Balance by Positive Living Magazine

balance what it’s all about

ISSN 1916-7709

NOVEMBER 2017

Peer Mentorship and Support Groups

inside

BY ESTHER KHOR | A few months

1 | Peer Mentorship and Support Groups by Esther Khor

ago, I received a phone call from a very exuberant woman. Her name is Alexandra Guerrero, a patient coordinator from the ALS society. She asked if I would make a presentation to their support group and review PROP’s services for their new members. As a respiratory therapist (RT), I could talk about our application process and the clinical benefits of bilevel therapy. However, something would be missing if I was the only one presenting. So I called Michael Klinkhammer, one of our many clients who volunteers at PROP. Michael has muscular dystrophy and manages his respiratory needs with a bipap unit and mouth-piece ventilation in the daytime. Michael has a sparkling personality and would be a key element in this meeting for the ALS support group.

During the meeting, my RT colleague Sodany and I explained the different aspects of PROP’s services. We let the participants know various devices such as bipaps, ventilators and cough assist machines are accessible at no cost for the user. Ultimately, the equipment can rest their respiratory muscles to minimize the discomforts of laboured breathing. Still there was apprehension from family members and ALS clients on using any type of breathing equipment.

This is where Michael came in. He described his life adjusting to the breathing equipment. Michael’s comforting manner came through as he spoke about his life experiences as an independent person needing 24-hour ventilation.

6 | Tips To Prevent Electrical Fires by Samiko Guest

As the meeting drew to a close, I realized that it takes all sorts of people to provide a successful support system. It started with Alexandra coordinating the event, to the caregivers who assisted the attendees, to the health care professionals who gave therapy options and, most important, the program users who mentor one another.

8 | You Don’t Have to Choose! by Wayne Pogue

7 | A New Way To Adapt Bluetooth Headsets by Jerzy Pacek 7 | Connect With Us Online!

PROP’s program users founded the services and have continued to provide peer mentorship… rain or shine. How wonderful is that. Thank you Michael! l

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2017 AGM

My First Conference

BY RUTH MARZETTI | The BCITS an-

BY SODANY TAING | As I entered my

nual general meeting was held on the October 5 at the Sunset Community Centre. Paul Gauthier gave a talk to the crowded room about CSIL developments. This sparked interesting discussion and questions.

very first conference, my eyes lit up in excitement. “Chest Conference” signs covered the walls and floors of the corridor, as long lines of respected health care workers waited eagerly to register. Registered-check, badge-check, schedule-check.

After Paul was finished, the AGM got to business. Christine Gordon (Chair) and myself (Executive Director) each gave short speeches to summarize the year. It was a quiet year, and the Board and I are continuing to work on a strategic plan for the direction of TIL during this time of changing technology. A report on BCITS finances were presented by our Treasurer, Don Danbrook. The auditor from Tomkins, Wozny, Miller and Co. was present to answer any questions. The elected Board of Directors this year are Anthony Chan, Christine Gordon, Don Danbrook, Ean Price, Ken Kramer, Nancy Paris, Terry Leblanc and Walt Lawrence. We look forward to the year ahead. l

The next things that popped into my mind were, “where do I get my t-shirt” and “where did they get that chest shaped cookie from?” With no sign of the cookies, I opened my Chest Conference app and compared my schedule to the simulation and exhibits that filled each day, and hoped I had time to experience it all.

utilizes High Frequency Chest Wall Oscillation technology to dislodge mucus from the bronchial walls, and mobilizes secretions and mucus from the smaller to larger airways where it can be cleared by coughing or suctioning. For our restricted neuromuscular population, it is recommended to use the cough assist after using the vest. I had the opportunity to try it for myself and turned it to high oscillation. I felt my upper body rumble as the vest oscillated my chest and I could see why this was a hospital favorite. We may see it in BC soon.

Throughout the week, I had the opportunity to attend many great lectures, from Respiratory Management with Airway Clearance Devices, to Respiratory Management of the ALS patient.

After 5 days, I was sad to see the Chest Conference come to an end. In those few days, I met some incredible people from across the world, was introduced to new gadgets, and heard about many studies that improves a person’s quality of life.

“The Vest” is an airway clearance system that’s popular in US hospitals. It

This was a wonderful opportunity. I can’t wait for the next one. l

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TIL Client Total Assessment If you are a client of the Technology for Independent Living program, you can soon be sure that your TIL-provided technology will be assessed with you every two years. What to Expect If we don’t get to visit you within a two-year period, a TIL technologist will be contacting you to complete a technology assessment either by phone or in person. During this assessment, we will be reviewing your current technology, TIL assets (e.g. remotes, phones, switches), technology that could be of more use to you and your contact information. We’ll also be asking you what you think TIL should concentrate on in the future. Returning Unused Equipment During your assessment, if you have any TIL equipment that you are not currently using, we will ask that it be returned to TIL. We will prepare it for use by other TIL clients. Educational Materials In the future, TIL will also be delivering more educational materials on emerging technology that we feel will benefit TIL clients. This information will be delivered through a number of avenues: • • • • •

Twitter (@PROP_TIL “Technology 4 Living”) Facebook (@BCITS “Technology for Living”) LinkedIn (https://tinyurl.com/y92ylrfs) Website blogs (www.bcits.org) and Email

During this initial assessment, you will also have the opportunity to opt out of these educational emails. Contact Us to Start the Process If you’d like to complete an assessment of your TIL information before we get a chance to contact you, please call TIL and ask for Wayne. He will either complete your assessment with you or find a TIL technologist available to complete your assessment. Likewise, if you don’t use TIL equipment anymore and don’t want us to contact you, please call and let us know. Thank you!

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help us fulfill our vision BCITS, proud home of PROP and TIL, is a registered non-profit and charitable organization. The funds to operate these programs come from the Ministry of Health, through the Vancouver Coastal Health region. We are very grateful for this generous support. However, this funding does not cover all the costs to provide equipment to TIL clients. For example, a special telephone for a person with a high level disability can cost as much as $1000 and an automatic door opener can cost $3000. We provide many devices like these to adults–at no cost–to fulfill our vision of people living in the community as independently as possible.

Farewell to Nancy Lear BY RUTH MARZETTI

It is with sadness that we say farewell to Nancy Lear who has worked tirelessly as our Network Support Facilitator for the past two years. She has honoured the long tradition of BCITS’ peer history through creating the video “A History of PROP and TIL through a Peer Lens” (https://www.youtube.com/ watch?v=ZEg_i_0TxlQ) and creating the “History of the Iron Lung” which is available in the history section of our website. In addition to giving one-on-one peer support, Nancy consistently attended peer events; gave talks to groups; helped with fundraising; attended networking events; wrote blogs and, posted on social media. She participated in and judged the Simon Cox Design Competition and helped BCIT students create practical, well-designed items. We will miss her smiling face in our office, but she has promised to continue to be involved in our work through volunteering. We will hold her to it. l

balance march 2017

You can help us continue this work through your donation. Any contribution large or small will be gratefully accepted. 100% of your donation will go toward equipment and assistive devices. Charitable Registration Number 807477070RR0001

I would like to support TIL’s equipment program. o I have enclosed a cheque for $ ______. o I will make a donation by credit card through CanadaHelps.org. [Donate in minutes by clicking on the DONATE button on our home page at www.bcits.org.] o I would like to donate directly by VISA. I will call you at 604-326-0175. Please be sure to fill in all your contact details, so we can send your tax receipt (for donations of $10 or more). NAME ___________________________________________________________ ADDRESS ________________________________________________________ CITY & PROVINCE ___________________________ POSTAL CODE _________ PHONE _____________________________ EMAIL ____________________________________________ Please return form to: BCITS, #103-366 E. Kent Ave S., Vancouver, BC V5X 4N6

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A New Way To Adapt Bluetooth Headsets BY JERZY PACEK | Smartphones are

extremely convenient daily tools for most of us, but for a person with a physical disability, they are a lot more. Imagine driving a power wheelchair in a remote area and something goes wrong. Under these circumstances, the smartphone can literally become a lifeline. With the advent of voice dialing and the development of Bluetooth headsets, people with a physical disability can now make phone calls to request immediate assistance, but also to stay in touch with family, friends and their community. However, Bluetooth headsets have continued to pose technical challenges for the TIL biomed team. Finding Bluetooth headsets that can be easily and effectively adapted to be of use to BCITS members has been difficult. A typical workflow to make a Bluetooth headset work with an external switch (e.g. a sip ‘n’ puff or pressure switch) requires the biomed to open the headset and then solder very fine wires to the circuit board inside. These fine wires dangle from the headset, pulling on the ear and, sooner rather than later, break apart. Adding another layer to this problem is the abundance of Bluetooth headsets out there. Members often purchase their own headset first, based on how well it fits, before asking us to adapt it. Unfortunately, at this point the biomed often cannot adapt the new headset for the member’s use. Up to now, there has not been a universal solution to deal with this problem.

The app works in combination with a smart button that communicates with a smartphone. It is now possible to control common tasks on many smart devices wirelessly, including Bluetooth headsets, without having to take anything apart. Enter a new smartphone app called FLIC. The app works in combination with a smart button that communicates with a smartphone. It is now possible to control common tasks on many smart devices wirelessly, including Bluetooth headsets, without having to take anything apart. The system, developed by the Swedish company Shortcub Labs, is available to all TIL members using newer Android phones or iPhones. Get in touch with a biomed and call us at 604-326-0175, if you would like to install this new system. Please note that BCITS does not endorse any of the companies mentioned in Balance. l

Connect with us online! Twitter, LinkedIn, Facebook

Social media is a powerful tool in today’s world for connecting people and organizations, and spreading news and ideas. At BCITS, we believe in maximizing people’s quality of life as much as possible through technology, so we are excited to announce that PROP and TIL are now on Twitter, LinkedIn and Facebook. We want to connect with our current clients, future clients, professionals and organizations that support people with disabilities and independent living. We will be posting PROP and TIL content on our website www.bcits.org and on the following social media accounts: Twitter: Technologyforliving@PROP_TIL LinkedIn: The BC Association for Individualized Technology and Supports for People with Disabilities (BCITS) Facebook: www.facebook. com/BCITS/ Please help welcome us into the online community by following us! We look forward to connecting with you!

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balance Balance is published three times a year by the BC Association for Individualized Technology and Supports for People with Disabilities (BCITS).

Tips To Prevent Electrical Fires BY SAMIKO GUEST | Does this picture

look familiar–a jumble of cables, all being plugged into one or two outlets?

Content BCITS staff and clients Coordinator Seka Bojbasa Editor | Designer Ann Vrlak BCITS does not research, endorse or guarantee any of the products or services within the magazine. We strongly recommend investigating products and companies before purchasing or using them. We are pleased to have content from Balance reprinted in other publications. Contact us with your request and please cite BCITS, Balance and the edition date when reprinting. BCITS is the home of Technology for Independent Living (TIL) and the Provincial Respiratory Outreach Program (PROP). Mailing Address #103-366 E. Kent Ave South, Vancouver, BC V5X 4N6 TIL Phone 604-326-0175 PROP Phone 1-866-326-1245 Fax 604-326-0176 Email info@bcits.org Web www.bcits.org TIL is funded by the Province of British Columbia Ministry of Health, BC Rehab Foundation (Automatic Door Program) and community fundraising. PROP is funded by the Province of British Columbia Ministry of Health through Vancouver Coastal Health. Publications Mail Agreement No. 41682526

Everybody has done this at one time or another. Sadly, quite a number of fire incidents in the home are caused by electrical failure/misuse. Here are several tips for electrical fire prevention.

Do NOT overload electrical outlets When too much current flows through a circuit, conductors heat up and can get hot enough to start a fire. Limit the number of appliances you connect to one outlet. Average household circuit currents are either 15A (amp) or 20A. You can easily check the amps by reading the fuse requirement on the electrical panel. However, bear in mind that safe operating ranges for appliances are in reality less than 80% of the 15A or 20A ratings. This means approximately 12A for the 15A rated fuse and 16A for the 20A fuses are more within acceptable safety margins.

Check integrity of wires, plugs and outlets Damaged wires, plugs or outlets may cause sparks! Disconnect an electrical appliance by pulling on the actual plug–not on the cord. If a plug doesn’t fit securely into an outlet, the receptacle needs to be replaced. Make sure the cord is firmly plugged into the outlet.

Organize wall outlets and its surroundings Extension cords are meant to be a temporary solution only. Minimize how long you use them. Also, unplug your electrical gadgets when they are not in use. Coil up excess cord length, and tie up the coil with plastic ties or Velcro straps. Keep flammable materials away from outlets.

Use power extension bars with surge protectors This is very important to protect electrical appliances from sudden voltage spikes. Remember: electrical fires are preventable. Safe independent living! l

Use an overload calculator tool to give you a general idea of how many or what type of appliances you can connect safely to an outlet (https:// tinyurl.com/y94urh3d).

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Different Types of Bilevel Interfaces BY PATRICK CHO, RRT There are many options for mask interfaces in the market. A PROP Respiratory Therapist (RT) will guide you through the process and find an interface that is most appropriate for you. Generally, there are three main styles: full face mask, nasal mask, and nasal pillows, each will have their own advantages and disadvantages.

Full Face Mask A full face mask is usually the bulkiest of the bunch because it is designed to cover the nose and the mouth. This style is great for people who are mouth-breathers or have a hard time keeping their mouth closed.

Nasal Pillows On the other side of the spectrum, the nasal pillow interface fits into your nostrils. They are the lightest and smallest out of the three. This option suits people who are claustrophobic and want something that occupies less space. However, some users may find the air shooting directly into their nose uncomfortable.

Nasal Mask The nasal mask falls somewhere in the middle. It seals around the nose.

the Bilevel machine. It can tell us if the leak is acceptable or high. If that is the case, we would suggest trialing a full face mask, using your nasal interface with a chin strap or finding a new interface altogether. • On the topic of leaks, a small amount of leak or a positional leak when you are turning and moving is common. Everyone’s facial features are unique and there are no custom masks available. Most interfaces come in small, medium or large sizes, and this range should cover most users. It is important not to over-tighten your headgear. This may lead to skin breakdown and pressure sores. If the mask is very old and worn down, the cushion may need to be replaced to have a proper seal. With proper maintenance and cleaning, most manufacturers claim their interface should last at least 6-12 months. Having an appropriate and comfortable interface is key for you to be successful on the therapy. If you have any questions, a PROP therapist would be happy to talk to you. l

If you are using a nasal interface, it is very important to keep your mouth closed. Otherwise, the air will go through your nose and leak out from your mouth. You may not realize it unless your spouse or caregiver tells you that your mouth is open, or you wake up with a very dry mouth. One way to confirm the therapy is working to download a report from

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Yes, I Accept Your Invitation to Join BCITS The BC Association for Individualized Technology and Supports for People Please Check One with Disabilities (BCITS) Home of Provincial Respiratory Outreach Program ❏❏ Membership for Registered (PROP) & Technology for Independent Living (TIL) BCITS Clients Please mail completed form to BCITS (the Name: _________________________________________________________ cost of postage constitutes your membership fee) Address: _______________________________________________________ ❏❏ Non-client Membership Please mail completed form along City/Prov: __________________________ Postal Code: _________________ with $20 annual membership fee payable to BCITS. Telephone: _____________________ Email: ___________________________ Please mail this form along with any applicable membership fees to BCITS: #103-366 E. Kent Ave S., Vancouver, BC V5X 4N6. Thank you.

You Don’t Have to Choose! BY WAYNE POGUE | A story circulated

a while ago about a person with a physical disability who had her iPad stolen from her, right outside an Apple store. As people often do, one gentleman immediately stepped up and purchased her a new one. Luckily, she hadn’t had her iPad for long, so she didn’t lose much information on the device. That being said, it can be very scary losing your tablet or smartphone and knowing that your information may be insecure. At TIL, we came across a few situations where clients have had their devices stolen from their wheelchair. Good news: there is a way to protect your device. TIL can offer convenience by mounting the device anywhere it is most usable. However, to add more security to this setup, purchasing a universal tablet lock is an excellent solution. The name may sound confusing, but this lock can be used for

tablets or smartphones. It can also be purchased with a variety of options such as colour, key or combination lock, coil or straight cable, etc. Once the plate is taped or glued onto your device, wrap the cable around a permanent bar on the wheelchair, and then lock it to your device. You are now secure! For more information regarding this lock, go to https://tinyurl.com/y9uvup37. These locks are also available from many other companies–just search for “universal tablet lock”. l

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