purchase for those on my list.

My husband Dan and I would usually host Thanksgiving dinner and my sister and brother-in-law would host the Christmas Eve celebration.  Sadly my sister-in-law, brother-in-law  and my only sibling, my brother, have passed away.  So now those long-held traditions have changed.  Our niece, Marin, and her husband Dave, who were are recently married, are hosting Thanksgiving dinner this year.  I am thrilled that the younger generation is taking over Thanksgiving dinner.  It is too much for me to take on now. I will gladly bring something to add to the menu, but I`m relieved not to have to host it.

Other things have changed too.  We have given our Christmas tree to our son and his family.  It will be just the right size for their Chicago condo.  And our nephew has given us his parent’s tall Christmas tree that will look lovely in our condo that we now call home.  How nice it is to keep treasured items in the family.

When life changes and you lose loved ones, we hold on to the memories. Traditions are gifts that come from generations before us to pass on to the next generation.  Hanging stockings over the fireplace to be filled by Jolly old Saint Nick on St. Nick Eve for the kiddies to empty the next morning is one of my favorite traditions.  My creative Mom who also had Alzheimer’s made our stockings years ago, and we still use them. They are personalized with our names.

There are other holiday traditions I still enjoy.  I love getting together to form a group of singers to stroll and sing Christmas carols.  And one of my most favorite traditions is sending and receiving Christmas cards.  The cost of stamps goes up every year, so it is a costly tradition.  I am old fashioned and have already purchased my Christmas cards and will sign, stamp and send them.  I know that living with Alzheimer’s disease might prevent me from signing and sending cards in the future. So I will enjoy this tradition as long as I am able.

I know that the holidays must be simpler now.  But they will still be enjoyed.  My family and I have learned to adjust our expectations and live in the moment.  If you or your family are looking for some ideas on making the holidays simpler for individuals with Alzheimer’s and their caregivers, I would recommend taking a look at this wonderful holiday tips site from the Alzheimer’s Association.  Happy Holidays!

http://www.alz.org/care/alzheimers-dementia-holidays.asp

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

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 – A Walk of Olympic Proportions

Recently I walked in two of the seven Walk to End Alzheimer’s events in Southeastern Wisconsin.  The purpose of the walks is to raise awareness of Alzheimer’s disease and funds for research and care and support programs provided by the Alzheimer’s Association.

The speaker at the Waukesha County Walk at Frame Park in Waukesha was Mike Grassel. He was there with his wife Julie at his side.  Mike is truly an inspiration to everyone at the Association.   Mike was involved in a catastrophic automobile accident in his college years more than 25 years ago.   His life has been changed because of it.  Today Mike is 48 years old and lives with his wife Julie.  He struggles with dementia caused by the accident, yet he still continues to work with support from his employer, Walgreens in Brookfield.  Mike and Julie have two loving, supportive adult children.  The crowd was energized and hopeful as he shared his story to the 1300 people that turned out for the Waukesha Walk.

John Brandt was the speaker for the 20th annual Walk to End Alzheimer’s in Milwaukee County, hosted at Mount Mary University.  John was supported on-stage by his lovely wife Peggy and 5-time Olympic gold medalist, Bonnie Blair, who was our Celebrity Walker.  The Alzheimer’s Association is a cause that has been near and dear to Bonnie for over a decade.  Her mother also struggled with dementia.  John is now 73 and has been diagnosed with Alzheimer’s disease.  John and Peggy have three children that live out of state and as he mentioned in his speech he wishes that they lived closer to him.  John’s symptoms became noticeable approximately 4-5 years ago prior to his Alzheimer’s diagnosis in 2012. He was often forgetful and sometimes moody and wasn’t able to follow conversations.  Peggy suggested that they see a doctor. John was scared and told himself that the symptoms would go away.  He felt angry and didn’t want to hear that something might be wrong.  During a visit, his daughter noted the change in his behavior. Before she left, she encouraged her Dad to see a doctor.  John started to realize that he was having problems managing finances and performing stocking duties at Menards, where he was employed.  This time when Peggy encouraged him to see the doctor, he agreed to go. His primary care physician suggested that see a specialist in memory issues. This was a real break-through for John.

Both Mike and John are Champions of Olympic proportions.  They are not afraid to talk about living with Alzheimer’s disease and dementia, and they want to break the stigmas associated with it.  I am proud to say they are my friends.  Today, both John and Mike, and their wives are part of the early-stage support group at the Alzheimer’s Association.  John initially didn’t want to go, but now the group is like his second family.  I am part of this group and I agree… the members and support group leaders are like family to me as well. The early-stage support group is just one of the care and support programs offered by the Alzheimer’s Association for individuals living with the disease and their caregivers.  As John pointed out to more than 2500 folks that attended the Milwaukee Walk, the dollars raised by the Walk to End Alzheimer’s not only supports these wonderful programs, but also helps fund research and provides heightened awareness of the disease within the general public.

John felt honored to be a speaker at the walk and said it was an experience he will never forget.  I feel honored to write a Blog for the Alzheimer’s Association.  It is a creative way to express my feelings about living with Alzheimer’s disease, and also express my gratitude for the love and support that the Association continues to provide for us, our caregivers and family.

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

Olympic Hall of Famer, Bonnie Blair hold the microphone for John Brandt at the Walk to End Alzheimer's in Milwaukee County as wife Peggy looks on

Olympic Hall of Famer, Bonnie Blair holds the microphone for John Brandt at the Walk to End Alzheimer’s in Milwaukee County as wife Peggy looks on

2014 Walk to End Alzheimer’s

The Early Stagers are putting on their walking shoes to prepare  for the 2014 Walk to End Alzheimer’s disease.  The Milwaukee County Walk is on Saturday, October 4 at Mount Mary University campus in Milwaukee.  Registration begins at 8:30 a.m., with the promise garden ceremony at 9:40 a.m. and Walk starting at 10 a.m.

Funds are being raised to provide support and education programs and  fund research to find new medicines and  hopefully a cure to end Alzheimer’s disease.  Those of us living with the disease appreciate the monthly support meetings and discussions at the Alzheimer’s Association office in Milwaukee.

We also enjoy participating in the early stage outings at the monthly Memory Café at Panera Bread in Brookfield along with our spouses and care partners. We bond, play games, sing, are entertained and have lots of fun together.  The friendships made within the group have given us just the support we need.

Those of us living with early-stage Alzheimer’s disease, along with family and friends  will walk for a purpose  on Saturday October 4 to raise awareness and funds and bond together in the hope that someday there will be a way to end Alzheimer’s disease.  My team, Barb’s Memory Makers, along with  Brant’s Buddies will  be walking in the Milwaukee County Walk.  Thanks also to Mike and Julie Grassel’s team, Grassel’s Gang, who raised funds and  walked in the recent walk in Waukesha County.

Join us in our efforts to support our programs and end Alzheimer’s disease.  Register now at http://www.alz.org/walk

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 with their team, Barb’s Memory Makers, on October 4th.