Google continuing to make a home "smart" for those with disabilities

We’ve been a strong proponent of applying technology to allow for greater independence of those with disabilities and have collaborated with leading companies to help the SCI community become more comfortable using such technology that could unleash a lot of their tools and apps to enable us to do more on our own. To its credit, Google has been a leader in making its products and services more accessible for those with disabilities.

Patrick Clary, Google Assistant Engineering Product Manager

Patrick Clary, Google Assistant Engineering Product Manager

One of the areas that Google has been leading is the integration of its Google Smart Devices to enable the use of everything from a thermostat, TV, lights, door opening, external cameras, phone and more by someone with limited or no mobility. The really cool thing we wanted to share is that a good friend of NorCal SCI, Patrick Clary, is a Google Assistant Engineering Product Manager who also happens to be a paraplegic and wheelchair user. Check out THIS VIDEO where he shares how he uses Google’s Assistant devices to control a variety of devices and tasks at his home.

But to get a fuller picture of how Google’s various apps and tools can help you achieve greater independence, check out their YOUTUBE PLAYLIST where you can find step-by-step tutorials to learn how to interact with your Assistant, from setting up your Assistant-enabled device to using your voice to control your home appliances.

SCI community grateful to San Luis Obispo’s Mae McDonald following 20 years of service

After 20 years of unwavering support for the San Luis Obispo Access Group, 83-year-old Mae McDonald is stepping down as the leader of the group passing the baton on to Mike Ward.

Mae (on the left) and Mike in the center, surrounded by members of NorCal SCI’s Mobile Clinic team in 2018.

Mae (on the left) and Mike in the center, surrounded by members of NorCal SCI’s Mobile Clinic team in 2018.

A special message from Mike Ward:
22 Years ago, Mae came to my side to support me and my family when I broke my neck after a bike accident resulting in a C5 Asia A SCI. Mae and her husband John did amazing things for me and to this day, Mae still continues to be a big part of my life.

One of the first things she did was to encourage me to attend a disability group called SLO Access and honestly, the last thing I wanted to do was attend such a meeting. Mae 'convinced' me to go and even accompanied me to the meetings. I then began to see the value in joining a fellowship, sharing knowledge and having lots of fun and laughter even if you were sick or in a wheelchair. Not only did Mae bring me to this meeting, she came over once a week to clean my house, care for my children, provided us with meals and did everything in her ability to support us. Mae and her husband John were heroes!

Because of Mae's commitment and loving support, the SLO Access Group has continued to provide support and fellowship to newly injured or long-term disabled individuals and their loved ones. There have been numerous occasions when the group began to splinter or even fall apart but Mae would bring everyone back together with her wisdom and loving guidance.

"Thank you Mae for your many, many years of commitment, support and encouragement. You have touched us all in so many ways, we love you and are deeply grateful for what you have done.

Mae and Nick

Mae and Nick

NorCal SCI co-founder, Nick Struthers, first met Mae MacDonald in January of 2018 while presenting at the SLO Access Group and instantly hit it off with a fellow Scot. Nick was a beneficiary of Mae's legendary hospitality and learned much about Mae's own remarkable journey from a challenging childhood in Glasgow, Scotland where she clearly developed her resilience. At the age of 18, she seized the opportunity to come to New York to begin a new life like many immigrants before and after her. There, she met her future husband, John McDonald before moving to the West Coast in the late 1960s and started to raise a family. Mae has three sons and now has seven grand children and three great grand children. Nick witnessed first hand Mae's commitment and loving guidance towards the SCI community in SLO and relied on her to make the first SCI Mobile Clinic in 2018 a success in SLO.

We, at NorCal SCI, are honored to recognize Mae's endless support to the SCI community over the past two decades and are looking forward to spending some time with this truly special woman when we visit SLO at our next Mobile Clinic in September.

We are also excited to know that the group's leadership is in Mike's capable hands and are committed to do what we can to support Mike in his efforts to serve the SLO’s disability community.

NorCal SCI sets Sept. 21 for 2nd Annual Free SCI Mobile Clinic in San Luis Obispo

We are excited to announce a return trip on Sat., Sept. 21st to San Luis Obispo where we’d be hosting our Second Annual SCI Mobile Clinic that provides the opportunity to have a free consultation with medical professionals with specific expertise in SCI/D. Once again, we will have a Nurse Practitioner, an Occupational Therapist and a Physical Therapist who specialize in Spinal Cord Injury medicine meet at the SLO Noor Foundation Clinic.

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The Nurse Practitioner specializes in spasticity and is knowledgeable in skin care and bowel and bladder care while the OT and PT, between them, have many years of experience treating individuals specifically with SCI/D.

Last year’s visit marked the first-ever Mobile Clinic we hosted and were quite pleased not only with the turnout but the feedback we received from those who participated. But, whether you wish to participate or not, we invite members of the SCI community to come to the site of the Mobile Clinic and enjoy some refreshments, camaraderie and peer mentoring with us. We can also share with you the various programs and services we provide that may be of assistance to you as well as learn about the deficiencies in your community and how we can help advocate better for the SCI community.

The Clinic’s location is 1428 Phillips Lane, Suite B-4 in San Luis Obispo and you can learn more and sign up for the Mobile Clinic HERE.

High Fives Foundation hosts Hangouts on Aug. 3 in Truckee and Alameda

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Through a series of events, Truckee-based High Fives Foundation hopes to connect like-minded individuals to build a community of support, fun, and inclusivity. In doing so, they have hosted Hangouts over the past several months with the goal of bringing together the broader community of individuals who have been impacted by life-changing injuries and have now scheduled Aug. 3rd for their Hangouts in Alameda and Truckee.

Participation at the Hangouts is not limited to individuals who have been exposed to a life-changing injury; friends, family, caregivers, practitioners, and anyone who would like to learn more and be involved is also welcomed. The Alameda Hangout runs from 12-3 p.m. at Off The Grid food truck rodeo located at 535 South Shore Center West. You can register to attend HERE. The Truckee Hangout runs from 2-5 p.m. at the Truckee Bike Park located at 2200 Joerger Drive. You can register to attend HERE.

Roll on Capitol Hill, a trip full of adventure and advocacy work

Carl in front of Congresswoman Barbara Lee

Carl in front of Congresswoman Barbara Lee

For the second year in a row, NorCal SCI’s Carl McGrew made the cross country trip to join his fellow peers in the 8th Annual Roll on Capitol Hill in Washington, D.C., an event organized by the United Spinal Association to advocate on behalf of persons with mobility disabilities with members of the U.S. Congress on issues that have direct impact on this community.  Just like last year, Carl’s trip was filled with surprises, pleasant ones as well as the non-pleasant ones that are captured in his summary below.

“My flight on American Airlines was from San Jose to D.C. with a stop in Dallas,” recalls Carl.  Before boarding the flight in San Jose, he went to the bathroom to relieve himself and didn’t realize until he boarded the plane that he had left his transfer board behind in the bathroom.  Fortunately for Carl, the staff was able to retrieve the board and hand it to him.  Dodged a bullet!

Carl’s adventures were just beginning upon arrival at the Reagan Airport in D.C.  “Once I was transferred on to the aisle chair and taken to the jetway, where I was expecting my wheelchair to be brought, I was notified that due to the failure of the staff to tag the wheelchair to be brought to the jetway, it was instead sent to baggage claim,” said Carl.  The staff retrieved an airport wheelchair and pushed Carl to the baggage claim where he retrieved and transferred into his own wheelchair and left for his hotel.

Congressman Brian Mast of Florida

Congressman Brian Mast of Florida

“Upon arriving at my hotel room, I was pleasantly surprised that the door had an automatic open button, something I had never seen before,” explained Carl.  The room was spacious with open spaces on both sides of the 30” high bed which was great for him.  The bathroom was equally accessible, too.  Overall, he liked what he saw.

In a bit of an irony, the event’s first day featured training organized by United Spinal, held on the third floor of the hotel’s basement where for nearly 100 wheelchair users, there was one elevator accommodating a maximum of three wheelchairs at a time, along with two bathrooms for males and females with each featuring one wheelchair accessible stall.  It shows we’re still a long way from having full access. 

After a full day of training and meeting his fellow peers, it was on to the Capitol Hill where Carl and the group met mostly with legislative aides for several members of the Congress.  This year, ROCH focused on general issues in our community rather than specific legislation, like last year. There is a great deal of interest in autonomous driving vehicles, with the focus being on “include us in design, rather than adding pieces to an existing vehicle as we do now.  Why are there specific spaces for wheelchairs on buses, light rails and other transportation but not on airplanes,” said Carl.

A reception was held that evening in a different congressional office building where awards were given to Congressmen Brian Mast of Florida and Frank Pallone of New Jersey.  Congressman Mast was a bomb disposal expert in the Middle East and today he sports a gleaming pair of manufactured legs.  Congressman Pallone has represented his district for 16 terms, with too many achievements to list here.

“It was an excellent time, seeing people from last year and making new friends. The Rolling was successful, and every legislative assistant we spoke to, got a business card from NorCal SCI. Can’t wait till next year,” concluded Carl.

TRULY GROUNDBREAKING: Researchers make compelling case for use of electrical pacemaker for bowel, bladder & sexual functions in SCI

Dr. Creasey showing Kevin Lee (in front) and Ran Tao the electrodes used in the procedure.

Dr. Creasey showing Kevin Lee (in front) and Ran Tao the electrodes used in the procedure.

It was a highly-anticipated evening on July 11th when noted researchers Dr. Harminder Singh and Dr. Graham Creasey shared their presentation at an SCI Connections meeting in San Jose for an FDA-approved U.S. clinical trial (the only one in the world) involving the use of a device similar to a pacemaker that would be implanted under the skin in the front area of the waist with wires routed under the skin to the base of the spine and implanted on top of the nerves at the S3/S4 levels responsible for one’s bowel and bladder functions (and for males, achieving erection). They demonstrated how the remote-controlled pacemaker stimulates these nerves, getting them to empty the bladder and bowels as well as a male achieving an erection, all without cutting the sensory nerves, a first-of-its-kind procedure.

NOTE FROM NORCAL SCI: We will soon post the recorded presentation including the videos shown at the presentation.

But before you get too excited, we want to share a few of the high-level requirements and parameters for participating in this trial as it’s not meant for everyone:

  • You must be at least 22 years old with a Complete ASIA A Spinal Cord Injury at C4 and below. This was set up to keep the study simple.

  • You must also be at least two years post injury to be eligible.

  • They’re only recruiting 10 participants for this round and just completed the procedure on their first participant, a 60-year-old female.

  • Though the trials are being held in California for now, anyone can apply but if they are accepted into the study, while all the study-related expenses will be covered, all the travel and housing expenses will be the participant’s responsibility.

The nerve stimulator has been commercially available in Britain and other countries since 1982 and has been used in thousands of patients with SCI to improve bladder, bowel and sexual function.  It was approved by the FDA in 1998 and available in the U.S. for many years before the company that made the device went bankrupt.  However, that old approach involved the cutting of sensory nerves to reduce reflex contraction of the bladder.  The new clinical trial does not cut any nerves, a remarkable breakthrough.

Left to right: Dr. Creasey and Dr. Singh

Left to right: Dr. Creasey and Dr. Singh

In a jaw-dropping segment of the presentation, an x-ray video of a bladder emptying through the electrical stimulation was shown. Over the course of several seconds, a full bladder was slowly emptying, ending with a residual amount of urine left. Dr. Creasey estimates that 95% of the bladder would be emptied using this procedure. He also estimated that 2/3 of fecal matter located closest to the rectum will be emptied as we never truly empty out our bowels, even if able-bodied, since the digestive/intestinal tract is very long. As for erections, a video was shown of a flaccid penis becoming erect following the electrical stimulation and Dr. Creasey pointed out that it can stay erect for as long as the person keeps the electrical stimulation on though lengthy erections are not recommended, at which time, the audience burst out with laughter. The time that it took for the sample demonstration of the erection seemed longer but Dr. Creasey maintained that it’s close to a normal rate and pace of an erection developing. For both males and females, this approach does not result in orgasm and/or ejaculation.

The electrodes used (red pen positioned to simulate size of the electrodes)

The electrodes used (red pen positioned to simulate size of the electrodes)

As for the pacemaker, it does not use battery and, therefore, unlike a pacemaker for heart, it does not need to be removed for battery replacement. The electrodes are not likely to require replacement though that might vary from one individual to another. Overall, this study is expected to result in a dramatic reduction of urinary infections, autonomic dysreflexia, cost of medical supplies and predicable and increased quality of life.

Dr. Singh is a Clinical Associate Professor of Neurosurgery at Stanford University School of Medicine. He serves as Chief of Neurosurgery at Santa Clara Valley Medical Center in San Jose and is the Director of Neurotrauma. Dr. Creasey has worked in spinal cord injury for over 30 years in Britain and the U.S. and is particularly interested in restoring function by information technology, bioengineering, functional electrical stimulation and stem cells.

TO RECEIVE MORE INFORMATION ABOUT THIS CLINICAL TRIAL’S ENROLLMENT ELIGIBILITY, CONTACT:
Michael Prutton, Clinical Research Associate:
michael.prutton@hhs.sccgov.org

Parting ways with your unused durable medical equipment: why it matters

Our current storage space

Our current storage space

Nearly two years ago, we stumbled across an incredible opportunity when we were approach by a wheelchair user who wanted to donate their hoyer lift to us so that someone else who may need one can benefit from it. Now, mind you, this took place shortly after we launched NorCal SCI and we had not made any plans at that time to get involved in something like this. Little did we know that we had stumbled upon an incredible opportunity to be one of the fewest repositories in all of Northern California that accepts donated durable medical equipment, only to give them back free to those who may benefit from such equipment.

Two years later, we have received and distributed equipment with a value of well over $150,000 that operates on one simple premise: if you have durable medical equipment that’s going unused and is in good condition, one of the fellow members of the SCI community may benefit from receiving it. There are countless stories of how such generosity has made a huge difference in the life of the recipient:

  • Two individuals living in homes where the bedrooms and large bathrooms were located upstairs were stunned when they received two stairlifts in almost new condition valued at nearly $25,000.

  • One recently-injured man with a health insurance plan that didn’t pay for a power wheelchair received an almost new top-of-the-line F5 Permobil wheelchair that fit him perfectly, a value of over $15,000.

  • A young quadriplegic seeking an automatic hospital bed scored when we were contacted by the family of a man who passed away before being able to use the bed. The brand new bed was made available to the family of the quadriplegic who literally picked it up within 24 hours, driving to San Francisco all the way from Fresno.

The stories go on but the most wonderful part of what we see is the surprised looks on people’s faces when they realize the equipment is free for their benefit. Some non-profits offer similar programs but they turn around and sell the equipment, often times to help fund other programs. We also didn’t realize this but very few organizations accept donated power wheelchairs, usually due to concerns with the operation of the wheelchair as well as liability. We’re proud to say that we accept power wheelchairs.

And so, look around where you live. Do you have durable medical equipment that’s in good running condition and you no longer use it, other than to hang laundry on? If you do, consider donating it and hopefully, you’ll help someone else who can’t afford purchasing a similar item or their insurance won’t pay for it. We don’t accept medical supplies, however, but we know THIS ORGANIZATION does.

For our part, we decided a month ago to invest $3,500 annually by securing a large storage space in Los Gatos to accommodate our inventory. We’re doing our part to help the SCI community members in need. You can do your part by contacting us via e-mail at info@norcalsci.org or (408) 458-9863 to let us know what you wish to donate. We don’t pick up donated equipment, so you can either bring them to our storage facility or hold on to them until we find an interested party who could pick up your item directly. To see our current inventory of donated equipment, CLICK HERE.

July 27 dinner and comedy show in Roseville to raise funds for Mike Droter's therapy program

Roseville resident, Mike Droter, who suffered a C1-C2 spinal cord injury as a result of a surfing accident in Aug. of 2016, is holding a fundraiser on Sat., July 27th at 6 p.m. featuring dinner and comedy as well as music with tickets at $25 for adults and $15 for kids, with all the proceeds going toward his continuing therapy.

Mike Droter during his therapy session at SCI-FIT Sacramento

Mike Droter during his therapy session at SCI-FIT Sacramento

Mike’s story is one of resiliency in the face of adversity. While he continues to be vent dependent, it has not deterred him from pursuing a continual and aggressive therapy regiment and he has made incredible gains that no one would have predicted given the severity of his injury. NorCal SCI co-founder, Franklin Elieh, visited Mike when he was brought over in the fall of 2016 to Santa Clara Valley Medical Center from Hawaii, the site of his accident. The Rehab Trauma Center at the hospital is often the first department many of the newly-injured go before, hopefully, having a chance to go for therapy. Due to severity of Mike’s injury, he never had a chance to go for therapy and was sent home with a grim prognosis.

“Mike looked very messed up and it was difficult for me to offer him a lot of encouragement without lying to him,” recalled Franklin during his visit with Mike. “But the twinkle in his eyes and his positive attitude in the face of adversity were very much noticeable.” With that recollection of Mike from 2016, it’s been an incredible recovery for Mike that Franklin has witnessed. We wish him all the best and are pulling for his continuing healing and improvement.

This event will be held at Eagles Hall, 124 Vernon St., Roseville. For more information about Mike and this event, see HIS FACEBOOK PAGE.

NOTE FROM NORCAL SCI
We will promote your personal fundraising events on our web site and newsletter.  Just send us the details well in advance to info@norcalsci.org.

Two SCI support groups join forces to better serve the Fresno area

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We’re happy to report that the SCI Support Groups at San Joaquin Valley Rehabilitation Hospital (SJVRH) and the Leon S. Peters Rehabilitation Center at the Community Regional Medical Center (CRMC) in Fresno are combining their individual support groups moving forward and on Wed., July 17th, they will host a movie night featuring the film “Walk, Ride, Rodeo”, a true story of a nationally-ranked rodeo barrel racer who survived a car accident that left her paralyzed.

The evening is free with popcorn and water provided though you may bring your own non-alcoholic beverage and snacks. The film will be shown from 6-8 p.m. at CRMC, 6 West Dayroom, 2823 Fresno St., Fresno. For more information, contact Amber Rabone at (559) 459-2728 or check out their Facebook page.

The organizers are in the process of finalizing a meeting location as well as schedule of activities for each month and will release that information as soon as possible.

Berkeley's CIL to host "preparing meals as a wheelchair user" class on July 24

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The impact of food is a powerful one.  Food provides energy for people, illustrates a person's culture, and brings all types of people together.  Something that important should be accessible for all people.  Come join the Center for Independent Living (CIL) in Berkeley as they seek to explore different tips and tricks for preparing a meal as a wheelchair user as part of a class held on Wed., July 24th from 4-5 p.m.

This free class will be held at The CIL, located at 3075 Adeline Street, Berkeley. You can register for this class HERE.