International Day of People with Disabilities

For the International Day of People with Disabilities on December 3, 2022, we are highlighting an exciting research project taking place through the University of Calgary’s RESTORE Network and one of our staff members, Marilyn Germaine.

The RESTORE (REsearching STrategies fOr Rehabilitation) Network is a partnership between Alberta Health Services and the Cumming School of Medicine, whose mission is to improve the cardiovascular, neurological, and musculoskeletal health of patients of all ages living with neurological disorders through integrative research and technological innovation.

Currently Marilyn is taking part in a trial which will use Targeted Epidural Spinal Cord Stimulation to stimulate circuits in the spinal cord that are responsible for hemodynamic control to restore hemodynamic stability (stable blood flow and heart rate). The main goal is to help reduce the frequency and severity of orthostatic hypotension (low blood pressure) in individuals with spinal cord injury (SCI).

Natasha Gilfoy sat down with Marilyn to get her thoughts and feelings about being a part of the study.

Natasha: For context, can you tell me a little about your injury, and how it has impacted your mobility and other aspects of your life?

Marilyn: In 2008, I was injured in a motor vehicle collision. My neck was broken at the C4/C5 vertebrae, resulting in a complete SCI. Everyone with a SCI is little bit different (even with the same injury level), but for me, I lost all function below my chest, in addition to my hand function and some of my arm function. I now need assistance with most of my regular daily activities but am fortunately, still able to work independently with the help of assistive technology.

Natasha: What made you want to volunteer to participate in this research study?

Marilyn: I think that most people are aware of the physical limitations after a SCI, but there are many other physiological functions that are affected as well, including the circulatory system, bladder, bowels, and respiratory function. The one that has been most disruptive for me in the last few years has been my blood pressure. Many individuals with SCI suffer from low blood pressure; mine seems to be much worse in the last few years than it was when I was initially injured.

Often when I get out of bed in the morning, I have very low blood pressure, and after I eat, it drops even more, to the point where if I don’t recline or lay down, I will pass out. Sometimes the symptoms last for just five or ten minutes, but sometimes it’s much longer. It’s hard to accomplish anything when your blood pressure is so low that you can’t sit up!

Even moderately low blood pressure causes fatigue and loss of the ability to concentrate, which makes it hard to do anything productive. The potential for the device to regulate my blood pressure was definitely the primary impetus for me to participate, but I’m also excited to see if it can help with other autonomic functions.

Natasha: Can you tell me where you are in the process of the study? What have you had to do leading up to this point, and how long is the study planned to take?

Marilyn: I had the two epidural stimulators implanted at the end of September (one in the lumbar region and one in the thoracic region) and am almost done what they consider the “intensive” phase of the study. During the intensive phase they have spent most of the time experimenting with the various settings on the thoracic stimulator to see how my blood pressure responds to stimulation.

Once that is complete, we will redo many of the baseline tests that were done prior to the implant, and they will eventually allow me to use the system at home to help keep my blood pressure at a functional level so that my daily routine is not disrupted. They will continue to monitor my progress for seven months post-surgery, after which I will have the choice to keep the epidural stimulator implanted or have it removed.

Natasha: What has been the most difficult part of the process so far?

Marilyn: The surgery and recovery were probably the most difficult.  Aside from that, the most challenging part is remembering to actually charge the devices. Like any other electronic device, if the battery runs out, they won’t work. I’m not used to having to charge something that’s inside my body, LOL!

Natasha: What do you think the outcome of this study could potentially mean for people with spinal cord injuries in the future?

Marilyn: If the stimulator can effectively regulate blood pressure, I think it will lead to a general improvement in the quality of life for individuals with spinal cord injuries. One of the researchers mentioned to me that many of the individuals that they have screened aren’t even aware that the symptoms they are having are related to blood pressure. Although I knew low blood pressure was disruptive for me, I didn’t realize how much it really impacted my life until I started participating in the research study. When they increase my blood pressure during our sessions, I feel so much more alert, awake, and able to concentrate, compared to normal.

If the study is successful, it will be one more step towards having epidural stimulators approved by Health Canada for the treatment of orthostatic hypotension. They could then be used as part of the routine treatment for individuals after a SCI, and the devices should be more readily available. Currently, the devices are only authorized in Canada for controlling chronic pain, so anyone who wants to have one implanted for other purposes (including blood pressure control and motor function) must spend money out of pocket and travel outside of Canada or have it done as part of a research study (like this one). It’s a shame that this type of treatment is currently out of reach for most individuals who could benefit from it.

Natasha: Thank you, Marilyn, for sharing your experience for International Day of People with Disabilities. We wish you all the best in recovery and a higher blood pressure!

MARILYN Germaine, B.Sc., P.Ag.   (She/Her/Hers)