what it feels like: finding the silver lining in the uncertainties and spasms of cervical dystonia
living with cervical dystonia has opened ken jenkins' eyes to appreciate the here and now.
8 minute read
“the thing is to stay positive and do what you can to help yourself. do the work to find what treatment works for you and stick with it. take care of yourself. doctors can only do so much,” ken jenkins says of what he’s learned about cervical dystonia along the way.
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ken jenkins, a lifelong resident of guelph, ontario, loves hiking and biking outdoors, and plays in a beach volleyball league with his wife ruth. but his active and social lifestyle came to a grinding halt when contractions in his neck muscles froze his neck and head in place at an odd upward angle. he appeared to be looking up and over his left shoulder. and he couldn’t move his head from the awkward position.
“my head was stuck in this position and the pain was incredible. every single day, all day long, the pain was awful,” he says. “the way i describe it to people is if you turn your head as far as you can to the left, like you’re trying to look over your left shoulder as far as you can and then turn it a little bit more and look toward the ceiling. i had no control over it.”
the worst part was the fear of not knowing what was wrong or if anything could be done.
neurological disorder ‘like an overactive brain’
ken, 60, eventually was diagnosed with cervical dystonia, a rare neurological disorder that affects the neck and shoulder muscles, turning the head to the side or forcing the head back or forward, according to dystonia medical research foundation canada. it’s one of the many types of dystonia movement disorders that cause excessive, involuntary muscle contractions. these muscle contractions result in abnormal and painful muscle movements, spasms and body postures, making it difficult for people to control their movements or carry out daily activities. dystonic movements are typically patterned and repetitive.
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“so there’s nothing physically wrong. it’s like an overactive brain. the brain is sending the signals to these muscles, telling them to contract,” he says of how he explains the condition to others.
dystonia disorders affect an estimated 300,000 people in canada and the united states, but there are secondary dystonias caused by trauma and diseases like parkinson’s disease, huntington’s disease and multiple sclerosis that would propel numbers into the millions.
for ken, early symptoms that he recognizes in hindsight were ones he simply brushed off. a sore shoulder. stiffness turning his head. fatigue. “i just chalked it up to a sore muscle or i’d pulled something or slept wrong.” he got married 10 years ago when he was 50 and it was on his honeymoon in italy when his wife noticed that he was having difficulty turning his head and he realized his right shoulder was extremely sore and bothersome.
when they returned home and he went back to work as an accountant, the symptoms—it was obvious there was a serious problem.
“i distinctly remember sitting in my office one day and somebody came to my door and i tried to turn my head to the right to look at them. and my head just would not move,” he recalls.
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he went to his family doctor who had no idea what the problem was and referred him for an mri scan. meanwhile, his wife was searching for answers and landed on cervical dystonia. his doctor called him back and told him the same thing, but ken would need to see a neurologist who specialized in treating movement disorders for diagnosis and treatment. luckily, there was a physician in nearby cambridge. the bad news was the wait would be five months to get in to see him.
struggle to do the simplest tasks with head stuck in awkward position
“whenever you know there’s something terribly wrong but you don’t know what it is, the worst possible thoughts go through your head and there are sleepless nights,” ken says. “and the problem was during that time, because my head was stuck there, the simplest task like trying to eat, trying to drink, trying to brush my teeth, trying to shave, trying to walk down the street, to go downstairs was a struggle. driving was out of the question. i felt basically debilitated.”
one of the stranger parts of dystonia for ken is that symptoms subside when he goes to sleep at night. when he wakes up in the morning, he can freely move his head and neck for about 20 or 30 minutes before his head would involuntarily get stuck in the left upward position again.
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how did he keep working at his desk job? he no longer went into the office and set up a system at home connecting the computer to the tv. he sat with his chair at a 90-degree angle so his head faced the screen while he rested the keyboard on his lap or a small table. “i had the heating pad on my neck and shoulders this whole time because of the pain. this was pretty much my daily workplace.”
waiting for the diagnosis, he went to a dystonia information session in kitchener, which was a wakeup call for him to realize that he is “fortunate on many fronts,” he says.
dystonia can affect any region of the body including the eyelids, face, jaw, neck, vocal cords, torso, limbs, hands and feet. depending on the region of the body affected, dystonia may look quite different from person to person.
“when i looked around the room, there were people in wheelchairs, people with walkers. there was one lady who i’m sure had cervical dystonia, but her head was tremoring constantly, so trying to drink or eat would be a nightmare, and i’m fortunate that that is not my case.” the impact on quality of life for many people is significant, resulting in social isolation and avoidance, depression and anxiety. ken has the love and support of his wife and close friends that help him through the down days.
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“i was very fortunate once i was pretty sure it was cervical dystonia. there is no cure for it, but i knew that this is not going to kill me, so i’m still going to be ok. i’ll work through it.”
botox mainstay treatment for cervical dystonia
later, when he got into see the neurologist, another mri scan and further testing confirmed the diagnosis. ken says it was a relief to know for certain and start the trial and error process of a treatment plan. while every person’s situation is unique in cervical dystonia, the most effective treatment for many is botulinum neurotoxin, or botox, that temporarily prevents muscles from moving. just like the popular use of the product for cosmetic reasons, botox effects wear off and injections to keep muscle movements from resuming are required every three months.
it took almost a year to finetune ken’s injections for best results. he couldn’t drive and struggled with daily activities for those long months of pain and frustration. now he has 20 needles in different spots along his neck and shoulder that inject varying amounts of botox that keep him moving normally. “my brain is still sending the message to my muscle telling it to contract, but the message isn’t getting through because the connection has been disrupted,” he explains of the treatment. he also say he’s fortunate that he doesn’t have negative side effects that can happen with botox.
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“if they don’t get it exactly the right spot or they inject too much, your head can be floppy where you have trouble holding it up. it can fold forward because you’re basically weakening the muscles or eliminating the use of the muscles, and you can have trouble swallowing because they’re injecting it in the muscles in the side of your neck.”
over the next few years, he was also concerned that his cervical dystonia would continue to progress and affect other muscles, which would make treatment more difficult. again, fortunately, that did not happen and he’s been stable for 10 years. his botox treatments are still effective. he went to a physiotherapist early on before his diagnosis and the exercises gave him some pain relief, so he still does those exercises on his own as part of his daily routine. he’s also connected with dystonia medical research foundation canada for events and support, and he is passionate about self-advocacy.
“the thing is to stay positive and do what you can to help yourself. do the work to find what treatment works for you and stick with it. take care of yourself. doctors can only do so much,” he says of what he’s learned along the way. “the other advice i would give to people is try to make contacts within the medical community who can help you even if you don’t need their help today.”
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his first neurologist went on medical leave and ken was able to find another neurologist with experience treating dystonia in toronto. he also participates in studies on dystonia with one coming up at toronto western hospital. “you have to look out for yourself and do what you can do to help yourself.”
on the upside, living with cervical dystonia has opened his eyes to appreciate the here and now, and he and his wife retired early and have travelled to some beautiful places, like portugal and the galápagos islands. they both still play beach volleyball in a recreation league and enjoy being active.
“we got married later in life and we just want to make sure that we can spend as much quality time together as we can.”
without treatment ‘i’m basically disabled’
there are worries about his health that weigh on him, so it’s not easy or straightforward.
his neurologist will retire at some point and he’ll need to find another specialist. how will he manage when he’s older, living in a retirement or nursing home? he relies on seeing a neurologist for those injections every three months, he explains. “right now i can jump on the go train and go to toronto and walk up to his office. and if i don’t go every three months, i’m basically disabled, which is another kind of frustrating thing. i would presumably draw a disability pension from the government which would cost the government a lot more than the cost of the botox.”
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his botox treatment costs about $7,000 a year and is not covered by the province. his neurologist and pharmacy have helped him apply to different programs over the years that help cover some of that cost, but how far can he stretch his savings?
as ken puts it, “you never know what’s coming down the road.”
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