Jimi

Just a guy trying to thrive with ALS...

I posted this, but was told maybe repeating it here may help . Best of luck everyone
10/19
Hi all. Not the most social person, but I will give this a try. Was a very capable machinist and cnc programmer in my former life. I am now paralyzed almost completely from shoulders down. Bipap/NIV 24 hrs a day to breathe. Can still eat and drink, but speech is slurred. Not been out of the house much in the past 20 months. Official ALS dx was Feb 2015.

I take no regular medication.Spend most of my time in a power recliner/lift chair, including sleeping. I am completely comfortable and have no pain. Maybe I'm just lucky, but I believe that the things I have done to adapt to the situation along with the right attitude and care have been the difference.

With technology becoming more affordable than ever before, controlling your environment hands free is not difficult or expensive.

From my recliner, I control two computers, a TV, heater, 4 lights , 3 fans , my stereo , my cell phone, and most importantly, I can move my power recliner to adjust my position anytime I need to. All by myself with the use of only my head movement and or voice . Everything will be doable with eyegaze when my head and neck stop working .

Everyone is always so impressed with these things and tell me I should help others. I am not sure what I can do. I do know that if you can keep your brain engaged and control your environment and seating that things can be pretty good. Maybe I will be around a bit longer. My Daughter is in 6th grade now and I am still able to help teach her things.

Finding and affording people to adapt everything was not an option for me. Ends up that with patience and desire you can do it yourself. The trickiest part was taking apart my recliner hand control and soldering wires to the buttons so I could control it from the computer. I instructed my Mom on what to do. She can now solder and has a basic knowledge of how to use a voltmeter! Enable Viacam is a free software for pc that allows you complete computer control with a Webcam and a few inches of head movement. My friends think this is all so complicated . I don't think it is! Once you can control a computer, you can control a smartphone, which opens up the world of inexpensive home automation. Obviously I can’t respond super quick, but if anyone has questions or wants to share how they have adapted, maybe we can all benefit. I live in southern California If anyone or their caregiver would like to check out my setup, maybe it could help . If anyone is interested in more detail, I will do my best to explain . Everyone is different, but in my case being mentally engaged in my little techno-bubble bedroom has been better than I ever expected!

I would like like to point out that the technology part of the equation is actually easier than finding a great person to take care of all the other things needed for this disease . Eating , bathroom, hooking up all the equipment , bipap adjustments, it's a long list . I'm fortunate to have someone truly talented in my life who has the patience to put up with me , and act as an extension of my own hands when needed !!