On a Personal Note”¦Why I Walk (Steve Barbieri)

Steve and TracyMy name is Steven A. Barbieri. I will be 55 years old in November of this year, and I have dementia. I was diagnosed about three years ago, on Oct 18, 2012. That phone call changed my life, and that of my wife Tracy and our three children.

I get asked all the time about the difference between dementia and Alzheimer’s disease, and this is how I explain it: “Let’s talk about Ice Cream. Everyone loves ice cream. Ice cream is not a flavor, it’s the word used to group all the flavors together. Alzheimer’s is like chocolate; it’s a flavor of dementia. The two most common dementia flavors are Alzheimer’s disease and vascular dementia. I have a different flavor. I have CTE, which is the form NFL football players suffer from after many head injuries. CTE stands for Chronic Traumatic Encephalopathy. You can see why they shorten it to CTE”¦

They say there are seven stages of dementia. I am at stage 3ish. I have short-term memory problems and problems finding words. I repeat things and have terrible sleep patterns that require me to nap each day. Like the battery on your cell phone, my personal battery stops each day at around 2:30, when I need time to lie down and recharge in a dark room.

Steve - Martial ArtsBefore I was diagnosed, I worked at Wells Fargo bank for 32 years. I was the VP & District Manager for one of the largest districts in the company, with 12 branches and about 250 employees. I was on two non-profit boards and I was very active in my community. My outside activities were martial arts (I hold the level of Master 5th degree in Tae Kwon Do), traveling with my wife and kids, going to my kids’ wrestling, football, swimming and dance events, and finding time to go to the gym.

I have a bucket list that I wish to complete before I am no longer here in mind:

  • To see my three children, ages 25, 18 & 14, graduate from college and walk to get their diploma.
  • To see my son get married
  • To walk my two daughters down the aisle at their weddings
  • To see my grandchildren someday, and show them how their Grandfather kicked his way around
    the world.

My wife has a hard time at weddings now. She is afraid that I will not be able to have the Father/Daughter dance with our two daughters when the time comes.

One night at around 2 am I was awake and looking online for more information about my disease. That’s when I discovered the Alzheimer’s Association’s 24-hour helpline.(800.272.3900) The operator directed me to alz.org, where I found plenty of information about ways to get connected.

I have since joined a weekly call with people who have early-onset dementia like me. I am now a part of the advocacy group in my local area. My wife and I joined the advocacy awareness group that visited our local government official in Sacramento, and I visited my local Congressman’s office, asking for support in funding research to find a cure.

My co-workers remember me by my many one-liners: “When is the best time to do something? NOW.”  Or “I never expect someone to do something that I’m not willing to do myself.” Dementia in any flavor really sucks”¦ but I can’t just sit back and wait for someone else to help find a cure.

So my family and I, together with some friends, are Walking to End Alzheimer’s on Sept 12th.
Come join us.

– Steve Barbieri

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4 Responses

  1. Hello Steven,
    Wanted to let you know that your article is included in the dementia “Symptom Perspectives” monthly links tonight, September 30, 2015
    I would like to thank you for sharing your lived experience. My hope is that these words and projects can become valuable resources for change in relationships, treatment, and policies.
    Much thanks,

  2. James Hatch says:

    Hi Steven! I am a 52 year old male and a student of Byongs in Hayward as a young man. I remember you being such a role model and in my eyes, a warrior of the studio there on A Street. Master Yu taught me so much defensively and I could stand in front of any opponent with confidence that I could protect myself. I remember a video of you which I believe was involving you achieving your first black belt. I think it was a demo in which you had a cigarette in your mouth and the student missed and caught you full on the lower jaw. You were so professional and got up off your knee and assumed the position to give him another chance and has no animosity towards the student. I was truly in awe! I was personally knock unconscious 3 times in that studio and 8 times all together throughout my sports career. CTE was not even a worry at the time, but tonight was reading about you struggle and your family. I wish you the best Steven and if anyone can put up a fight, it’s you!
    God Bless to you and your family!

  3. Janet Longacre says:

    You are a incredible person, I truly hope Tracy gets her wishes of you and your kids weddings, graduations etc. I follow what you do as I watch my mother go through the steps of the Dementia hoping to understand more of her constant changes. Thank you for sharing your story.

    • Michelle Johnston says:

      Thank you for your comment, Janet. If there is anything we can do to support you and your mother, don’t hesitate to call us 24/7 at 800.272.3900.

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