14:03:15 you. >> Okay, everybody, I guess we're going to going started 14:03:19 now. Welcome, everyone, to 14:03:22 today's IM session on spinal cord 14:03:25 injury and the COVID-19 vaccine. This 14:03:29 discussion is very important to everyone. It affects us all and we must all 14:03:32 do our part to make sure that our families and 14:03:35 friends are safe. Today we're 14:03:38 presenting information so that you can make an informed choice 14:03:42 for yourself and your family. I would like 14:03:44 to first introduce our 14:03:48 cohosts and thank them for their dedication to the 14:03:51 community. That is John Michaels, he is the assistant 14:03:54 director for resource of Norfolk public schools 14:03:58 independence and 14:04:02 Serena Joros. Serena is going to take 14:04:05 us into just some housekeeping rules. 14:04:13 Serena? >> Hi. I'm Serena, I'm the 14:04:16 COVID coordinator. I'll be minding the chat today. 14:04:19 Note, we are recording and this will 14:04:23 be up in a few days on Youtube. I 14:04:26 will be minding the chat if you guys have questions and comments when 14:04:30 there's time I'll ask or let people know. For 14:04:32 those of you who the chat 14:04:36 is not accessible, you can e-mail me. I 14:04:39 can just say -- should I say it out loud? Yeah. 14:04:42 So my e-mail is 14:04:55 sjaros@innow.org. I can put it in the chat. Perfect. So yeah, 14:04:58 that's in the chat if you want to ask a 14:05:02 question or comments, I'll get on 14:05:08 that. >> Thank you. >> And I'm introducing -- I 14:05:12 was going to introduce -- I'm 14:05:16 done. >> And remember if you could please just wait until 14:05:19 the very end to ask your 14:05:25 questions. If you don't feel like you have the time or want 14:05:28 to e-mail Serena, you can take yourself off mute to ask 14:05:31 your questions. We're going to 14:05:34 move forward and get things started. Today 14:05:39 we have Ian, the 14:05:42 editor of the New Mobility magazine, the 14:05:46 longest running and most read 14:05:49 publication for activities for active wheelchair 14:05:52 users. He joined the rank of active wheelchair 14:05:56 users 23 years ago when he sustained 14:06:00 a C-5 spinal cord injury in a 14:06:03 rollover vehicle accident. 14:06:06 His background is in journalism and a passion 14:06:10 for uplifting the voices of the 14:06:13 disability community. Ian lives 14:06:17 alone in Portland, Oregon, where he can often 14:06:20 be found trying out the newest restaurants -- my kind 14:06:23 of guy -- and food carts and exploring 14:06:27 the Pacific Northwest. Thank you for joining us. He is going to talk about 14:06:30 his experience with the COVID 14:06:34 vaccine. >> Hey, thanks so much Shannon, it's a 14:06:37 pleasure to be here with you guys. I'm going to try 14:06:40 to share my screen and hopefully this will 14:06:43 work. If it doesn't, let me 14:06:48 know. I'm probably the least qualified person on 14:06:52 this call so I want to be respectful of all the people with way 14:06:55 more credentials and more to say than me. I do have a 14:06:58 couple things I wanted to share about my own experience. Because I'm 14:07:01 the editor of New Mobility we were able to put 14:07:04 together a real brief survey and we got a pretty good response 14:07:07 from just over 400 people with spinal 14:07:10 cord injuries who have or haven't had the vaccine. I thought there 14:07:13 were interesting takeaways to share that might help to 14:07:17 frame the discussion. First a little bit about 14:07:20 myself, like Shannon said I live in on 14:07:23 Oregon by myself. I'm in a power chair for those of you 14:07:26 can't tell. I've got my handy little cups going. 14:07:30 Rolling around. I've had both doses of 14:07:32 the Moderna vaccine about two months ago 14:07:37 now. And personally didn't have any response to either of 14:07:40 them. The shots were below my level of 14:07:44 sensation. I didn't even feel it, to tell you the truth my arms never 14:07:48 hurt. I didn't have anything else beyond that. 14:07:51 So that's my own experience. I've been 14:07:55 lucky, knock on wood, to stay healthy. God bless for 14:07:59 that. I have talked to a lot of people through the 14:08:03 magazine. Prior to doing this 14:08:06 survey about the -- about their experience with the 14:08:10 vaccines. Got a lot of feedback. You know, 14:08:13 the overwhelming majority of them I think would say that aside from sore 14:08:16 arm or maybe 14:08:19 feeling pretty lousy the second day especially after the second shot that they've 14:08:23 had minor reactions. Doing this survey it's been 14:08:27 enlightening to see other responses and to see kind of the breadth of 14:08:30 the experience. That's just kind of what I wanted to share here. 14:08:33 I put up the website for those of you who don't 14:08:38 know, newmobility.com. 14:08:41 I encourage you if you have time or interested to go there and check it 14:08:44 out. We've been doing a lot 14:08:48 of coverage for the spinal cord community. Let me move 14:08:50 on -- >> Since you're talking about my hometown, this is mike 14:08:54 Bullis, if you're talking about Portland, what part of Portland are you 14:08:57 living in? >> Southwest Portland. >> All right, 14:09:00 you're in my 14:09:04 hometown. >> There you go, excellent. 14:09:07 Yeah, so we did this survey, as you 14:09:10 can see here we got 367 14:09:14 total respondents and 82% of those had received 14:09:17 one or two doses of the vaccine. 14:09:20 So a pretty good number of people we're talking 14:09:23 about here, a varied 14:09:27 experience. And we ask just very straightforward 14:09:30 questions. 72% of the people who had been 14:09:34 vaccinated said they had concerns about the safety 14:09:37 going in or even after having 14:09:41 that. 78% of the people who hadn't received the 14:09:44 vaccine yet said the same thing. Overall 14:09:47 it's a little over 70% of people with spinal 14:09:51 cord injuries. I'm going to get to some of those concerns in a 14:09:55 second. Just 14:09:59 the high-level stuff here. 60%, 14:10:03 about 223 said they felt they had accurate -- 14:10:07 enough information about how the vaccine would affect 14:10:10 people with spinal cord injuries and disorders. Which I 14:10:13 thought was an interesting -- I think 14:10:17 it speaks to there maybe could have been more education 14:10:19 going in to help people understand what this really 14:10:22 means for our disability and kind of the things we deal 14:10:26 with. To me, I think maybe the most interesting of the simple 14:10:30 takeaways was that while 60% of the 14:10:33 people who received the vaccine said they had had 14:10:36 some reaction, an overwhelming 94% 14:10:39 said that if they needed to have another vaccine or 14:10:43 another shot in the future, they would be willing to do it. 14:10:46 So, you know, just 14:10:49 despite some of the reactions and symptoms and stuff people 14:10:52 felt, I think -- people who did go through with it felt pretty good 14:10:56 about it. Real quickly, I want to move 14:10:59 on here. This was some of the comments, I just 14:11:02 put these up on here you guys can read them. I'm happy 14:11:05 to share this if you want to distribute it later for people 14:11:08 who want to look over it more. I'm 14:11:13 not going to go over all these. About the concerns, I tried to pick out a 14:11:16 few. We got hundreds of response said about this. There were 14:11:19 more about specifics for spinal cord injury. I feel 14:11:22 like I'm a one in a million something bad 14:11:26 would happen to. I wish there would have been a 14:11:29 place I could ask spinal cord injury specific questions before. I 14:11:32 feel like people with disabilities were left out of the 14:11:35 clinical trial process. You know, I didn't see any mention 14:11:38 of spinal cord injury when I was reading about this 14:11:41 stuff. I didn't know if it was safe. I had concerns 14:11:45 about how it would affect my respiratory 14:11:48 system. The information on drug interaction with some of the drugs I 14:11:51 take is sketchy. Just some of the -- those are 14:11:55 from people who did get the vaccine. 14:11:58 This slide shows from people who didn't 14:12:01 get the vaccine or have not yet got the vaccine, some 14:12:05 of their concerns which were a little different. Worried 14:12:09 about blood clots. That it wasn't tested enough on people 14:12:11 with spinal cord injuries. Have already had the 14:12:15 virus. Why would I get a vaccine, it has 14:12:19 a 99.8% survival rate. Vaccine 14:12:22 causes inflammation. A 14:12:25 lot have to deal with that. It's only approved for emergency 14:12:29 use. You know, what does that mean. 14:12:33 These were things that were said multiple times, I just pulled out one 14:12:36 here. But I thought there were interesting answers there. And 14:12:39 then, lastly, from the people 14:12:43 who had a reaction, this was also I think telling. I spoke to 14:12:46 a number of people with spinal 14:12:50 muscular atrophy and a few of them responded to this who said that 14:12:53 they had 14:12:57 prolonged neurological pain and loss 14:13:01 of function after the vaccine. When I say 14:13:04 a number, three or four of the people, a number of 14:13:07 them didn't have any. I thought that was interesting. I hadn't 14:13:10 seen that before. They're still 14:13:13 dealing with it. All those people said they would still do it 14:13:16 again but it was an unexpected side effect. Weakness 14:13:19 and fatigue, more nerve pain and some of the more 14:13:22 common things like weakness in your upper 14:13:27 limbs, inflammation, blah, blah, blah. A lot of different 14:13:30 responses. Things to be aware of and the last 14:13:33 thing, I'll put a couple. These were answers from people who had 14:13:37 not or had not yet or didn't plan to get the 14:13:42 vaccine. What could be done to alleviate 14:13:45 your concerns about the vaccine. More direct 14:13:49 SDI info, more 14:13:52 anecdotal evidence, more time, more testing, and then 14:13:56 learning about spinal cord injury 14:14:00 experiences. That's all I got. I thought it was helpful and 14:14:04 interesting to see a broad swath from 14:14:07 our community and we'll pass it along to 14:14:10 the next presenter to 14:14:13 share. Thank you so much for having me here, guys. >> Thank you so 14:14:17 much, Ian. Remember, everyone, 14:14:20 we'll take your questions for Ian after all of the 14:14:23 speakers have spoken. Our next presenter 14:14:26 is Dr. Gros, a director of 14:14:31 spinal cord injury research programs at Red 14:14:33 Star National Rehab hospital and 14:14:39 professor at 14:14:42 Georgetown University. Dr. Gros, are you here? >> I 14:14:45 am. >> Hi, 14:14:49 Dr. Groah. >> We have two specific questions that we 14:14:52 wanted you to be able to 14:14:55 answer. One of them is it all 14:14:58 happened so fast that I don't know if it has been 14:15:01 tested well with people with spinal cord 14:15:05 injury. And the other one is what are the 14:15:08 most common side effects in general and have you heard 14:15:11 of any new or different side effects 14:15:15 within the spinal cord injury community? >> Okay, 14:15:18 thanks. Thanks everybody for having 14:15:23 me. So I will take the -- I guess 14:15:26 the first question 14:15:29 first. It 14:15:32 happened so fast and address the safety. That was one of the comments I wrote 14:15:35 down from Ian's presentation as well. There was 14:15:38 a comment that he put up there from someone who said 14:15:42 has the safety been adequately tested or something like 14:15:45 that. So I'm 14:15:49 fortunate to be part of the Medical equipment 14:15:52 Med star 14:15:55 system. We get a ton of data. I've had the benefit 14:16:00 regarding COVID especially of being able to see that 14:16:04 data pretty, you know, live and realtime. So 14:16:07 regarding the safety, we've been talking about this at a high 14:16:10 level for a 14:16:16 while. In terms of the testing of vaccines, the testing of the vaccines 14:16:19 was not compromised at all. And what 14:16:23 the emergency use means is it means that 14:16:26 it's put into action quicker. And in terms 14:16:29 of the research end of it, the testing of the vaccine, 14:16:32 the part that was cut short to accommodate 14:16:36 sort of the emergency use was the 14:16:40 long-term follow up. Usually with 14:16:43 vaccines, people are followed for six months 14:16:47 or even longer. With these vaccines, at 14:16:50 least the Phizer and the 14:16:54 Moderna they were followed for three months for, you 14:16:57 know, adverse events, safety issues, stuff like 14:17:01 that. But all the testing leading up to that 14:17:04 point was actually the same or similar 14:17:07 as with other vaccines. 14:17:10 I have slides here, I have some sof our 14:17:14 Med Star slides, I don't know if you want to see them, you 14:17:17 can direct me. I can tell 14:17:20 you with the Phizer vaccine in 14:17:23 particular, I think it was something -- a little 14:17:28 over 37,000 people got that vaccine when it was 14:17:31 in trial. And it was pretty 14:17:34 equally distributed. Half of those people got a 14:17:38 placebo. They either got the vaccine and a placebo 14:17:42 and it was evenly distributed between males and 14:17:47 females. 37,000 plus is a pretty darn good number, especially 14:17:50 to implement, you know, this clinical trial so 14:17:54 quickly. So just consider it's just the 14:17:58 more remote long-term, more 14:18:02 than 3 months effects that the 14:18:06 FDA -- and the study investigators didn't know about going into 14:18:09 this. However, that's 14:18:13 when it was approved in December but we're learning more and 14:18:16 more about that now. Especially with the Phizer and the 14:18:19 Moderna vaccines that have been approved for longer in this 14:18:22 country, literally every week, every other week, you 14:18:26 know we're getting updated numbers. Like a good example is a couple 14:18:29 weeks ago the CDC put out when they -- because the 14:18:32 Phizer and the Moderna vaccines are similar, 14:18:36 kind of mechanistically, 14:18:39 they looked at them together and what they found was -- as of 14:18:43 about a month ago -- 80% efficacy 14:18:45 with those vaccines just after one dose. 14:18:49 But now those numbers are even a little bit higher. 14:18:53 So yes, it happened fast, without a doubt. But 14:18:56 the good news is, in my mind, the clinical 14:18:59 trials also happened fast and they were really 14:19:02 quality clinical trials. And the gap that we had 14:19:06 in our knowledge when they got approved for emergency 14:19:09 use we're filling now with 14:19:12 increased time. I hope that answers that question. 14:19:17 And however you all want to do it, 14:19:20 Shannon, I'm happy to field questions now or at the 14:19:25 end. However it works for you on that question. >> I 14:19:28 am late to this. 14:19:31 What is this all 14:19:35 about? Is this about injuries? >> It's 14:19:38 about spinal cord injury and the COVID 14:19:43 vaccine. >> Oh. >> If you have any questions, we'll 14:19:46 take your questions at the end of the session. 14:19:50 Okay? After the end of the last 14:19:53 person that speaks. Okay? >> I'm 14:19:56 sorry, Shannon, can you repeat the other question for me sne. >> 14:19:59 The other question was what are the most 14:20:02 common side effects in general have you 14:20:07 heard of? >> So the most common side effects -- 14:20:12 again, because the Phizer and Moderna vaccines have been 14:20:15 approved for longer we've seen more people who have received those 14:20:20 vaccines. And it's very individual, sort of on the 14:20:24 spectrum. I've had a number of patients 14:20:27 myself who really didn't notice anything much 14:20:30 at all. The side effects are really very 14:20:33 typical with what you're hearing, sort of broadly 14:20:37 across this country. So maybe some arm 14:20:41 soreness. Some fatigue. Oftentimes -- 14:20:45 fatigue, arm soreness, maybe some fever and chills. What I do 14:20:48 hear a lot is that people experience 14:20:52 that, it's oftentimes this 24 14:20:57 hour period and then they feel better and 14:21:00 keep going on. Oftentimes the people 14:21:03 who did experience side effects 14:21:06 like those at their first injection will often 14:21:09 experience them in their second injection, that's pretty 14:21:12 common. Oftentimes they might even be a little bit 14:21:16 worse. I do want to point out -- those are kind of 14:21:19 the typical side effects for the COVID vaccines. I have 14:21:23 not had anyone come to me and I haven't heard like sort 14:21:26 of written up from the literature or 14:21:29 anything. Ian thank you for that survey data, that's very, 14:21:32 very interesting to me. I haven't heard anyone 14:21:35 tell me they have problems with 14:21:39 nerve pain or increased nerve pain. The 14:21:42 weakness and fatigue doesn't 14:21:45 surprise me so much because I think that is commonly 14:21:48 seen. What I've also seen is for individuals 14:21:52 with spinal cord injuries especially, I think 14:21:56 if there's anything that sort of keeps people down, even for 14:21:59 a day, two days, three 14:22:02 days and keeps you from your active lives, I feel like 14:22:05 the implications functionally tend to 14:22:10 be greater. So I kind of wonder when I heard 14:22:13 that if the weakness and fatigue are going hand 14:22:17 in hand with a period of bed rest, too. 14:22:19 Those are the common symptoms that 14:22:23 I'm seeing from the vaccine 14:22:28 itself. >> Thank you so much. And like I 14:22:32 said, everyone, if we could just 14:22:36 wait, it will probably be another like ten minutes with your 14:22:40 questions. John, you want to take over from 14:22:48 here? >> 14:22:55 >> I'll be introducing 14:22:59 Dr. Shehan and Dr. Stone. Dr. Shehan is 14:23:03 the chief medical 14:23:06 officer 14:23:10 at 14:23:14 Adventus healthcare rehabilitation 14:23:17 and acute rehabilitation facility and specialized 14:23:21 in traumatic brain injuries, spinal cord injuries, strokes, 14:23:25 amputation, orthopedic injuries and surgeries and neurological 14:23:29 disorders. The two questions that 14:23:32 we had surveyed for 14:23:36 Dr. Shehan is my body has already been through so much that I don't 14:23:40 want to have to go through whatever the vaccine 14:23:44 might cause. And a close friend of mine was 14:23:48 hospitalized after receiving the vaccine and that scares 14:23:52 me. Dr. Shehan, would you like to answer those two 14:23:58 questions? >> It looks 14:24:02 like -- John, I'm scrolling through. It looks like we don't 14:24:06 have Dr. Shehan 14:24:09 on. Did you want to go ahead with the next 14:24:13 doctor? >> So then we'll move on with 14:24:16 Dr. Stone. Dr. Stone is a disease and 14:24:19 infection specialist, fourth senior 14:24:24 contributor and scientist 14:24:28 journalist. She's the author of conducting 14:24:31 clinical research and 14:24:41 resilience. Her family's story of rebuilding their 14:24:44 lives after the 14:24:49 Holocaust. Will the vaccine cause blood clots 14:24:52 or breathing issues and your thoughts with the Johnson and Johnson 14:24:55 vaccine and can you tell us the difference between 14:24:58 a live virus and 14:25:03 the mRNA. 14:25:11 Dr. Stone? >> The things I have to do to see 14:25:16 you, John. I've known for 27 years you 14:25:20 said? >> Pretty close, yep. >> Pretty 14:25:25 amazing. If you pull up the first slide I wanted to 14:25:29 show you a couple of things as background so you understand the 14:25:32 vaccines better. 14:25:43 This is what the diagram of 14:25:47 what a COVID-19 virus looks like. The main thing 14:25:50 to note from this is that it has these little spike 14:25:53 proteins on the outside of 14:25:57 the virus. That's how the virus 14:26:01 attaches to our cells. Inside you have 14:26:04 a gene for the protein. Next, 14:26:08 please. 14:26:14 So the way this works 14:26:17 with mRNA 14:26:21 vaccines which are Phizer and 14:26:24 Moderna's, they figured out 14:26:27 how to isolate 14:26:32 the messenger RNA from the rest of 14:26:35 the virus and that put that in a 14:26:39 lipid 14:26:42 fatty container to protect 14:26:45 it. It enters the cell that way. And the 14:26:48 spikes, once it's in the cell, the 14:26:54 protein, the mRNA is activated and 14:26:58 makes these little spikes that you see on the 14:27:00 top of the circle. These 14:27:03 proteins combine and make a spike and that go to the outside of the cell 14:27:06 just like you saw 14:27:09 previously. Those spikes then are recognize pd by 14:27:12 recognized by our immune cells and it's how 14:27:16 we make antibodies and prevents us from getting 14:27:19 infections. One of the things you see here is 14:27:23 that the key take home message is 14:27:27 that the mRNA vaccines, none of these 14:27:30 vaccines actually can give somebody COVID. They're 14:27:34 not alive. They contain a fragment 14:27:38 of protein, a 14:27:42 fragment of RNA that codes from making the spike protein 14:27:45 alone. Nothing alive, nothing that can give you COVID. 14:27:49 Next, please. 14:27:54 The aden novirus vaccines for 14:27:57 Johnson and Johnson and 14:28:00 AstraZeneca, they're using slightly different kind 14:28:03 of adenovirus which is related to the common cold 14:28:08 virus. Here parts of the 14:28:12 virus, the red squiggly things you see are inserted 14:28:15 into the adenovirus to deliver it to the 14:28:18 cell. Once it's in the cell, 14:28:21 again, it -- the 14:28:29 virus injects its DNA which is translated to 14:28:32 mRNA and makes the spike protein which goes to the outside of 14:28:35 the cell. Again, there's nothing live, there's just a 14:28:39 fragment of protein. 14:28:43 Hopefully that helps you understand a little bit about the differences in 14:28:46 the vaccine and how they work in this 14:28:50 case. So the main thing I wanted to emphasize to 14:28:53 you are the -- I'll go ahead, the question about 14:28:56 your concerns about safety and clots in particular. Because there was 14:28:59 such a bruha-ha over the 14:29:02 Johnson and Johnson 14:29:07 vaccine over there being a hold put on it of 14:29:10 seven cases of unusual clotting that we're seeing 14:29:15 worldwide. These vaccines are 14:29:18 extraordinarily safe. I shared concerns when they first 14:29:21 came out because there wasn't enough data for my 14:29:25 liking about autoimmunity in 14:29:30 particular and unusual patients who may have predisposition 14:29:33 to having side effects. Now we've had millions 14:29:37 of people tested. So if you're 14:29:40 worried about clots, the risk of a clot from the 14:29:44 vaccine translate to one in a million. That's not very 14:29:48 high. Okay. The risk of you getting struck by 14:29:51 lightning is 1.3 per 14:29:55 million. Of getting a clot from smoking is 18 per 14:29:58 million. Of getting a clot from COVID infection 14:30:03 is 165,000. Of getting a clot from birth 14:30:06 control pills is 500 per 14:30:11 million. And that's similar to the risk of pregnancy. It may 14:30:14 be higher for that than birth control 14:30:17 pills. Want to worry about drying? Worry about 14:30:21 gunshot deaths, it's 10,000 per million overall 14:30:26 and 25,000 per million die among blacks 14:30:29 from gunshot wounds each year. 14:30:32 Just by having a 14:30:36 spinal cord injury, many of you may have already had a blood clot 14:30:39 in your leg. You may have had a 14:30:43 pulmonary embolism where the 14:30:46 clot goes to the lung. The 14:30:49 risk 14:30:53 for spinal cord 14:30:57 injury is 14:31:01 100,000. Next, John. 14:31:04 There have been more than 211 million COVID 14:31:07 doses given just in the 14:31:10 USA and many more given Internationally. The death rate 14:31:13 from COVID infection is about 14:31:16 2%. The other risk that people don't talk about 14:31:21 much is what is a major concern is that of becoming 14:31:24 what's called a long hauler, which is now officially 14:31:28 been renamed 14:31:31 PASC. Having your chance of becoming chronically 14:31:35 ill from COVID is about 14:31:38 10%. So to my mind, as I looked about whether to take these 14:31:41 or not, we now 14:31:44 know far more than we did when they first came out. 14:31:48 As Dr. Groah said they were 14:31:51 well-studied even before with large clinical trials. Many 14:31:54 tens of thousands of patients. 14:31:57 Now we know even more and we know that the risk from the 14:32:00 vaccine is almost 14:32:04 nonexistent. It's really next to zero. A 14:32:08 very rare 14:32:11 anaphylaxis and that can be treated 14:32:16 successfully. And the death in contrast from getting 14:32:19 COVID infection is much higher. And that's 14:32:23 from getting overall in the population. If you 14:32:27 have a spinal cord injury 14:32:30 and your breathing is impaired your risk of death from COVID is 14:32:33 going to be much higher. I hope that puts the vaccine 14:32:37 in perspective and shares with you why I'm such an 14:32:40 ardent proarnt 14:32:43 proponent 14:32:47 for everyone who can get it. Thank you. >> Thank you, 14:32:50 Dr. Stone. >> Thank you so much, 14:32:54 Dr. Stone. Due to Dr. Shehan not being able to 14:32:57 make it with us today, would 14:33:01 any of the other two doctors be 14:33:04 willing to answer his two 14:33:08 questions? And the questions are 14:33:11 my body has already been through so much that I don't 14:33:14 want to take it. I have to go through whatever the 14:33:17 vaccine might cause. I don't want to have to go through whatever 14:33:20 the vaccine may cause. As a 14:33:24 person with a spinal cord injury, 14:33:26 like that was a question that hit home. Like my 14:33:30 body is already going through so much with my 14:33:33 daily living, do I want to have to take 14:33:37 this -- I did, but that 14:33:40 was still a question. 14:33:43 Like Ian said in his presentation, there was a lot 14:33:47 of questions but we still do it because I mean 14:33:50 that it's -- anything is better than catching 14:33:53 coronavirus. >> Right, so that's 14:33:56 perspective people have to keep in mind. The reactions and 14:34:01 Dr. Groah can elaborate more. The reactions are overall very 14:34:04 minor. The only thing I read about, and 14:34:07 you may know more is a small 14:34:10 chance of autonomic 14:34:14 dysfunction, which is rare following any 14:34:19 injection. >> I'd be happy to comment, 14:34:22 too. You know, Dr. Stone mentioned 14:34:25 this, but this is really becoming a bigger issue. 14:34:28 She mentioned long haulers. 14:34:32 And it's -- it actually has a name beyond long 14:34:35 haulers now. This is people who have contracted 14:34:38 COVID who have, you know, may have been in the empty, 14:34:41 hospital, may not have 14:34:45 been in the empty because of COVID infection. Even if 14:34:47 they were in the hospital and returned home, they continue to have some symptoms 14:34:51 so it has a name now. 14:34:54 Post acute SARS COVID syndrome or 14:34:57 something like that. Actually, I got a 14:35:00 sort of lobbying letter this morning 14:35:03 come across my desk asking me to 14:35:07 sign on because, you know, there are numerous 14:35:10 people appealing for more 14:35:13 rescue aid in this country specifically 14:35:17 targeting the problems long haulers are facing. 14:35:20 So I think the question and the concern are 14:35:24 real. I mean, I get that. I think -- I 14:35:27 totally understand it, but I guess the way I 14:35:30 would advise thinking about it is 14:35:34 thinking about it in terms of time. What we've seen across the 14:35:37 board is if people are going to have some side 14:35:41 effects due to the COVID vaccine, those are usually very 14:35:44 short lived. And those are getting 14:35:47 more and more well-documented. Really, 14:35:50 there's a few people that have, you know, 14:35:53 reactions beyond 24 hours, but the vast, vast, vast majority 14:35:57 are, you know, sort of the 24 hour period and possibly with 14:36:00 both injections. 14:36:03 But we're just learning now about long 14:36:06 haulers. And I can tell you that there's a lot of 14:36:09 unknowns there and it's frightening. I will 14:36:13 say that at National Rehab Hospital we run 14:36:16 a clinic for post acute SARS 14:36:19 COVID syndrome. I will give you 14:36:22 this statistic. First time people that come to our outpatient 14:36:25 clinic who have had COVID. This is irls of 14:36:38 iregardless -- the first -- the ridiculously high number, 14:36:43 and it's neurology -- the common ones 14:36:46 are neurology, cardiology, 14:36:50 and psychiatry are the top three because I think there's 14:36:53 what's emerging is there's a lot of sort of 14:36:57 long-term suquell ai 14:37:00 ae. 14:37:03 Dr. Stone mentioned the autonomic. That's part of the -- 14:37:07 we're seeing autonomic effects of COVID 14:37:11 itself again regardless of sixty two 14:37:14 spinal cord injury or 14:37:17 not. I would think about it in terms of time. >> Thank 14:37:20 you. I just had a quick -- would we post questions from 14:37:23 the chat or do you want to wait for a little 14:37:27 bit? >> It's okay, Serena. >> Okay. So 14:37:30 could you explain -- this is general -- 14:37:35 what autonomic, what's an autonomic response? >> So 14:37:38 I'll be happy to do it, if you like, Dr. Stone, is that 14:37:42 okay? >> Sure, great. >> So the nervous system, there's 14:37:45 multiple parts to the nervous system. 14:37:48 We're used to hearing about the part that controls 14:37:51 motor function or movement and then the parts of the nervous 14:37:54 system that controls sensation or feeling. You 14:37:57 know, other different parts if we think anatomically the 14:38:00 nervous system there's the brain, the spinal cord and there's all the 14:38:04 peripheral nerves that come out from the spinal 14:38:07 cord. There's another part of the nervous system we often don't talk about 14:38:10 but it's gotten a lot more attention recently for a number of 14:38:13 reasons and that's the autonomic nervous system. 14:38:21 The autonomic nervous system is a system 14:38:24 of nerves that controls our automatic 14:38:29 functions. Heart rate, blood 14:38:32 pressure, it helps with bowel and bladder 14:38:35 control, sweating, getting goosebism 14:38:39 goose bumps that kind of thing. What 14:38:43 we've seen in terms 14:38:47 of autonomic nervous system 14:38:50 problems, which has been with COVID infection. I'm not referring to 14:38:53 the vaccine here. We've 14:38:57 seen big ups and downs of blood 14:39:00 pressure just for no reason. And 14:39:03 ups and downs in heart rate. My 14:39:07 guess is that we're just in the beginning of learning about 14:39:10 these autonomic effects. I think more and more is going to pan 14:39:13 out 14:39:17 there. >> So Dr. Groah 14:39:20 to piggyback off that, so persons with 14:39:25 spinal cord injuries normally sometimes 14:39:28 will get autonomic 14:39:31 disreflexia due to something going on with their 14:39:35 body. Sometimes these 14:39:40 things send them to the hospital. Sometimes there's a hospital stay. Where 14:39:43 does that fit in with the vaccine? Have 14:39:46 you heard of anyone with spinal 14:39:49 cord injury going through -- I've never had it, 14:39:52 thank god, but I've heard it can be very, 14:39:56 very serious. So have you 14:39:59 heard of anyone after the 14:40:02 vaccine getting autonomic disreflexia? >> So 14:40:06 to answer quickly, I have 14:40:10 not. Two points that are really important about this. The people who are 14:40:13 at risk for autonomic 14:40:18 disreflexia, generally they'll have to have an injury around 14:40:21 T-6 or higher to be at 14:40:25 risk for autonomic disreflexia. That 14:40:28 level of injury gives people an imbalance in 14:40:32 their autonomic nervous system. The other super important thing is 14:40:35 that whatever irritant causes 14:40:38 the autonomic disreflexia it has to occur below 14:40:41 their level of injury. So the 14:40:45 actual physical getting the shot itself, like just the needle going in 14:40:48 the arm should not be an issue for the vast majority 14:40:53 of people. There will be some people who have 14:40:57 injuries higher than that but that should not cause it 14:41:01 itself. I have not heard of 14:41:04 anyone with spinal cord injuries, at risk 14:41:07 for autonomic disreflexia having any problems in that regard with 14:41:10 the vaccine itself. >> Thank 14:41:16 you. So Serena, does anyone else have 14:41:19 any questions? You can take yourself 14:41:22 off mute if you want to ask a 14:41:26 question. >> Yeah, there's nothing in the chat. Oh, 14:41:29 sorry. >> I have a question if I can. This is 14:41:33 Carlos. >> Yes, Carlos? >> 14:41:37 Yes, I have a spinal cord injury at C-7. 14:41:41 I haven't had the vaccine yet. I have some concerns because I 14:41:44 have taken the holistic approach to my health over 14:41:47 the last five years where I take a 14:41:50 lot of vitamin C, vitamin D, 14:41:54 elderberry. My concern is how would that work 14:41:58 or correspond with what's -- (choppy audio). >> 14:42:01 Carlos, there's a lot of background 14:42:06 noise so I'm not sure if Dr. Groah 14:42:09 or Dr. Stone heard your question. >> Did you want me to put it in the chat 14:42:12 then? >> Yes, can you tell put it in the chat, please? 14:42:15 >> Okay, I'll do that. >> Thank 14:42:19 you. >> If there's any background noise, we're 14:42:22 not going to hear the person asking. >> Yeah, it wasn't another 14:42:29 person. >> While we're waiting for Carlos, 14:42:32 Terry put in the 14:42:35 chat, that they had both Moderna shots with almost 14:42:39 zero side effects. And as a side note, also worked on the 14:42:42 national SCI hotline in the 80s and 90s and 14:42:46 is very thankful for Sam's 14:42:48 book. >> If I can say something. I actually -- 14:42:51 >> I have a question -- >> Go ahead. >> 14:42:55 Yeah. With some of these shots and stuff, can it 14:42:58 also affect people -- 14:43:02 people with -- 14:43:05 (indiscernible). >> So the -- both of the -- and, you know, I'll 14:43:08 start and probably I'm guessing Dr. Stone probably 14:43:11 wants to say something about this. I mean the point of the vaccine 14:43:15 is to stimulate an immune reaction. And 14:43:20 so when the whole purpose is 14:43:24 to rev up the immune 14:43:27 system and that's why people feel the symptoms in the first 14:43:30 couple days after the injections. 14:43:34 And then it calms down. So it's prepared if and 14:43:37 when your body gets exposed to 14:43:42 COVID. The point is to rev up the immune system. I haven't 14:43:46 heard of, you know, gout, which 14:43:49 is an inflammatory 14:43:52 condition being exacerbated by this, but that being said, 14:43:56 too, I don't see a lot of patients with gout. So I don't 14:43:59 know. >> You don't? Because my mom just got 14:44:03 it, the -- I'm fully vaccinated but she has gout 14:44:06 and it runs in the family, my aunt has it and 14:44:10 stuff. And people were flat footed and 14:44:14 stuff. >> We've got some questions coming in specific 14:44:18 to the spinal cord injury discussion, okay? So I'm going to 14:44:21 put you back on mute so that the other people can ask their 14:44:25 questions about the spinal cord 14:44:28 injury intersection with the vaccine, all right? >> All 14:44:34 right. >> But any question you should always speak to your doctor if you 14:44:38 have any questions about any type 14:44:41 of medications 14:44:44 or other things you're doing. >> I would just add I have 14:44:47 not seen anything, any reports of 14:44:51 increases in gout. And what surprises me and 14:44:55 reassures me greatly is that I've seen almost 14:44:59 no cases reported of people 14:45:04 with autoimmune illnesses feeling worse or having any 14:45:07 flare ups with that after the injection. That was 14:45:10 my big 14:45:13 concern. Just not seeing it. 14:45:17 >> Awesome. Are there any more questions, 14:45:21 Serena? >> Yes, from -- this is from Carlos. I can 14:45:24 read it alloud. I have 14:45:28 a spinal cord C-7 and take a holist 14:45:31 approach towards my health and haven't been 14:45:35 vaccinated how will the vaccine 14:45:40 correspond? With the 14:45:44 vitamins, I suppose and also just overall. >> 14:45:47 I'm assuming that Carlos is 14:45:50 intending -- will the vaccine interact with the vitamins. I 14:45:54 mean, those vitamins in particular have some 14:45:57 functions to sort 14:46:01 of keep your immune 14:46:04 system strong, basically. There's no indications whatsoever, just 14:46:09 kind of -- by what we know about other vaccines, what we know of 14:46:12 this vaccine 14:46:16 that there's any negative interaction. If anything, if 14:46:19 anything at all I would assume it would be a 14:46:23 positive interaction to strengthen your 14:46:26 immune system. 14:46:30 >> Ms. Debra has a 14:46:33 question. Did you want to say it 14:46:38 aloud Ms. Debbie? 14:46:42 >> I have a 14:46:46 question. I received my spinal cord injury 14:46:49 back in 2001. Unfortunately, never were able 14:46:52 to diagnose me, so they don't know where my spinal 14:46:55 cord injury came from. 14:46:59 It's something physiological with my body 14:47:02 where they could never determine with the 14:47:06 injury 14:47:09 came from, T-6 to T-9 area. 14:47:12 I still have the spinal cord injury and on top of 14:47:17 that I have end 14:47:20 stage kidney failure and high blood pressure 14:47:24 and I'm diabetic. 14:47:27 I have a 14:47:30 multitude of serious issues 14:47:33 going on. How would that affect me, in your 14:47:36 opinion? >> Do you want to take that? >> If you'd like me to, I'm 14:47:40 happy to. >> It's fine, I defer to you. >> Okay, that's 14:47:45 fine. My initial response was if anything I think some of those medical 14:47:50 conditions would you put you in the high risk category for COVID 14:47:55 itself. You know, again, 14:47:59 there's -- in the COVID vaccine 14:48:02 trials, people with hypertension, 14:48:06 diabetes, et cetera were in those trials and there was no 14:48:08 issues with those conditions. So, you 14:48:12 know, it would lead me 14:48:16 to encourage someone like you probably more strongly to 14:48:19 get the vaccine. >> Right, I would agree with that 14:48:22 totally. The one thing I would add is 14:48:25 that because this came up with another patient is 14:48:29 if somebody -- you know somebody is going to begin 14:48:32 chemotherapy or begin treatment with 14:48:36 prednisone for anything, they should try to get the vaccine a 14:48:40 couple of weeks before they 14:48:43 begin any 14:48:50 immunosuppressant therapy. >> I have another 14:48:54 question. I've going to get the 14:48:57 first dose on Wednesday and I am going to take a 14:49:01 hemoglobin shot on the same day but after I get the 14:49:04 vaccine, would that be a problem? >> No. 14:49:07 No, they just say -- they encourage you 14:49:10 not to take two 14:49:13 vaccines at the same time, but that again is out of 14:49:17 the abundance of caution and not based on 14:49:20 any data. >> All right, thank you. 14:49:28 >> This was great, Dr. Groah and Ian I'll 14:49:31 be reaching out to you because I'm going to write a post on this 14:49:34 so I'll have more questions for you. 14:49:39 >> Make sure you mention us. >> I will. 14:49:44 I would like Dr. Groah 14:49:48 and Ian to send me anything else they might want me 14:49:51 to include. >> Serena, has anyone sent 14:49:54 you a question by e-mail? >> No, 14:49:58 we don't. I had a 14:50:01 question for both of 14:50:06 you. What is -- I hear a lot of people say I take 14:50:09 supplements, you know, I take vitamin C, vitamin D, 14:50:12 I'm really taking care of my immune 14:50:17 system. What's the vaccine maybe like 14:50:22 offering that just taking those supplements or working out or 14:50:25 eating right or whatever aren't doing for your immune 14:50:28 system? What's the motivation to go ahead 14:50:31 and get it? >> The vaccines 14:50:34 are specific targeting that spike 14:50:38 protein. There are other things that may help in terms of 14:50:41 your general health and wellbeing and there 14:50:45 are a lot of studies going on now looking at 14:50:48 specifically vitamin D and vitamin 14:50:51 C and 14:50:55 many other common medicines. But the 14:50:58 vaccine builds your immunity specifically 14:51:01 against COVID virus and that's why you need to get 14:51:05 it. >> Yes, my name is Mike 14:51:08 Saunders. I have a question for Dr. Groah. I 14:51:12 fit in the category of T-6 and above that you were 14:51:15 talking about. I'm actually a T-6 paraPremier 14:51:19 paraplegic and I had 14:51:22 both shots as of last Thursday I will 14:51:25 be considered fully 14:51:30 vaccinated. So my question to 14:51:36 you is there some type of symptoms -- 14:51:39 because I had COVID in 14:51:42 2019, November 2019 when it first came. I went to the 14:51:46 hospital. They didn't even know what I had at the time they just said 14:51:49 I had a virus. The things that I 14:51:53 went through and -- I'm just 14:51:56 sharing a little bit of this with everyone -- the things I went 14:52:00 through at the time, the COVID, I mean, the way I was vomiting and 14:52:03 doing things that -- I was a 14:52:06 little concerned that because when you take vaccines 14:52:10 normally they're supposed to I 14:52:13 guess put whatever the -- inside of you and 14:52:16 then you fight it. So I was a little concerned that I 14:52:19 would have some things like that happen to me once I took the 14:52:23 vaccines, but I didn't. I did get the chills on 14:52:26 the second one and very 14:52:29 fatigued on the second shot for about a day or 14:52:33 so, a day and a half. I took a 14:52:37 Tylenol before I went to get the shot and did a Tylenol after 14:52:40 the shot of both of them. But 14:52:43 my question is, you know, back to what I was 14:52:46 saying, is what you were saying is there any 14:52:49 symptoms to anything like that happening? Because I 14:52:54 had like -- I would say when I first 14:52:57 had COVID in 2019, something 14:53:01 happened to me and it was funny I was 14:53:04 like paranoid about a lot of things. Even using 14:53:07 the restroom or whatever 14:53:11 else I was going through something. But since I've had 14:53:14 the vaccine, it seems like those things aren't happening 14:53:18 to me anymore. I don't know if 14:53:21 that is anything related to the vaccine or what. 14:53:24 Or what I might have been receiving a 14:53:27 symptom from COVID. >> You know, I think 14:53:31 it's hard to say if the 14:53:34 vaccine -- I think that's what you're asking, could the vaccine have positively 14:53:38 impacted some of those symptoms. >> Right, yes. >> And that's hard to 14:53:42 say. I mean, I can't say definitively. I can 14:53:45 say that I'm glad that the symptoms have resolved 14:53:48 for whatever reason. And perhaps, you know, part of what 14:53:51 you were experiencing was 14:53:54 some of what we're just learning about with the long 14:53:58 haulers. That, again, we're just in 14:54:01 our infancy in terms of learning about 14:54:04 that. But, again, for whatever reason 14:54:08 I'm glad they resolved. >> 14:54:11 Yes. Thank you. 14:54:15 >> So I want to say I hope, you 14:54:19 know, this has brought the information to you guys that 14:54:23 you needed to make an informed 14:54:26 decision. Because it's very important we take 14:54:30 action. We are a group of people that 14:54:33 are advocating for people 14:54:37 with disabilities every day and it starts with 14:54:40 us. So we have to be leaders and go out 14:54:43 into our community and do what's best for us, our families 14:54:47 and our community. So I'm going to leave 14:54:50 it to John to close us 14:54:53 out. Thank you to Dr. Graoh, 14:54:56 Dr. Stone and Ian. Thank you so much for being 14:55:00 here. John? >> Yeah, I would like to 14:55:04 piggyback on the things -- I actually got both of 14:55:08 my shots and totally have been 14:55:12 vaccinated and a couple of things that 14:55:15 decided for me was when it first started, you 14:55:19 know, not taking it seriously. 14:55:23 But I was a very active person, working three 14:55:26 jobs. When COVID starts, I mean, everything come to a 14:55:29 stop and my fiancee worked right on the 14:55:32 front line of COVID 14:55:35 and so we were very paranoid every day her coming 14:55:39 home from the hospital, taking all these 14:55:43 precautions. For me in the aspect of anything and 14:55:47 everything she saw as in how people were responding 14:55:51 to everything and the first 14:55:55 person -- was reaching out to was Dr. Stone because like I 14:56:00 said we've been a patient of hers and friend and she's 14:56:03 been amazing with me when it comes to 14:56:07 my spinal cord injury stuff. That whatever she said it's like the Bible to me, 14:56:10 it's automatic, that's what I'll do. I've done that with 14:56:13 her. And just to learn, like, I was ready 14:56:17 to get this shot right away just because, you 14:56:20 know, for 27 years I've advocated for myself and now 14:56:23 for others, individuals with disabilities, 14:56:26 and the last thing I wanted to know was I 14:56:30 went out because of COVID and not out of this life in 14:56:33 a different way. That was not going to 14:56:36 be, you 14:56:40 know, deterring for that. If I did 14:56:43 get COVID I would be able to survive just 14:56:47 from some of the side effects. 14:56:50 So if you -- if there's anybody who has any 14:56:54 inkling or wants -- about the shot, I 14:56:57 would say definitely from 14:57:00 what Dr. Stone 14:57:04 and Dr. Groah and Ian have helped with your 14:57:07 decision with that. And being able to have Dr. Stone 14:57:10 now link up with Ian and Dr. Groah 14:57:13 to keep this going and to be 14:57:16 able to share other stories with that now. 14:57:20 But I'd also -- >> Sorry, let me interrupt for 14:57:23 one second. You make an 14:57:28 excellent 14:57:32 point. The people who has the vaccine, nobody who has 14:57:36 gotten the vaccine has died from COVID. You 14:57:39 may get a mild case. A few patients are being 14:57:42 hospitalized with COVID after vaccination or breaking through, but nobody 14:57:45 has died. And that is a huge 14:57:49 relief for me and should be a bigger 14:57:53 relief for you guys who are at 14:57:56 more risk because of your breathing difficulties and injuries. 14:57:59 Sorry, thank you. >> Thank 14:58:02 you. I would like to 14:58:08 share, I just jotted down a couple things we wanted to still 14:58:11 be able to give a little awareness that there 14:58:15 are still many places you can sign up to get your 14:58:19 vaccine. Definitely your local health department. There 14:58:22 are many, many websites out there you can go 14:58:26 to to sign up for your 14:58:29 areas. The 14:58:33 coronavirus.Maryland.gov, Maryland vax. The 14:58:37 ILRU.org 14:58:40 project. COVID Link Maryland. 14:58:43 There's many places you can go to sign up. You can contact any 14:58:48 of your local -- in Maryland of the region you 14:58:51 live in, so I have this if anybody 14:58:54 would like copies of this. They can definitely be e-mailed. It's 14:58:57 just a quick thing I jotted down. So I want to 14:59:01 share those as well that you can 14:59:05 still sign up. There is places that are actually walk 14:59:09 ups now because they're not filling all the slots. You can 14:59:12 find those places in your area all across the 14:59:17 regions. With that we'd like to close out and if there's any 14:59:21 other questions 14:59:24 or anything, Serena or Shannon or 14:59:28 I can forward those on to any of the 14:59:31 guest speakers we had today. So thank 14:59:34 you for everybody that participated 14:59:38 today for the IM. 14:59:41 >> I'm going to step in really quick because I 14:59:44 know this is something that IM does every day, every 14:59:47 Monday and we haven't done it yet. So if you 14:59:50 have any events you want to put out 14:59:53 there, now is the time if you're doing something 14:59:56 that you want to share. 15:00:01 Independence Now is having a vaccine clinic 15:00:04 on Wednesday, so if you're in our area and you need 15:00:08 to register please contact me by e-mail and I can 15:00:11 send that information to you as well. Katie just posted we 15:00:15 are hiring. 15:00:18 Katie, do you want to talk a little bit about that? >> As we kind of shift 15:00:22 our focus from, you know, surviving COVID 15:00:25 now to getting the vaccine, 15:00:28 ARI is going to be hiring a vaccine 15:00:31 coordinator temporary fulltime position, $20 15:00:34 an hour starting as soon as I can get you hired. I 15:00:38 put the link in the -- for the 15:00:41 position announcement and resumes should be e-mailed to 15:00:44 me. And I think that's 15:00:48 it. >> Have a good day, the 15:01:06 weather's going to be great this week so get out -- >> 15:01:09 I've got one announcement. >> Get some sun -- >> Just 15:01:13 a quick thing -- >> I was going to remind 15:01:16 everyone that tomorrow independence Now is hosting 15:01:19 hosting an emergency 15:01:25 preparedness and COVID-19 and I've dropped a link in 15:01:28 the chat box. And we feel like 15:01:31 it's going to be really exciting. We're 15:01:35 having a -- one of our 15:01:38 firefighters talking with us tomorrow and 15:01:41 that event starts at 15:01:46 12:00 tomorrow. 12 noon to 2:00 p.m. 15:01:49 and emergency preparedness during a pandemic. >> Awesome. 15:01:56 anyone else? 15:01:59 Have a great week, you guys.