Multiple Sclerosis: "Stay positive and serve others. You'll feel better, I promise"

Hi Jim,

Thank you for agreeing to share your story with Carenity.

First of all, could you tell us more about yourself? 

My name is Jim Turk and I was diagnosed with multiple sclerosis (MS) in 2008. I was a long distance runner, a drummer in a band, and have a family in addition to working full-time while getting a masters degree in biotechnology.

I worked full-time at the University of Wisconsin - Madison where I was in charge of the Biosafety Office until I went on disability in 2016.

I have kept myself extremely busy ever since. I’ve done TV and radio spots, writing, public speaking, and even did a documentary about my life with MS.

I was the MS activist of the year for Wisconsin in 2019 and currently serve as the chair of the Wisconsin government relations advisory committee, chair of Walk MS for the Madison area, am a district activist leader, a group drum facilitator (“drum circles”) for people with disabilities as well as those in assisted living facilities and memory care units, and review grants for the multiple sclerosis Society.

This doesn’t amount to everything I do but serving people and staying busy are two things that are very important to me. This, in addition to exercise, meditation, and listening to music, are what keep me happy and positive most of the time.

The way I see it, this is the hand I was dealt so I may as well make the most of it. I want other people to enjoy life as much as I do and spread the word!

When were you first diagnosed with MS? What were the first symptoms? How many doctors did you see and what tests did you have to take?

It’s pretty typical for people with MS to go a length of time before being diagnosed. The reason is that it’s a process of elimination diagnosis. There is no blood test for it. The only real effective diagnostic test is an MRI. Most places won’t give you one right away.

As a result, I probably went six or eight years before being diagnosed. I was in such good shape and kept such a busy schedule that any problems I was having were often blamed on being busy, stressed, tired, etc.

I was originally diagnosed with relapsing remitting MS. There are four types and that’s the most common type. I have since transitioned to secondary progressive MS.

In relapsing remitting, you have exacerbations of symptoms and then they subside, in most cases. I can go back many years prior to my diagnosis and look at symptoms that I now know were relapses.

Because I was in such good shape and so busy, symptoms were often excused as being a result of stress or lack of sleep. For example, my speech went extremely bad overnight.

Most people wouldn’t have known it, but the people close to me could recognize I was having a problem. I certainly knew that I was and was struggling to enunciate.

When I called urgent care, they asked me to come right in when I told them I was having speech difficulties. I assume that they thought it was a stroke.I went in and was given an EEG and an ultrasound on my heart and was given a clean bill of health by the doctor. She told me that it was just because I was so busy and not sleeping.

I knew that’s not what it was. I have felt that. This was different but I didn’t know, yet, to advocate for myself. I was afraid of being labeled a hypochondriac so I didn’t push it.

When things got really noticeable, they still didn’t give me an MRI. We initially thought it might be a blood pressure problem. I have a very low heart rate.

I wore a 24 hour halter monitor, had an ultrasound on my heart, a stress test, and was told I had the heart of a teenager.

The next step was to see a neurologist. The neurologist wouldn’t see me until I had an MRI. Once I had that, it was fairly clear. 

How were you told about the diagnosis and how did you feel about it? Did your loved ones support you? Was it easy for you to talk about the disease to those around you?

It was, initially, a very confusing and stressful experience. I was told on the phone, by an intern, that my MRI was abnormal. I had just changed jobs and hadn’t changed my phone number, yet, for them to get a hold of me.

Finally, I figured out, online, that they had been trying to call me. My general practitioner had messaged me to say I probably had MS. She had been trying to contact me and sending a message was a last resort. I didn’t know anything about the disease.

I was scared. I thought my life was over.

My immediate family knew that something had been wrong and so I told them all. I did not, however, tell people at work. It wasn’t obvious, yet, and I didn’t know if I would be treated differently. It was easier for me to figure things out, first.

How did the illness evolve over the years? What were your treatments? Have you had to adapt your lifestyle (diet, sleep, work, etc.)? If yes, in what ways?

MS has changed my life considerably. I am now in a wheelchair much of the time. My right side does not work well. I have vision problems, speech problems, swallowing issues, coordination issues, fatigue, heat intolerance, and many other things.

While this may sound like a lot, and it is, I have managed to make life work with those challenges. I consider them strengths, in many ways.

I choose to be an example instead of a burden to others. I take breaks when I have to, but I’ve also modified my life in many ways to accommodate my disabilities.

Serving others, meditation, music, exercise, nutrition, and social activities are huge and help to ensure that I’m moving forward.

I was on injections that I gave myself three times a week for many years. About five years ago, I switched to a twice yearly infusion. I have now discontinued treatment.

This is never something that I would recommend that anybody else do. This is something I’ve chosen to do because I keep close track of my symptoms and have made enough lifestyle changes that I feel I’m pretty stable. My MRIs have been stable for a decade or more.

I also consulted with my neurologist before doing so.

MS treatments can interfere with a vaccine’s ability to function properly in my system. With Covid and my lifestyle, I felt like that was a reasonable trade-off. If I feel like I’m getting worse again, I can always go back on treatment. 

How has the disease affected your professional and personal life? 

Professionally, I’ve gone on disability. That said, I stay extremely busy with all of my volunteer work for the MS Society, the drum circles that I do, some work with occupational therapy assistant students and much more. 

Serving others and staying positive has become a passion of mine and I do everything I can to spread that. I’m not sure I would go backwards if I could! 

You have a website called “Beat My Disease”. Why did you start this endeavor? What messages do you want to convey to your readers? 

I started the beatmydisease website in 2011 or 2012. My goal in having it was always to have an outlet for writing as well as spreading positivity. I could also use it to advertise group drumming and speaking.

Considering the fact that you studied nutrition and received a masters degree in biotechnology and also worked as the Biological Safety Officer at UW - Madison, how have you applied your education and work experience to tackle your disease? 

Nutrition was the first thing I changed when I was diagnosed. I have always had the ability to quit things or change things without too much difficulty.

I tracked everything I ate and then stopped completely and only ate very inert foods. I slowly started adding things back in, taking careful notes about how different foods affected me and altered my diet accordingly.

My masters degree and work experience helped me to take a scientific approach to everything that I was feeling. Whatever was happening, I would do everything I could to eliminate all of the possible variables so that only one or two things could be the cause. I would then eliminate those as much as possible until I achieved the result I was looking for.

You are quite an active member of society, being a volunteer for the National MS Society, chairing a local Walk MS committee, doing group drum therapy among many other things. What pushes you to contribute to helping other people, especially considering your illness and the limitations it can bring about?

I just find that serving others makes them feel better, and as a result, makes me feel better. There’s no other way to explain it.

When you have a disability and you do that, you set an example as well. If you stay positive and try your hardest while being matter-of-fact about your lack of abilities, you feel better about yourself and the other people in the room feel better about themselves. It’s a win-win!

What are your plans for the future?

I would like to increase my reach as far as serving people. I would like to write a book and maybe become more active in my website, again, as it’s become a little ignored.

I would also like to increase the number of speaking engagements that I do.

Finally, what advice would you give to Carenity members also affected by chronic illnesses?

Stay positive and serve others. It may sound corny, but it works. If you are positive, the people around you are going to be positive, and you’ll feel better. I promise!

A big thank you to Jim for his interview!  

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