Team work helps living with ALS
“It’s not easy to have to ask for help, but I have to, and I thank all the people who help me. They’re wonderful people,” said Gladys Bentlage, who was diagnosed with ALS (Amyotrophic Lateral Sclerosis) two years ago.
With the help of her team — Kerry Bokenfohr, physiotherapist; Verginia Van Calsteren, occupational therapist; Michelle Dallyn, rehab assistant; Kristy Patrick, respiratory therapist; Judy Kistner, homecare worker; and other care aides, as well as medical care professionals — Bentlage can live in her own apartment at Carrington Place.
Originally from Bathurst, N.B., Bentlage, 69, worked at Canadian Tire for 36 years, retiring as store manager in Langley three years ago, then going back to work in retail after six months because she missed working with people. She also enjoyed golf, reading, embroidery and her computer.
Two years ago, she noticed that she was getting out of breath going up stairs and her sister noticed that her voice was getting softer.
“My voice just kept getting worse so I went for tests,” she said in a pleasant, wispy whisper.
There is no specific test for ALS and diagnosis is made by ruling out other possibilities, and by the doctors’ observations.
“He did a few things, looked at my tongue and said, ‘You have ALS.’ I didn’t even know what that was. I asked him how long I had had it and he shrugged and walked away. I was in shock,” said Bentlage. “I was scared when I looked it up but I accepted it. When I was diagnosed I had just retired a second time, moved to Vernon to be near family, bought a new car and condo and was planning some trips. The walking was the worst, I was weak and would trip and fall. What really made me realize it was true was when I was baking bread and had no strength to punch it.”
She had an evaluation at G.F. Strong Rehabilitation Centre in Vancouver where she spent time with a team of specialists which helped determine the equipment and care she would need when she got home. The home team of professionals visits on a regular basis to help and evaluate her changing needs. She also has the help of a dietitian and speech therapist.
The ALS Society of B.C., which fundraises to provide equipment, information and support for people with ALS and their families, has helped with a power tilt chair, a special mattress and bed, and bathroom equipment. Bentlage has also received a speech and head movement controlled computer although she still uses her computer with the mouse pointing out letters on the screen so she can keep up with friends through e-mail.
“The equipment is very expensive but it’s important to helping Gladys stay as independent as possible. My job is to see what she needs, arrange to get it from the ALS Society and help her learn to use it. I don’t know where people with ALS would be without the society,” said Van Calsteren.
Bokenfohr has designed an exercise program for Bentlage and Dallyn helps her with the exercises regularly. North Okanagan Hospice Society volunteers come to do massage.
Patrick checks Bentlage’s oxygen levels so that there will not be a build up of carbon dioxide which would affect the muscles.
“It was so hard at first but you take it one day at time and make the best of it. If you’re bawling, you’re not enjoying yourself,” said Bentlage. “The worst is when you can’t blow your nose or pluck your eyebrows or put your earrings in, you just can’t. You have to accept help, otherwise you would go crazy. I just try to enjoy each day. I have the computer, I can still read, I can go downstairs and talk to the ladies and watch soap operas and there are activities here.”
Bentlage has visited Hospice House and Noric House, where she might have to move when she needs more care, and has made her funeral arrangements.
“Mom was such a wonderful caregiver for me and always cared about other people. Now I’m happy to see her getting help when she needs it. I’m so grateful to the people who help her. Mom is independent and does everything she can. She’s a great role model and a great mother,” said Tina-Marie Bentlage.
Bentlage is hoping to be selected for a trial of a new medication for ALS.
“At least it’s something. I want to do this to help, if not myself, then other people,” she said.
There are currently seven people with ALS in the Vernon area. The first ALS Walk in Vernon takes place Saturday at 10 a.m. in Polson Park. The money raised will go to help people with ALS locally.To register or to make pledges call Nichoel Crawford at 250-503-4741 or see firstname.lastname@example.org.