Welcome to our series of short interviews for Dystonia Awareness Month 2023. During September we will add more interviews with interesting people living and working in the dystonia space. They’re only a 5 minute read and we hope you will find them entertaining and informative!

On this page:

5 minutes with Tom Seaman

Tom Seaman is a Life Coach in the area of health and wellness, and the author of 2 books, Diagnosis Dystonia: Navigating the Journey and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges. He is also a speaker, chronic pain and dystonia awareness advocate, health blogger, volunteer for the Dystonia Medical Research Foundation (DMRF) as a support group leader, and is a member and volunteer writer for Chronic Illness Bloggers Network, The Mighty, Brain & Life Magazine, and Patient Worthy. To learn more about Tom, his books and coaching practice, visit www.TomSeaman.com. Follow him on Twitter @Dystoniabook1 and Instagram @CoachTom12.

Tom what was life like before you developed dystonia?

I was a very competitive athlete, involved in several businesses, active with my family and friends, and at the time of onset, I was attending graduate school for my degree in counseling with many exciting plans for the future.

Tell us about the ways dystonia has had an impact on you.

In the very beginning, the muscle contractions were so severe and the pain was off the charts that I literally lived on my floor rolling around all day. I became very isolated, lost all of my money, and was too disabled to work. I was 30 at the time in the prime of my life but felt hopeless and helpless so I began experiencing anxiety and depression. I also became morbidly obese from a very unhealthy lifestyle.

After about 5 years, I found different ways to better manage my symptoms which gave me hope. I also lost the 150 pounds (68 kilos) I had gained. I then began to write books and articles and it helped people in ways I never expected.

In the beginning, I felt I had lost everything. As time moved on, I realized that dystonia taught me many valuable lessons such as gratitude, strength, courage, perseverance, humility, and compassion. I also learned that I could use my pain and suffering to help others, so in many ways, dystonia has given my life more meaning and purpose.

You’re a certified life coach and active Dystonia advocate. How did that come about?

When I began to get my symptoms under better control in 2007, I was asked by a national organization to share my story in their quarterly magazine. To my surprise, I was contacted by many people who read the story and were looking for guidance. I found myself on the helping end, emailing and talking to people all day trying to provide support. I then started a support group to connect with people even more. Someone suggested that I become a life coach. I investigated it and thought it would be a good path for me to pursue because I am really passionate about helping others.

What are the things you wish you’d known in the early days of your dystonia?

I wish I knew how many treatment options were available and that this condition did not mean a life sentence of pain and misery; that I could again find joy in my life. I also wish someone helped me understand the emotional suffering I was going through so I had better perspective. While the physical pain was extremely difficult to handle, grief about the life I once had was also very prominent, but rarely addressed. Basically, I needed someone to give me encouragement and reassurance that if I keep hope alive and not give up that I could live a meaningful life. I needed someone who had “been there, done that” to let me know everything would be okay. This is one of the main motivating factors for the writing and coaching I do today.

What do you like to do in your spare time?

Being out in nature. I love to tinker around in my garden, take walks, watch the sunset, photography, take care of my plants, spend time near water, and I like to be as active as I possibly can with different forms of exercise within my range of ability. I also enjoy writing (poetry in addition to health topics), so I keep my blog active and write articles for different magazines. All of it is volunteer work which makes me feel good to pay forward the many things I have been given along the way to help me get to where I am today.

What’s something you’ve done that really took you out of your comfort zone?

About 15 years ago I was dealing with severe anxiety and panic attacks. One of the worst triggers for me was driving, especially over bridges. I went 10 years without going down one particular road because of a bridge that terrified me. One day I said to myself, “I can’t keep living like this. It’s self-imprisonment.” I forced myself to go over the bridge and I did it again and again and again. It was incredibly scary at first, but the more I did it the better I felt. In just a couple of weeks, I conquered my fear of bridges, and driving in general, which has increased my boundaries where I can now travel anywhere without fear.

What’s something you’re looking forward to and why?

I’m really looking forward to writing my third book when I find time. I love the creative process and I think the topics I have upcoming will really resonate with people within and outside the dystonia community.

You’ve written books and blogs, done videos and spoken at conferences, so many people know a lot about you. Can you tell us something about Tom Seaman that people would never guess?

I make my own greeting cards with personalized poems. I haven’t purchased a greeting card from the store since probably the 90’s. I also have 70 plants… and that’s just on the inside of my home!

Thank you very much Tom!

5 minutes with Jordan Morrison-Ham

Jordan is a PhD student at Deakin University in Melbourne. She is currently researching a new treatment for cervical dystonia.

When did you begin your academic journey and what areas of study have you explored?

I began my academic journey studying photography of all things! I received a diploma in photoimaging, and after some time off, decided to go back to school to study psychology. I did both my Bachelor’s and Honours degrees in Psychological Science at Deakin University, and am now finishing up my PhD in neuroscience at Deakin too.

What are you currently researching and what/who inspired you to become involved in this research project?

I’m currently running a clinical trial looking at non-invasive brain stimulation, and whether this could be a new treatment for cervical dystonia. When I decided to pursue a PhD, my supervisor approached me with the idea for the project, and I’ve been interested in dystonia ever since!

What sort of things are involved in running the research project?

A lot of planning, a lot of ethics submissions, and sadly a lot of revising and overcoming obstacles, such as technology deciding it won’t work! Liaising with other interested parties is also quite important – for example, neurologists and other researchers who help to analyse the data. I also spend a bit of time with my supervisor and our team debriefing over coffee after a long session – especially if something doesn’t go quite to plan, or if there is feedback given to us from a participant. And unsurprisingly, there is a lot of answering/sending emails!

What do you hope to achieve with the research project?

Although the main outcome of the project is to determine whether we can use non-invasive brain stimulation as a treatment option, overall, I’d love to spread the word about dystonia and what it is to the general public. Much of the feedback we have received from participants has been that so many people don’t know what dystonia is, including their medical professionals – even I had no idea what it was until I started my project. So I’d love to continue raising awareness whilst trying to find new treatments for dystonia.

Where do you hope your academic career will lead you?

I’d love to continue in the research field – whether that’s running other clinical trials or continuing to work with people with dystonia. 

You’re teaching at Deakin University, doing the research trial and completing your PhD – do you have any downtime? How do you find a balance between your work and life outside work?

When I first started my PhD I made a promise with myself to never work on a weekend unless it was desperately needed – and I think that has helped a lot with making sure I have downtime to relax, spend time with my family (and cats!), and take a brain break. I also try not to do too much extra work at home once I’ve left the office for the day. I think this helps with separating my work life and home life, so I can fully relax and become a couch potato once home!

What other things interest you?

I’m a big foodie – I love cooking and trying new foods and cuisines. I also enjoy going out on hikes and spending time in the garden.

Favourite food?

Anything Japanese. If I had to pick one dish it would be tempura vegetables with soba noodles.

What would be your ideal way to spend a weekend?

At the beach, or on the couch with some good food, my cats, and a movie.   

Thank you very much Jordan!

Page updated 15 September 2023