Letter to AADL Application Committee (for Powered Wheelchair)

 September 20, 2021

Dear AADL Application Board.

Hello my name is Laura Jean Rutherford. I am 51 years old and have been living at AgeCare-Skypointe since August 5, 2018 on a LTC unit. September 9, 2016 I was diagnosed with Guillian Barre Syndrome (GBS) - Acquired Motor Sensory Axonal Neuropathy (AMSAN). Due to extensive damage to the axonal component of the peripheral nerves, I have been left as a quadriplegic from the shoulders down, with limited extremity movements. I require total care as I am unable to perform any of my daily basic needs. 

Aside from GBS-AMSAN, I am morbid obese, as well as have a neurogenic bladder and bowel, edema of my extremities and have long term indwelling Foley catheter. I am in constant pain due to the neuropathy and ongoing tingling and numbness associated with GBS-AMSAN. With the multiple comorbities I am dealing with, I have been referred to multiple specialists - neuromuscular physician, gynaecologist, nephrologist, dermatologist, respiratory physician, urologist and allied health therapists (PT/OT) at the South Health Campus’ Neuromuscular Rehabilitation Clinic. 

Being morbid obese, my manual wheelchair is considered an oversized wheelchair frame. Having an oversized wheelchair has brought many obstacles and barriers preventing a full quality of life. For example, at AgeCare-Skypointe facility, I am unable to enjoy many of the common areas for residents due to the size of my manual wheelchair. Such areas as my unit’s flex room, lounge and sunroom as well as the facility’s salon, sacred place, dental clinic and conference room. As you can see, there are many places within my own facility which I cannot enjoy. Thus I am primarily in my room all day long. Currently, I face barriers in the community such as can only able to use Access Calgary’s bus for transportation as I am at the maximum width for their ramp; having to pay privately for transportation to medical appointments on a stretcher as my wheelchair width make me unable to go through their office doors. This becomes costly for me. The inability to get through the doors to restaurants and retail stores.

Prior to being diagnosed with GBS, I worked as Coding Coordinator and before that a Coding Specialist in the AHS’ Data Collection area of the Health Records Department in Calgary Hospitals for 11 years. Currently, our health records are in a hybrid state requiring to use the paper chart and electronic records to code and abstract data of a patient’s stay (outpatient/inpatient). As I do not have the ability to use my hands, I was unable to go back to work and have been on Long Term Disability (LTD) since February 2017. 

September 10, 13 and 14, 2021 - I trialled a powered wheelchair around my facility. The major achievement found during my trial, that the wheelchair literally (and figuratively) have open doors for me which allows me to explore new opportunities for me. As the width of the powered wheelchair is smaller than my manual chair, I was able to get through the doors of the sunroom, lounge on my unit and the sacred place on the main floor. I could have cried as I haven’t been able to use these rooms for over 3 years. Knowing I can use the sunroom was an awesome feeling, a sense of freedom. I would need assistance pressing buttons on the elevator, but I was able to turn myself around in the elevator. This would allow to be independent to go to another floors to visit with other residents or attend group activities. We trialled outside around the facility, it will come with more confidence , but again gave me the sense of freedom. 

In March 2021, I had a MRI of spine/head and it basically confirmed what I expected, my  immobility will not be significantly improve, thus will remain a quadriplegic. So I have been trying this year to finding a purpose(s) and determine what is my quality of life. Currently, in a volunteering role, I am a Calgary Liaison for the GBS/CIDP Foundation of Canada as well as being the Chair of AgeCare-Skypointe’s Resident and Family Council. In addition, I have been using my healthcare knowledge to advocate to provide the facility for myself, fellow residents as well as the staff to AgeCare leadership and the political governments. After my trial of the powered wheelchair, it gave me hope of possibilities that I might be able to do to increase my independence and quality of life and to be a part of the community again. Instead of requiring an attendee for every Access Calgary trip, I could meet my attendee to go shopping or see a movie. It would enable me to visit other GBS survivors in Calgary and travel to meetings when not virtual. With AHS, in November 2021, expanding the provincial ADT/electronic health record (ConnectCare), there could be an opportunity to go back to my career as at least a Coding Specialist as there would not need a paper chart in the collection of data to code and abstract. Accessing provincial programs like Disability Related Employment Support (DRES), to receive assistance with workplace accessibility technology. In my case, having 2 touchscreen desktops so the abstract can be on one while the patient’s health record is on the other screen; an adjustable desk so the powered wheelchair can go under the desktops; a mouth stick holder to hold my mouth stick when I am not working. The long term goal of ConnectCare is that coding specialists could work from home, which mean I could work from AgeCare-Skypointe where I can work and have my daily basic needs met. 

Thank you for your consideration towards approving my application for AADL assistance in purchasing a powered wheelchair for me. It will definitely provide new opportunities and a renewed focus of hope that there are new doors to explore for me, figuratively and literally. Thus improving my quality of life and regaining some independence and confidence back.

Sincerely yours, 

Laura Jean Rutherford 

LTC Resident of AgeCare-Skypointe