Omaha Walk To End Alzheimer’s

It’s walk time. Sunday September 25th will be the second time I have attended the Omaha Walk to End Alzheimer’s. I was diagnosed with Alzheimer’s in August of 2015. Last year the walk was important to me because it was a very public way to admit I had Alzheimer’s. As I stood on stage representing all those in attendance who were also diagnosed it became very real.

In the last year much has happened, my wife and I have been on TV many times telling our story. With the assistance of the Alzheimer’s Association I’ve had the opportunity to speak to many different groups. Between speaking, this blog and  appearances on TV, thousands of people have heard my story. We will continue on with the speaking engagements and this blog.

I have two lifelines as I journey through this life with Alzheimer’s, first, my wife has been supportive from the beginning. Always encouraging.

The second lifeline is Elizabeth Chentland, I am constantly inspired by her compassion, big heart, and endless support. The Omaha office of the Alzheimer’s Association is very fortunate to have such a dedicated individual. Debra and I don’t know where we would be today without Elizabeth.

This is the email I got from Elizabeth announcing the name of her team and asking me to join her.

I’ve decided it’s time to walk. To walk in honor of five people who have impacted my life and shaped my passion. Five of millions who have been impacted by Alzheimer’s.

In honor of:
1)  Ida “Lib” Herbrechtsmeier, former neighbor and long time family friend. Brilliant. Thoughtful. Lib was the first person I knew who battled AD. Deceased, age 96.

2)  Vivian A., former resident of a nursing facility I worked in. Her upbeat attitude, wide smile, and glistening eyes stole my heart at the ripe age of 16. Deceased, age 87.

3)  John Granzow, great uncle. World traveler and ice cream lover. Energetic. Positive. Deceased, age 79.

4)  Norma Okland, grandmother-in-law. Bowler extraordinare and PB&J master chef. Upbeat. Best smile. Deceased, age 81.

5)  Mike Hughbanks, partner in crime. Courageous advocate, wine lover. Genuine. Motivated. Living with AD, age 59.

You can join my team. You can donate to support me in my journey. You can fight for a cure with me.

Elizabeth and I will be walking Sunday fighting for a cure. If you want to know more about our team and the walk, here is the shortcut to our team page.

Fight For Five Homepage

Hope to see you at the walk!

Mike Hughbanks

Mom

After a diagnosis of Alzheimer’s, your perspective on things change. You wonder about the things that you could be doing if you didn’t have this disease. I was diagnosed a little over a year ago. If I didn’t have this disease, I would still be working in a job that I loved, Debra and I would continue working on our projects around the house and traveling. This disease impacts every facet of our life, every day, almost all of the time. Don’t misunderstand me, I am not complaining, I am not depressed, and I not whining about my life. All we can do is the best we can with what we have. I have a tremendous support system which brings me to the topic of my post today.

My family is very supportive, understanding, and helpful. One of my biggest fan and supporters has been my mother. Mom kept her calendar next to her computer which she kept up to date with my speaking engagements. The who,  where, and why were of much interest to Mom. She knew every detail of my Dr. appointments and the medications I was on. After an event, I had to Skype Mom with the details of how things went. On many occasions she would encourage me to continue speaking and spreading the word about this awful disease.

After Dad passed away in January, Debra and my relationship with Mom became even closer. We would Skype with Mom almost daily. We would talk about our day, what we were eating, a lot of small talk, but of interest to Mom was what I was doing with the Alzheimer’s Association. Our trips to Kansas to visit Mom were more regular. Mom missed Dad enormously and she was struggling to fill her day. She was so accustomed to caring for Dad, now that he was gone, she was in an empty house with a lot of time on her hands. It was hard for her to go from a fulltime care giver to having nothing to do. As I mentioned before in my post about Dad, I don’t know any two people more in love than my parents. I wish every family had the kind of parents that my sisters and I did.

I will never forget the Skype call I got from my sister. It was Monday July 11th. Mom was in the hospital for a routine outpatient procedure when the unimaginable happened. Something went horribly wrong and Mom did not survive the procedure. We lost Dad in January, now 6 months later, we lost Mom. Dealing with the loss of a parent is never easy, in this case, it was compounded by losing both parents in a very short window of time. I’m not sure how I would’ve handled these losses before Alzheimer’s, I just know that the grieving process now is very long. I didn’t have an immediate rush of emotions, it was more of a “Oh no, now what do we do”. Also, the questions started, “what happened?” Now my sisters and I had to deal with funeral arrangements.

Dad had cancer and we knew the eventual outcome, the cancer would win. Mom’s passing was unexpected, at least to us. Mom, however was prepared. She had a binder above her computer monitor with all of the details for her funeral down to the songs she wanted. The amount of detail she went to in preparing this guide for us was amazing. She told me the week before the procedure that she was “ready to go”. I in turn told her that we were not ready for her “to go”. She was trying to make it easier on us by having all of her arrangements preplanned.

I have been silent for the last two months because it has been very hard to deal with mom’s passing. The grieving process has taken almost two months. It seems that everything I did reminded me of Mom. If I went into the back yard to pull weeds, I would remember Mom commenting on how beautiful our yard was. Every time I went into the yard I would choke up. When I sat down at the computer, I thought of the times Skyping with Mom. On more than one occasion I went into the office at 4:00 and sat down and brought up Skype to talk to Mom, and then would remember that Mom was gone. I sat down to write this blog several times and was not able to do it, it was still too emotional.

Mom will never be forgotten, she will always be one of my biggest advocates. There is so much that I want people to know about Mom that just isn’t possible in this blog. When we Skype now with family, our cavalier Max (Mom called him her “granddog”) will come into the office waiting for Mom to whistle at him like she always used to do. He still barks if our Skype goes off late in afternoon, our appointed Skype time, he misses Mom also. We lost our Skype buddy.

As I close this post, my mindset has changed dramatically. Yes, Mom is still one of my biggest advocates, she is still with me in spirit. Now as I walk into the back yard, the memories are fond memories of Mom, not sadness. Maybe I am close to the end of the grieving process. In any regard, I still hold Mom and Dad close. They will always be inspirations to me. I also find comfort in knowing that Mom isn’t lonely any longer, she is with Dad.

I am back to speaking, and obviously writing my blog. I continue to volunteer with the Alzheimer’s Association. I am registered for the “Walk to End Alzheimer’s” here in Omaha. Our team is “Fight For Five”. Elizabeth (my Alz Association boss) and I are the team members. I have included the shortcut to our Walk Page if you are interested in our progress as a team. I will have another post shortly with more detail about the walk. It is good to be back online.

Miss you Mom.

Omaha Walk To End Alzheimer’s Mike Hughbanks Team Page

 

 

 

Mike Hughbanks May Update

Time flies by so very quickly now. At times I don’t think I have much to write on. But soon it seems my head is full of ideas to write about. What I need to do is use my dry erase board on the wall next to my computer monitor to write these ideas down so I don’t forget them. Here a few things I have been thinking about since my March update.

Our Disability Income and Health Insurance has been tweaked and seems to be going smoothly right now. We know that in future we will have to do something  for health insurance since Cobra only lasts for 18 months. Cobra is expensive at  $1250.00 a month to cover both Debra and myself.

After being approved for Social Security Disability we realized we would have to do something different with our health insurance with the obvious choice being Medicare. At least that was we thought, but we were wrong. I get asked this a lot during Q&A time when I am speaking. This is one of the craziest things we ran into. You do not qualify for Medicare for 2 years. The only way you can qualify would be if you were destitute and unable to afford insurance.

Home ownership can have it challenges especially when you live in a house that was built in 1933. Our sewer line separated at the foundation where it leaves the house and travels under the front yard out to the street where the city main line is. It is amazing what your front yard looks like with a 12 foot deep hole in the middle of it. Since the front yard was already dug up, we decided to replace the crumbling driveway and sidewalk. Where do you stop, we decided to also replace the front yard with sod and a sprinkler system. 8 weeks later, we are nearing completion. I have learned through this process that I am not a patient person. I struggle dealing with multiple things at the same time. Replacing the sewer line, driveway, sidewalk, sod, and installing a retaining wall and sprinkler system at the same time was almost too much. At the same time, our raised beds in the backyard were rotted out and we had someone building a new raised bed in the backyard. The raised bed is finished and looks great, tomatoes are growing and the seeds we planted are popping through.

Debra and I were discussing some of the interviews, speaking engagements, and meetings that I have been involved with since September of last year. Out of curiosity, I looked at my calendar and started counting. I was surprised that there were over 40. There were 9 broadcasts on local TV and a variety of other media. There were Skype and in-person interviews, speaking engagements to large groups and to smaller support groups.

April was very busy. I spoke at the Dementia Care Conference in Omaha and at the NALA/NNFA State Convention in Kearney. Several hundred were in attendance at both of these events. I was also privileged to meet Dr. Petersen from Mayo when he was speaking in Omaha.

I had a telephone interview for the National Early Stage Advisory Group. There were a lot of applicants for this very important role. I am looking forward to getting the call in June to see I will be invited to be part of this select group of 10 people.

The Growing Hope Gala in March was one of the events that was very personal for me. It was an honor to be recognized with the Courage Award at the event and given the opportunity to speak.

We are looking at a possible change in medication. I have been taking Aricept even before my diagnosis and I am struggling with the side effects. We discussed a possible change to another medication with Dr. Murman at my last appointment.

It was nice having a few weeks off after a busy March and April. I have been spending a lot of time outside working in the yard and helping with the work on the front of the house. I set two records for myself on my Fitbit going over 7 miles on two consecutive days and I never left my yard.  We are doing fruit smoothies for lunch every day we are home. Each smoothie has a lemon or a lime, apple, orange, protein powder, green tea extract, DHA (1000mg), frozen blueberries,  baby spinach or kale and finally we decide on a frozen fruit. We keep raspberries, mango, pineapple, red cherries, and strawberries in the freezer. Our diet has changed dramatically. We haven’t given up red meat completely, but have cut back significantly. Fast food has quickly become a thing of the past. We have vegetables and fruits daily.

I am doing well on my brain games. I play Mah Jong, spider or regular solitaire daily. Several times a week I do Lumosity.

It looks to be a busy summer. It is a beautiful time of year. I think I am enjoying spring more than I ever have before. It seems I have time now to stop and smell the roses. It makes you thankful for what your have. I am blessed with a loving family, a good home (with a new driveway), great neighbors and a dog who is by my side every minute I am home. Sometimes it seems we can think that life is not fair, or want to blame someone or something for the way our life is. I didn’t ask for this diagnosis but I am not running away from it either. I guess I am a fighter and I want others to know that life doesn’t end with the diagnosis.

 

 

 

 

Dr. Ronald Petersen & Mike Hughbanks Article

Dr.Petersen

Dr. Ronald Petersen, Ph.D., M.D. currently serves as the director of the Mayo Alzheimer’s Disease Research Center and the Mayo Clinic Study of Aging. In 2011, Dr. Petersen was appointed by the Secretary of Health and Human Services Kathleen Sebelius to serve as chair of the Advisory Council on Alzheimer’s Research. He has authored over 800 articles on memory disorders, aging and Alzheimer’s disease and has edited five books.

To say that Dr. Petersen is a significant force in the fight for Alzheimer’s would be a gross understatement. It was my pleasure to spend a few minutes with him.

 

Dr. Petersen was in Omaha at UNMC speaking to a group of about 200, “How Early Can We Diagnose Alzheimer’s Disease”. The lecture was part of the “Denham Harman, M.D., Ph.D. Lectureship in Biomedical Gerontology”.

Several news outlets were on hand for the lecture. The Omaha World Herald interviewed Dr. Petersen, Dr. Daniel Murman from UNMC (my doctor) and I. The shortcut to the article is below.

http://www.omaha.com/eedition/sunrise/articles/encouraging-signs-in-alzheimer-s-fight-but-cure-still-dream/article_7ba5e33d-f1ef-5ad5-bf42-816b9ca599b4.html

KETV, the Omaha ABC affiliate was also on hand, their web post is attached below.

http://www.ketv.com/news/alzheimers-cases-expected-to-double-in-the-next-three-decades/38824692

Early detection used to be difficult. Using PET scans, MRI’s and spinal taps enable physicians to make earlier diagnoses. The benefits of early diagnosis are many. People can better prepare themselves for lies ahead. There are drug trials under way that they could participate in. Support groups are available for both the diagnosed and their families. There are medications that can help also.

In my case, detection early has enabled me to go on Aricept. Evidence is starting to show that many things we do every day could help with the impact and possible slow down the progression. They jury is still out but it looks promising. We are eating a heart healthy diet. We are experimenting with the Mediterranean diet. I also make smoothies for Debra and I. I will post a few of our favorite recipes for smoothies in a future post along with some favorite Mediterranean recipes.

Early detection also can be a wake up call to our physical, mental, and emotional well-being.

Diet. According to the Centers For Disease Control’s National Center for Disease Statistics, our country suffers from being overweight or obese. The numbers are shocking and they are getting worse. Comparing 1962 to 2012, we are going the wrong direction.

Age-adjusted prevalence of overweight, obesity and extreme obesity
among adults aged 20-74 in the United States.
Survey Period Overweight Obese Extremely Obese
1960-1962 31.50% 13.40% 0.90%
2001-2002 34.40% 31.20% 5.40%
2011-2012 33.30% 35.30% 6.60%

Physical and mental activity. Staying physically active is very important. I think after diagnosis, people tend to withdraw physically, mentally, and emotionally which is not a healthy thing to do. There is evidence to show that we need to stay active physically and mentally. I realize I sound like a broken record, but this is really important. I try to walk 3 miles a day. I have a fitbit that tracks my steps, miles, stairs, and will show calories burned. Mental activity is important also. Dr. Petersen was clear to point out that he was not just talking about mind games. Staying alert and mentally active also means staying socially active and engaged.  Reading, keeping up with the news whether on TV or the internet. Mental tasks such as grocery lists or to do lists I find helpful. I try to challenge myself even though I know that I have deficits in the areas of multi-tasking and decision making.

These are just some of the reasons I think early detection is important. I have met people who are newly diagnosed that already have substantial deficits and I wish they had been diagnosed earlier. It is very important to seek medical advice if you are noticing any of the symptoms. Here is the shortcut to the Alzheimer’s Website for the 10 Warning Signs.

http://www.alz.org/alzheimers_disease_10_signs_of_alzheimers.asp

 

2016 Courage Award at the Growing Hope Gala

The Growing Hope Gala was March 19, it was a fantastic event. It was a night of wonderful food, great conversation, some surprises, and all for a good cause.

The Emcee for the evening was Ahman Green. Yes, for you Husker/Packer fans, we had the privilege of sitting at the table with Ahman Green and his wonderful mother in law. Viv Ewing and her husband Jon along with my oldest daughter Brianne and her husband Jody made our table complete. It was a good time of visiting while we enjoyed fantastic food.

One of the surprises of the evening for Debra and I was the presence of some of my work associates from DFS. Roger Fleury and his wife Pam. Roger was the President at DFS when I started in 1998. Roger was recently promoted and works for the Lauritzen organization. Jeff Focht and his wife Nora. Jeff is the President of DFS and was also working for DFS when I started 18 years ago. Jamie Fiala and her husband Pat. Jamie is the HR Manager at DFS. Mike Larsen and his wife Amy. Mike is in the IT department of DFS. Mike and Jamie were both part of the Operations Group when I was the COO. I value their friendship and support. I am very thankful to DFS for their presence at the event. Laurtizen Corporation,  First National Bank, and DFS are very supportive of this cause. Everyone in Omaha is aware of the philanthropic efforts of the Lauritzen family. Their support is deeply appreciated!

This is link article that was published in the Lincoln Journal Star.

http://journalstar.com/niche/neighborhood-extra/fun-and-fundraisers/event-raises-for-alzheimer-s-association/article_0737808a-adf5-564b-b339-855ccab6d260.html

Below is a picture of Ahman Green with the event organizers that was published in “Strictly Business”, and the story published in their magazine.

gala

The Alzheimer’s Association (www.alz.org) raised more than $83,000 during its inaugural statewide Growing Hope Gala on March 19, 2016. The Growing Hope Gala, set at the beautiful Lauritzen Gardens in Omaha, featured signature drinks and food donated by local restaurants and bars, live painting by local artists and a silent auction. The inaugural 2016 Courage Award was given to Mike Hughbanks of Omaha for helping to promote a greater understating and awareness of Alzheimer’s disease, dispelling public misperceptions and moving people to take action. Hughbanks was diagnosed with Younger Onset Alzheimer’s Disease last year at the age of 58. More than 150 people attended the event, which was also supported by a smaller satellite party in Lincoln. The Association would like to thank all of the guests and sponsors who helped to make the Gala a success, including Platinum Sponsors: CountryHouse Residences, Pen-Link, First National Bank, and High Plains Alzheimer’s Special Care Center & Prairie Meadows Special Care Center. Save the date for the Alzheimer’s Association’s 2017 Growing Hope Gala! The statewide event will travel to Nebraska Innovation Campus in Lincoln on February 11, 2017, and feature a Roaring 20s theme complete with dueling pianos. Featured in photo are Gala Co-Chairs Paul Hanson and Kali Tripp with Guest Speaker Ahman Green.

Home – Strictly Business Magazine | Lincoln

Thank you to both the Lincoln Journal Star and Strictly Business for the articles about the event.

What can you say about Lauritzen Gardens. If you are from the Omaha area and not been, you are really missing out. If you are not from the Omaha area, and have the occasion to travel here you need to make time to visit the Lauritzen Gardens. They also host events like the Gala.

I was the recipient of the inaugural 2016 Courage Award for helping to promote a greater understating and awareness of Alzheimer’s disease, dispelling public misperceptions and moving people to take action. There was a very nice video of Debra and I shown at the Gala but it is copyrighted, so I am unable to publish it on my blog or upload it to YouTube.

The award pictured below was sponsored by First National Bank.

Award

It was a wonderful evening. Debra and I want to thank everyone involved. The recognition we received gives us the courage to continue telling our story and hoping to make a difference in the fight against Alzheimer’s Disease.

 

Debra’s View Alzheimer’s Association

What continues to baffle me is why people don’t immediately go to the Alzheimer’s Organization once they get a diagnosis.  Let me tell you what happened to me.

When Mike got his diagnosis I was stunned.  I didn’t know what to do.  I didn’t know who to talk to.  I was shocked into silence.  Mike would have been the one I normally would talk to about my deepest concerns but at the time I didn’t feel he was the one person I could turn to.  He was the one with Alzheimer’s. Would I want to add to his burdens?  Unless I could get myself straight with the diagnosis I couldn’t be the help mate I wanted to be.  I wanted to be as helpful as I could possibly be.  But there was no way at that moment I could be the person I wanted to be. What on EARTH did I know about this disease?  It was a lot to take into my little brain at one time.

I’ll tell you what I knew about Alzheimer’s.  Old people get it, then they move into nursing homes and they die…alone.  I had horrible, horrible thoughts.  I did NOT want this for Mike.  I need a briefcase full of information, people I could count on for back up, I needed help!  I was NOT going to let Mike be part of any story I thought had already been written.

We soon got a call from the Nebraska Alzheimer’s office.  I thought, “Oh big deal.  What are they even going to be able to tell me that I can’t find on line?”  I was so wrong.  So, so wrong.  I really think the only reason I went to the initial appointment was that Mike had already been thinking about his potential role as a peer support volunteer for the local chapter.  He already had formulated a plan!   I had none of those thoughts at all.  All I could see was a very dismal future.

We were asked to go sit in a conference room. Which was not that big of a deal in the long run but you have no idea how many brochures were lining those walls.  And you have no idea how much that simple fact calmed me.  Information!  There were even more books that could be accessed.  If I could tell you how quickly I was calmed down I would. Did it take 10 seconds?  Did it take 3 seconds?  Yup.  It was that fast.

I stood up and started pulling things off the shelves. I had brochures and books piled up on the table. And that was the beginning.

Diane, a trained therapist came into the room and spent over an hour with us.  Her main concern was our marriage.  How were we dealing with the diagnosis?  What could she do to help?  Are there resources she could help us find?  Did we need financial planning?  Did we need additional counseling?  Did we need an attorney?  What do we do when we are stressed?  She wanted to know if there were tips she could share with us to help us cope with Alzheimer’s.  I was stunned.  I was thrilled.  I was overwhelmed.  Ultimately I was comforted in ways I didn’t expect.

This was my initial experience with the Alzheimer’s Organization.  I want to stand on a street corner and tell everyone what I know about this organization. They are wonderful.  And that is why I simply don’t understand why people delay going to see them.  I’m sure there are a number of reasons; very personal reasons and I don’t want to intrude. But, I hope whatever the reasons you have can be overcome them if you make the call.

Our communities are made up of so many people. We don’t know the half of what any one person has to deal with on a daily basis.  We are part of that community.  I want to be part of that community. That is why I will continue to speak out about Alzheimer’s, why I will campaign for more studies and a cure.  It is personal to me and it should be personal to you.  You don’t have to look very far to see how Alzheimer’s has altered some family‘s life.

The fact remains; there is no cure for Alzheimer’s. We need to educate ourselves about the process.  We need to be proactive as much as possible.  There is different material to access on line.  However, at the time of the diagnosis human contact was essential.  I will say the combination of material and the hour spent with a therapist was just what I needed to get my head together.

The Alzheimer’s organization must be on your list of to-do.  My hope is that you will find the people there to be just as helpful as I found my local chapter to be.  My hope is that you know you will not be alone during this disease.  Please help yourself with any additional education you find.

Mike Hughbanks Video Series

The video series produced by Chris and Diane Silva is now available on YouTube. I have attached the video on this post. It aired on Positive Momentum TV March 9th. It is a series on Alzheimer’s Disease, Show 1 featured an interview with a caregiver. Show 2 is an interview with me as a Person with Diagnosis.

Future shows will address Debra’s perspective, Elizabeth Chentland from the Alzheimer’s Association, and the 25 minute presentation that I give at speaking engagements. We are working on more shows along with a live call in show coming soon!

I will post the video on my blog as each episode is available.

March Update

Too much time has slipped by since my last update. Between speaking engagements, house projects, and disability issues the last several weeks just flew by.

“A New Normal” was a presentation I did in Kearney and also Grand Island in February. We were expecting 25 -30 people at each event, in the end we had over 100 at each. I am still amazed at the turnout. The event was co-sponsored by CountyHouse and the Alzheimer’s Association. It was a long but very productive day. The sponsor’s did an excellent job of organizing the events.

Kearney1

Both groups were interactive during the time of questions at the end of the presentation. I was surprised at the number of people remaining after the event was over to talk about their individual circumstances. There were some heartbreaking stories, but also words of encouragement. It was good to hear people share their appreciation for the event. Many thought the time and sharing of my life experience was of value.

I continue to be surprised at the number of people recently diagnosed and are told their next appointment is at least 6 months or possibly as long as a year away. What bothers me is that they are not told of any other resources available to them in the interim. I am going to highlight a few questions and comments that were common from the presentations in Kearney and Grand Island.

People were asking me about medications for instance. Many of those diagnosed or their caregivers have never heard of Aricept or other medications. These medications may not be a cure nor can they slow down the progression but in my case, it helps clear my thought processes. I have mistakenly commented before that Aricept is generally used only in the early stages. That is no longer the case. It is now believed that Aricept has advantages into the later stages as well. It was explained to me like a sliding scale. As the disease progresses, Aricept continues to be effective in that it will continue to help with the thought processes. I may see declines over time, but even as time goes on, I am better with Aricept than without. I was told by my Dr. to plan on taking Aricept the rest of my life.

Tests was another question that was frequently asked. I am continually surprised at the lack of information about neuropsychological exams, spinal taps, genetic tests, and even brief memory and cognitive tests. Many people are admitting now they had signs of Alzheimer’s many years before their official diagnosis. They were not offered or the tests simply were not available in their area. I can’t stress enough how important it is to insist on testing if you feel that there is something wrong. We have to take control of our health care. “Among all people living with Alzheimer’s disease, only about half have ever been diagnosed. “(Alz.org).

Those of us who live in larger metropolitan areas should feel fortunate that we have the medical specialties close by. Many do not have local memory clinics, gerontologists or neurologist. Out of the hundreds of people I have encountered over the last 5 months, I can count on one hand the number of people that have had a spinal tap or a Neuropsychological exam.

Social Justice is the view that everyone deserves equal economic, political, and social rights and opportunities. I think this a noble thought and idea, but we are not there yet. This is one of the causes that needs continued support and attention not just on the local level, but also at the state and national level.

An advocate is someone who speaks on behalf of a cause. We can all be advocates for Alzheimer’s Disease and other dementia’s. You don’t have to be a person with the diagnosis or their caregiver to be an advocate.

kearney2