FTD Patient Story: Kevin Smiley

This is the first of a once a month series featuring members of the FTD Patient Support Group. The group is a diverse, extremely talented group of exceptional people whose lives and families have been decimated by FTD. The purpose of this series it to create further awareness and understanding of FTD. It's also a testament to the human spirit of how those that have lost so much and are losing the element of our existance, our minds continue on with life. Members strive to live a life of purpose and happiness while there lives are unexpectedly and inexplicably curtailed.  The FTD Patient Support Group has 70+ members from 10+ countries. Ages range from 20's-60's. Members live alone, with families or in Assisted Living. 

Howard Glick

Our first feature is Kevin Smiley. Kevin currently resides in North Augusta, SC. His profession at time of diagnosis was Director of Information (IT) (Networking and Communications) at Georgia Regents University (Hospital & Clinics), Georgia's Academic Medical Center.  

I am honored to call Kevin my friend.

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The Mid-Summers Day My Families Life Changed - By Kevin E. Smiley



It was four years ago in a mid summers day when my wife and I had learned that our lives were going to change forever.  That nothing as we knew it would ever be the same, a change so momumental that it would change the very fabric of how we approach the rest of our lives, and the impact on the children would be just as extreme.  We had five children combined and two grandchildren at that time.

I remember those days when my life was going extremely well.  I had a fantasic job, one that I enjoyed getting up and heading to work.  One that provided a life style that my family had grown into over the years.  We weren't rich, but we were comfortable.  We had the big house, big pool, cars, and were able to invest money.  We could take trips, cruises, and other various fun things that life had to offer. Within a matter of one phone call, it all changed forever.

I guess it started showing it's ugly head probably a year or two before.  This is what my wife (Debbie) has told me.  You see I had been having personality changes, changes that were for the worse.  Changes that would interfer with my family, my children, my wife, and everything in life.  I had gone from a happy, loving, compassionate person to a short tempered, mean, condensending, anxious, horrible man. I had gone from caring and loving my family to not showing any compassion or love.  Yes, I loved my family but I had lost the ability to show them and tell them.  I had gone from a great boss, to a boss that would cuss my employees out, being argumentative in meetings with other executives and customers.

Debbie had noticed it for a long time, but she thought I was just turning into a grumpy old man.  However, when it was brought to her attention at work on how I was behaving she encouraged me to go seek help.  Ironically, I was working on a friends rental property at the same time and a air conditioning vent had fallen and hit me in the head.  I was always having headaches, but with a hit to the head like this warranted a brain scan to make sure no damage was done.

The brain scan showed deteriation of both sides of the temporal and frontal lobes of the brain, which was not caused by the vent hitting me in the head.  My neurologist decided that this would warrant further research.  So, I forget how long it was but within a few weeks I had a spinal tap, MRI, CT Scan, and PET Scan of my brain.  I also had a neuropsych test too, which my neurologist said at the time it doesn't prove anything.  The results of all the test were returned to my neurologist within in about a week or two.

What people don't understand is that even though everyone else tells you that you are acting differently, you don't believe them.  As far as your concerned nothing is wrong.  This is the way that I had felt during this time and still do on most days.

During the waiting period on getting the offical diagnosis I decided that I would start doing research on my own.  I was in search of what could be causing all these problems that everyone was saying I had, but I didn't see.  After many hours spent on research, I had quitely decided that it was Frontotemporal Dementia (FTD).

I don't remember the exact day it was determined by my neurologist that it was FTD, but I think it was around my birthday in April 2009.  Here I was 46 years old, almost 10 years into a great career with the goal of retiring at 65.  I had served my country in the enlisted ranks of military from 1985-1992, served in the Persian Gulf War, had gone to college off an on and achieved what I thought was success at an early age.  My family was the greatest and my wife still loved me as mush as the day we married.

After I received the news from my neurologist we were devistated.  What did this mean, how would we proceeed, what was the treatment plan, is it cureable, will I continue to work, what does this mean for my family, will I die?  All, are very legitimate questions when given a diagnosis like this.

I'm going to tell you that it was pure "hell".

I was a Christian who thought for a brief moment that God had forgotten me.  That soon changed!

With my neurologist help we decided that best plan would be to go ahead and medically retire from work.  There went the job I loved, there went the income, there went our life as we knew it. You see this disease feeds off of stress!  You can imagine having all this happen the amount of stress this would cause. We will say so much pressure I had a couple seizures because of stress, once in a executive meeting, and once at my mothers house.  That was enough for me to agree and retire.  So, in July 2009 I officially retired.  I had invested in Short term and Long term disability with the company I worked for, which was the first blessing.  I was quickly approved for SSDI, thanks to my neurologist and her handling of the claim.

After I left my job it was believed that I might live between 1-2 years.  This lead to my wife leaving her executive level job and income behind.  Wow, my income down, loss of her income gone, to stay at home with me.  We decided to sale are house and get rid of any extra bills we had at that time.  We had one child in college and in 2 years onther starting.  We had to make plans.

As you can see are lives changed dramatically.

It has been four years now and I am still kicking.  My wife is back at work, I have four grandchildren, one just graduated college, another is in her second year and going to nursing school.  The other three children have gone on to own their own lives and provide for themselves. We struggle every day with things that I do and forget to do, but all is fine.  I take several medications to control my behavior.  I can become very anxious and mean quickly.  I don't like going in large crowds of people because it makes me very stressed.  It's like being put in a room full of people having different conversations and asked to listen to just one.  I get confused easily, I often do the same thing over and over.  I like watching the same tv shows over and over.  Life is totally different and sometimes very uncomfortable.  I sleep probably 12-14 hours a day, and have gained about 60 pounds.  This is all part of being a FTD'er....

If you remember above I stated that for a "brief moment I thought God had forgotten me".  Well He hasn't!  He has given me the right doctors, the right will, the right fight, the right family, the right friends, to keep going.  I believe that God has helped me because I refucosed my attention on Him.  Things aren't the same, I have difficulty with a multitude of things in my life.  I can never work again, but what I can do is be an inspiration to others who are going through difficult times like this.  I have accepted my path and what the plan is.  I would not ever wish this disease on my worse enemy, because it is a theif of the most important things.  But, I praise God for  waking me up to whats important.

I want to share some of the symptoms that lead to this diagnosis:

Obsessive,Nervous,Lowtolerance,Heat,intolerance,UNEMOTIONAL,ANXIETY,Hypochondria,APATHY,Aspontaneity,Inflexibility,DISORGANIZATION,INATTENTION,LOSS OF INSIGHT Irritability,IMPULSIVE,POOR JUDGEMENT,PARANOIA,COGNITIVE CHANGES,WITHDRAWAL FROM FAMILY/FRIENDS/SOCIETY,Critical of others Misnaming,Expressing extreme opinions in public,IRRATIONAL PURCHASES,Mood changes,Dangerous driving/accidents,FALSE MEMORIES
Losing/slurring speech,DISINTEREST,SLEEPING MORE OR LESS,LACK OF AWARENESS,LOSS OF LOGIC,HOARDING,Road rage
INCREASED APPETITE FOR SWEETS,CHANGE OF PERSONALITY,Lack of responsibility,DEPRESSION,Interest in porn
Ringing in ears,Layering clothes,Selfish,Angry/violent,PACING,Difficulty concentrating,Less eye contact,MEMORY LAPSES
Lying,Losing items,Losing track of time,DANGEROUS BEHAVIOR TOWARDS CHILDREN,ODD BEHAVIORS,Cruelty,No motivation
LAZINESS,Blaming others for own mistakes,Not finishing projects,CARELESS WITH MONEY,SHOPPING COMPULSIVELY
Flirting,Hurtful towards others,INABILITY TO FOCUS ON JOBS,Rigid thinking,Wringing hands,Swearing
Hyper-religious,Impatient,Irrational jealousy,Sex obsession in non-sexual situations,High sex drive
Repetitive reading/listening/watching,EASILY DISTRACTED,LACK OF AFFECTION,Childishness,Kleptomania,Hostility,Sarcasm

I personally have experienced about 90% of the above according to my wife and my own assessment.  Physicians believe and will tell you that you probably are not aware you are doing some of the above.  However, I believe they are wrong with that theory.  I believe you are more aware in the early onset of FTD. Maybe, you dont know when you progress into other stages of the disease.  I think you lose the ability to control, but are very aware.  I have seen this in my self.

After four years of walking down this unknown path of FTD, it occurs to me just how little is known about this disease.  I believe that it is the job of us who have it to bring about awareness and understanding to the world.  I think the hardest part of this disease is the lack of emotion you have.  I remember when my last two grandchildren were born I was happy, thrilled, but had no emotions.  My mother died in September 2012, I had no emotions, no crying, no outward display of sadness, just flat with emotions.  I felt extemely sad but just couldn't show the emotions.

This is; "That mid-summers day when my families life changed".

Howard started this blog and has allowed us to provide our stories on this walk.

Thank You Howard,

Kevin E. Smiley
If you would like to write me and ask questions, please send emails to: ksmiley63@gmail.com


* I run a private FTD Patient Support Group on Facebook. It is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. Please email me at howardglickftd@gmail.com to join.

Howard