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Transcript

What Counts As Independence After SCI · When Life Gives You Lemons

• 0:00
  Kevin: Welcome to our podcast, When Life Gives You Lemons I'm Kevin.
• 0:06
  Palmi: And I'm Palmi.
• 0:07
  Palmi: We consider ourselves disability advocates and intend to highlight some disability issues and things we find interesting that we frequently encounter when we're out and about.
• 0:18
  Palmi: Also, some history on disability that we find interesting.
• 0:22
  Palmi: This year we're going to include more of the interviews of the people that the disability affects.
• 0:30
  Palmi: We hope you enjoy it.
• 0:31
  Kevin: Hello, you're everybody.
• 0:33
  Kevin: Welcome back to our podcast when life gives you lemons.
• 0:38
  Kevin: I'm Kevin.
• 0:41
  Palmi: And I'm Palmi.
• 0:42
  Palmi: Well, first of all, I wanted to welcome spring.
• 0:46
  Palmi: Today is the first day of spring.
• 0:48
  Palmi: We just got over a terrible snowstorm here.
• 0:50
  Palmi: Missouri in the weather.
• 0:52
  Palmi: Just wait two minutes and it's you'll get different weather.
• 0:56
  Kevin: Yeah, it's early in spring, so I can' t guarantee all the winter's gone yet.
• 1:03
  Palmi: Well, the flowers are popping, and our um daffodils are in our lilacs.
• 1:09
  Palmi: So it's perfect allergy season for you.
• 1:12
  Kevin: Yeah, perfect allergy season, and still not true springtime.
• 1:18
  Palmi: Our little dog is uh allergic to grass, so he is scratching in the background.
• 1:23
  Palmi: You can hear him jingling with his bells.
• 1:25
  Palmi: So we're gonna talk today a little bit about uh spinal cord injuries.
• 1:33
  Palmi: Once again, let me remind you, we're only doing this for awareness, not for a complete uh guide for diagnosis people.
• 1:46
  Palmi: Just so that you have an idea of if in case uh you run across somebody that has spinal cord injury, you have a little bit of knowledge so you can talk to them or um interact with them and kind of not be in the without some kind of knowledge.
• 2:03
  Palmi: So, what we're talking about is long-term permanent damage to the spinal cord, resulting in lasting neurological changes.
• 2:12
  Kevin: I but beer, mind you, we are not doctors, we're just reading stuff.
• 2:21
  Palmi: And sometimes having trouble reading stuff.
• 2:23
  Palmi: Uh, this is often the most common causes are trauma, accidents, falls, medical conditions, uh degenerative diseases.
• 2:32
  Palmi: The reason why chronic, and we're gonna all doctors like shortening things, and so the shortening, shortened abbreviation is SCI, and we'll be referring it to as SCI in the future of this podcast, is why it's distinctive is it's pers um persistent symptoms, long lifelong management and um evolve and has involving needs.
• 3:02
  Kevin: So the type of injuries are complete versus incomplete.
• 3:07
  Kevin: That's how injuries are classified.
• 3:11
  Palmi: Actually, uh I've gotten to know somebody where their one side is paralyzed or partially paralyzed, and the other is not basically.
• 3:26
  Kevin: And that it that's a spinal injury, yeah.
• 3:29
  Palmi: People tend to think it's more like, you know, here and like it's like legs or arms or totally paralyzed or whatever the case may be.
• 3:43
  Palmi: But they don't think like uh uh when your dad had a stroke, he was that was neurological left side, is that correct?
• 3:55
  Kevin: Right, but that was neurological, it wasn't a spinal injury.
• 3:58
  Palmi: I understand that, but sometimes spinal injury goes left side or right side.
• 4:05
  Kevin: Depending on where it's injured.
• 4:08
  Palmi: Depending on how it's injured, yes.
• 4:10
  Kevin: Okay.
• 4:10
  Kevin: And that would be what we're gonna call into next is the level of injury, um, cervical, thoracic, lumbar, and and that is what is each is uh what each typically affects.
• 4:24
  Kevin: So that'd be where you where that would involve, like you just said, where where the injury is and what it affects.
• 4:31
  Palmi: Yeah, basically that's what the three areas of your spine, which is that bunny column right down the middle of your back that uh protects the spine cord that's on the inside.
• 4:47
  Kevin: Right.
• 4:48
  Kevin: Um the functional impediments are mobility, sensation, and automatic uh automatic um functions, things that would happen automatically.
• 5:00
  Kevin: Um long-term symptoms and complications are chronic pain, um spasitism, muscle weakness, and paralysm, being paralyzed, secondary complications are pressure injuries, bowel and bladder dysfunction, respiratory issues, bone health concerns, also emotional and cognitive impactment or impactments, um, depression, anxiety, identity shifts, and social barriers.
• 5:39
  Palmi: Yeah, do you remember the other day we're talking about how the anxiety and depression could probably differ from a condition where somebody was born with it versus somebody somebody who had something like this thrust on them.
• 6:01
  Kevin: Yeah, you you went through that with your you you changed your entire life, the scope of your life.
• 6:06
  Palmi: Well, still, I mean, I I imagine it's uh because mine has been a gradual degeneration, if you will.
• 6:16
  Palmi: You just uh bam, wake up and we talked about that with the whatever you're in a hospital, found out you're on a car wreck and your spinal cord was a dirt and you're gonna be that way the rest of your life.
• 6:34
  Kevin: Well, kind of was like that with you.
• 6:35
  Kevin: You were told you only had um a few years to live.
• 6:39
  Palmi: But still a little bit different because you have You you went through a major depression.
• 6:45
  Palmi: Well, yeah, I'm not saying trying to be little at that point.
• 6:50
  Palmi: I just think it's gotta be different.
• 6:53
  Kevin: I don't think it is.
• 6:55
  Kevin: I think depression is depression.
• 6:57
  Palmi: Well, yeah, but it's one thing to have time to like wrap your head around it versus all of a sudden it's there.
• 7:08
  Kevin: Hopelessness is hopelessness, no matter whether you think it's gonna last a long lifetime or whether you think it's gonna be a short-term issue.
• 7:18
  Palmi: True.
• 7:19
  Palmi: It's so true.
• 7:22
  Kevin: Yeah.
• 7:22
  Kevin: So um on your daily life and that um adaptation, um, a lot of times it affects the mobility and independence.
• 7:32
  Kevin: A lot uh most times your wheelchair assess um um you need to go to a wheelchair or um assistant devices.
• 7:41
  Kevin: Your home needs to be modified, your work, your relationship, your community, uh navigating accessibilities, employment, social participation, a abilism, abilitiism, being able to uh figure out what you're able to do at this point, social barriers, how to structure um ability isms, shapes, experiences post-injury.
• 8:09
  Kevin: Now we're talking treatment and long-term management.
• 8:13
  Kevin: So medical care, of course.
• 8:16
  Kevin: A lot of times they're transferred to um rehabilitation uh um hospitals.
• 8:22
  Kevin: I imagine there's lots and lots of physical therapy, including occupational um assistive technologies.
• 8:32
  Kevin: Um we were talking about the what was the one place that where they were installing um things in the brain?
• 8:42
  Kevin: Neuralink.
• 8:44
  Kevin: Neuralink.
• 8:46
  Palmi: Well, I just watched the uh every quarter neuralink does an update video on YouTube.
• 8:54
  Palmi: Now I'm not gonna go through in great detail everything they've published.
• 9:04
  Palmi: Just a quick summary.
• 9:07
  Palmi: Otherwise, it kind of uh get you know just saying what the the LD was is kind of uh could be its own.
• 9:16
  Palmi: Could be its own issue or its own podcast episode, it could be its own uh we're not getting getting into a long story is what I'm saying.
• 9:29
  Palmi: Just have to bear this one out.
• 9:32
  Palmi: When it was first established, they had three patients.
• 9:38
  Palmi: They had patient zero, patient one and patient two, and for privacy and HIPAA considerations they didn't release the names of the patients.
• 9:52
  Palmi: Patient zero was Elon Musk.
• 9:56
  Palmi: He's proving the uh proof of concept.
• 10:00
  Palmi: He had a chip planted in his brain.
• 10:04
  Palmi: It doesn't do anything.
• 10:06
  Palmi: He's just proving their proof of concept because the entire operation is automated and done by robots that he built.
• 10:17
  Palmi: So it was more like a, like I said, a proof of concept that he can make it happen and everything will be okay.
• 10:28
  Palmi: Patient one and patient two were both disabled.
• 10:32
  Palmi: One was uh spinal cord injury, I believe.
• 10:38
  Palmi: The other was Alzheimer's.
• 10:40
  Palmi: Does that sound about right?
• 10:44
  Kevin: I think that right.
• 10:45
  Palmi: Uh basically they got to the point where they you know I had gone through a year of being called patients or own patient one, and they have to you know be anonymous and I venture put strain on their family life, so they were like, okay, I'm where I want to be.
• 11:10
  Palmi: I'm able to get out about now where the these people were like virtually housebound before they started.
• 11:23
  Palmi: The first step in the process is they have to be able to learn how to use the brain computer interface.
• 11:34
  Palmi: What that means is they have to sit with a computer hooked up to the uh Bluetooth connection they have on that chip, be able to move a cursor around and make it do what they want it to do versus you, I guess what it's gonna do on its own or just sit there.
• 11:58
  Palmi: I don't know.
• 11:59
  Palmi: They had a problem after year one, they went, they went and uh added uh 10 more people to their list of patients, and they found out like with patients one and two both had a reduction in the connections, they use a fiber, artificial fiber that connects the chip to a certain spot in the brain for whatever they're trying to get it to do.
• 12:36
  Palmi: But it's you know redundant, it's not like they do just one fiber, one connection, and move on.
• 12:48
  Palmi: They do several connections, and what they did last year is they uh doubled the amount of connections they do because they didn't know what was causing the uh brain to uh detach from where the uh fibers were connected on the brain's part.
• 13:11
  Palmi: As it turns out, the uh 2026 update addresses that your brain basically is supported by your brain stem and then surrounded by cerebral fluid, and every night your cerebral fluid is flushed away out of your skull, and so what they were detaching from was what they considered to be normal movement of the brain inside your skull, whereas your chip is attached to the skull.
• 13:55
  Palmi: Uh I believe they changed that for 2026.
• 14:01
  Palmi: They actually let it rest on your brain.
• 14:05
  Palmi: Hoping that's gonna you know long-term reduce the uh amount of fiber movement detachments they have.
• 14:15
  Palmi: And like you said, they also doubled the amounts of fibers.
• 14:21
  Palmi: I mean, we're talking like Nancy, they went from 60, I believe it was 60,000 to 120,000.
• 14:34
  Palmi: So I mean, it's not like they hooked up two fibers and called it quits.
• 14:42
  Palmi: One, you know, if one became that, there's probably like five or six more.
• 14:49
  Palmi: They've got the word there to do the same thing.
• 14:54
  Kevin: So that's assistive technology.
• 14:56
  Kevin: So there's a lot of uh that's a lot, there's quite a few of those that are out there, not just uh Tesla's ideas, but a lot of them are out there trying to figure out the same thing.
• 15:06
  Palmi: When they uh first started the company only worked out of California, but now they have uh Cedar in let's see, they tried to do the you know, so it's more beneficial worldwide, then oh, you gotta buy ticket and fly to the US to I thought you said last time it was in Britain.
• 15:33
  Kevin: There was one in Britain.
• 15:34
  Palmi: Yeah, I think there's one in London, one in Dubai, one in, I believe there's one in China somewhere.
• 15:45
  Palmi: Maybe uh somewhere like a large city like Shanghai or Hong Kong.
• 15:54
  Palmi: So basically what they're trying to do is cover all the contents.
• 16:00
  Palmi: So every but there's one in Sydney I recall as well.
• 16:06
  Palmi: Uh so uh again, the benefits are right now if you're uh they also expanded the patient types except they don't just accept spinal cord injuries and Alzheimer's, they also do blindness, they have what they call Operation Blindside, where they work on blindness as cochlear implants work for deafness.
• 16:44
  Palmi: It's the engineers actually build a cybernetic eye, and their surgeons tell them how to hook it up.
• 16:57
  Palmi: Surgeons, there's no human factor involved in this, it's too precise for humans to do because these fibers they're using to connect your brain and your nerve readings are just so hard to work with on the human scale.
• 17:28
  Palmi: They want everything to be robotic.
• 17:31
  Kevin: So getting back to SCI, um, there's mobility tax, there's adaptive equipment, and there's emerging neuromodular research, all for the SCI.
• 17:45
  Kevin: And then there's also pain and symptom management and multidiscipline approaches.
• 17:52
  Palmi: Encourage everyone to uh visit their website, holding.com, and uh find out what they have what they're doing in 2026.
• 18:08
  Palmi: I'm sure they have a certain amount of patience they do.
• 18:13
  Palmi: Um being it's a trial, I don't think there's cost major cost to you, but I am pretty sure the insurance doesn't cover usually a trial, so I don't know what they have in the works for it.
• 18:35
  Palmi: But if you meet their criteria, I'm sure they'll go over it with you.
• 18:42
  Kevin: There is research and emerging science um for neurolog neuroregenerative and neuromodular and biomaterial in clinical trials and uh community-centered research on how CSI um both scholar and lived experiences progress um perspective.
• 19:04
  Kevin: So um this leads into personal stories and lived experiences, and we have an interview of someone um that has um CSI uh in the future.
• 19:18
  Kevin: S C I, I'm sorry, in the future.
• 19:20
  Kevin: Is that correct, Heb?
• 19:22
  Palmi: Actually, it's two people.
• 19:24
  Palmi: Oh it's gonna talk about a specific uh SCI injury and how artifacted him.
• 19:33
  Palmi: And the other one has been active in the SDI community and knows a lot more about different types of SCI and how they vary from each other, and how they vary from different types of patients.
• 19:52
  Palmi: So the next two episodes we're going to talk interview with those two people.
• 20:02
  Kevin: Sounds so good.
• 20:02
  Kevin: We'll get a different suspect inspective on both.
• 20:06
  Palmi: Yeah.
• 20:07
  Palmi: I also wanted to say that I saw or read or saw some stuff online about a lab that grows artificial spinal cords and spinal columns.
• 20:23
  Palmi: I've been told that that's been news for like years and it's kind of like run its course.
• 20:36
  Palmi: So uh I'm guessing the uh actual good news as far as what SCI can uh use in the near future is BCI, like uh the new link I was just explaining, or there are also other companies that develop their own BCI and how it works.
• 21:08
  Palmi: So they're not progressing as rapidly as New Link is, but I'm sure like I said, New Link is kind of like they like to keep everything very private for the sake of their patients.
• 21:29
  Palmi: So yes, they give you technological updates, but they don't really uh talk too much to their patients.
• 21:40
  Palmi: They led them.
• 21:42
  Palmi: The 10 they led in last year did interviews before they had their neural link in theory, so they can talk about after they have the neural link and how it's affected their lives.
• 21:59
  Palmi: But we haven't got to let part in the update yet.
• 22:04
  Palmi: Just that they've done several of the operations, and they've been successful, and they're on schedule as far as like getting the brain computer interface to work.
• 22:20
  Palmi: Not as far as their therapy or goals are concerned.
• 22:27
  Kevin: Sounds good.
• 22:29
  Palmi: Okay, so that's about it for this week.
• 22:32
  Kevin: Any housekeeping?
• 22:34
  Palmi: Little bit.
• 22:35
  Palmi: I'd like to see a little bit more feedback on our social platforms.
• 22:41
  Palmi: If you would post your ideas, we use uh we have an account for Instagram, we have an account for X, we have an account or a page set up on uh Facebook.
• 22:57
  Palmi: I want to uh apologize, I'm not the greatest social media side to figure out sometimes how these things work.
• 23:10
  Palmi: What I was doing was like inviting people, obviously, either I know, or uh people who had profile pictures that suggested they were involved in, for example, whatever community, whatever disabled community, whatever uh slot they would fit in in that community.
• 23:38
  Palmi: So get lots of different nationalities, perspectives, not just one you know view on disability, just so we'd have varying views.
• 23:53
  Palmi: Disability means different things to different people.
• 23:58
  Palmi: But in order for us to understand it, oftentimes it takes you to tell us that.
• 24:08
  Palmi: If you go through our stuff and there's something that we haven't talked about, let us know what it is, and probably we're gonna follow the same format for this year, as far as like we'll talk about stuff our research uh covers, and then we'll do an interview with someone who's actually affected by that disability.
• 24:42
  Palmi: That way we get a more rounded life lessons learned perspective, versus say I read it on the internet perspective.
• 24:57
  Kevin: Sounds good.
• 24:59
  Palmi: Did you want to talk about your sourdough for a second?
• 25:03
  Kevin: No, okay.
• 25:04
  Palmi: One thing I want to point out, and this is this is a new one on me, but uh one of Pommy's customers is a gluten intolerant person or perspective customers, I guess.
• 25:22
  Palmi: But the uh the deal has been because we've tried so many absolutely terrible gluten-free breads that we're not gonna charge you for this.
• 25:37
  Palmi: We're gonna get you this loaf and if it meets your standards.
• 25:43
  Palmi: And she actually made a loaf of sourdough that tasted like it left us sourdough bread that was gluten-free.
• 25:55
  Palmi: I thought that was pretty significant.
• 25:58
  Kevin: Yeah, it's not anything like regular sourdough.
• 26:02
  Kevin: You have to you had to start I had to start a gluten-free starter, and it was nothing like normal starter.
• 26:08
  Kevin: Normal starts sourdough starter.
• 26:11
  Kevin: It was completely different.
• 26:12
  Kevin: I ended up taking a course in order to be able to do it because it um doesn't create gluten, so it's a totally different thing.
• 26:22
  Palmi: Yeah, it's in sourdough part of the still has bacterial in it, but it doesn't come off from the you still stretch it out.
• 26:32
  Kevin: No, nothing, nothing like that.
• 26:34
  Kevin: I mean, normal sourdough you do, but the gluten you don't have to because there is no gluten in it.
• 26:39
  Kevin: The reason you do sourdough is yeah, you stretch you do stretch and folds to create the gluten in the flour so it has structure.
• 26:48
  Kevin: But sourdough, I mean gluten sourdough, you add um gums and other things in it to produce a structure so that it has the texture of flour.
• 27:02
  Kevin: So it's more chemist chemistry versus um structure um actual stuff.
• 27:11
  Kevin: Actual working it in because there's no gluten.
• 27:15
  Kevin: Gluten is what taste makes it chewy and tender and tastes good, tastes like bread.
• 27:23
  Palmi: It makes it taste so good, yeah.
• 27:26
  Palmi: But anyway, enough about bread.
• 27:29
  Palmi: We'll talk to you in two weeks about uh yeah.
• 27:33
  Palmi: See, I again remember we have two interviews gonna be up, and we don't uh put time limits on interviews, so they're both on the long side, they're going in separate episodes.
• 27:50
  Palmi: So I we might have two episodes back to back the dirt interviews.
• 27:56
  Palmi: Just warning everybody, but we'll try to make that clear.
• 28:03
  Palmi: I think we'll call if we do do that.
• 28:07
  Palmi: We're gonna call them SEI parts two or three.
• 28:13
  Palmi: Okay, or something like that.
• 28:16
  Palmi: Whatever this title comes out to be, it'll be the same title.
• 28:22
  Palmi: Part two for the part for the one interview, and part three for the interview, other interview.
• 28:30
  Palmi: If they're both on the same episode, we'll say parts two or three.
• 28:37
  Kevin: Sounds good.
• 28:38
  Palmi: Makes sense.
• 28:39
  Palmi: If it doesn't make sense, make sure you let us know that too.
• 28:46
  Palmi: Until next time, though, goodbye.
• 28:50
  Kevin: What you forgot your tagline.
• 28:53
  Palmi: Oh.
• 28:53
  Palmi: What do you do when life gives you loveness?
• 28:58
  Kevin: Make lemonade.
• 28:59
  Kevin: We would like to dedicate this podcast to Kevin's mother, Ruth Henry, who has passed away.
• 29:08
  Kevin: She was on her podcast in an earlier episode where she explained to us about her cancer.
• 29:14
  Kevin: She felt very hard and has lost the people.
• 29:19
  Kevin: She was a wonderful mother.
• 29:22
  Kevin: A wonderful motherfucker.
• 29:23
  Kevin: A wonderful mother.