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Category: powerchairs

Getting Andrei’s center mount control ready!

We are very excited that soon Andrei will have his new center mount joystick and other new accessories! We’re getting ready to get it to him and install it later this month!

It has been incredible working with Levan and Bruce and others from Easy Does It Services, who along with Olga have done the bulk of the work here. Along the way, we got fantastic extra help, advice, and supplies from many people — occupational therapy and seating / positioning consultation from Judi Rogers, advice and solidarity from Rose Acampora, masterful phoning up of vendors by Vince Lopez from ILRCSF, and advice, supplies, and support from Morgan Kanninen and Ash from CIL. The collaboration between all of us has been really a joy.

And it is thanks to your donations, that we’re able to do this, GOAT supporters! Thank you very much!

By the end of the month we should be able to post about Andrei enjoying the spring and having a walk with his dog. I would like everyone reading this to appreciate, if they can, the simple freedom of going out side by yourself and choosing your destination, going at your own pace. It is a good feeling.

view of the mounting hardware for a swing-away table on a powerchair

close up of the clear acrylic swing away tray and center mounted mini joystick

close up of mounting hardware

overall view of a powerchair with andrei's joystick installed for testing

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Sidewalk wheelchair repair job

You know how some people dream of their teeth falling out or realizing they have an exam they haven’t studied for and aren’t wearing any pants? My recurring nightmare is usually that I am traveling or at a conference or on a big campus somewhere, alone and a bit lost and my wheelchair either breaks or I realize it has just disappeared.

In these dreams, I am sitting on a sidewalk trying to figure out my next steps. I can walk a little, but only so far at one time and it is quite painful (like, maybe a block on a good day.) On my dream sidewalk I prepare to try and explain to strangers, in a language that I don’t speak, how I got there, that my wheelchair has gone AWOL, and what I need. Mercifully I also am one of those people who realize they’re dreaming, take control of it, and “lucid dream” or simply force myself to wake up.

Let me set the scene for you! It was a beautiful sunny day yesterday in San Francisco. I was on my way to do some errands yesterday and meet my son for lunch, looking forward to my little cruise around Noe Valley which has some cute shops and a Whole Foods. The bus stopped at my corner and the ramp was lowering. Beep beep beeeeeep beep, you know the drill! Then the heart stopping moment where my powerchair would not turn on. It threw an error. Yikes!!! I called out to the bus driver to ask him to wait. Restarted. Same error and then it shut off. More explanations as I beg the bus driver to wait for me to figure things out.

I tried taking my battery out, which is pretty easy for me to do but which was complicated my backpack and a big shopping bag hanging off the back of my chair. That didn’t help. A lady next to me who had her kid in a stroller offered help. I ended up putting the chair into neutral, and asked her for a push down the bus ramp. (Actually she started pushing me while I was still taking off the 2nd rear wheel lever which spun me around and kind of pinched my hand, but good intentions…) Victory, I was on the sidewalk and the bus was able to pull away.

a narrow cracked sidewalk with a stop sign (in spanish) pole blocking passage for wheelchairs

At leisure now, I could consider my options.

A) Call my partner or friends for help. My chair (a Whill Ci from 2018) is fairly easy to break down into three pieces plus the under-seat basket. They could load me and the chair into a cab.

B) The same, but I try to do it myself, maybe with the help of a random kind stranger or a hopefully willing Lyft driver. This is more difficult. Drivers likely to refuse.

C) Call a wheelchair van via Waymo, Fog City, or Uber. The Waymo and Fog City ones are cheaper. I would put the chair back into neutral and ask for a push up the ramp into the van and then get help once I was home. Complication, requires cooperation from driver.

D) Wait for my son, do our bank errand by him pushing me half a block to the bank, then try to get home via A or C with his help though he was busy with some important errands of his own.

None of those sounded great to me.

E) Text or call ILRCSF’s mobile rescue
F) Try and fix it myself

I went for those options, texting Vince that I don’t YET need rescue but I might within the hour.

Onward to beautiful, GOAT-like, Option F! Take all the million bags and backpack off the chair. Disassemble the chair. I am now sitting in a heap of bags, my walking cane, and wheelchair parts, and my TRUSTY GOAT FIX IT KIT toolbag!!!

And I’m googling “error code 00, whill ci”! Ok, check the electrical contacts, maybe it is the battery, I take out the battery and spit shine the metal a bit with the rag from my Fix It Kit. The battery housing also has two things that look kind of like spark plugs which can go out of whack, so I wiggled them around to teach them a lesson. Taking off the joystick controller on the chair arm sucks so I just wiggled it firmly hoping that would suffice if something inside was loose.

The problem turned out to be the point where the chair I sit in mounts on the seat pole. That has to be easy to take apart, but also, it’s where the electrical contact between the joystick and motor controller, and the battery and motor, lives! That thing is very oddly designed, kind of floating around not anchored to anything. I remembered suddenly that years ago it had problems which I fixed with some foam mounting tape. I unscrewed the housing of it with my HANDY GOAT FIX IT KIT SCREW DRIVER and stuffed a bunch of gaffer tape from YOU KNOW WHERE underneath the electrical contact. Then put everything together again.

Miraculously this worked and I was able to go about my day and also got to text Vince that I fixed it myself.

Interdependence is great, but sometimes I am so happy not to have to invoke it.

Brunch with my son was lovely. I had banana mascarpone pancakes with marshmallow fluff and bacon on the side.

Donate to GOAT today! $20 can fund a really good wheelchair toolkit that we will give to other wheelchair users for free, at our workshops and on the street to people we meet in our outreach rolls!

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An update on Andrei’s powerchair

Last fall, GOAT started collaborating with Andrei, a wheelchair user in Moldova, to help out with his Permobil F5 joystick issues. Here’s an update! We have ended up in a more long term collaboration between Easy Does It Services, ILRCSF, occupational therapist Judi Rogers, and the CIL in Berkeley to get the necessary equipment and expertise so he can get outside this spring. It has been really delightful getting to know Andrei and working with everyone!

screenshot of a zoom meeting with Andrei and family, Olga, and Liz

While Andrei’s fluency in English is great, we end up with our meetings half in Russian and half in English since Levan and Olga both also speak Russian. I turn on Google Translate in my phone to get near-instant written translation of the meeting. I have even learned a few Russian words though they are the bare minimum of what you might absorb easily: Yes, No, OK (horosho) and Thanks!

Levan from EDI and Olga are doing a ton of work to provide Andrei with several different options to control his powerchair and also to give him some flexible options for game and computer control that are less dependent on hand strength and dexterity. This includes chin, head, and attendant controls as well as a mini joystick and new armrest/table, new batteries, more positioning / seating options, and all the stuff to mount these things onto the chair. Some of that is from scavenged or donated supplies and some is new (funded by YOU!)

Andrei already experiments with his computer control setup a lot, so I am always learning about new software from him. For example, he recommends Handy as free and open source software for speech to text. As a bonus it is very privacy protecting (and fast) as it doesn’t send your voice or text to the cloud, it works locally on your devices and is highly customizable.  He also talked a bit about VoiceBot, which sounds interesting, but is less free. And this device called a Razer Tartarus, extremely cool visually, which used to work well for him, but which now he needs to adapt in some way so that he can control it.

Bruce is always sending new ideas and contacting manufactorers for potential devices, like mouth control via the MouthPad , and others have stepped in to suggest drug therapies that can slow the progression of Andrei’s condition, something that will become possible if either Genentech opens a deal for compassionate therapy with his country, or if his dual citizenship with his father’s country comes through.

We have planned out Olga’s visit to Moldova, but have not yet pinned down a travel date. It should be pretty close, though. We are thinking if not before, then maybe in March just after we get back from the CSUN Assistive Technology conference.

Thank you for all your donations that are making this collaboration possible!

The point that comes through very strongly in this project ,as well as even our most casual workshop, is that THE TECHNOLOGY IS NOT ENOUGH. You can have the fanciest,  most expensive assistive tech in the world, and it means nothing if you don’t have expert help or advice in making it work for you — the role of occupational or rehab therapists.  AND, you need resources for maintenance, repair, spare parts, service manuals, and help to implement all of this, which is also something that can’t be done in one half hour encounter, you need to try things, iterate, and adjust in collaboration.

We all need a “pit crew” to keep us rolling!

 

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