Supporting Linnae Sekulich build a legacy of helping those with Parkinson’s as she fights it herself

Linnae Sekulich is a 55-year old mother of two and wife to her loving husband, Terry. She has a bright sense of humour and an infectious smile, even in a photograph. She should be enjoying the prime of her life, but nearly six years ago, Linnae was given a shock. Following some abnormal movements on the right side of her body, such as her thumb shaking and her big toe-curling up while her other toes curled down, she made an appointment with her family physician. “It’s Parkinson’s,” recalled Terry, as he relived the moment the doctor gave the diagnosis. At that moment, their lives changed forever.

Two years into her diagnosis, she started walking in a fundraiser event held in Edmonton by Parkinson’s Alberta called the Step and Stride. Both Linnae and Terry have big families with many residing in the province. When it was time to walk, the family members stepped up, literally, with a group of 75 people supporting her. They all wore purple shirts for their team, Family Affair, and together they raised money for a cause that does not get the support that other causes, such as Cancer, receive.

In 2020, things changed again. After dealing with what they believed to be a misdiagnosis, due to medications not working, they received confirmation that they were right; Linnae was misdiagnosed. However, the new diagnosis was much, much worse. “She has MSA. Multiple Systems Atrophy. It’s categorized as Parkinson’s Plus,” explained Terry, “Instead of taking her life with Parkinson’s in 25-35 years, it condenses it and takes it in 6-12 years.” The news was devastating. The neurologist who discovered the misdiagnosis did so over a Zoom call and used Linnae’s case to educate others on how to catch these types of misdiagnoses.

When she was asked by Parkinson’s Alberta to be an Ambassador for the Whitecourt area, she proudly accepted the title. Her goal is to raise awareness of Parkinson’s and help create support groups so that those suffering can feel the love of their community and not feel alone. She also continued ahead this year and did the fundraising walk in Whitecourt. She raised over $2500 between two teams. Her Home Care nurses joined in the walk since her distant family members could not travel due to COVID and the group of 35 cheered as Linnae walked with help for a bit, flanked by those who love her. “This is year number one for Whitecourt (to have the walk). She is such a powerful and strong-minded woman. I can’t say enough about her efforts,” gushed Terry. “She did very well.” Since the walk will now be taking place in Whitecourt, they added something special to their Family Affair Team shirts. “We added the airport call sign for Whitecourt to the left shoulder,” he explained. “Arnie at Topline did them for us and has been the last two years.”

Pushing to make an impact locally will be challenging, but the Sekulich’s are determined. “According to Parkinson’s Alberta, there are approximately 400 people in the Woodlands County/Whitecourt area with Parkinson’s. The most frustrating thing, when a person has a debilitating disease, is not having someone to talk to that has a similar disease or that understands,” said Terry. “The biggest thing is when they go into hiding because they have something wrong with them and they figure that people look at them differently, or people don’t want to make eye contact with them anymore. It is a lonely feeling.”

Another great reason to have more support locally is so that the caregivers can have people to talk to. Though he said that the support he has received through the Home Care groups has been outstanding, it would be nice to talk to other caregivers about their struggles. Sadly, 80% of the spouses do not show up for the doctor appointments when a person has a disease like Parkinson’s, and 75% of the spouses leave, divorce or separate from their loved one because they cannot deal with it. “I have attended all of Linnae’s doctor appointments. Always have, always will.”

Since Parkinson’s does not have the attention that it should, governmental change is incredibly hard. Terry said they have been trying to access help for years. “These offices that we go to for the government, we all cry together. None of them can get the right checkmarks so that a loving husband can stay home and take care of his terminally ill bride.” He said that being laid off from work compounded issues financially but that it was a Godsend because he could stay home and care for her on EI.

Once COVID hit, that made things more difficult. Since she is classified as terminally ill, getting support is nearly impossible because she does not qualify at her age. “We’re still hanging in there. We are 18 months into our hardship, and I can still make her smile every day, and I am not going anywhere. The toughest job in the world is having the disease and dealing with it. The second is being the caregiver to watch the strongest person you know and the woman that you love, start to fade,” said Terry.

Within five to eight years of diagnosis with MSA, sufferers will be bedridden, and anywhere from six to ten years, they will lose their lives to the disease. Linnae’s wheelchair arrives soon as she moves into the next stage of her progression. “Her mind is 100 percent. It is the body that is failing her. You have a disconnect between the brain and the nerves and the motor skills.” Talking is difficult because muscles hold her jaw closed, medications are destroying her teeth, and digestive system and her bladder control is being lost. “As a woman, a proud young lady of 55 years, you are turned into an old lady, which plays its part on your emotions. This beautiful, powerful young lady..,” faded Terry.

The Sekulich’s hope that they can sell their condo soon and purchase a motorized unit so that Linnae can spend her final time on this earth chasing the sunshine. “She loves camping and wants to do that until she meets the good Lord.” To help Linnae build a community of support for those with Parkinson’s, visit www.parkinsonassociation.ca or contact Whitecourt Home Care. To help enact change for those like Linnae seeking help from the government, call your MLA.