2016 Early Stage Support Group Announcement Letter

Alzheimer’s Association Nebraska Chapter

October 26, 2015
RE: Early Stage / Younger Onset Support Group

I would like to share some very exciting news with you about a new Early Stage Alzheimer’s Disease Support Group here in Omaha. Let me introduce myself before we get into the details about this great opportunity.

My name is Mike Hughbanks. I was the Chief Operating Officer at Diversified Financial Services here in Omaha. DFS is the largest independent Irrigation and Agricultural Equipment Finance Company in the United States with partnerships including Valmont and Lindsay, both well-known Nebraska manufacturing companies. As one of three Executives at DFS, my main responsibilities were Human Resources, Information Technology, Customer Service, Project Management, and General Operations. Diversified Financial, along with First National Bank, are owned by the Lauritzen Family here in Omaha.

In 2011, at the age of 54, I started noticing some memory and cognitive issues and in August of 2015 was diagnosed with Younger Onset Alzheimer’s Disease at 58. I am very fortunate that we caught it early. I am now on disability since I am no longer able to perform my duties at work, but I am still able to function quite well in most circumstances. After the diagnosis, my wife and I made the decision that I needed to concentrate my efforts on getting the word out about Alzheimer’s Disease. I joined forces with the local Chapter of the Alzheimer’s Association as a volunteer.

In only a few short months, two local TV stations have interviewed me and my wife and broadcasted the spots on local TV and the Web. I have started a blog, Omalz.com, about my journey and have been amazed at some of the extremely sad stories. The blog has been very well read, some days I have over 400 hits. It is imperative that we continue on the path of awareness for not only those diagnosed with the disease, but also support for the caregivers.

This brings me back to the good news. One of the things that I would personally find valuable is to be able to meet with others with a similar recent diagnosis. This has proved extremely valuable in other cities and I am asking for your support and assistance. We need to get the word out to the recently diagnosed with Early Stage and Younger Onset of Alzheimer’s. Those interested can contact the Alzheimer’s Association at 402.502.4301, and speak with Diane Hendricks, LCSW, to learn more about their eligibility.

Early Stage, particularly Younger Onset Alzheimer’s disease is my passion and my goal is to do everything I can to raise awareness. This new support group is one way that, working together, we can make this opportunity available to those who need it most and at a time when they just received the worst possible news, the diagnosis of Alzheimer’s Disease.

Thank you for your consideration.

Mike Hughbanks | Peer Outreach Volunteer | 402-657-4202

Alzheimer’s Association | 1941 South 42nd Street, Suite 205 | Omaha, NE  68105

Phone: 402.502.4301 | Fax: 402.502.7001 | 24/7 Helpline: 800.272.3900 | www.alz.org

 

October Meetings & Nebraska Medicine Video

 

The Nebraska Medicine video is now available. I think they did a very good job putting it together. It shows Dr. Murman, my Neurologist, he is the Director of the Memory Disorders & Behavioral Neurology Program at Nebraska Medicine. We feel very fortunate to have Dr. Murman and his group in Omaha. I think sometimes we take our local medical services, in particular, the specialties for granted. We are very thankful for the level of care that we have in the Metro. Debra and I are think the world of Dr. Murman and my Case Manager Denise.

I attended the MENS (Midlands Eldercare Network) meeting Tuesday and was impressed by the level of commitment the Omaha area has to Elder Care. The group was cohesive and the meeting was very informational. Clayton Freeman, the Regional Director of Programs with the Nebraska Chapter of the Alzheimer’s Association spoke about NE LB320, a bill introduced into the NE Legislature relating to long term care and to adopt the Aging and Disability Resource Center Act. Clayton also discussed Early Stage Initiatives and Engagement and shared the results of a state wide tour relating to Alzheimer’s and the needs of those in the state.

It’s a small world, as a result of the meeting, I was able to reconnect with Kyle Johnson, a business associate formerly with a local Business Equipment Company. I was pleased to learn that Kyle now works with Oasis Senior Advisors. It is reassuring to see our young professionals passionate about Senior Care. Thank you Kyle and everyone involved with the Metro Elder Network, you are appreciated!

Thursday night Debra and I attended a Local Support Group Open House at the Hillcrest Community Education Room in Bellevue. We met a lot of wonderful people and were able to connect with several support group facilitators and was able to share my story with the group.

A very eventful week. We are working hard to start recruiting newly diagnosed people with Early Stage, particularly Younger Onset Alzheimer’s for a new Support Group that will start in January. Stay tuned for the announcement. We are finalizing the communication that will go out to the public and to health care providers. It is very exciting. More to come!

 

 

 

October Update

October started as a very busy month. Coming off the Alzheimer’s Walk in Omaha on September 27th I thought maybe I would be looking for things to do in October but that hasn’t been the case.

Long Term Disability has been a challenge to say the least. I really had no idea it was as complicated or involved as it became.  We just learned last week that it was finally approved after we filed for it on August 18. We later learned that they wouldn’t even consider it until the end of the short term period which was September 24th. We did not miss any benefits however which was good.

Nebraska Medicine Video Shoot was on October 2. We once again had a film crew in our home to tape a video spot that they will use for promotional and social media purposes for the Memory Disorder Program that works with Alzheimer’s Disease. It will be a good avenue to continue getting the word out about Early Onset Alzheimer’s.

Speaking engagements will be starting soon also. I do receive feedback from the blog and yes, I am available to speak at local civic and church events in the Omaha Metro about Alzheimer’s Disease. I do like sharing my story and answering questions about my experiences.

Wood working has always been a passion of mine, I love working with cedar. I built a 6 foot cedar obelisk in September.

Obelisk

I am currently working on a Wren house to go on top and plan to build more cedar garden furniture over the winter. We want a 10-12 foot tall Obelisk with a Wren Condo to mount on top to put in our raised beds, stay tuned.

Omaha Chapter of the Alzheimer’s Association is currently working on a program specifically for Early Stage Support. I am excited to help with this new program and think this will be very valuable to the Omaha area.

Home Alone sometimes can be fun. Debra spent last weekend in Minneapolis visiting with her daughter and family so I spent 4 days with Max playing ball and watching bad TV and movies at ear numbing volumes, it was great. I was really glad to see Debra back home safe and sound though, I missed her. Back to healthy eating and exercising.

20140903_175322Max is such a ham.

Thanks Debra for the last post on your perspective. I have memories of some of what she is referring to, but some of it I don’t recall. As you will notice, I figured out how to insert media, now I am dangerous! I struggle a little with how to manage the blog, I am hoping to be able to enhance it in the future, I am currently looking for a little outside assistance.

Mike

 

Debra’s Perspective Part 2

Mike’s last stroke in May of this year was very scary. I had never seen anything like it before. But now, looking back, I can see the stroke was the straw that broke the camel’s back. From this moment on Mike did everything he could to discern what was going on with him. He knew that all of his symptoms did not have anything to do with the stroke.

Just for a little background at this point I will mention that I had gone through a very severe heart event with my husband at the time several years ago. He lingered in a coma and eventually came out of that with severe head injuries. His attack was something I had never seen or been part of in my whole life. I really never wanted to go through something like that again. And yet it seemed as though that is what I was seeing with Mike.

Much to my surprise, Mike managed to once again come out of that stroke in good shape. He talked at length with the neurologist about his memory and the “fog” that he felt was covering his thought process. The neurologist didn’t really comment on too much at that time, rather commenting on the stroke only. I concentrated on the stroke as well. It was difficult for me to think about anything other than his stroke and how he was feeling at the time.

Mike was concentrating on other things, however. His background in HR was helping him focus on what he knew had to be done. Mike knew he could not go any longer without FMLA papers being signed. His concern was getting the FMLA papers signed so that he had job protection. Once he had those papers in hand he felt much better. He didn’t have to worry about job stability because he had added protection.

I’m not sure if I can describe the feeling that goes into the prospect of losing your job because of health. We had both lost a lot of money during the recession of 2008 and we frankly needed his income. He also had alimony to take care of with his income as well. There was a lot riding on his job. The notion that he could lose that job out of no fault of his own was frightening.

The stress Mike had been wearing the last days of being at work dissolved the moment he got home from work. The change was almost immediate. I could see the stress melting off of him. It was dramatic. It made my heart sing. I was very relieved.

I did everything I could to make him more comfortable. If he couldn’t remember what he was talking about? I finished the question and answered it for him. If he couldn’t come up with a word? I came up with the word and told him “Not to worry, I forget those things all the time.” But, frankly, it didn’t happen all that much. There were dates that didn’t immediately come to mind, maybe a name or two, but it wasn’t anything that I had experienced with other people who had Alzheimer’s. I would laugh and say, “Personally, I’m glad I’m at the age I don’t remember everything…there’s plenty I don’t want to remember!”

Mike did not like me making these comments at all. I’m sure it did diminish what he was dealing with. I thought I was helping and I wasn’t.

We had a very serious talk before going to Dr. Murman’s office. I was not to answer any of the questions for Mike unless I was specifically asked. I had to stop telling Mike it didn’t make any difference if he didn’t remember a name or a date. I had to stop trying to help him. And most especially I had to sit still and watch him fail at the doctor’s office.

The exam itself took at least two hours, maybe more. Dr. Murman spent a long time talking to Mike about what he had been experiencing. I sat still and really didn’t even look at Mike at all. I concentrated on Dr. Murman. Mike was a man on fire. He was bound and determined he was going to explain everything he had been going through. Even if something sounded odd he didn’t care. He wanted to talk about all of it. Dr. Murman would ask a question and Mike would talk and talk and talk.

Mike is a natural talker. It kind of drives me crazy when I have things to do and I want some quiet. I don’t think he can turn it off. Also, he never really stops talking while watching TV or reading a book either. He comments on everything. He asks questions about everything. Even as the plot is being revealed and he’s talking right through it he doesn’t stop. He will merely back up and watch it all over again. If at any point he feels like he isn’t going to be able to get everything out that he wants talked about he speeds up. He’s a fast talker. He’s an extravert. He’s a Type A personality. However you want to cloak it, during the appointment with Dr. Murman he was “on”.

Now that I have talked about what lead us to Mike diagnosis I am going to be spending more time talking about living with Younger Onset Alzheimer’s.

Overcoming the Alzheimer’s Stigma

Stigma is defined as ” a mark of disgrace associated with a particular circumstance, quality, or person.” Many people are hesitant to openly admit that they have a medical condition. In the case of Alzheimer’s, I think it is partially due to ignorance on the part of the public because they don’t understand it.  It is not a communicable disease, I am not going to give it to anyone. But I think it goes a lot deeper than that.

We didn’t want the diagnosis. We wanted to blame something or someone. We really didn’t want to know what we didn’t know. Even though I knew something wasn’t right, part of me didn’t want to admit that I might have “something” other than residual stroke symptoms. I think part of the fear associated with this in the case or Younger Onset is the unknown in regard to the future of your employment, family, and financial security. We were not ready for retirement mentally, socially, financially and now our career is in jeopardy.  So we ask ourselves, at what point in the future will we be committed to a long term care facility?

Diagnosis could test relationships.  My family has been extremely supportive, open and ready to help in any way. My neighbors and friends are also supportive, open and in most cases, unaffected by my diagnosis. I have to admit though, that my case is probably rare. Understand that I am a very domineering person, type A personality, driven, opinionated, and at times aggressive personally and emotionally. I didn’t give people the opportunity to not understand what I was going through.  I understand that others aren’t as comfortable talking about Alzheimer’s as I am. I feel very blessed that I have the support of family and friends that I do.

The “A” word. In some circles, Alzheimer’s is referred to as the “A” word because you can’t say it out loud. It is a horrific disease and I think we always go to the worst case scenario which in the case of Alzheimer’s is long term care ending in death and the brain withers away. Yes this does happen, however, I just visited with a nice young man today who was telling me about his father that was diagnosed with Younger Onset Alzheimer’s.  He is now in his 70’s, still independent living at home which I thought was fantastic. The really good part of the story, he was diagnosed 16 years ago! That is our hope, for me to be blogging about our path for at least the next 16 years. Remember also, that they are just beginning to understand the significance of early diagnosis in Younger Onset. We do have the visual of the very elderly in final stage which is NOT the case with Early Stage where there is mild cognitive impairment and some memory loss.

Early diagnosis is critical. The last comment I want to make is how critical it is that we put aside the stereotypes and the stigma and focus on what is important. Just the word Alzheimer’s can radiate fear. Alzheimer’s cannot be reversed, that is a fact (as of today). Research shows that early diagnosis can lead to a better quality of life. If stigma prevents people from seeking medical attention they could be losing out on support programs along with therapies including drugs that can help with the symptoms like Aricept. There are also medical trials ongoing all over the world that they might be eligible for.

We need to lose the stigma so people can open up about their medical issue. The are myths about Alzheimer’s that I will address in a future post. If you are reading this and you or a loved one are suffering from any type of memory issue or mild cognitive impairment, you need to seek medical attention. Fortunately, I didn’t wait too long, but I could’ve acted much earlier. There are support groups out there, contact your local Alzheimer’s chapter for assistance. Again, thanks for the feedback.