Portage la Prairie resident Donnovan Hillman's story of his ordeal with an unknown cause for a continuous headache has touched the heart of an RM of Lakeview and Gladstone area resident.

Darryl Kennedy has also been suffering with a condition called cervical dystonia that hit him just before the COVID-19 pandemic. September is actually Cervical Dystonia Awareness Month. 

Kennedy said Hillman's story caused him to become teary, noting he knows what it's like to have a condition hit you from out of nowhere, and require you to adjust your entire life in efforts to cope. 

"There are different types of dystonia, but cervical dystonia is a more common type, but still a rare movement disorder," says Kennedy. "It's the third most common movement disorder behind Parkinson's. It's actually a symptom of Parkinson's disease; a chemical imbalance in the brain that causes nerves of certain body parts to not communicate with the brain properly. For me, it's my neck. My neck gets stiff and, as you can see, I'm always turning to the right. It makes life quite challenging." 

Seeing as it developed just before the pandemic started, doctoring was quite difficult for him due to the lockdown. 

"In early 2019, I started developing symptoms and then they just gradually progressed," continues Kennedy. "When Donnovan was talking about his headaches that he wakes up with, and he has them all day, I started out same way. I was in a lot of pain. I was just kind of at a loss for words because anywhere that I went, nobody knew what was going on with me. It affects my everyday life."

He explains driving is difficult, seeing as he has to position his head in a way that he knows he's safe. Kennedy is a welder and works in Southport, making the use of his hands quite important for his career.

"Basically, my whole life changed around looking at just doing basic things like walking or doing dishes," adds Kennedy. "The prognosis is the part that nobody can answer. There's no cure. There's no known cause. There are different methods that they could try to help bring some ease, but of anybody that I've talked to on the internet through my group chats, nobody's got a cure. Some people have lived with this for 20 to 30 years in different forms. It seems every single case is a little different."

Kennedy says the condition has never really eased off, and he receives injections into his neck every three months at the Movement Disorder Clinic in Winnipeg. 

"I've tried physio," notes Kennedy. "We've tried a Chiropractor. I do exercises. It eases and gives me some relief, but it never takes it away completely. I started out with a lot of pain. Injections have helped me with my pain, but my head's been locked like this (toward the right) since 2019. The biggest problem now is my whole body's twisting. The more I exert force, or do anything else with my body, my hips and my knees want to twist with it. I can't run. It's slowed me right down. I've got to rethink everything I do."

He says people ask him what's wrong with his neck and he tells them he has dystonia. 

"Nine times out of ten, nobody knows what that word means. There is a larger neurology centre in Toronto that does more work with dystonia."

Kennedy adds there are surgeries and deep brain stimulation, which is applied by a mobile device to insert a probe into the brain and shut down some nerves. He explains it's not 100 per cent effective, though. 

"There are a lot of people that deal with a lot of pain, and I'm one of the fortunate ones," says Kennedy. "The pain has gone away but it's dealing with everything else."

He says he'd like to tell Donnovan to just hang in there.

"I know what you're going through, mentally. It's definitely mentally challenging; dealing with stuff like this every day. It's not something that's just going to go away."

Kennedy describes waking up and thinking his condition was gone, but five minutes later, it was back again.

He explains he basically has to learn his limits so as to not over-exert his muscles, and know what he can and cannot do. He says he can't fight it but has to allow his neck to do what it does.

Kennedy says he had to take time off work over the past winter. Anything related to stress is to be avoided. 

"Driving on winter roads is not good because the more stressed I am, my body tenses up and the pain comes back. As long as I can relax and chill out at home with my kids, it's better."

He adds his family is very supportive.

"There could be other people out there that are feeling symptoms of head-twisting. Maybe they've been to clinics, and are getting false diagnoses. Keep digging for an answer, because sooner or later, you will get a proper diagnosis. Spreading awareness is important because you could sit at home, and it's not going to go away. I just wish Donnovan luck in his journey to the Mayo Clinic. Hopefully, you'll get some answers there."

 

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