Spinal Cord Injury and Coronavirus (COVID-19)
As promised, we've committed to updating this blog as often as possible. We will update as often as possible as information, relevant to people with spinal cord injury/damage, comes to hand.
This update comes as our family have made the decision to self-isolate as a family - not due to any illness or know exposure but purely out of precaution. While this may seem drastic/alarmist to some, not all families have the same health considerations as ours. As Dane has a high-level spinal cord injury, he is considered “high-risk” should he contract the virus (people with high level spinal cord injury have reduced respiratory function and are therefore more susceptible to contracting respiratory diseases, such as pneumonia). So we've gone beyond what the Australian Government is currently recommending and are therefore taking a more cautious (proactive) approach in the face of this pandemic by going into “lockdown.” This also includes taking the our boys out of school/kindy and working from home (which we're fortunate enough to be able to do).
The below updates to this blog have been written in blue font to distinguish the new from the "old".
Stay safe. Stay healthy!
I, like many people in my situation who are reading this blog, am searching for some clarity regarding how coronavirus (COVID-19) may affect people with spinal cord injury/damage. I preclude this by declaring that I am not a medical professional. I am simply a person with lived experience (C5, quadriplegia) searching through the hysteria and media-hype, trying to find some source of truth.
Now, I’m not about to dive into the facts and figures regarding the number of cases here in Australia or around the globe. If you want to find that information, I recommend heading to the John Hopkins University website for the latest “headcount” on who’s been infected, where. This blog is solely dedicated to providing the SCI community with a collation of information related directly to people with spinal cord injury (or spinal cord damage).
If you, like me, have been searching for information directly relating to people with spinal cord injury, you’ve probably found it pretty frustrating and void of any solid information. And that’s the unfortunate fact; as a new and unknown virus, there simply isn’t enough information or actual documented cases of people with spinal cord injury having contracted the virus to know just how/if it affects people with spinal cord injury to draw any conclusions for the rest of us.
In an attempt though to make it easier on the rest of us, I have pulled together the following information to help navigate through the “noise”.
Relevant Information to the Person with Spinal Cord Injury (published so far)
The first and most obvious conclusion that I (and I’m sure many others in my situation) have drawn is that the coronavirus is a disease that effects the respiratory system. As we know, and backed by endless research including the U.S. National Library of Medicine, who state;
“Respiratory dysfunction is a major cause of morbidity and mortality in spinal cord injury (SCI), which causes impairment of respiratory muscles, reduced vital capacity, ineffective cough, reduction in lung and chest wall compliance, and excess oxygen cost of breathing due to distortion of the respiratory system.”
Beyond the obvious though, after sifting through the pages and pages of coronavirus “news” articles, fantasisations and hysteria, I’ve managed to source a few articles that I feel are worthy of sharing…
Centers for Disease Control (CDC) - USA ( https://www.cdc.gov/coronavirus/2019-ncov/downloads/community-mitigation-strategy.pdf )
The Centers for Disease Control and Prevention (CDC) is the leading national public health institute of the United States. It is also a United States federal agency under the Department of Health and Human Services and is headquartered in Atlanta, Georgia. Its main goal is to protect public health and safety through the control and prevention of disease, injury, and disability in the US and internationally.
The CDC have released a document on "Implementation of Mitigation Strategies for Communities with Local COVID-19 Transmission" in which they state that the goals for using mitigation strategies in communities with local COVID-19 transmission are to slow the transmission of disease and in particular to protect:
Individuals at increased risk for severe illness, including older adults and persons of any age with underlying health conditions (See Appendix A)
Then listed at Appendix A are people identified as having "underlying medical conditions that may increase the risk of serious COVID-19 for individuals of any age." Included within that list is;
Neurological and neurologic and neurodevelopment conditions [including disorders of the brain, spinal cord, peripheral nerve, and muscle such as cerebral palsy, epilepsy (seizure disorders), stroke, intellectual disability, moderate to severe developmental delay, muscular dystrophy, or spinal cord injury].
The Shepard Centre ( https://news.shepherd.org/qa-coronavirus-disease-2019-covid-19/ )
The Shepard Centre, located in Atlanta, Georgia USA, is a private, not-for-profit hospital specialising in medical treatment, research and rehabilitation for people with spinal cord injury, brain injury, multiple sclerosis, spine and chronic pain, and other neuromuscular conditions. Their information is second-to-none when it comes to spinal cord research, so I’ve valued their article on the coronavirus and its (possible) effects on the SCI community. The information provided by the Shepard Centre, relevant to people with spinal cord injury, states;
From the limited data that are available, it is possible that older adults, and persons who have underlying chronic medical conditions, such as immunocompromising conditions, may be at risk for more severe outcomes.
It is critical that you take every possible precaution as you are at greater risk to develop more serious symptoms and may have an increased risk of death.
The most important precautions are washing hands frequently and avoiding close contact with anyone who may have been exposed to coronavirus.
As coronavirus is a respiratory infection, you are at much greater risk of severe infection and increased mortality if you acquire coronavirus.
Avoid traveling to affected areas, traveling on planes or large group gatherings.
Wash your hands frequently.
The Shepard Centre ( https://news.shepherd.org/what-you-need-to-know-coronavirus-and-people-with-spinal-cord-injuries-brain-injuries-or-ms/ )
Also from The Shepard Centre, an interview with their Chief Medical Officer, Dr Michael Yochelson, discussing “What You Need to Know: Coronavirus and People with Spinal Cord Injuries, Brain Injuries or MS” where he mentions the following;
Certainly in those specific patient populations that you asked about and the ones that we treat here at Shepherd Center like multiple sclerosis, spinal cord injury and brain injury; it is likely that there is some increased susceptibility or at least that if they were to develop it, that they may have a more severe illness.
The challenge that we have particularly with multiple sclerosis is often they are on medications that may cause some immunosuppression and in brain injury and spinal cord injury population, particularly spinal cord; if they already have underlying respiratory disease; they are more likely to have a very severe case if they do develop it.
There aren’t really any special precautions for someone on a ventilator other than they should certainly use every precaution that we possibly can and again, these are precautions to getting the disease in the first place.
If somebody, if they have a known person with the Coronavirus; they certainly should not be around that person, travel to areas where it has been noted to be more prevalent and then washing hands is probably the most important thing that anybody can do.
So, really just taking every possible precaution to avoid getting the disease in the first place.
The Christopher & Dana Reeve Foundation ( https://www.christopherreeve.org/blog/life-after-paralysis/the-flu )
While they need little introduction within the SCI community, the Christopher & Dana Reeve Foundation are dedicated to curing spinal cord injury by advancing innovative research and improving quality of life for individuals and families impacted by paralysis. The information currently available from the Christopher & Dana Reeve Foundation groups (possibly naively) coronavirus and the flu in the same blog. Speaking to the similarities between coronavirus and the flu, the Christopher & Dana Reeve Foundation state that;
Flu can be especially hard for individuals with spinal cord injury and other types of neurological disease. Lung capacity and volume can be affected by the flu making it more difficult to exchange oxygen in your body. Getting a good deep breath by pulling air into your lungs can be hampered by muscles not working as strongly as necessary.
Spinal Injuries Association – UK ( https://www.spinal.co.uk/news/coronavirus-and-spinal-cord-injury/ )
Spinal Injuries Association, based in the United Kingdom, are the expert voice and leading source of information and advice for people with spinal cord injury (SCI) in the UK. As part of their work, Spinal Injuries Association (UK) have been advocating to the Department of Health & Social Care, all Spinal Cord Injury Centres, NHS England and the Chief Medical Officer within the UK to ensure that they are aware of the particular vulnerability to virus’ experienced by SCI people and seek assurances that they are putting appropriate plans in place to mitigate these needs. Through their work, they have published the following information;
We are seeking confirmation that the NHS consider and therefore will respond to SCI people as ‘a high risk category’ in relation to the Coronavirus and its likely impact, as many SCI people have a reduced immune system and/or respiratory issues that make them more susceptible to respiratory infections.
In all enquires about Coronavirus we recommend SCI people state that they are spinal cord injured and therefore potentially a higher risk category for support.
The Perry Cross Spinal Research Foundation ( https://www.pcsrf.org.au/special-message-in-relation-to-the-coronavirus-developments/ )
Closer to home (for us here in Australia), the Perry Cross Spinal Research Foundation is leading Australia’s research into spinal cord injury. The PCSRF aims to facilitate, collaborate and initiate the connections and research required to find a cure for paralysis. The PCSRF have released the following statement, delivered by Dr Dinesh Palipana (a doctor with lived experience in spinal cord injury himself);
In the video, Dr Palipana explains the following;
People with spinal cord injury, particularly high level ones, are vulnerable to complications from any respiratory infection. This is because their respiratory function can be significantly compromised. Additionally, people with spinal cord injuries are in close contact with different people involved in their life every day. Such contact can increase the risk of disease transmission if appropriate infection control measures are not taken.
Therefore, it is prudent for people with spinal cord injury to be vigilant during this time and monitor health authority recommendations.
Again, from the Shepard Centre, USA, they’ve published the following;
We recommend you plan ahead by taking these steps (source: Center for Disability Rights ):
Ensure you have sufficient backup caregivers in case your regular caregiver cannot work.
If a caregiver does not show up for work, ensure you have the ability to get assistance.
Have at least a week of non-perishable food in your home at any given time and identify people who can assist with shopping or delivery.
Stock up on other important supplies (e.g., toilet paper, cleaning supplies, hygiene products, etc.).
Identify a way to make sure you can get your medications in a timely manner such as having friends or family assist you or using a pharmacy that offers prescription drug delivery.
Plan for your pets by stocking pet food or arranging a backup caregiver.
Have backup caregivers wash their hands and use hand sanitizer when they arrive and each time prior to touching or feeding you.
Regularly clean, sanitize and disinfect the surfaces that are touched in your home to prevent spread of infection.
Use disinfecting wipes on items that are frequently touched.
Have your caregiver wear a surgical mask if someone close to him/her becomes sick.
Urge caregivers to seek medical care if they are sick and utilize your backup attendants.
Spinal Life Australia ( https://www.spinal.com.au/news/coronavirus/ )
From Spinal Life Australia, one of Australia’s leading organisations delivering services for people with spinal cord damage, they’ve published the following;