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GOAT Posts

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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Tune Up Tuesdays: Feb. 17th at ILRCSF

a colorful zine and some tools coming out of a zippered pencil pouchGOAT is now co-hosting monthly wheelchair maintenance workshops along with Vince Lopez from ILRCSF!

Our first Tune Up Tuesday will be held at the ILRCSF office.

When: Tuesday, Feb. 17, 2:30pm – 4:30pm
Where: ILRCSF, 825 Howard St, San Francisco
Register: Contact Vince, 415-609-2555 or vincent@ilrcsf.org

We can inspect your mobility device together, talk about anything about your chair that is causing you trouble, do some basic maintenance, teach you preventative maintenance, and share free tools and materials.

Users of manual wheelchairs, powerchair, scooter, rollators, and other mobility equipment, and their friends and family, are welcome to drop by!

We can also help you to find the service manual and user manual for your own device, and get it to you in a paper or an electronic copy.

GOAT has free mini-toolkits to give out along with a short guide on San Francisco repair, DIY, and assistive tech resources!

A longer guide covering wheelchair repair in the larger San Francisco Bay Area is updated regularly by the Center for Independent Living’s tech staff.

We also often have free accessories like cargo nets, headlights, bags or pouches, and so on. And we’re happy to work with you to improve what you have now, so that it meets your needs.

Finally, if you are interested in learning wheelchair maintenance and repair, either to support yourself and friends, or as a possible career, come by and help out as a volunteer!

Our March Tune up Tuesday will be hosted at the Disability Cultural Center. We plan to host it there regularly!

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A Walk in the Park

Andrei hasn’t been outside in over a year. His secondhand powerchair needs a new micro joystick and other improvements, and that joystick will need new programming and a swiveling arm mount. From a chance contact on the r/wheelchairs Reddit forum, Grassroots Open Assistive Tech pulled together a team of disabled activists and experts who are working with Andrei to get refurbished, customized mobility gear to him in Moldova, along with an assistive tech expert to implement and test it.

Please donate to get Andrei back outside! He’d like to take his dog for a walk in the park!

Donations to GOAT this week will go towards Andrei’s project.

andrei, wheelchair user with dark hair, holding his dog Bobby

“After buying an electric wheelchair, my life changed dramatically. I felt a freedom I had never had before. I literally cried the first time I went outside. I was able to drive about 200-300 meters down the road. I was dizzy, but I was happy. I was no longer tied to the house and my room. Before that, I could only go out into our yard with its awkward slope and stand still, or 2-3 times a year I was taken along bad roads to the park or lake. I started going for daily walks with my mother, and then sometimes on my own. Those were probably the happiest years of my life.”
– Andrei

You can read Andrei’s full story in his own words along with more details about this project in a longer post: Let’s Get Andrei Rolling Again.

a man in a power wheelchair on the street, with a little dog riding in a backpack hanging behind him
Andrei providing taxi service for his dog, Bobby
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