Tim Williston is a former Director on the DMRF Canada Board of Directors.
Tips from Someone Living with Dystonia
Tim Williston lives in New Brunswick with his wife, Nancy. He is a traveller and a sports enthusiast, who loves a good action movie (although he’ll concede the occasional compromise and watch a rom-com). He is a self-described positive person, and the effects of his positivity are apparent in his close relationships with family and friends. Tim has also been living with dystonia for the last 17 years and has weathered many of the challenges and permanent changes this has brought with it. Tim has worked and continues to work very hard at keeping his positivity shining through, while he acknowledges many of the challenges he faces internally.
We had the chance to find out how dystonia has changed Tim’s life, how he manages to continue doing what he enjoys and how his family and friends support him. Tim shared his story in hopes that it will let others with dystonia know they are not alone and can help their loved ones further understand what it is like to live with this disorder.
The Ongoing Journey with Dystonia
Tim was diagnosed with torticollis and blepharospasm in 2004. His symptoms were severe and very apparent. “My head would move back and to the side very violently. It was apparent if you were in the room with me,” he describes. Following unsuccessful treatments, he underwent Deep Brain Stimulation (DBS) surgery in 2006 and after a couple of years of programming, found settings that were optimized for him. During that time, Tim became involved in DMRF Canada, first as a local contact, then a support group leader and finally a board member (from 2018-2020). The effectiveness of the DBS began to wane and in 2018, Tim underwent a second DBS. He has gone through a long process with the help of his family, friends and medical team to begin the road to “getting back into the groove” and prioritizing the things that are important to him.
Knowing Yourself
Tim says that he was previously known as a “social butterfly.” He describes how his wife Nancy says, “everybody wants to talk to you!”. While Tim describes that before dystonia, he was very outgoing, he now says, “I’m outgoing, to a point. I find it difficult and extremely tiring to socialize. I have to prepare by resting in advance and then suffer the fatigue after a social event.” Tim has become attuned to listening to his body and acknowledging when he needs a rest. “I know what the signals are when I pass my expiry date,” he explains. Noticing and accepting his limitations has been a big learning curve for Tim, but an extremely important factor in continuing to do some of the things he enjoys. Some things have had to take a backseat and while it is difficult, knowing his limitations allows Tim to participate in some of the things he enjoys.
Becoming an Advocate, and Recruiting Advocates
One thing that has come from Tim knowing himself so well, is that he is able to advocate for what he needs. He has communicated to his family and friends that he is sometimes up for socializing and sometimes isn’t, depending on the day. He also finds that by 2-3 hours, he needs a break so will go to another room, often relaxing with a good TV show or movie. He describes that his close circle knows this and lets him do what he needs, no questions asked. He is thankful that Nancy is good about “doing her own thing” as Tim acknowledges he doesn’t want to hold her back from doing things when he cannot. While he feels everyone is accepting, Tim wishes he still had the stamina he used to for socializing. “My wife tells me that she understands my physical and social limitations, but she does not truly understand what lies beneath the surface in my mind. Only we who have Dystonia understand this aspect.” Prioritizing his social connections has been beneficial for Tim, in that he now also has a circle of advocates. He admiringly describes that his wife “just won’t stop till she gets what she wants” and that this has been instrumental for him when navigating the medical aspects of dystonia. He also says that all their friends know about dystonia, show their support by donating and by educating new people as well. For example, his good friends will let newcomers know before a bike ride that Tim may have to cut the ride short because of his dystonia and that’s okay. He also says that if he is going to a party, everyone knows in advance that he has dystonia, and he doesn’t have to go in and educate.
Staying Active
Tim prioritizes the things in his life that bring him the most enjoyment. He values physical and social activity and says this is key. He works hard at maintaining his positive attitude in public, admitting that this is sometimes hard. In response to “How are you doing?” he answers, “I’m good. Any day that I am above ground and vertical is a good day!” and will often deflect the question by asking others about themselves. Tim says this comes naturally, since before dystonia, “I never dwelled on myself anyway.” He does want people to know though, that this positivity comes with hard work and very deliberate management of his energy so he can maintain enjoyment and social connections.
Acknowledging and Accepting Change
Dystonia has not been an easy road for Tim. He discusses how it has changed his personality, taken enjoyment out of things he used to enjoy and how he sometimes feels like he is on an emotional rollercoaster depending on his physical abilities. He also talks with appreciation for his wife of 45 years and the time they take to connect every day. He savours the time he gets to spend in nature from the vantage of a kayak, and the city streets he navigates from his bicycle. He surrounds himself with the ongoing support of extended family and friends. He recognizes that his abilities with dystonia fluctuate and says he is getting back to where he wants to be. While his life may not be the same as it used to be, there are things he can enjoy and he will continue to do so with his understanding of himself, compassion for himself and the support of those around him.
Story originally published in the Fall 2023 DMRF Canada Report
Please watch Tim's life with Dystonia video here.
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