Ways to Adapt

[Jimi]

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!

 

[affected]

I love this! Technology is definitely opening up a whole world of difference. Thanks Jimi, I hope this thread goes bananas

 

[ReginaS]

Welcome here. That's great what you did.

 

[Nikki J]

Thank you. I am constantly grateful for living in the technology time we do. I asked for a NEALS webinar on this because I think it is important but it didn’t happen. If the organizations that provide patient services could help less tech oriented people set up it would be great. It would be an awesome volunteer position even for someone with that bent.

the recliner control is awesome. Good for your mom!

i am so glad you joined us!

please keep sharing. I look forward to getting to know you!

 

[Jimi]

Thanks for the kind words all. Being able to adjust my leg rest, backrest, and headrest with my computer/phone and no hands may seem trivial to some, but as soon as I feel any discomfort or a pressure points starting I can quickly and effortlessly adjust my position. No need to ask for help. In a way it has given me the ability to move ! I really find peace of mind knowing that that if I wake up in the middle of the night and need to adjust, no worries , no waking others ! I pride myself on being a little of a burden as I can .

 

[Nikki J]

It doesn’t seem trivial to any of us. We all know how important it is for you and your CALS

 

[affected]

Wow not even close to trivial it is a huge thing!

 

[pittsburghgal]

Wow, Jim, I am blown away by your abilities to use technology to help you! Also amazed at your mother's skills. I wish I could borrow you for a day!

Sharon

 

[Jhettinger]

JIMI, THANKS FOR INFO

I PREPARED AN EXCEL MATRIX FOR YOU IF YOU WOULDN'T MIND FILLING OUT

I AM TRYING TO STANDARDIZED MY SETUP

 

[Jhettinger]

I have Alexa, ultra comfort chair,
remotes for; TV, FAN 1 & 2, cable box, FPLACE

 

[nona]

I was ecstatic when I realized that I could control my tv, robovac, and ac from my Tobii. The Tobii is also my voice to talk to Alexa for my lights.

 

[Jimi]

JIMI, THANKS FOR INFO

I PREPARED AN EXCEL MATRIX FOR YOU IF YOU WOULDN'T MIND FILLING OUT

I AM TRYING TO STANDARDIZED MY SETUP

I'm not sure how to fill out that chart, it downloads as a PDF that I can't fill in. I like the idea of of detailed lists though. Thanks

 

[Jimi]

Wow, Jim, I am blown away by your abilities to use technology to help you! Also amazed at your mother's skills. I wish I could borrow you for a day!

Sharon

Sharon, you would be amazed at what you can do if you have the patience and desire. If you have any questions on where to start, I'll do my best.

 

[Jimi]

If enough people are interested in more details on things, I will put up more specifics. So far my experience with showing others hasn't gone well . I may be boring them to death with details? Perhaps they don't have the patience to spend hours reading manuals or learning software ? I don't enjoy these things, but I am too stubborn to give up until I figure things out. Maybe I should make a video? Not sure how comfortable I am on camera being so messed up with this disease... But if it genuinely helped ..
I tried to help someone locally with their loved one with Als. Unfortunately it may have been too late. Depression and pain had become such a overwhelming issue. Of course everyone is different in how they deal with things. I can't help but wonder if they had been more mentally stimulated and been able to move the chair to avoid pain that their journey may have been more tolerable. No one should be stuck in one position with no computer, lighting , seating position , TV, music, fans, etc... Easily accessible. I would have lost it by now! Instead , I'm actually in a much better place than I thought possible .

 

[Jimi]

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 !!