My brother Dean has ALS. He’s only a few years older than me, and he’s been dealing with the dreaded disease for 9 years. I had no clue what it was at first, and when I read, “fatal, 2 – 4 years life expectancy,” I cried for days. It was Dean who had to live with it, day by day as his body changed and he began loosing his ability to do things we all take for granted.
“Amyotrophic Lateral Sclerosis (also known as ALS, Lou Gehrig’s disease, or motor neuron disease) is a disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe.”
(Dean standing fourth from left with my 3 other brothers and dad)
My brother is my hero! Dean is a fighter, and he’s proven to every doctor and every nurse that he can live, and will live. We’ve transitioned many times with the idea of acceptance, and I know now that Dean can have as long a life as he can believe for himself, and that we can believe for him.
As long as Dean wants to live, and has the care that he needs to see each day, he will live.
I found much needed hope when I watched the movie, “The Theory of Everything ” about world famous scientist Stephen Hawking who today is 75, but found out he had ALS in his 20s when little was known about it. Hawking has defied the odds, and so has my brother.
I’m in touch with my Dean night and day, yet I’m a 12-hour drive away. Through the use of a computer head-mouse we used to talk via Skype every day, but now that I no long work from home, we’re not able to talk as much.
(Screenshot! Dean’s birthday 2015. Mom and I talking over Skype with Dean, my brother Wayne and Dean’s son Curt.)
So where are we today? Dean is starting to lose his voice. Up until now, and even with a tracheotomy, he was able to communicate vocally to us. We knew the day would come that he would be harder to understand, and that eventually his vocal cords will no longer work. Today it’s easier to communicate with him via email, Skype or Facebook message. His typing skills have improved immensely in the past year.
The computer is his lifeline, and we need to ensure he has it to communicate.
Earlier this year, Dean was gifted a refurbished computer, which enabled him to have monitors set up in his room so he can communicate with hospital staff via his keyboard to text on the monitor (many of the staff have English as their second language).
(Dean’s birthday party in 2016)
Dean’s situation is becoming more urgent! The only muscle Dean is still able to control in his body is his neck muscle. He is starting to find challenges with this. It’s becoming paramount that he be able to communicate with the use of his eyes through eye-control mouse technology.
Here another reason why it’s so important:
One night I received a distressing Facebook message from Dean, “I’m in trouble. Call the front desk,” is all it said. I scrambled to find the hospital phone number. After several attempts I got the right hospital desk and they went to check him. When you lay silent, and cannot speak, the world becomes a scary place. I want my brother to have options. When he was finally able to tell me what had happened, he said he thought he was not going to survive that night.
It’s paramount that he can speak to the staff, and to anyone via the internet when he needs to. We want to be ahead of the curve and be ready for his next transition.
In order to move to the latest eye-mouse technology Dean needs a new computer that will be able to handle his new software and hardware. He’ll need new monitors, and monitor arms, etc. He needs access to the computer for when he’s laying in bed, and when he’s in his wheelchair — along with the new computer and parts, both locations are an extension of Dean and need to be equipped.
(Dean in summer 2017)
Here’s how your donation will give Dean his voice.
2 Tobii cameras , 2 monitors (recommended by Tobii), Cuzzi monitor arm (hospital grade over bed monitor), monitor arm from amazon, for wheelchair drive up monitor, computer with Bluetooth, word prediction onscreen keyboard, external Wi-Fi storage, anti glare tablet for wheelchair text-to-speak programs, 2 battery operated Wi-Fi cameras, installation and tech time. Wheel chair batteries. Ongoing tech support.
Robbin (Dean’s little sister)
Wait, there’s more!
p.s. Through Dean’s improvement with communicating through a computer via his head-mouse, he has started to assist me by performing social media tasks for one of my online businesses. I know with the right technology, Dean’s continued practice, along with his desire to find daily purpose, he will be able to find online work before too long. Let’s help him make that happen~
(The ALS Ice Bucket Challenge was truly inspiring, giving so many sufferers acknowledgement and raising vital funds for productive research. )