While we were at Lourdes, with barely any wifi outside the hotel (which is a very good thing, forces focus and that was much needed), I received emails about the wheelchair I bought arriving here in the States. My sister-in-law’s brother-in-law Jack (you got that? basically family), a major sponsor and actual builder of my wheelchair build, let me know it arrived here in the states. Continue reading “Wheelchair Stage 2 complete”
I have purchased the donor chair.
My quest for sidewalk domination has begun! Muahahahhahahah!!!
No, seriously, the website where I got the idea starts with an old Quickie F55 wheelchair, then modifies it. I have purchased a quickie F55 wheelchair, from England, and I’m waiting on my good friend and mentor to help me ship it over to my family and friend who volunteered (I really hope not voluntold) to help me. This is exciting for me, EXTREMELY exciting. The F55 currently runs, it works and I “could” use it without mods. But no, if I’m going to buy a wheelchair just to use it’ll be one through insurance. This chair though… she’s special. Yes, it’s a she. Yes, she’ll need a name. Continue reading “Wheelchair- stage 1 complete”
An open letter to all potential partners and companies,
I’m writing you to request your sponsorship and support for building an efficient, modern, lightweight, speedy, and beautiful wheelchair. In return I offer free advertising and as much PR as I can on this blog, on the chair, or in merchandise. I realize this is a bit forward of me, so please allow me to present my story.
I was diagnosed with ALS in May, 2017. At that time, I was living a very happy and dreamlike life with my beautiful wife and 4 children.
I was pursuing a long and successful career, had settled into a house, and I was generally looking forward to a long life. Like everyone affected with this disease, it was not to be the case. Everything turned upside down and living for the long term is no longer thought of, just the day-to-day. This is not to say I’m giving up – I have not yet begun to fight, as so famously was said. But in that fight I will need help as my body becomes weaker and weaker. My wife Melanie is by my side through thick and thin, my strong right arm, my children are with me to help me see what the future looks like. My speech and thoughts can be shared by modified communication devices. Food can come through a tube. But my own body will be confined to a power wheelchair or a bed in the near future, and this is where I have hit a snag – I want to be mobile.
You see, modern power wheelchairs aren’t really that modern. Rehab, tilt-in-space, elevating, stair climbing wheelchairs are novel and needed, but they don’t do something that a lot of people would want – they don’t go places effectively. Modern power wheelchairs use lead batteries with a top range of 12 miles, maybe, if the charge holds up. The batteries have to be replaced often, if they are used frequently. They don’t go faster than 4-8 mph, without the ability to quickly go faster in emergencies. They are made with heavy steel, or maybe aluminum, and are incredibly heavy, poorly balanced, an unwieldy. They have terrible ride quality that makes it more painful to ride than walk, They have upgrades like “paint color”. They have turning radii that are terrible, especially inside, leading to knocked knees or knocked walls. They trap wheelchair users to either being confined to their homes or unable to move around inside because their chair is too big, or worse, forced to purchase more than one expensive piece of heavy hardware to move around indoors or outdoors. This isn’t just wheelchairs, either. Modern personal mobility scooters also are also bad, as I experienced in my first ALS foray on a scooter. Rocinante, as I named it, died on me 3 separate times, and only had a range of 6 miles. 6 miles, at Disneyworld, is less than half a day, especially with 4 kids.
So I researched. I saw that all the big, insurance approved power wheelchair manufacturers make similar chairs to each other. I would venture to say that none of those companies are pushing the power wheelchair into the future – instead they are sitting in the same tech from when the power wheelchair was invented.
This is where you, the company, or team, come in. You are the leading edge of what is out there. I see new technology being brought to bear in automobiles, auto racing, sensor tech, self-driving tech, bicycles, motorcycles, even so-called “last mile” transportation, and more. I wish to bring that technology to wheelchairs, so that disabled people such as I can have the freedom to enjoy our remaining lives, instead of being confined to a home and TV. Therefore, I ask your help, for your sponsorship.
I want to build this powerchair, with additional adjustments, rehab seating conformed in a Recaro-style seat. The major design concepts are there on the website, but through the help of my family and friends we might be able to make it happen.
I would like to ask you, the company, to sponsor this build. $100, $1000, $10,000, research, materials, design and engineering help. Do you want more concrete ideas of what I truly see that this powerchair could be? How about a carbon fiber chassis and seat, like Formula 1, or the new Ford GT? High end suspension systems, from Fox? How about lithium batteries from Tesla, or Fisker, or BMW? What about electric motor and battery technology from Formula E that can have a chair safely go up to 15, 20 mph when needed? What about Audi, Nissan, Ferrari, Toyota, all these companies with vehicles with hybrid systems? What about brain control technology from companies like Emotiv, programmed so that ALS patients who can’t move their arms can “Think” their way around? What about a control system that gives the patients the greatest control, like Robotec? What about partnering companies with universities like Hopkins or MIT to test and truly innovate? What about you, big wheelchair manufacturers, partnering with actual disabled people to design chairs that can do more than trap us in small areas, out of sight and mind, rotting away in front of a TV?
Help me build this. You can market the breakthroughs to make a profit! Call it a personal mobility vehicle or device, and address last mile transport! Hone the nuances of self driving tech without having the dangers of high speed car crashes! Develop longer lasting, more efficient batteries and motors, working on a smaller less expensive scale. Think of the possibilities this might bring to your company and brand!
If you offer your support, I will gladly speak for your company, be it on this blog, or painting the race team colors, or designing special decals or custom paint job for your company. I would gladly add decals to the chair for other sponsors, in strategic places, and wear company logos and merchandise for those companies that would support this project. I would speak often about the technology and the innovation provided for this project. For a small investment, you then get a loyal fan and more advertising than you could buy for such a cheap price, and the charity story would add to the appeal. Think, helping disabled people that normally might not be able to use your products, such as high end cars, or tools, or athletic gear, or sports gear, electronics, or even food and clothes, now being supported in breaking through barriers of mobility.
But I need help. I have ALS, and don’t have the strength or the timeline to do the work myself. I also don’t have the unlimited time of friends and family who have been so generous already in helping me bring this dream to reality. I cannot burden them more than I have been.
Therefore, I ask your help. You have the expertise, you have the money, materials, engineers, programming support, and other support. I ask this in the hope that this could turn a profit for you, thinking out of the box. I beg you to consider this open letter and respond with open minds. I know perfect is not for real, but maybe we can get closer.
Thank you so much for your time.
As I said earlier, I’ll be writing an update on the wheelchair project I have going on. If you are interested, welcome to my brain. If you are looking for deep thoughts, this might not be the right post for you.
To the left here is a Permobil power chair, front wheel drive, “indoor/outdoor”. Permobil is one of the frontrunner companies in the wheelchair business here in the US, and their products aren’t bad at all. If you weren’t crazy like me, this wheelchair would be fine for you. Continue reading “Wheelchair ramble (pun intended)”
Anyone who knows me even a little bit knows that I love gadgets. Either electronic, or mechanical, or even retro old school “technology is bad!” gadgets. Maybe it’s more of a fad? Like, paintball in college….surfing… drawing… woodworking… ok, there is a definite trend.
Anyway, to the point. My first clinical at Johns Hopkins, the physical therapist and I were chatting and we discussed when and if I’d need to be in a wheelchair. My first comment to him was, “I want a fast wheelchair. Seriously.” The little chuckle from my lovely wife confirmed that it’s a gadget, and of course I wanted one. We didn’t talk more about it until a few weeks later when I started looking into the chariot that would become my throne later in life. That went more like this: “Man, these chairs are ugly. And holy cow they look heavy… and they are all so slow!” OK fast forward to the now, and where we are. Without going into the cynical reasons behind the situation, what I’ve decided is that modern tech is not supporting people with disabilities.
There, I said it. Here’s why: Praise God, giant leaps are being made in medicine. Research and development are finding new cures for difficult diseases, and we shouldn’t stop that. What I mean is the people that don’t have a cure, or that are mobility impaired. The mobility industry has not modernized, has not taken advantage of technology to help out those people. Let’s talk about wheelchairs. In summation, modern wheelchairs are steel behemoths, using lead batteries and foam filled tires. We get told which ones we need and which insurance will pay for, and then we adjust our daily lives to fit the wheelchair.
Now, I’m speaking from some experience. We were gifted a trip and my lovely wife made sure we rented a “lightweight” scooter so I could get around. And that scooter was still heavy…. and only had a 6hr use time. What?! I had to baby the throttle and NOT use it often so to save battery so it would last all day, and even then, it died on my or the fuse flipped because I “pushed it too hard”.
My trusty steed
OK, so what, Joe? At the end of the day, profits drive companies, right? And, there have been big improvements in power recline and tilt capabilities, right? Yeah, you are right, and I don’t want to take that away.
But, there are F1 and Indy and Formula E race cars out there that go 200mph and more, and they are made completely out of carbon fiber. There are self driving cars that take you where you want to go with only minor monitoring from the driver. There are electric cars that can go 0-200mph with a 350 mile range. Heck, there are go-karts made out of carbon fiber. The art of the possible is more pronounced right now than ever before! But I got 6 hours from a lead battery, a heavy steel frame, and an unresponsive motor with a top speed of 4mph. And to be frank… man it’s ugly.
I know. This is a fad. I have ALS, and won’t be able to go fast and eventually won’t even be able to drive a wheelchair around. Be happy with what I have, and can get, right? Well… why? I see a niche in the market that is unaddressed. I see a need that isn’t being met for people with disabilities that need power wheelchairs. There is great opportunity!
Well, I want to make the carbon fiber electric wheelchair. I want it to be beautiful, light, efficient, high endurance, and fast. And it wouldn’t be for me only. A carbon fiber base/monocoque can be mass produced and seating accommodations can be customized. Lithium type batteries are getting cheaper and more and more companies are testing them. Now, while I have time, I want to make this a reality for now and beyond, not just for ALS patients but anyone that needs a wheelchair. It might be a fad that fades, but I hope not.
Maybe you all can help me push myself to get it built! Team effort?
I promise I won’t be negative every post – hopefully this one captures my passion for this particular problem – I feel very deeply. Hopefully not too angry.