Interview with Theresa Roberts

Throughout this summer, we at have been working hard on our summer fundraiser, Shining a Light on DCM. Our community, however, has been working even harder; for the first time in our history, we launched a fundraising event owned and led by those in our online support group. Through the completion of challenges, including a swim around Fastnet Lighthouse in Ireland and a daily walking challenge, as well as a series of awareness posts on social media, our community are inspiring their friends and families to donate to our cause.

Why are we doing all this? Our work is critical to supporting those suffering from this all-too-common, yet underdiagnosed, condition through a combination of boosting awareness, funding cutting-edge research, and providing online support.

Raising these funds is critical to our mission. Aiming to bring in £30,000 over summer 2023, we will invest every penny back into our work so that, one day, nobody will have to suffer through this debilitating disease without the support they need.

We spoke to Theresa Roberts, a retired nursing professor based in Atlanta, Georgia, about her experiences with DCM and why she decided to get involved in our fundraiser.

How were you diagnosed with DCM?

After a year of feeling generally unwell, I was diagnosed with DCM in March 2023. Initially, in the fall of 2022, I started experiencing paresthesia (tingling or ‘pins and needles’) in my right hand that became increasingly more pronounced until the point where I went to see an orthopedist. In March of this year, the feeling spread to my left hand, and I also started to notice overall bodily weakness and often complained that my right leg seemed weaker.

I was unable to climb up a 30-inch wall. I was clumsy, often tripped and fell. I was also very tired, quit my workouts with my trainer and doing leisure activities like yoga as I simply couldn’t do it.

Initially thinking it was a problem with my heart, I went to see a GP, who, after a series of tests, actually diagnosed me with aortic insufficiency (but found my cardiac function to be perfectly normal).This was all while my symptoms continued to worsen; I experienced constant illness, including bronchitis, severe colds, and a few urinary tract infections.

Once the cardiac workup was complete, I was referred back to the spinal orthopedic specialist who did a series of neurological exams, which demonstrated I had both positive bilateral Hoffman’s and hyperreflexia. At that time, I was informed I had either myelopathy or radiculopathy, with the former being subsequently confirmed through an MRI.

How has your DCM been managed?

Surgery has been the main way my condition has been managed.

Following my diagnosis with DCM, I was fortunate enough to be quickly referred to a neurosurgeon. However, due to my being extremely myelopathic, my symptoms continued to rapidly worsen over this period.

I decided to contact the neurosurgeon’s office because of this and to ask someone to check the results of my MRI to assess whether it was appropriate for me to wait to see a neurosurgeon. I heard back from the office just the next day and saw the surgeon the day after. For me, surgery couldn’t wait.

Within just 5 days of my appointment with the neurosurgeon, I was booked in for surgery. I now hope I am on the road to recovery.

To manage my condition now, as I’m still getting my strength back, I try not to overexert myself, particularly in trying to lift heavy objects. However, I am seeing an improvement in my ability to walk; I am trying to get out at least once a day for a long walk, getting in > 20,000 steps a week!

Besides that, I try to help with the discomfort with a specialized neck pillow and take medication like Tylenol for the pain that I still have.

What challenges do you still face due to your condition?

Whilst I am still in recovery four months later, things are starting to improve. I still have some numbness in my right hand, but I am seeing my dexterity improve – for instance, I am able to type much better, but tasks like picking up coins are still a challenge.

My condition has also presented some challenges by way of being a grandmother. Taking my grandchildren out for the day, I have noticed it is still a challenge trying to pick them up – securing them in a car seat is particularly difficult.

Fortunately, I have started feeling well enough to go back to work. I went back to my contract job as a nursing professor and am now teaching a couple of days a month.

Whilst things seem to be looking up, I am still trying to figure out how to live with myelopathy and learn what restrictions I may or may not still have.

Why did you first get involved with

Having worked as a nurse for over 30 years, my own natural medical curiosity led me to start researching DCM more thoroughly, where I came across After joining the online support group and getting more involved, I started listening to the podcast – Myelopathy Matters – and began teaching myself about the condition.

One thing I quickly noticed, particularly with my medical background, was how underrepresented myelopathy is in the medical community and in textbooks. For example, if a neurological exam is necessary to diagnose DCM, why is it not included in yearly GP examinations? Why did it require a specialist to test for the cause of my paresthesia?

And that’s why I offered to volunteer for this charity, as they do a great job in promoting the awareness of and education in myelopathy for patients with DCM, caregivers, and the wider medical community.

I am now working on my summer fundraiser, hoping to raise the money to keep their crucial work going.

How are you fundraising for the charity?

I decided to get involved this year in an effort to just give back to the community and help others. As I say, there is a distinct lack of awareness around this condition, so I will do anything I can to help boost it.

I am currently raising money through a series of posts on social media. Going into detail about what DCM is, its causes, and its underrepresentation amongst the medical community, I am hoping to do my bit to raise awareness. I have also been sharing my own personal story online, talking about my symptoms, diagnosis journey, and what my recovery from surgery currently looks like.

Through this and the support of my amazing friends and family, I have been able to raise £501 ($638) for! I would like to thank those who took it upon themselves to donate – their contributions have been truly inspiring.

If anyone is looking to get involved in the summer fundraiser – whether you are someone with DCM, a caregiver, or part of the research community – I would encourage you to do so, as it is only together that we can raise awareness for both the general public and the medical profession.

Thank you!