Younger Onset of Alzheimer’s Dynamic.

Thank you for the feedback, your comments are what drives future posts. I mentioned in an early post about confusion in how people identify stages of Alzheimer’s. Younger (early) Onset as being defined as individuals under the age of 65 and is the new preferred term to eliminate confusion with Early Stage. Early Stage is defined by the medical professionals based on symptoms.

First, let me say that Alzheimer’s is a horrible disease regardless of your age or when you are diagnosed. I don’t want anyone to misread what I am saying in this post. Younger Onset has a different dynamic because, in a lot of cases, the individuals are still working and may even still have children at home to care for. I am going to mention some things that Debra and I had to deal with and in some cases are still dealing with. Before I retired, I was responsible for Human Resources so I am familiar with these areas.

FMLA (Family and Medical Leave Act) If you are  not familiar with this act (US) and you need to take medical leave, you need to be aware of it and you need to talk to the appropriate person at your place on employment. There is an FMLA Employee Guide and Factsheet on the Internet. When I knew I was going out on leave, I talked to the HR Manager and we started the clock on FMLA which in my case, allows for 12 weeks of unpaid leave in a 12 month window (could be intermittent).

Short Term Disability is not a requirement for employers to offer to their employee’s, but in a lot of cases they do. Policies are different however, in my case, it pay’s 13 weeks (after a one week elimination period).  You will want to look at the policy details, it usually does not cover 100%. In my case, it was a percentage, and there was also a weekly cap. This is a very significant decrease from your normal income, but it is better than getting nothing!

Long Term Disability, like short term, is not required. In my case, it works similar to short term, except it will run until I am 65 and the benefit has a higher cap than short term did. As of 9/23/15, I am 13 weeks in which means I am at the end of short term benefits. My Short Term Insurance Company is the same my Long Term. As of this writing, we were informed that the long term would start this week so there will not be any disruption in disability payments. One thing you want to take note of on your individual policy is what the language says about your duties. My policy clearly states “the inability to return to the main duties of your own occupation”. This is critical, it means that I can’t perform my duties, not any duties. Some policies may not cover you unless cannot work at any job.

COBRA is the Consolidate Omnibus Budget Reconciliation Act. Once again, if you not familiar with COBRA you should get on the Internet. FAQ’s at the US Department of Labor website is a good starting place. In my case, this allows me to continue Health Insurance coverage after my termination of employment. It is 100% cost to me and I am can stay on it for up to 18 months.

Long Term Care Insurance is not usually offered by the employer. It comes in all shapes and sizes. Basically, it can cover you if you develop some kind of chronic illness or disability where you would require assistance with daily tasks and could you in event you had to go into long term care. In my case, once diagnosed, this was not option any longer. This is a form of insurance that you should look into as extended medical care costs continue to rise.

 

 

Debra’s Perspective Part 1

I asked my wife to write a couple of posts. For the record, my last blog, Part 4 was written only with Debra’s assistance. My short term memory is not good, I cannot recall details of my last Doctor’s appointments or even details about some things from work that Debra references in this post. Thank you dear!

Mike

I have been asked to write a bit about being a spouse of someone with Early Onset Alzheimer’s disease.  There is a myriad of challenges and emotions I am now faced with.  I wish for childhood days of getting on my bicycle and biking around town with my friends, feeling the breeze brush back my hair.  And as time goes on it will only be harder and harder to name the emotions one is feeling.  And for every emotion there is a new symptom that is now living in our house.  We live with company everyday now.

My husband, Mike, has had one major stroke and several small TIAs.  Because of this health complication so much of what I thought about his health had to do with the strokes.  It didn’t occur to me in a very real way until well past his neuro-psych exam that he had anything else to complicate an already complicated health system.

Even as I sat in the room with Mike listening to the results of the neuro-psych exam I STILL did not want to think about a diagnosis of Alzheimer’s.  I wanted everything to be placed in the basket that held his stroke diagnosis.

Let me explain.  It’s not that I don’t let change happen because I do.  But I have to be punched, with some reasonable amount of force, in the gut before I really acknowledge anything.  It was not beyond the pale that I too was ignoring Mike’s symptoms simply because it had not punched against me with enough force.

We live a very quiet life.  Mike had a job that he greatly enjoyed and wanted more than anything to move toward retirement with that job firmly in place.  I wanted that for him as well.  Since our marriage five years ago and I moved to Omaha I have not worked outside the home.  I tried to actively find a job when I first moved here to join Mike.  But nothing was really presenting itself.  So I got busy with other things.  I love the life that Mike provided with his job.  It worked for both of us really well.  There was no reason to mess around with that combination.

When Mike now came home from work in the evenings he would so often say, “I’m just exhausted”.  There weren’t many days that he didn’t say that very thing.  Since his stroke in 2011 he voiced that exhaustion almost every night.  He would almost crawl into his recliner and turn on the TV.  He loved his mix of crazy TV shows.  Once I got dinner made I would join him and I too would watch some kind of crazy TV show.

I was starting to notice that some of the relationships on TV shows were confusing him.  I really didn’t know what to say to him about that development.  When we first met what I really enjoyed was his quick wit.  He was quick and I really liked that about him.  It suited me so very well.  We had “come-backs” for everything.  Probably one of the dearest things I miss the most about him now.  He was starting to look at me and say, “Boy, I didn’t see that coming.”  At first I’d tease back and say something kind of witty and let it go.  But it was happening with a frequency that was almost making me angry.  “What do you mean “you didn’t’ see it coming”?  It’s TV!”

If asked I would now say this is what I first noticed about Alzheimer’s, he got confused with connections that had been a walk in the park for him before.

In January of 2015 he had a neuro-psych exam.  I did not go with him for the initial tests because no one allowed to be with during the exam.  I did go with him to get the results.  I’m not sure of the why’s but it did seem to me that the memory issues and their results were downplayed as the tests were explained.  Or maybe I didn’t want to hear what she was telling us.  In any regard I did not think a thing about Mike having Alzheimer’s.  I was still thinking it was all a product of his strokes.  We left the office and I went home and Mike went back to work.  I didn’t give it anymore thought.  But Mike sure did!

We’d been to the doctor often enough and we were told plainly that Mike had had enough MRIs and CAT scans to show diseased brain if there was any and there wasn’t any except for his initial stroke.  And the area touched by the stroke was very, very small.  The stroke was dangerous because of its location and he was lucky that he didn’t have any lingering handicaps to deal with.  But there were no other signs of disease.

I really do think the reason Mike got a neuro-psych exam was because he was insistent.  He was not going to let this drop.  Me?  I probably would have let it drop.  What I saw at home and what Mike was experiencing at work were worlds apart.  His work was paramount and he was insisting.  I was the one with the disconnect. I did not see Mike at work.  Mike knew something was not right.  He was insistent.  His doctor set up the appointment at Mike’s insistence.  I was still in denial.

For example, Mike had been to a conference a couple of weeks before his appointment.  He was feeling great.  He was in great spirits.  I really had to doubt if this appointment was even necessary.  He slept well during this week as well.  I was very happy and secure with how Mike’s health seemed to be going. But the conference didn’t last forever.

He was back to work and whatever stress he had been feeling was magnified.  I was so worried about him.  I cleared my schedule of everything.  I sat with the phone in my hand at all times.  I couldn’t concentrate on anything other than Mike and what I thought he was going through.  He was sure everyone at work was looking over his shoulder.  He keenly felt that people were talking about him and doubting if he could do his job.  He was, in fact, called into a meeting and was told that he would be losing some of his authority.  Some of the divisions he managed were taken away.  He was very upset and his blood pressure was horrible.  I was so scared that he would have another stroke.  And he did.

Debra

A Look Back (Final)

June 2015, we arrived for our first appointment with Dr. Murman that ended up being almost 2 hours. We decided ahead of time that we needed to be completely open with all of the symptoms that I was experiencing regardless of what the outcome might be. I was very concerned about the decisions I was making at work, the stress and particularly the memory and cognitive issues were extremely worrisome. This appointment was very important, and also very traumatic on both Debra and I. We were really wanting an answer to what was going on, but were we really ready for what the answer might be. Debra will be addressing this from her perspective in a future post.

Dr. Murman had already reviewed my medical records. In addition, he did an exam that included some of the elements of the January Exam. We spent a lot time discussing my work day, my frustrations, stressors and concerns. He also asked for Debra’s perspective, he wanted to know what Debra was noticing that was different or concerning.

He ruled out Parkinson’s by the symptomatology. His suspicion was Alzheimer’s but we needed lab work and also a spinal tap to test for Alzheimer’s Biomarkers. He also needed to rule out chronic infection, inflammation, or some type of cancer. By the time we left the appointment, the spinal tap was scheduled for July 2015 and we had information about Alzheimer’s Disease and the local chapter of the Alzheimer’s Association .

We were back to see Dr. Murman in August. He once again did memory and cognitive tests similar to previous tests and thought my condition unchanged. We now had a benchmark that started in January with additional information from June and August to map the progression of, presumably, Alzheimer’s.  I already posted the results of the Cerebrospinal Fluid Test.

Our goal when we started down this path with Dr. Murman was to get answers which we accomplished. The news wasn’t good, however, at least we know what we are dealing with. We have a name for it. So what happens next? I am on Aricept which I continue to take. We scheduled another Neuropsychological Exam with Dr. Pare for December 2015 and I see Dr. Murman again in February 2016. Until then, I live a life with as minimal amount of stress as possible. I am off of Xanax completely, I still take Ambien at night to sleep which continues to be problematic.

In future posts I will talk about Early Onset dynamics faced by individuals with new diagnosis. We are typically not retired yet (under 65), may have children at home, may be dealing with disability insurance, FMLA, health insurance, social security, etc.

 

A Look Back Part 3

I wasn’t quite sure what to expect when I arrived in January for the Neuropsychological Exam. Remember at this point, the reason for the tests were to pinpoint if there were any memory or cognitive issues based on the 2011 stroke. Discussions about Alzheimer’s disease before this test were dismissed immediately. I was told to allow 3-4 hours for the tests. If you are interested, the tests included variations of the Wechsler Memory tests, WASI, Rey Complex Figure, Verbal Fluency, DKEFS, Boston Naming, Hooper Visual Organization, Stroop Word and Color, Symbol Digit Modality, along with Judgment Questions.

It was noteworthy that when in college, I did an IQ test as part of a Psychology course and scored in the superior range. Is there a correlation between intelligence and Alzheimer’s? I am not a medical professional, however, I did find research about childhood low IQ and adult High IQ being at higher risk. Also some European conclusions that there is the possibility that individuals with higher IQ’s may experience a slower progression of the disease. Review the materials carefully, there are more opinions than proven facts. We will come back to this.

Debra and I returned a week later for the results and had a very good session with Dr. Pare, she explained everything in detail. The results of the Neuropsychological testing;  “Intellectual functioning was estimated to be in high average range. Impairments on a visuo-construction task due to poor planning and organizational skills. Weakness was measured on all tests of verbal and visual memory functions. Verbal working memory was lower than expected and verbal speed of information processing slower than expected. Results show multiple areas of weaknesses which are surprising given the limited amount of cerebrovascular changes seen on MRI imagining. A neurodegenerative process needs to be ruled out.”

The conclusion was that there was no correlation between the stroke, given the area affected, and the memory and cognitive deficits I was experiencing. It was real now, I could no longer blame these things on the stroke.  Dr. Pare suspicioned that there was some kind of Neurodegenerative Disease that would need to be identified. Of course the first thing we did when we arrived home was to hit the Internet and found the list of Neurodegenerative Diseases; ALS, Parkinson’s,  Alzheimer’s and Huntington’s for starters. Also Dementia including Frontotemporal and Lewy Bodies (DLB).

At this point I was taking Ambien, Xanax, and a Tylenol PM to sleep at night, I was on Crestor and Trilipix to manage my cholesterol and triglycerides, Diovan for my blood pressure, and Plavix which is a blood thinner to reduce the chance of stroke. I had chronic insomnia, Xanax was required at 1mg at bedtime to quiet my mind so I could get to sleep.

One Friday night in June of 2015, while watching TV, I mentioned to my wife that I did not feel well, I went downstairs and took my blood pressure with my handy wrist cuff from Walgreen’s, and found my blood pressure was 186/126. I couldn’t swallow, was told later that I had difficulty speaking, and was not coherent. I had no memory of the event after taking my blood pressure. My next memory was in the ER looking at my wife and my daughter and being informed that I was brought to the hospital in the squad. It was many months later before the event came back in vivid detail.

It had been a very stressful week, the culmination on Friday night of the weeks stress was evidently all my body could take. Other symptoms were also becoming more evident, suspicious and delusional thoughts along with aggressive and angry behaviors.  I was beginning to think that people were plotting against me at work which would lead to many sleepless nights. I could get agitated or angry at the news, watching sports on TV, to the point of being inappropriately loud and vocal for the occasion which was not my personality. I started to get more vocal at work, not at people, but at events.  This was the week from hell. I had maybe 2 hours a night sleep, and even though I was on BP medicine, I can only guess what my pressure was during the week.

It was concluded that I had either had another TIA or some form of mid-brain vasospasm and I was started on Verapamil. Our medical staff, my wife and I were all very uncomfortable at this point because something was obviously wrong, I had significant short-term memory problems, significant cognitive issues and a TIA or Mid-Brain Stroke was not adding up to the symptoms. This last episode I now believe to be caused by extreme stress which led to a spike in my blood pressure that caused a TIA, fortunately, there were no lasting affects.

To sum up to this point, I think it is important for me to highlight the remnants of the stroke that can be verified. I have difficulty swallowing lukewarm or body temperature fluids such as coffee or soup. Hot is ok, cold is ok, lukewarm not so much. I still drool out of the right side of my mouth and sometimes bite the right side of my tongue while eating. I have occasional night sweats and cold chills. My thermometer acts up occasionally, my body temp may drop to 96 degrees. My new normal is 97.5. I wake up sometimes feeling like I have the flu, shivering but it dissipates after a few hours.

I also want to say that I have great respect for the medical professionals that have cared for me or are caring for me now. Nobody knows you and your own body as well as you. The signs were there, but we were blaming the stoke. The key was knowing when it was time to move to the specialist. The Neurologist’s told me the stroke would not cause memory or cognitive issues and after the Neuropsychological Exam, I knew something was not right and it took me until the episode in June to decide that I needed to do something. Next stop was to see Dr. Daniel Murman, a Professor of Neurological Sciences and the Director of Memory Disorders & Behavioral Neurology Program at the University of Nebraska Medical Center here in Omaha.

 

A Look Back Part 2

Picking up from my September 12 post, I am going to spend some time talking about my general health. Looking back to 2010, I can see that my health was not good. I had a lot of personal and work related stress, my weight ballooned up to 230, along with that my  blood pressure was as high as 170/110. My triglycerides and cholesterol were both high as well. In my personal life I was dealing with a divorce.

One beacon of light I found was on Facebook. I happened to see someone on Classmates.com from my college days that looked familiar. I am not sure what made me reach out, but I did, and an email counseling session began. My pen pal was dealing with things in her life, I was dealing with the divorce and it was a chance for both of us to console each other. We did this for several months (never met in person). I finally got up the courage to meet, so we scheduled a time, and had dinner. My divorce was settled, and needless to say, I was smitten. She is my soul-mate. We married December 30, 2010.

Fast forward to November of 2011. I knew I didn’t feel well, I thought maybe I had an inner ear infection. The vertigo was awful, uncontrollable vomiting  with severe sensitivity to light. My wife called the Dr. and they called in some anti-nausea medicine. Later, while leaning over to pick up a glass of diet 7-Up I couldn’t seem to control my left arm. Another call was placed to the Dr. and we were told to go to the Emergency Room immediately. I was wheeled into the hospital (with sunglasses on) and was promptly given a CAT scan which was negative. After 2 MRI’s, the second with contrast, it was discovered that a very small area of my midbrain was damaged due to a stroke. To be exact, Posterior Inferior Cerebellar Artery Syndrome also known as Wallenberg Syndrome. I had Dysphagia (difficulty swallowing), Nystagmus (shaking eyes), loss of coordination in my left arm and leg. Drooling out of the right side of my mouth and biting the right side of my tongue when talking or chewing. Later we learned that due to the location of the stroke, the left of the torso is impacted and right side of the head.

Incredibly after a couple of days in the hospital, medication, and physical therapy I was back at work in a week. The cause of the stroke was unclear, but suspicioned to be high blood pressure. It was occlusion to the vessel, there was no hemorrhage. I started eating better and losing weight, however, I knew something was lingering, something was still not right. I was at the age where the memory issues unfortunately could be explained as part of the aging process or a neurodegenerative disease.

After the first stoke, there were several subsequent episodes, 2 of which required hospitalization. MRI’s did not reveal any further damage, however the damage from the first stroke was still evident on the scan. During consultation with Neurologists,  I continued telling them about my memory issues and cognitive issues I was experiencing like problem solving and multi-tasking. It was as though my thought processes were disjointed. I likened it to a “fog”. Think about when you wake up suddenly and it takes you a minute to acclimate, I was like this all the time. Another example would be when you are “in the zone” working on something and are interrupted and it takes a minute to recognize that there is new stimuli introduced. I could handle all of this quickly before, I could manage multiple things at once, this was me, I was very good at it. It was even noted previously in Management Training that I was strong on decision making, quick to respond to issues or problems, and was right 95% of the time when a quick decision was needed.  Because of my persistence knowing that something more was going on, a Neuropsychological exam was scheduled for January of 2015. Looking back now, I know this was the point in time that everything started to change.

 

 

 

A Look Back Part 1

Thank you for the questions. This post I will talk about family history. I was born in South Central Kansas where I grew up with my parents, two sisters and a large extended family. We lived in a small farming community. I comment today about having good genes. My dad is 82, and along with my mother, still doing well. My grandmother lived to be 98, and with the exception of one infant, all of her 11 children are still living, the youngest being a few years older than me. I lost one uncle on my mothers side to cancer at 52 and another one at 78. To my knowledge, there is no history of Early Onset of Alzheimer’s in my family. There is some history of dementia in later life.

I had a wonderful childhood, loving parents and grew up in a good community where our religious faith was and still is important. I learned much about mechanics from my father who was a mechanic by trade. After high school, I went to college for two years and then moved to Iowa, married and raised 3 children. I was employed at a Farm Equipment Dealership until 1998. After the dealership sold, I started working at a National Farm Equipment Finance Company in Omaha Nebraska as a Credit Analyst.

Shortly after I started working in credit I was promoted to the Director of Information Technology. I went back to school, got Microsoft certification in Windows and also Microsoft Office. The company continued to grow and in 2001, we bought a company in St. Louis that financed Construction Equipment. In 2007, we merged with a sister Agricultural Finance Company in Omaha and I was promoted to Chief Operating Officer and became of member of our Executive Committee. We had quadrupled in size since I started with company. Everything was going well until the financial crisis. 2008 through 2010 were very hard years. Part of my responsibilities were managing the areas of IT, Operations, Customer Service and Human Resources. Due to the economic climate of the time, we were forced to reduce a third of our workforce and eventually close the St. Louis office. In my work life, these were the hardest of times. At the same time, I was also going through a divorce.

This is a quick snapshot of my life. Looking back, I can see that this is the point where the stressors began impacting my physical and mental health. In Part 2, I will talk about a stroke and several TIA’s before my diagnosis of AD.

 

Cerebrospinal Test Results

I am answering some questions today. How did your spinal fluid test results indicate that you have Alzheimer’s?

First a quick note, I am not a medical professional. The results I am sharing are mine and the information is taken from the lab results and explanation provided.

The cerebrospinal fluid is tested for Tau Proteins then graphed. Depending on the levels of the proteins, the diagnosis of Alzheimer’s (AD) can be determined. Along with AD, this test is used to help with diagnosis of other diseases such as Lewy Bodies (DLB) and  frontotemporal dementia (FTD) which is explained in the test results. In my case, the numbers were in the range for AD, however, they were low indicating early stage. My official diagnosis is Early Onset and Early Stage, there is a difference. I recently read a blog from a very nice man that was detailing his cognitive and memory deficits with Early Onset of AD and realized he was diagnosed at 75 and then in later posts referred to his diagnosis as Early Stage. I think there is confusion about the difference between Early Onset (also called Younger Onset) and Early Stage. I like the Younger Onset categorization because it removes any confusion due to age.

Early Onset is determined strictly by age (under the age of 65). Early stage can be any age, but factors such as the protein test and also a neuropsychological/memory exam among others determines the stage. Again, in my case, I am Early Onset due to my age (58) and Early Stage based on both the Spinal fluid test and also a Neuropsychological Evaluation and several memory tests that I will address in a later post.

Hope this helps, just a footnote, the spinal tap was not as bad as advertised! I did encounter headaches after, listen to your medical professional when they say NO exertion and stay flat on your back after the test for a couple days!

Mike

*Updated* Who am I.

My name is Mike Hughbanks, I am 60 years old living in Omaha with my wife Debra. I was the Chief Operating Officer at a National Finance Company based here in Omaha Nebraska.

On August 14, 2015, after blood work, a spinal tap, Neuropsychological evaluations, I received the diagnosis of Younger Onset Alzheimer’s Disease. Needless to say that was traumatic for Debra and I. We were told that there is no cure. Yes, there are drugs that can help with the symptoms, but there is no cure. My neurologist then informed me that he could not release me to return to work due to the level of cognitive impairment and short-term memory loss.

I am fortunate that I have an early diagnosis, and also have a fantastic medical team at Nebraska Medicine. Omaha is also blessed with a wonderful staff of people at the Alzheimer’s Association. I have been on disability since May of 2015. I retired shortly after approval of long-term disability. This blog is my story. I am active with the Nebraska Chapter of the Alzheimer’s Association here in Omaha. My blog is literally reaching people throughout the United States and now all over the world. My passion is helping others that have received a new diagnoses of Younger Onset of Alzheimer’s Disease. I am doing everything I can to spread the word. Ultimately we are working toward a drug that will slow did the disease, aide in early detection and, we need a cure.

In 2015 – 2016. along with my support of my friends at the Alzheimer’s Association, we have shared at over 40 different venue’s to educate people about Alzheimer’s and dementia in general. Debra and I were on several local TV news stories, we recorded several TV programs that aired on Positive Momentum TV. I was able to speak to groups ranging in size from 6 to 400. This blog has been viewed by  over 4000 people from California to Maine and even England and Australia. I am now a bloke and a matey (I hope that is a good thing).

We know that my condition continues to deteriorate. My cognitive abilities are beginning to suffer more and my short-term memory is not good. I am still able to drive, do the grocery shopping, cooking, laundry and household chores. I have to write everything down on sticky notes (sticky notes are my best friend). Politics and religion are no longer in my TV viewing list or points of discussion. My stress and anxiety increase dramatically when I see or read about what is going on politically in the country. I am currently on the Excelon 9.5 mg 24 hour patch, (Rivastigmine) prevents the breakdown of acetylcholine in the brain, thus temporarily increasing concentration. In doing so, it may improve the thinking process by facilitating nerve impulse transmission within the brain.

Debra and I are excited about what 2017 will bring. Thank you for following my blog.

Mike Hughbanks