Living with ALS includes having to adjust to many physical challenges including loss of mobility and communication. Access to specialized equipment can go a long way to help people with daily living as their symptoms change. At ALS Canada, Client Service Coordinators Alexandra, Suzanne, and Sharyn are part of a tight-knit team working behind the scenes to lend support. They coordinate the ALS Canada Equipment Program that provides equipment and assistive devices for the safety, comfort and functioning of people with ALS. The program consists of a Loan Equipment Program, funding assistance for some leased and rented equipment, and flexible funding for small bathroom equipment. In 2016, the organization received more than 3,500 equipment requests, which at an increase of 34% over the previous year is a clear indication of the ongoing need.

In a perfect world, every equipment request would be fulfilled without a moment’s delay. With demand growing every year, ALS Canada is working hard to increase the size of the loan pool and find ways to improve turnaround time. ALS can progress rapidly in some instances, so when someone living with ALS needs a particular piece of equipment, staff understand the urgency of the task at hand. As Sharyn admits, “the hardest part of the job is when we have to put someone on a waiting list.” The team is currently making changes to improve internal systems for maximum efficiency, to strengthen working relationships with partners across the province who clean, deliver, repair and sometimes store equipment, and to secure sufficient funding to grow the existing loan pool every year.

In addition to the Equipment Loan Program available in every community in Ontario, ALS Canada purchases some smaller items such as bath chairs, tub benches, versa frames (safety frames that go over the toilet to provide armrests for stability and balance) and stationary commodes for people to keep. The organization also helps pay for power wheelchairs, communication devices and straight stair glides for those eligible based on income. Canadians with ALS who live in other parts of the country where governments do not provide equipment can access similar equipment programs through partner ALS societies across Canada.

Occupational therapists (OTs) are usually the people who authorize equipment requests for items such as Hoyer lifts, easy lift chairs, tilt commodes, or cushion mattresses but families are often in direct contact with the ALS Canada Client Service Coordinator once the needs assessment has been completed. People living with ALS expect equipment to be delivered promptly and in clean, working order so Alex, Sharyn and Suzanne also work hard to ensure that vendors maintain and deliver the equipment as promised. Administration and coordination are only part of the job. As Suzanne points out, she and her colleagues are also there to listen “if the person on the other end of the phone needs to let out some of the more difficult feelings – sadness, anger, or frustration. It’s one of the hardest parts but one of the most meaningful parts of our work.”

ALS Canada's Client Services CoordinatorsSharyn is the newest member of the Client Services team. She was hired part-time last spring to help with the growing number of equipment requests. Like many of the staff and volunteers at ALS Canada, Sharyn has a personal connection with the disease. When her mother was diagnosed with ALS in 2010, Sharyn began to volunteer with the Toronto WALK for ALS and says it provided “a kind of therapy” for her at a difficult time in her life. Although she admits there are times when it can feel overwhelming to think about or revisit what families are dealing with, she says she loves her work because it has meaning.

Alex remembers the first time she heard about ALS. She was on the plane leaving her native Romania for good in 2007. She happened to pick up a book at the airport called Tuesdays with Morrie which she read from cover to cover before the plane landed in Canada. When she started her job with ALS Canada three years later, she re-read the book, mindful of how to appreciate every day without taking anything for granted. Learning to live in the moment. Remaining open-minded and optimistic. Since then she has connected with hundreds of families facing ALS and she knows that with the unprecedented success of the Ice Bucket Challenge and the progress being made through medical research, the future for people diagnosed with ALS is brighter than ever. For now, she just wants everyone to know that she and her colleagues are there to help at the other end of the line.

ALS Canada urgently seeking gently-used equipment donations

Right now, the demand for equipment far exceeds what the Equipment Loan Program is able to supply. Specifically, items most urgently needed include:

  • Easy lift chairs of all sizes
  • Tilt commodes
  • Hoyer and ceiling lifts
  • Hospital bed mattresses, especially air, gel and v4 mattresses
  • Scooters, and
  • Portable ramps (3-10 ft. long).

How you can help:

  1. Make a cash donation at www.als.ca/donate
  2. Donate gently-used equipment – ALS Canada will accept donations of any gently-used equipment that is less than five years old, from anywhere in Ontario. All arrangements will be made for pick up at a time that is most convenient. The donated equipment will be cleaned and within days will be delivered to someone in need. Call 1-800-267-4257 ext. 211 or 222 or email equipment@als.ca.

Tax receipts will be issued in exchange for any equipment (or monetary donations) valued at more than $25.

Posted in: Support & Services