The local chapter of the Alzheimer’s Association is putting on a two-part event to raise money and awareness of this dreaded disease. A Kick-off event with the screening of the critically acclaimed film about Glen Campbell’s life and battle with Alzheimer’s disease will take place at the State Theatre in Modesto on August 8. Then there will be a Fun Walk set to take place on September 12, leaving from Graceada Park in Modesto.
The association provides services that are available to patients as well as the families that are suffering in silence with this devastating disease. The Modesto Walk to End Alzheimer’s on Sept.12 is the largest fundraiser in this area for the organization. The walk is even more important in a community that doesn’t have a local office yet. The Alzheimer’s association is the largest private source of research dollars in the world, only surpassed by China and the US government.
This is a story of a local gentleman who in his early 50s with struck with the disease. Contact is through Cheryl Schrock at 209-606-2441
Steve Barbieri’s “Why I Walk”
“My name is Steven A. Barbieri. I will be 55 years old in November of this year and I have Dementia.
I was diagnosed about 3 yrs. ago on Oct 18, 2012. That phone call changed my life, as well as my wife Tracy and my 3 children. What is Dementia you ask? It is a chronic or persistent disorder of the mental processes caused by brain disease or injury and marked by memory disorders, personality changes and impaired reasoning. I get asked all the time what is the difference between Dementia and Alzheimer. This is how I have explained to people who ask. Let’s talk about Ice Cream. Everyone loves ice cream. So if you say Dementia you are saying Ice cream. Ice cream is not a flavor, it’s the word used to group all the flavors together. So when you say Alzheimer you are saying chocolate. Alzheimer is a flavor of Dementia. The 2 most common types of Dementia or flavors are Alzheimer and vascular Alzheimer. I have a different flavor. I have CTE Dementia, which is commonly referred to what the NFL football players suffer from after many head injuries over the years. CTE stands for Chronic Traumatic Encephalopathy. You can see why they shorten it to CTE…
Before I was diagnosed almost 3 yrs. ago, I worked at Wells Fargo bank for about 32 yrs. I was the VP & District manager in charge of 12 branches and about 250 employees, one of the largest districts in the company. I was on 2 nonprofit boards and very active in the community. My outside activities were Martial Arts, which 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.
Now I wake up and drive my daughter to school and head straight for the gym to work out for 2 hrs. to get the well needed oxygen to the brain Monday – Thursday taking Fridays off to go to Starbucks to visit with some Martial Arts friends. I take 12 supplements at breakfast and 12 supplements at dinner to follow a holistic way of helping deal with my disease. Besides taking 1 medication prescribed by my neurologist, I am doing all I can to Live Strong with this terrible disease. I am doing all I can to hold off progressing to the next stage of this disease. They say there are 7 stages of Dementia. I am at stage 3 ish.
I have short term memory problems, word finding problems. I repeat things and have terrible sleep patterns that require me to nap each day at 2:30 pm. Like the battery on your cell phone dies from being used my personal battery stops each day at around 2:30. I require time to lie down in a dark room and just rest… About 1 to 2 hours later, like recharging your phone battery, I am ready to go for the rest of the day.
I had many 1 liners at work that I am remembered by… “When is the best time to do something?, NOW.” Another one is “I never expect someone to do something that I’m not willing to do myself” So with that said, I stepped down from 1 of the nonprofit boards, but still help out with the organization and joined the advocacy group with Alzheimer’s Assoc. I can’t expect to just sit back and wait for someone else to help find a cure. I am out there supporting the cause through the Alzheimer’s Assoc. Here are some alarming facts about this disease. It is the only disease in the top 10 where there is NO CURE, NO WAY TO PREVENT, OR STOP THE PROGRESSION OF THIS DISEASE. About 50% of the people with Dementia / Alzheimer are not properly diagnosed by their doctor. I was very fortunate to get a diagnosis after taking many cognitive tests, a MRI plus a PET scan that showed damaged on both sides of my temporal lobes.
I had been looking for a place to connect for the last 3 yrs. since being diagnosed with Dementia. That group turned out to be the Alzheimer’s Assoc. Like I mentioned earlier, I have terrible sleep habits. One night at around 2 am I was up and started to look online for more information about my disease and discovered the Alzheimer’s Association 24hr, 800 #.
They directed me to their website Alz.org where I found so much information and ways to get connected. I have since joined a weekly call with people who have early onset of dementia like me. I am now a part of the Advocacy Group in my local area. My wife and I have attended the Advocacy Awareness Group that visited our local gov’t official at the State capitol in Sacramento. I have also visited my local Congressman office with the Advocacy group asking for support in funding research to find a cure.
Changing the focus for a moment which my mind does A LOT. Have any of you seen the movie “The Bucket List” with Jack Nicolson.? Well I too now have a bucket list that I wish to complete before I am no longer here in mind. {Maybe in body.} To see my 3 children ages 25, 18 & 14 all graduate from college and walk to get their diploma. To see my son get married, to walk my 2 daughters down the aisle at their weddings and get to have the Father/Daughter dance together. My wife has had the hardest time at the last few weddings we have attended for our niece’s wedding when it came time for the Father / Daughter dance. She is so afraid that I will not be able to do this with our 2 daughter’s when the time comes. I am hoping to see my grandchildren someday and show them all how their Grandfather kicked his way around the world.
To sum things up, Dementia / Alzheimer’s really sucks… With the proper funding for research they believe that a cure is right around the corner. Maybe 10–15 yrs. way. So instead of waiting around for someone else to help find that cure, my family and I, plus friends, are walking to help find a cure for Alzheimer’s on Sept 12th at 9 am here in Modesto at Graceada Park. Come join my team “KICK ALZ’ or form your own team to support / remember a family, friend or someone you know who has this awful disease.
