NIOP Phase III - Produce Footage for NIOP Video Series, Q-C Adapters & Continued NIOP R&D

Well I guess I have to reply. I just posted on the e-nable hub some data we collected for functionality. I had that data for about a month and kept meaning to post it. But saw this so figured I should.

So i have lots of thoughts to this discussion. And want to be as constructive as I can.

Firstly, I am working on a Kwawu 3. It will have many improvements to it. but, i will say all of the improvements to the hand will be incremental. The vast majority of improvements will be to fit the arm socket better. Of the hundreds or more recipients I have interacted with it is the comfort and fit of the socket to the arm that needs improvement. Not surprisingly it is the socket fit that prosthetists claim is the hardest part to get right. Along those lines fitting the new kwawu 3 will be more sophisticated, not less. It will require either a scan of the arm or many circumference measurements, spaced evenly down the arm.

My goal with Kwawu 2 and Kwawu 3 is to make a transradial arm that is nearly as functional as what a professional prosthetist would provide at a fraction the cost and required expertise. So balancing function, cost, and ease of build is always on my mind. But, I am assuming a builder who is interested in learning the craft of building a prosthetic, even if it is as a hobbyist. So I am not interested in a device that is easy to build but not functional.

Right now my goal is to match functionality of professionally provided manual prosthetics. I do believe in the long term some electronic prosthetics will be amazing. But, right now, I am trying to meet the need for those who cannot afford any professional device, either in the USA or developing world.

I am surprised by Bob's statement that the Kwawu is functionally useless. I would love followup data for that conclusion. It is true, I have received feedback from many recipients that they do not use the device. Generally the reason falls into two categories. The first and most common is that most transradial recipients don't need any device to function well. Basically these people have abandoned any previously provided professional device as useless as well. They sometimes say the Kwawu is more useful than anything they had before because it is lighter. The second reason is because the device was improperly assembled. Usually the maker has used ShoreHardness 95 TPU or just strung the hand wrong. I will make the text BIGGER about ONLY USE SHORE HARDNESS 85 TPU or less. And I do need to make more videos about stringing the hand. I just received a great new assembly manual, that TJ made as part of his Eagle Scout project. I will replace the current PDF on thingiverse in the next few days.

So I agree with Jon's conclusions about this particular proposal. It should be kept focused. More instructional videos would be useful. But I disagree with the reasons. I think e-nable needs to be clear about its goals for any one device. I think there are several different goals that are not mutually exclusive. I think very easy to build devices, like Phoenix hand and unlimbited arm are great for raising awareness of limb differences. The eductional pedagogy of those devices is also invaluable. But to match what a professional who has a four year medical degree would build, is going to take a bit more than a one weekend commitment to learning how to make.

Thanks Jaq. Very constructive and informative. Looking forward to continuing the conversation!

I voted to agree Mr Nate about his proposal because i tested his device and i know the feedback but if you want some photos and videos to support his proposal i can help him especially that i know how to make the NIOP System and i have a huge number of amputee so that I'll give you the feedback quickly.

What's your opinion?

Your input would be great. Detail should perhaps go into the NIOP space on the hub.

@Ahmad Alhaj Moussa Your feedback from recipient volunteers would be super! Here is the link - post whatever you have here and I can help pull some of it together:
https://hub.e-nable.org/s/niop-no-insurance-optimized-prosthetics/space/space/home

@Ahmad Alhaj Moussa yes, please, if you can help document how the amputees like the NIOP system(s) you're familiar with, that would be great. (As Jon said, go into the NIOP space on the hub for that is best....)

I think Jon, Bob and Eric all made valid points. So @Nate Munro , buddy, I'm sorry but I will abstain for now. If you make the changes Jon suggested, I'll change my vote.

(Looks like you may win it, anyway!?!🖖😎)

Let us know, Nate.

@Leland Green I think you didn't Abstain. You just didn't vote. Turns out there's a difference ;-)

I claim a senior moment. (Corrected.)

Thank you for pointing it out with humor. I laughed when I read it. ✌️🙂

@Bob Rieger @Jon Schull @Jacquin Buchanan @Leland Green @Ahmad Alhaj Moussa @Anthony Rork @Shawn Mathiesen

While all very insightful and thorough, the one consistent theme I’ve gathered from all the comments so far is that no one but me has any real concern for my survival here, which to be honest has become my principle concern in this now.  My back is completely up against the wall and I’m worried about being homeless in a week, so I think it’s fair to say we have completely different priorities right now.  I definitely don’t feel any sense of urgency from the crowd, which is extremely frustrating to see everyone so blase about this proposal when I’m facing such serious life changing problems in a few days.

I don't know how to underscore the point more that the house around me is proverbially on fire, other than yesterday Jon had to pay my cable bill just so I could get back online and reply to these comments.  Otherwise I was dead in the water and completely cut off from the community, over a stinking cable bill.  Being evicted will be much harder to fix and leave me pretty sore if I get snubbed after all I’ve invested in this project.  

I'd like to lead with three points,

we all seem to be in agreement on shooting the assembly videos,

all the terms laid out in this proposal are based on my current logistical constraints,

and while I agree with both Bob and Jon’s comments that the community needs a more functional hand, I do not have the resources to dedicate to that right now, and using this as a way to force my hand to have to take a job that I can’t possibly deliver on right now is not a responsible choice for us either.

I’d like to have all your support, but I'm strong enough with my resolve that I can respect your position and still have to do what I feel is right as the one who is responsible for my team.  As I stated offline, I have to be able to implement and actualize whatever requests are brought to us, and there are big holes in changing these plans up without addressing all the other factors.

I’d like it to be noted that all these suggestions had logistical issues which I had laid out in detail offline, and will summarize here, but I had many concerns that were unanswered.

• The tasks I presented here in Phase III were ones that I believe the team can accomplish by the dates I gave in the timetable, based on many factors, and can’t just be changed without addressing those factors, plus it is very complicated and easy to misstep when you’re not aware of all the issues that are in play.

• As I understand it, employees get directives, volunteers work under their own choice, and that’s how I run my team.  Although money changes hands with grants, this is a volunteer position bound by the terms defined in the proposal only, not others’ desires.  Those terms presented were established through process and can’t be changed that easily although I appreciate the feedback

• I will gladly address these new requests for an articulated (or super-simple) hand in a Phase IV proposal, presuming I don’t become homeless

• The articulated hand project will take around 5-6 mos, cost around $10k-$12k and need clearly defined project goals with a work order, brought forward through a community-driven process.

• You will most likely need multiple designs to accommodate all the community’s needs.  It is a very tall order to make a functional articulated hand that is also easy to print, build, and is durable.

• IMO the new hand design(s) should be conceived in a roundtable with a small group of experts like Jacq, Bob, Ahmad, Everton, myself and others, reviewed by the community and voted on to see what they actually need.  Simple vs articulated vs professional grade.  Agreed, all are needed, but amorphous goals with moving targets makes this an impossible project to accurately estimate the work required going in, and extremely prone to changes while in design, making it impossible to finish without clearly defined goals made at the onset.  As a seasoned proj mgr, this is not a wise project for me to accept without more thought being put into the concept and delivery.

• This would require it to be my principle project, which I do not have time for right now with all my other obligations

• No one has addressed the constraints I have placed on me by the SSA and the Dept of Vocational Rehab (DVR), which are some of the primary factors in my decisions here.

• A project that large will violate my terms with the SSA and DVR, will end my disability, effectively doubling the design fees for the proposal, upset the grant funding, and cost me add’l fines. I am not interested in doing projects for less than poverty wages anymore anyway, so it's not fair to just cut my pay to make the numbers work, because that doesn't work. Been there, done that, and not goin' back. 

• DVR is matching these funds as part of my grant to start a new business, but that opens a whole new can of worms to explain, so I’m sparing you a lot of extraneous info that is critical for my NPO in regard to getting the add’l funding. If you're interested we can discuss it off this thread.

• Changing the body or terms of the proposal now, after the fact, doesn’t seem fair to all those who have already voted and approved it as-is.  We already had over ¾ of the votes unanimously approving this before it was derailed.  IMO it would start to debase the integrity of the entire process of voting to go back now just to add riders that earmark pet projects.  That’s exactly what people hate about congress, and IMO they’re a perfect example of what not to do to gain community support.

To the points that “I’m” doing too much, or the proposal isn’t focused enough:

• My main concern and focus for a few months is on grant writing and we are making the changes necessary within the team's workflow to accommodate that

• I do way more than this, so put on your seatbelts. The process with DVR can't stop now that it's started so if you're faint hearted, hold on tight or get off the ride. The only way out is straight through the heart of it. I'm not scared of the game plan, but it'd be best if we all weren't distracting the driver while he's concentrating on finishing the race.

• The NIOP team is capable of a lot more than my efforts alone, and although I do a lot, those results reflect the other teammates' efforts as well, allowing me to only hold a project manager’s role in many of those misc items listed. Those catch-all statements are there to gloss over many of the great things we have going on because there's too many to list without scaring everyone. As we can see, this was a completely valid concern for me to hold by what's been demonstrated in the torrent of comments just three lines created from this proposal.

• Yes, those catch-alls are non-committal and wishy-washy by design.

Specifically about the team's impacts affecting my time invested:

• The parts for the videos are already printed so I just set up the tripod to film Lorenzo as he puts them all together for the videos.  I’m writing music for them but other than that, the assembly videos won’t require much of my focus after we get set up.

• Ahmad is heading up our R&D for leg devices where they need them badly in Syria.  I appreciate Eric’s reservations about hobbyists making them here, but they are needed there and being made by professionals.  I am going to have a prototype made so that my prosthetist can critique it locally.  Even though it’s not popular right now, I stand behind my decision to include Ahmad’s work under the NIOP brand and support him however I can.  I am confident that in the future, many people will look back and thank us for my conviction now. There are 7x's as many lower amps as upper amps in the US and as we can clearly see now with the pandemic we arguably have one of the worst, if not the worst health care system in the world, as far as our potential matching the patient outcomes. All the lower limb amps in the US need us to have working open-source leg designs available too, even if they're trickier designs. They're getting screwed just like I was in 2017 with no prosthetic. We can fix that, and all I have to do is stay out of Ahmad's way, let him do it, and promote his awesome work. I hope that helps explain, but there should be no issue there. BTW - a big round of applause for Ahmad and the Smarthand crew!! 👏👏👏🎉 They've been a huge asset for the NIOP team.

• Anthony Rork in my chapter has a doctorate in Physical Therapy, and is currently in training to specialize in Lower Extremity (LE) devices.  He is making an Ankle Foot Othotic (AFO) device for an individual who runs the Nation of Makers.  That recipient Joel, has a wealth of information and contacts, so Anthony is getting him hooked up with the AFO for his final project from his training, while simultaneously crushing it for marketing.  Joel with his network of makers will be a key element in our chapter’s future, and in turn the whole e-NABLE community.  Plus this is helping Anthony learn to do design with f360, and we get to be one of the national leaders in the field, gaining instant 'market share' with open-source LE devices.  As a PT who is also a designer, Anthony will make great things for people to help train in adaptive situations.  I was one of those guys just a few years ago.  I fully support and stand behind Anthony’s efforts as well as his continued education, which will ultimately benefit us, and the rest of the world.

• Shawn Mathisen who also has been doing all the NIOP OpenSCAD programming, created another version of the Kwawu Bionic with her husband Earl that is loaded with great new features, including a joystick to control the grip selection.  Similar to my discovery of Jacq and the Kwawu, I immediately deferred to her design for R&D, as it was further along than the one we were already working on.  I would be a fool not to fully support and include her work too.  She's a sweetheart who made the arm custom for me, and no one can complain about that hand's performance! She's a rock star in my book. I’m really blessed to get to work with such talented folks, why wouldn’t I showcase and share their contributions too? Besides, that arm is totally worth bragging about!

• As you can see, many of the items people were taking issue with, aren't even real issues. They were just political statements to cover some of the other incidentals that we're benefiting from the team being such a prolific source of creativity and good for the world.

Comments on Adapters:

• Adapters are simpler designs for us to crank out and in many cases only one or two printed parts.

• The adapters are more functional for those specific tasks than our hands no matter what we do.  Hooks are more functional than hands.  Little known fact, most upper limb amp’s only use their expensive myo arms passively (turned off).  Hand function is important, but no mechanical hand is very functional compared to a real hand.  Sorry that’s not a real thing, even with professional devices.  Definitely not 3d printed open-source designs at the moment.  We need to keep our expectations realistic and understand that even a $16K myo device like mine, which I even power up and use, still is not very functional or reliable.  Hands are incredible machines that are very difficult to replicate, and the Kwawu actually does pretty good and no one can argue that it looks great.  I just showed Bob a strap system that will increase grip strength on any hand too, so the immediate solution may not even be in changing the hand design, although that certainly could help. I would defer to Jacq as the expert on this. He has put more R&D into this than about anyone, and Everton is collecting clinical data to support us from his team working with Doctors Without Borders in Brazil. 

• Adapters are all being produced by others in the team, to allow me the time to concentrate on grant writing, registering our org, marketing, and creating the infrastructure to be able to accept larger grant awards.  This is time intensive and much more important than design work for the moment because we’re in process with the DVR for their grant program.  Once the business is established, and we've secured the DVR grant and matching funds we will have time and money to create new opportunities for the community to fund projects like this and the articulated hand project, and actually have time to do the work.

• The idea with the adapters is not so much the adapters themselves as the idea of getting developers to make their own Q-C adapters for daily tasks so we can build a library of adapters for every task you can think of.  I could tell Jacq totally got it, and he’s my target audience there, so I think it just proved that it will catch designers attention and get their gears turning.

In closing:

• We’re debating over $4k, and just the extra time added on this week is making my situation worse day by day.  I just got the money out of my change jar to buy a gallon of milk so I could push this deadline back to Fri.  If you couldn't tell I’m not having fun while this is going on. I probably live in a completely different world than most of you.  Part of my complaints offline were about the awful quality of life that goes along with this level of scant funding and the suffering and sacrifice that it creates.  That’s why I’m creating new options for funding that will hopefully address some of the shortfalls with being a grantee within this system.

• As far as I saw, no one has considered impacts from e-NABLEcon (or the other events I’m booked for) in Oct which will make that month chaotic or a possible civil war/social unrest in Nov-Jan '21, which in the latter’s case hopefully is not going to happen, but need to be accounted for as possibilities in any contract I would be agreeing to. The Phase III proposal has addressed these points and ends before unrest would conceivably be able to stop society in Nov, when we can reassess the situation moving forward to Phase IV.

• Debating these semantics has already forced me to find other work.

• This is sketchy enough with everyone playing games with my livelyhood, I’m halting the NIOP activities and switching to doing CAD work for clients in the short term until there is some sort of resolution that looks like I’ll have some stability in my life.  I’ll switch back when and if the proposal is approved.  I have to look out for me now, especially if I’m the only one who’s on duty.

So you can see there’s a lot more going on than most would care to know about, but to be fair to me, no one wants to hear it all, so we’re stuck with me being the only one who really understands all the factors in play.  Please have a little faith in my abilities as an accomplished team leader and show some grace so I can get through what is arguably the worst time in our country’s history.  The idea of being homeless right now is scary as hell to me being disabled, as you might imagine.

I want to give a shout out to Jacq for how he handled himself.  Great points as always, but I can take note of what things he wanted to see done with this proposal as well as in the future, and still be able to continue living in my house.  Bravo Sir, I really appreciate your candor in being supportive of me and the team. (PS and I'm also really stoked to hear about the K3!!)

I’ve already invested too much of my time in this and it’s not feasible to spend any more without some return.  I appreciate the feedback but I’m so stocked up on problems, and short on time, I’ll just leave it in fate’s hands now.  Hopefully it all works out.  I appreciate your support, but I’ll always have a special appreciation for those that supported me first and without question, and definitely those that came to my aid when I needed it most and backed me when I stood up for what I believed was right.  I was deeply humbled to read those comments, thank you.  That’s what makes this worth doing even when it makes my life really difficult to do it.

Nate

@ebubar @Ben sorry I missed tagging you in my reply above