Technology is a pillar of my foundation.
I know I use the term foundation often. God, family/friends, technology, nutrition. In that order. Those are my bedrock things. That’s how I’ve been for the past 18 months or so and I have no doubt the positive impact on my health overall. My progression has slowed down considerably. If it wasn’t for the appendix/septic issues I had last April who knows where I’d be? I think April cost me a year of life by the time I was discharged. Maybe I’ve got 6 months back since then. Who knows? Hmmmmm?
Technology is a big deal for pALS. All those smart gadgets and toys everyone is enjoying these days? Those are called tools on planet ALS. Fortunately, I’ve always been a bit of a technology nerd. The Apple universe is easy for me but I can navigate a PC. Both systems have their strengths and I operate both, although IOS is currently my primary tool of choice.
Before I was diagnosed, I knew what ALS was, who Stephen Hawking was and who Steve Gleason is. When Christopher Reeve broke his neck I was fascinated at how he stayed alive and functioned at such a high level. Remember Steve Austin? The world’s first bionic man! I loved that show. Robocop? Yup. Loved that too. Well, now all of that stuff is real, readily available and accessible. I’m not thrilled about needing it but I’m not mad about having it. Ya know?
The other thing is that technology is not that expensive. It’s definitely not cheap and I’m sure some of you are yelling at me right now. Accusing me of being out of touch. Of course it’s all expensive but a lot is covered by insurance, can be rented or leased. Grants, donations and charities fill in a lot of the rest. And you certainly don’t need the latest and greatest gadget either. If you need something, you can get it, but you might need to work at it. There’s always red tape these days but it’s not insurmountable. Honestly, if you want to bitch about ALSA, and we agree, the criticism is justified, pick up a phone and call them! Well …you know what I mean.
I’ve never been turned away empty handed from ALSA. Every message returned and all questions answered. The local people, in the local offices are saints. Many are volunteers. If you want change, have someone roll up your sleeves and go change it. I’ve shared my criticisms with several leaders face to face. They know what’s up. At the ground level, local ALSA is vital.
If you call them and they don’t help, call me. I’ll help you. Ok, back on topic. Hmmmmm?
The first piece of technology I invested in, specifically for ALS, was my van. I knew what was coming with regards to my progression. The fasciculations in my legs signaled the impending weakness and my wheelchair days weren’t far away. I need to be mobile. I sucked it up and started researching and searching online for handicap vans. Like everything else, there are a lot of cool options out there. It’s not impossible to find a quality van for around $25,000. It’s easy to spend more, always. But it’s a tool first and foremost so durability is at the top of the list. My wheelchair is over 400 pounds without me in it and my driving skills aren’t what they used to be. Hahaha.
I ended up finding a fair deal on a higher mileage 2019 Chrysler Pacifica. The ramp slides out and the van lowers on hydraulics to reduce the slope. Pretty freaking awesome. It has apple car play but is otherwise pretty pedestrian. I had the windows tinted because I wanted to look cool, and an easy chair lock was installed. This allows me to drive into the van and be locked in place. No other straps or tie downs for my caregiver to mess with. Click the seatbelt into place and away we go. Easy peezy. I think the easy lock was $1000. Worth every penny in saved efficiency and effort for my caregivers. The only drawback is it drastically lowered the clearance of my chair. Still, the upside is worth it. One other van tip, I bought a triple A membership. The idea of being stranded on the highway with a mild case of ALS doesn’t sound very appealing. Ya know?
I had to sell my corvette to pay for the van. That was a difficult trade to make. I really liked going fast. Oh well. Heavy Sigh. My computer won’t sigh.
My second piece of tech was my wheelchair. This too was important to me to get right because I knew I was going to be spending a lot of time in it. I fought for a Permobil F5 VS. It’s an incredible machine and I will definitely do an entire episode about wheelchairs in the future. It has a seat elevator that was funded by Team Gleason. If you’ve never heard the Steve Gleason story you should check it out. Watch the movie too. Every pALS owes a debt of gratitude to Steve and Team Gleason. Thanks again Steve!
My chair is tough and rugged but also looks sporty. It’s nice to still be a little stylish. Not only do I have the seat elevator but I have the standing feature. Several people tried to talk me out of spending the money on this feature but I took the risk. I use the stand several times a day. It helps my caregivers dress me but I really think it’s good for my health. My body gets to stretch out. Blood flow, digestion etc. all benefit from standing. I can even sleep in my chair if I need to and I have. Several times. It’s money well spent, for me anyway. Ahhh.
I mentioned this before but I do have an IT guy and you should too. My buddy, Johnny G, has worked hard to find me tools that let me maintain a high level of independence. I operate everything with my TD Pilot. This is an IPad wrapped within a strong case with speakers and infrared eye tracking technology, operating special software. There isn’t much that I cannot do between my Tobii and Johnny G. Here is an incomplete list of what I can control. Open and close doors. Doorbell camera. Raise and lower window blinds. Control and dim lighting and ceiling fans. TV. Stereo. Roomba vacuum. Thermostat. Video cameras. Car play in the van. I even write and produce my own podcast. ALS Uncensored. Maybe you’ve heard about it? Hmmmmm? Hmmmmm?
Obviously, there are things on my list that would be difficult to defend as being a need but so what? The reality is that, for everything I can do without help, means a higher quality of life for everyone and arguably cheaper. Saving money on caregiver and utility costs as well as protecting the sanity and wear of my people. It’s also getting cheaper every day for a lot of this stuff. I have committed to the Alexa universe and it works great for me. I know there are some privacy concerns but the upside is too good for me to not adopt the technology. There are
adjustable privacy settings which you should use and not ignore. It’s the world we live in. Vanessa and everyone else now give Alexa commands as needed. It will even remind you to download my next podcast episode. Alexa, play ALS Uncensored. Oops. Sorry. Not sorry.
It took Johnny three days and a few jack and coke’s to get everything installed and talking to each other but it all still works great, even a year later. Everything you need you can find at Home Depot or order online. Having a qualified electrician do the installation is the best way to go. Team Gleason, again, is a great resource for smart house information.
Amazon is another favorite tech tool. There is nothing that I can’t have delivered. Groceries. Supplements. Medications. All can be scheduled. Reminders and notifications can be set up easily. You can even shop and send gifts to others and not just yourself. Who knew? Hahaha. The point is this, the world is still open for even the most locked in pals to participate. It’s definitely different and certainly not easy but it is still there if it’s important to you. Do you follow Mayuri on Facebook or twitter? The girl is totally locked in but is currently pursuing her masters through Arizona state. All with her eyes, using the same tools I’m telling you about, and are available to you. Obviously she is crazy for going back to school instead of playing video games and binge watching Breaking Bad, for the second time. But who am I to judge? Just kidding Mayuri. You’re an inspiration! Don’t doubt your impact on people for one minute.
Outside, things become a little bit trickier. I can’t find a wheelchair accessible Uber in Tulsa but They were everywhere in Las Vegas and London. In Vegas I push the Uber button. Car pulled up and I drove in. The guy anchored in my chair and off we went to go see Tony and Connie. When we arrived I paid with my phone, left a fat tip, and was on my way. Honestly, these days I am content to go anywhere someone wants to take me, but I digress. I certainly hope and expect these options to travel independently to expand everywhere soon. Driverless cars are going to be interesting. Where should I run away too? Also, another side note, eye tracking suffers from the sun and glare when outside so be prepared. However, wearing sunglasses actually helps, which is weird. I wear sunglasses indoors when a lot of people are around and can operate my Tobii with no problem. Who knew? Not me. Hmmmmm.
Tech for personal grooming? Yep! I have that too. Oral B makes a great electric toothbrush. Oral care is incredibly important for pALS and the electric toothbrush just makes life easier and more pleasant for everyone. A clean mouth and a close shave also helps to keep the kisses coming. Definitely a priority for me. I like to be kissable. But I digress, again.
I bought a bidet. Bidet is French for butt wash, and while it might seem odd at first spray, it’s common throughout the world. It’s also hygienic and a nice gift to you and your caregivers. Wiping your own bottom is personal. Having your bottom wiped by others is not fun for anyone but it’s part of ALS. With a bidet doing most of the work you might only need one wipe before you can get on with your day. Without a bidet and who knows what kind of excavation is taking place back there? It’s a big no from me dawg! Splurge a little and get the one with the heated seat. Thank me later. Hahaha. What does Star Trek and toilet paper have in common? Hahaha. Hahaha. Damn I’m funny.
Ok. My favorite, favorite, is my appropriately named booger sucker. This is marketed for babies but I found it and bought it two years ago. It’s a three speed nose vacuum. I tried the netti pot and quickly realized that I would drown, so I found this gem. Turn it on high, jam it up the old scnozz and all your problems are sucked right out of your head. I even use it for my ears which is probably not recommended but it feels soooo good. I don’t care. I’m high maintenance. Deal with it.
Let’s see. What other technology do I have? Hmmmmm? A feeding pump was added a few months ago and that was a great decision. My reflux is gone along with the medication for it. I was getting too much too fast and Vanessa was spending too much time feeding me instead of scrolling on her phone so I started asking questions about a pump and presto! I have a prescription for a pump. Damn I love my team. During my office hours I get nutrition and hydration pumped at a nice pace through my feeding tube. It looks stupid and I don’t like it but it’s just to easy. Set it and forget it. My ten year old niece can operate it and she does. We actually bond over it. Life is funny like that. Whatever, I’ll take it.
I certainly have made it a priority to be able to have easy access to technology as you can tell. The underlying infrastructure isn’t overly complicated but it also takes a little thought and planning. Having a quality high speed connection to the internet is crucial. Having a basic understanding of wireless and Bluetooth is also helpful. Having a generator on hand is prudent as well. Because when the power goes out, my technology dependent life goes out with it. Not all of it but enough. ALS problems. Hmmmmm.
Last, I want to chat about eye gaze. Tobii to be specific. There are other options out there. A lot actually. People use all kinds of cool things to communicate. Switches can be operated by anything you can move. Head, knee, and feet. The versatility of adaptive gaming controls is impressive, and the instructions for everything can be searched on YouTube. If you are technology handicapped, YouTube is your starting point, without a doubt. Hmmmmm.
Tobii. I’ve been fortunate to have been able to trial both the PC and Apple versions of the Tobii. I like both, and both have their strengths and weaknesses. I have spent much more time on the iPad , for the sake of transparency. One quick side note, Medicare does not consider access to the internet vital, so you have to pay to have your Tobii unlocked. It’s only $25, which shows me that everyone thinks the policy is absurd. Considering Medicare thinks a ramp to leave the house is also not vital, this should surprise no one. Ughh.
The PC version is exactly like it sounds. It’s basically a tablet with eye tracking. The program called control is pretty amazing. I can do very detailed work with it with pinpoint accuracy. It’s all business. I haven’t used it for artistic purposes yet but I know many who have and their work is mind blowingly impressive. It’s also easy to link to, and control your desktop computer using log me in. Apple allows this too. The big bonus for the pc is the ability to use ability drive. Ability
drive is the only way to drive and operate my wheelchair with my eyes and it doesn’t work on the apple.
The pc version is currently available in two sizes. I-13 and I-16 inch screen. Once you add on the bulky case it’s pretty large. Especially since it is only 20 inches from my face for proper operation. It’s a little difficult to see around. They all are. This is definitely a time when bigger is not better if you’re actively mobile in your lifestyle. Fortunately, you can turn the camera on to see where you’re going. But you might want to watch your toes when I’m around. Hmmmmm.
I have the apple version, called TD Pilot. I’ve had it for almost one year. I fought hard to get it when it first came out. Honestly, I wish I could combine the two versions together. The accuracy of control on the iPad would be an ideal combination. I’ve been an apple user for years. The Pilot is an iPad stuffed into a case with speakers and eye tracking. Where the pc allows for accuracy, the Pilot is based off of the swiping motions built for touch screen technology. Using hands and fingers with ALS? Well what the fuck chuck? My fingers and hands are currently suffering from cascading neurological decay. Why would I want a touch screen and swipe gestures? Good question.
The Pilot is easy. Very easy. Almost too easy, if there is such a thing. Everything is big and neat and easy to find. You can group like things together or let it all hang out. Very customizable and easy for my caregivers to tap the screen to help me out. Pinpoint accuracy is not a thing here But I’m not sure it matters. The iPad is fun and made for today’s social media world. Really the only thing that is bumming me out is ability drive won’t work on it, and it seems like that won’t be changing anytime soon. This is a potential deal breaker for me. My needs to be able to drive and adjust my chair outweigh everything else. I did trial a head array to drive my chair but it is too fragile and I’m too tough on my stuff. Neck weakness in the future is probable for me as well so my choice is kinda made for me. I just need to come to terms with the change. Hmmmmm.
Technology makes ALS easier and more manageable in every way. It’s really just a question of how much you want to use. Costs are coming down every month, even in the current inflation cycle. Telemedicine is already here and it’s great for pALS. Easily 80% of what happens to me at the clinic can easily be done by video conference. Home health comes weekly for the other 15% and the neurologist can still have me come in if need be. If you are still unsure about technology, there are so many people available to help, but you need to reach out. Nobody is going to do it for you.
That’s about it for this episode. I’m confident there will be another Techtastic episode in the future. If you have a favorite tool you use that you think would help others with ALS, leave a comment on my Facebook page and I’ll check it out.
