April 2023
By Richard Tifone
"In 2007, when my son, Adam Tifone, was 16, doctors diagnosed him with atypical PKAN. The future looked daunting, and I didn’t imagine “thriving” would be part of it.
Sixteen years ago, Adam’s only symptoms were losing his balance, falling and various tics, which were attributed to a wrong diagnosis of Tourette Syndrome. Adam spoke clearly, and he liked to sing. He had a good voice, and he could run and ride a bike. Physically, he could do what most other kids his age could do.
Once we had the PKAN diagnosis, he immediately started taking high doses of vitamin B5 (pantothenic acid). By 2009, he was on deferiprone, an iron chelator, which is helping some PKAN individuals function better. Adam remains on both to this day, in combination with an ADD drug, anti-tic medication, anti-anxiety drug and multiple supplements.
God has blessed him with a very slow disease progression and a positive attitude, despite the challenges he has faced. Around 2008, his speech started to deteriorate. Today, Adam’s verbal communication is sharply limited and he relies mostly on text-to-speech devices to communicate. Fortunately, he can text on his phone and use a computer keyboard.
Adam graduated with his high school class and went on to community college where he earned two associates’ degrees. He had a few part time jobs in his late teens but none lasted more than a month or so because of his physical limitations.
In 2018, Adam got a job doing light cleaning at JCPenney. That job lasted for more than four years and was a big boost to him. He has also maintained a good social life, keeping relationships with several friends from high school and college. Playing fantasy games, including Dungeons & Dragons, created a new circle of friends. He meets with that group weekly, in addition to gaming with them online.
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| Adam working from home as the owner of his own bookkeeping business. |
In 2022, Adam began an online bookkeeping program with the goal of starting a bookkeeping business. He completed the program and earned the necessary certifications. Having been an independent consultant myself for many years, I knew what a challenge it was for me to get clients initially - without any disability. I was amazed to see Adam form his business, create a website, set up online marketing and engage prospects on the phone using his text-to-speech program. He even participates in a weekly online networking group.
Right now, Adam has four clients and a goal of earning $5,000 per month in revenue. I have no doubt he will achieve this. He also started a new job in November as a shopper for a large grocery store and works 18 hours per week selecting groceries for online store customers. It’s a perfect fit for him because he has the shopping cart to give him stability while shopping for others.
Adam does balance exercises daily and walks his dog. This way, they both keep fit and enjoy the outdoors.
