We hold regular Hope Talks because it’s important to us to extend resources to our client communities—not just so they can succeed in fundraising, but also so they can access trusted insights, tips, and information from industry leaders, influencers, and fellow patients.
Earlier this year, we were joined by Nurse Linda Schultz—she gave a memorable Hope Talk on COVID-19 and how it affects the paralysis community.
Through her research and personal experience, she answered many of our viewers’ questions about fears of getting sick, whether the vaccine is safe to receive, and how to continue to stay healthy throughout this trying time. She also had some time to answer everyday questions about living with an SCI.
Here are the answers to all the questions that Nurse Linda wasn’t able to answer live.
Watch the complete Hope Talk with Nurse Linda here:
Is there somewhere we can register to find a way to get the vaccine?
Individuals with spinal cord injuries do qualify as being part of the immunocompromised group. I understand that it has been a challenge to get a vaccine, but please do check your local health department. They are typically managed by counties. There you will find the schedule for vaccination. They will have a sign up for vaccines.
Local hospitals will also each have a separate signup list, and Walgreens, CVS, and some Costcos are providing vaccines. You can sign up there as well.
Do you think that the state will eventually vaccinate individuals in wheelchairs at their homes rather than having them wait in person?
I wish!!! Eventually, you will probably be able to get a vaccine through home health, but not now. If you don’t wish to stand outside in long lines, you can sign up at most hospitals.
Each state does their own thing, so it is difficult to predict when more organization of vaccinations will occur in different areas. Typically, many places give appointments, but since the process has been so slow, some people are trying to skip ahead. That slows down the system and makes for even longer lines.
I am in a wheelchair. I want to get a vaccine, but I'm concerned about side effects…I want to know if U.S. approved vaccines, Pfizer and Moderna, are safe for me to take. I have contacted my surgeon and other doctors but have not received an answer. Any advice?
I would love to have the answer to that question! You will have to keep checking with your health professionals for an answer. Since each situation is unique, I defer to those who know your individual case.
There is risk for anything that you put into your body, from medications to food and drinks. There is no virus in the Pfizer or Moderna vaccines that would trigger a reaction in that way, but the substances in the vaccine might still have some effects.
Can you explain if there may be a link between bowel discomfort and leg spasticity in an elderly paralyzed patient?
Absolutely: spasticity is triggered by any discomfort in the body, including the bowel. In the same line of thinking, there is an adage in healthcare: what you see on the outside is what is happening on the inside. In other words, if you have spasticity in the legs, you probably have spasticity in the bowel.
There are treatments to help reduce spasticity in the body as well as in the legs. This can be administered through oral medications or an implant device such as a baclofen pump to calm spasticity.
Oral medications affect the whole body and are used first. If they are not effective, or if the side effect of the drug is making you too drowsy, the pump is investigated to see if it would work for you. The oral drug is a first line of treatment, Botox injections are second, and third is consideration of the pump.
Is there a recommendation for SCI patients to have a longer waiting period between the first and second vaccination shots?
As far as we know, the time between vaccination shots for individuals with SCI is the same as for everyone else. Pfizer wait time is three weeks; Moderna is four weeks.
These both work on the mRNA of your cells, so the process of gaining immunity to COVID is a bit different from a vaccine that uses tissue. If you are unsure for your personal situation, always check with your own healthcare professional. Some individuals with certain cancers are being asked to wait longer between vaccinations, but that is a different situation.
What has been the reaction of those with SCI after receiving the COVID vaccine (first or second doses)?
So far, there has not been a report of significant issues with the vaccines and SCI. I would be alert for signs of autonomic dysreflexia or increased spasticity, but that is the rehab nurse in me, not a reaction to reported events.
Are there any statistics regarding people with SCI who have contracted COVID and their outcomes?
This data has not yet been reported. The CDC is collecting information on their site through a system called V-safe. I hope all those with SCI will report adverse events as well as reporting no adverse events. This information will be so valuable to the community. Knowing side effects and the number of individuals with SCI without side effects will be critical information.
What have been the responses to COVID-19 from patients with paralysis? Are there any good resources for recovery models/exercises for recovering from COVID-19 for those with paralysis?
This data is not yet available. Recovery models have not been developed, except for the usual treatment of new or exacerbated conditions.
With COVID-19, have you seen more people participating in virtual support groups?
Indeed: virtual is rocking the world. You can participate in online exercise for the general population or more specific types of activities tailored to individuals with SCI. Both Craig Hospital and Shepherd Center have online exercise videos that have been available since even before the pandemic. They are very helpful!
Moving Forward Together
We are so grateful to Nurse Linda for talking with our community and sharing her expertise regarding not only COVID-19 concerns but all other SCI-related issues.
Please click here to view the rest of our Hope Talks!
If you or someone you know would like to fundraise for SCI-related expenses with a trusted and experienced medical fundraising nonprofit, submit a campaign request for Help Hope Live.Written by Sonny Mullen