#29 1 in a million, Stiff Person Syndrome (just like Celine Dion)

Imagine being diagnosed in one of the leading medical facilities in the world and the Neurologists say they have never seen this before

Enter New Jersey resident Lauren McDermott who endures the degenerative condition called Stiff Person Syndrome or SPS. A condition that is more well known now thanks to Celine Dion being diagnosed with Stiff Person Syndrome. When I say thanks, I wish that Celine Dion wouldn't have to suffer with SPS either.

Lauren goes in to great details with some of the pre cursors that may have been warning signs regarding her disability.

She talks about how disability has impacted her professionally and socially.

She tells me what someone with Stiff Person Syndrome can expect and exactly how she felt.

She explains why sun glasses are her best friend when going to doctors appointments.

Whilst one in a million suffer from Stiff Person Syndrome, we just think Lauren is one in a million

Voiceover for intro and outro by Jennie Eriksen | LinkedIn

Music granted free of charge very kindly by Music: https://www.purple-planet.com . The track is called Hope and Inspire.

Transcript

Scott Whitney: 0:48

Welcome everybody to the second episode of season three of the All4Inclusion Pod. We'll get straight into it cause we've probably got a lot to cover today. But I'm gonna introduce you all to Lauren McDermott. Lauren, do you want to tell people a little bit about yourself?

Lauren McDermott: 1:06

Sure. I am a woman in my forties and I live in New Jersey. Not too far outside of Philadelphia and I was part of the normal workforce, normal childhood growing up. Born and raised in New Jersey. Never left the state I lived a pretty normal life up until the age of about 38 is when I was diagnosed with Stiff Person Syndrome. Also known as SPS used to be called the Tin Man syndrome, also Stiff Man Syndrome, and it's all moved over to just Stiff Person Syndrome. So I was yeah, diagnosed with that at 38 immediately declared disabled so had to leave work, and that's where I'm at now.

Scott Whitney: 1:49

Yeah, that's a similar age. I was just a year younger when I had my diagnosis. Was it w with me things, although they spiraled a little bit it wasn't, it took a while to degenerate. How was it almost your first kind couple of months?

Lauren McDermott: 2:06

First couple of months were really rough. If I look back, I can see possibly some things that maybe were precursors that I didn't realize at the time. But things started to get really bad in fall of 2018. I was diagnosed in August of 2019. So I was lucky cuz usually most people takes five to seven years to get diagnosed with stiff person syndrome. Now I think that I had symptoms starting back in 2011, so I would fit that timeline, but they were manageable. Could be, ignored, just thought it was old age, different things, just wasn't putting it all together. But yeah, it was late 2018 when things started to get bad. And I would say about two to three months before the official diagnosis, things went really downhill. Like not really being able to take care of myself, barely getting through work and such. I don't know how deep you want me to dive into like precursors or any conditions I noticed in the past or not. But

Scott Whitney: 3:11

yeah, I think I think precursors not a bad place to start because it's the start of the journey, isn't it really?

Lauren McDermott: 3:18

I did notice, I had Epstein Bar, which most adults will get. It just seems, I guess from what I read, to manifest differently in people and maybe open that doorway for an autoimmune neurological condition to manifest itself later in life. Didn't even know that I ever had it. I just had random blood work done and they said, oh, you test positive for Epstein Bar now and you always will. And I said, okay, what does that mean? I had mono at some point. Yeah. And I said when wouldn't I have known? Aren't you usually bedridden, for a couple weeks and missed school? And this is when I was, probably in my early twenties, so I have no idea when I even actually had mono. So now that obviously always shows up positive. I did deal with also chronic yeast infections for eight years. Sometimes they still come and go and I don't know if that is any relation to the immune system. They don't know what causes that. They think it may be genetic. On top of that, a lot of sinus infections for a period of time in my younger adult life, just every year, a sinus infection. Not necessarily diagnosed with allergies per se, but just always having sinus issues, sinus headaches, and so forth. other than that, just generally getting sick as normal, pretty healthy individuals, always into fitness. Eating healthy, don't get me wrong. I enjoyed myself. I partied. I lived a fun lifestyle, but nothing to the extreme. But as I got older I noticed whenever I went shopping or whenever I was doing dishes, my lower back would kill. And I never knew why. And no one else ever experienced that. And it's something I thought about recently, to be honest. And I know with SPS the curvature of the spine is not usually normal. It's usually has an extra curve. So perhaps that was it. I know that sometimes when I used to go to the gym and do deadlifts and such with the bar I've had some trainers say, flatten your back out. Why are you curving so much? And I'm like, what do you mean my back is flat? I can't, this is it. This is how my back is shaped. And that was as I was getting closer to the diagnosis and getting worse. So I put that together. And then I worked for a commercial real estate company for 16 years based out of New Jersey. We did the tri-state area. And then when we did retail representation nationwide, and I noticed I had to host meetings, supervise a couple people. So in some of these meetings, I was slurring my speech randomly to the point where I was kind of embarrassed cuz I thought, oh gee, I don't want anybody to think I'm on drugs. We got the opioid epidemic going on, or people think I'm drunk at work or something to the point. It happened enough times that I said to a coworker, did you notice me slur my words while I was talking in that speech? And there was a couple times people noticed, but it wasn't happening frequently enough that I really felt alarmed by it. Some other things were, I started having a lot of heart palpitations and I just contributed that to stress because I was moving apartments, selling my house, moving into an apartment, and then I was also buying a house up in the Catskills in New York, a mountain house. That was my plan to retire to. Starting in about 2011 is 2012 is when I started getting all around my back, like scalp, scapula area all these really tiny knots, but they were, felt like, almost like frozen peas. And I noticed driving long drives, cuz I always did road trips and stuff in the US and if I did like an eight hour drive, my neck started excruciatingly hurting, which was weird. Cuz it didn't happen to other people who drove that long. And I would need a day to recover once I got to our destination and just didn't understand why my neck hurt so much. I just thought, oh, it must be from lifting weights and sitting at a desk at work and maybe my posture isn't great at the desk and things of that nature. And so I would have to go for massages pretty much every month, every 30 days for five years. I did that and that's how I managed. And then it got to a point where I started going every two weeks because I noticed the neck is getting tighter. The back is getting tighter. I'm not getting the relief from the deep tissue massage that I once was. So even going every two weeks was not working. And then it got to the point where I was crying while getting a massage. And I'm someone who cried about once a year, I wouldn't have considered myself to be an overly emotional woman So for me to just be bawling on the massage table, my massage therapist even said, what is going on and what are these knots? And they would be back within days of going for a massage. It was like I never even went. And that's when. I finally thought, okay, I need to start investigating this because this is not normal. I don't know anybody else that this happens to and there's no point in paying for a massage if it's not working cuz they're not cheap. Taking time outta my day as well. So that's when I decided I had to go to a sports medicine doctor and start slowly investigating maybe there's something going on that I'm just not aware of that I should be doing better.

Scott Whitney: 8:25

And then what was the like diagnosis process like with tests, et cetera?

Lauren McDermott: 8:31

So the sports medicine doctor initially thought same thing as me. Got some disc issues, not anything herniated, but yeah, age lifting weights and stuff like that. And maybe at my desk. So we reconfigured my desk. I would put in for an order for a standup desk. I did the double monitors, of moved'em around, got the lumbar support. Just different things. I was trying that. honestly weren't making a difference. She gave me some different exercises to do. Thought maybe my back muscles weren't strong enough, which they were. I always worked out every muscle in my body. I was very much into weightlifting. I've been doing, I was doing it since I was in eighth grade. I really enjoyed lifting weights. Arnold Schwarzeneggar was my hero, So yeah, so she was just giving me some other little tips, which I did diligently and nothing was really working. And then one day I remember I was doing an assisted pullup with a, a band around my leg and I felt something pop on the left side of my neck. And it didn't hurt, but I just, I heard something and it was just a very odd feeling. And I got down and it's hard to tell now, but on video. my neck was popping out and palpitating, I had never seen anything like it. And I had to call people over who were around am I losing my mind? Or is this actually happening? So I guess that was a mini spasm that didn't hurt. But, so now my neck has actually never really returned to the same. It's always looked awkward since then. And then that, so the none, no improvements with doing that stuff. And then it was, okay, let's try a chiropractor. Let's try different types of massage, more like a trigger point. So we did that for a while and again, not feeling relief actually, if anything getting worse, the shoulder's starting rounding forward even more. And then it was the knees starting to hurt, which was weird. I never had any problems. So she started to get a little bit of a feeling that this was systemic and just slowly coming on. Sleep apnea test, am I getting enough oxygen to my muscles? Blood panels, checking for tickborne illness, different things of whatever else these blood tests are, the autoimmune panels, lupus, whatever else they can tell from all these other diseases to rule out. Trying acupuncture, trying cryotherapy. There was so many things that we tried and everything was coming back fine and none of the holistic approaches were helping. So then it was lidocaine injections directly into, i mine started in the upper body, which is rare for SPS. Most people start in the lower body or maybe just have it in one limb. So then she decided to do lidocaine injections directly into the chest, back, neck, so forth and said the first few days are gonna stink, but after that you'll have a sense of relief. That never happened. It was just a week of utter hell to be honest. I couldn't get my shirt on or off. Had trouble getting dressed, have trouble moving my neck at work, but I stuck it out and tried it about two or three more times cuz she said maybe it's gonna take a couple times. Still no improvement. Her last ditch effort with me at this point, she did send me to a neurologist who also couldn't really figure out what was going on from one of the scans we did. He could see that my neck was super straight when it should be a little curved back and he didn't really understand why that was happening. So he could tell there was extreme muscle tension in the neck but couldn't really tell me what it was from trying muscle relaxers at that point. Tried two different kinds. They didn't do anything. Oddly, I feel like they made me worse, which doesn't make any sense cuz if the muscles are tight. So then her last ditch effort was the Botox injections, which is a treatment for SPS, but unfortunately didn't work for me. So fast forward to July of 2019. It was right around my birthday. I'm out I got my Botox injections. I was told no limitations on anything and I had some good days in there still. So I pushed through. I was up in the Catskills hiking and trying to be out in nature and forget about all the things that were going on. And in the middle of hiking in the woods with a backpack on, I overcame with a wave of nausea, feeling extremely disoriented, didn't really understand what was happening. My neck was killing. I couldn't carry the backpack anymore, I had to give it to the people that I was with. And I said we, we need to get out of the woods as soon as possible. I have to go back to the house. I don't know what's happening. Cry the entire like 45 minute ride home cuz you were going through the windy wooded roads. And got back and was basically just went completely downhill the whole month of July of 2019 to the point where, I couldn't brush my own teeth. I couldn't put my hair in a ponytail. I couldn't trust myself. I couldn't bathe myself, could not cook. Extreme pain where I just had to be on a heating pad as soon as I got home. And I was still pushing through work, but got home and on the heating pad, just crying all night, disturbed sleep just cognitively not with it. And then the last few weeks before I ended up getting into the appointment, I ended up working from home, which I could barely even do that. It was becoming more and more challenging every day and the day before, my most important appointment to get into a new internist that I knew could fast track me to a lot of other good doctors, cuz I thought I have to elevate and go to a better institution now, hospital, whatever medical facility to get better treatment by better doctors. I woke up and my right arm was frozen into place very painfully. I could not move it at all, any which direction. It was so tight and so painful. So I went for an emergency walk and appointment that day the day before my scheduled appointment. So I had to go two days in a row to the same office that was like 45 minutes away and being in a car for more than about 30 minutes I can start to go into a spasm, so the travel can be very challenging and so it sucked going to the appointment two days in a row. But that's a where I eventually did get diagnosed.

Scott Whitney: 14:53

And when they gave you your diagnosis, what can you remember what was going through your mind when the words were actually said?

Lauren McDermott: 15:04

Yeah. So interestingly enough when I went for that emergency appointment, I, about a week or two prior, I had a coworker who I had sat down with for about an hour, who was kind enough to listen to me and said, what is going on with you? I noticed in meetings you're really struggling. I noticed you can't move your head. I think that one day he touched my shoulder and I freaked out. Don't touch me because if you touch me, it hurts. And. He's a very smart guy. And ended up emailing me a link to John Hopkins. Now, meantime, I'm doing tons of research. My partner at the time was doing a ton of research, my family members just to try to figure out, but there's so many conditions that have muscle spasms. You could research it for days on end. For some reason, I never stumbled upon stiff person syndrome. It just never came up. I, and I, and like I said, I'm pretty diligent, but I was also dealing with a lot and of doctor's appointments and trying therapies and not feeling well. So I did as much time to dedicate to it as I could, but it was tough. So anyway, he sent me this and I immediately started crying the morning I read that. So this was before the arm was frozen in place and went for the emergency appointment, and I registered Finally, I was crying because I was not only completely terrified to what I was reading in that, oh my God, is this what I have? But I also. Thought, oh my God, I think this is what I have. I think I finally figured it out. So when I went to that emergency appointment, I mentioned to them I wanna be tested for the GAD antibody, which is like the number one first test that you do. And I was laughed at and told that I would probably be on a respirator and close to dying if I had SPS, which is not what I've read in the literature. So I was shocked to hear that. As far as I know, it's not considered terminal. I think people tend to mostly die from comorbidities, so I just was shocked by that. But as they were pulling blood, cuz they wanted to draw more blood, despite that, I had already all these tests. She came in the middle of blood being pulled outta my arm, must have talked to a neurologist or something and said, test her for the GAD antibody. So I thought, yes, what a win. So the next day I go to the appointment, explain my symptoms in really rough shape still. And they were waiting for the test to come back. In the meantime, the test comes back. The GAD was negative, but because I was doing so poorly, they decided let's try Valium, because that's what the benzodiazepine is the first line of treatment for stiff person. And let's see how you start responding. And in the meantime, they were setting up appointments with a rheumatologist, a neurologist, and all these other people. But based off of the internist experience who had been there for 30 plus years at that point. And seeing all my tests and I think he did some of his own research. I remember being at home with my mother and the phone call came through and he said, I do wanna tell you. I do think that you have this, we can't think of anything else, but you're still gonna go through and see all these other doctors. But I think you're onto something here and this seems to be the biggest fit. And just bawled just felt good to, to be acknowledged in that sense. But it was also, I'm like, there's no cure. They don't even know exactly what causes this. They think they know with the GAT antibody and some other things. But my mother and I honestly just hugged each other and sobbed and I said, I don't wanna have this. I don't want this to be my life. What am I gonna do? I have to quit my job. All these things are running through your head. And my mom just was like, I don't want you to have this either, and I don't. What am I gonna do for you? How can I help you? And, so it was just, it was a very. It was good but it was also bad, so it was a lot emotionally to process and then further seeing these other doctors. They couldn't come up with anything else. The rheumatologists that I met with were really great and the head of rheumatology actually came in cuz he said, we have never had a Stiff Person patient come through here. And I thought, oh boy, you guys are a pretty well renowned institution in the Philadelphia area and you were telling me you've barely ever seen this, if at all. And now I'm really scared because I don't know what you guys are gonna do with me cuz I don't even know if you know what to do with me. So yeah, that was pretty scary.

Scott Whitney: 19:29

And I think we've spoken a lot about some of the early symptoms that you've had, what was leading up to it. but can you give a description of exactly what stiff person syndrome is for everyone that is listening?

Lauren McDermott: 19:46

It's considered a rare acquired neurological disorder with progressive muscle stiffness, pro rigidity and repeated episodes of painful muscle spasms. Exact cause, still unknown, but possibly an autoimmune disorder. So I have seen it called a neuro autoimmune condition. So there's something not firing correctly in the brain, but also possibly an autoimmune response. So not fully sure the Stiff Person Syndrome Research Foundation, which is the only US based foundation that was formed in late 2019 by Tara Ear. The, what I like on their website is at the top in quotes, they say, imagine having a full body Charlie horse, which is probably the best way to explain it. Basically it can affect any muscle in your body. And we have roughly, I think, 600 or more muscles in the body. It can affect your eyes, your tongue. Yesterday I had a spasm behind my ear leading down to the neck, and it felt like someone sucker punched me in the neck and, affecting my hearing and just my balance and just general kind of orientation. Whereas last week it was the eye twitching, constantly eyes moving. Oddly, I've heard of people having eyebrow spasms and some areas are more painful than others. But it's also stress induced and a lot of people become overstimulated by the stimulus in the world. And not everybody has a startle response is what they call it, whereas I do so and it depends on the day and it's gotten better. Obviously with medication before I was medicated it was pretty bad. So it's not I wouldn't advise you to scare a stiff person syndrome patient. Halloween used to be my favorite holiday, not so much. Now it's a little too spooky and scary at this point, but What can happen is because we are already stiff all the time, if someone, if you have a quick reaction, like a quick turn of the head or there's a loud noise, or yeah, someone comes up from behind you and touches you in a certain way or grabs a muscle, like onto your shoulders or something, it can send you into a spasm, whether right away or delayed like about an hour or two later. But to me, and I don't know if it's s p s causing this or the medication or both, but I think just because you're always dealing with tightness and pain, obviously it weighs on the brain. So a lot of brain fog extreme fatigue forgetfulness, really bad short-term memory trouble speaking sometimes I had a throat spasm not too long ago. And I couldn't swallow fluids, I couldn't speak properly, so clearly I couldn't eat. And it felt like I was being choked by the front and the back. It's, it feels like sometimes you're in a vice. Like my abdominals had a spasm the other day and it feels like a vice is literally just taking your torso and trying to squeeze it together as much as possible. I'm trying to think of what disturbed sleep. We also get internal tremors, so that was early on too. I would lay in bed and I would feel as if my entire body was vibrating and I would look at it and nothing was happening and it just really screws with your mind to the point where I would have to ask whoever I was with at the time. Is my body moving? Is anything happening? and it is such a weird, uncomfortable feeling to describe. I don't know. So now I'm hobbling around. And using a cane isn't always a great idea because it's in my upper body. So then I can't put the weight on the cane because it hurts my upper body too much. So a lot of people do end up as wheelchair users because I think the walkers and the canes, if it's in your upper body, just don't support you. It's just impossible. I've heard of some people using crutches as well, but for me, I get spasms in my in my armpit, abdominals down shoulders and everything. So the crutches just aren't even an option. So to me, When I can't, if I can't furniture surf as I call it, in wall surf anymore, and grab on the counters and this and that, I'm, I will be in a wheelchair because the cane is only like for short term use here and there when I have really bad episodes at home and maybe to go out to doctor's appointments and such. But it's challenging to you,

Scott Whitney: 24:29

and how does it affect you day-to-day and socially? So what impact does it have on what would've been a, a day prior to stiff person syndrome?

Lauren McDermott: 24:43

I was always extremely a schedule oriented person. Very organized, planned ahead for everything, vacations, and always got my friends together. They. third name for me was like PR McDermott, which was just always getting my friends to get together for brunches and going out to eat and, different things like that. And that all went out the window. I do not have a schedule at all, which is very hard for me to deal with, and I'm still learning how to deal with that. I don't get outta bed the same time every day and my alarm goes off at the same time cause I have to take meds. But that doesn't mean I'm getting up and outta bed. And some days are just completely in bed all day, and that could be even three days in a row. But you never wake up refreshed. E even if I sleep, for me, the sweet spot is about nine hours of sleep. I have to at least get seven or more to be functionable somewhat for the day. If it's a fairly good day. But nine is like my sweet spot. But even then you don't, I wake up feeling like I have the flu or I'm coming down with the flu. So it's just, you never feel refreshed and energized to take on the day, which is really hard because I was someone who as soon as the alarm went on, I'm up. I never hit the snooze button a single day in my life, So now it's just no, I'm not getting outta bed. So that's hard. And even on treatment some days getting dressed can still be very difficult. There's, I had to revamp all my clothes and I don't work anymore. I can't work, I'm not able to because of. all the issues I've described already. And cognitively I'm not great every day, so I just, I can't commit. And since I can't commit to any kind of schedule or anything like that or use a computer for a long period of time or type for a long period of time or any of that kind of stuff. So I'm able to wear more like athletic gear. So it's loose shirts that I can finagle my way in and slip one arm in and awkwardly try to get the other arm in, or I have to have my husband help put my shirt on or take it off. Pulling up, tight yoga pants can be tough, so I have to be careful as to what I'm wearing on those days. Even putting shoes on and off. I recently. Came across UGGS that they made with zippers on both sides, which I'm super excited about and wanna get a pair because I have UGGS and I don't really wear them because I can't put them on and take them off by myself. So I'm excited about that. So that'll be on my Christmas list for next year. I can't do the things that I used to love to do. I used to ski golf, hike camp, travel a lot. So all that stuff has gone out the window. I can do some traveling, but has to be fairly local and I'm usually a hot mess by the time I get to the destination. Had to purchase a new vehicle to, for my husband to drive so that I can be more comfortable because my Subaru Outback. was, is a loud motor and a little bit of a rough ride. So I had to get something with a little more comfort that I can travel and feel a little bit better when we get to our destination. But I have to always factor in that day of, I'm just might just be laying in bed that whole day. We, after we get there and the next day. I don't drive. I don't work. Like I said. Socializing is extremely challenging. Like I said, I used to be extremely social and while I still have a lot of friends and they are amazing, I am constantly canceling plans. And while you feel a sense of guilt, I'm learning to wrap my head around it. And I know they don't get upset. A lot of it is people have to come to me or I gotta go somewhere local, close by. that I can Uber to or someone can drive me to or pick me up if I'm going somewhere that's even half hour away. A lot of times friends will offer to come grab me or my husband will drive so forth. But yeah, I can't go to concerts anymore. Maybe I could handle an outdoor concert if it was small and a band that was in the distance. But anything, any too loud of music I can't handle. I can't even handle a loud TV or radio anymore. I'm used to blare the music in my car and sing along to it. Those days are gone. And no more movies. I tried going to the movies and realized what a terrible mistake that was. I had a neck spasm in the middle of the movie and had to leave. I used to love dancing and going to yoga classes. Those days are over for now. And Mental health challenges. It has really affected my mental health. I never had any mental health struggles prior to this. And I sometimes don't recognize myself, which I hate, I know I'm dealing with a lot and I have to try to learn to give myself a little more grace than I do. I'm very hard on myself, and I think that's why I've persevered with this. I'm my own physical therapist. I don't even go to see a physical therapist, But so every day I, my goal is to get up and either go to a doctor's appointment if I have to, or try to brainstorm an article or just try to get on LinkedIn and, be active with the rare disease community to try to stretch if I can, to go for a short walk or do some sort of kind of light aerobic activity inside. To try to eat well. Although my appetite completely fluctuates. One day I can be ravenous, then I can not want to eat for three days straight. Lots of hydration. Talking to friends, watching movies reading books has been challenging. I love to read and it's been tough. My eyes have been affected a lot of burning and weeping. And it can hit any time of day. It's not too much screen time. It's not I don't know what the rhyme or reason is there. I don't know if the muscles just get tired, but I have to close my eyes because it will be burning. It feels like someone put acid into my eyes. So that's a newer thing that's been happening. And yeah, no more shop. I don't go shopping, everything is delivered. You could, I one time during, early on my mother and I went to a Costco, and I can, if I'm having a good day, I can get out of a car looking fairly normal, as we know, people can look normal and have a lot going on, normal in quotes, I guess I should say. But, I walked into a Costco with her and looked like a normal functioning adult. And within 10 minutes, tears streaming down the eyes, down my streaming from my eyes and walking like a zombie, dragging my foot, barely able to move. And my mother turns around and says, what just happened? And I said, I don't know. So if I go into doctor's offices, if I do have to run in for something quick into a food store, I have to wear my sunglasses because the lights bother me as well, and I've worn noise canceling headphones into different places doctors, doctor's offices and such. So yeah, it's really hard. It's, and sometimes it's predictable as to what's gonna give you a spasm and trigger you. And when, if you've done something or been to a social event with kids or pushed through a hard day, the next day to three days are gonna be rough and you've better clear your schedule or make sure you have nothing planned. Whereas other times it can just come. And I, like yesterday, I don't know where the ear thing came from, it just came outta nowhere. And another thing I've noticed is just simple things. If I hit myself in the shin a couple weeks ago, I can't even remember with what, and it just seems to reverberate over the entire body. whereas before it would just be, oh yeah, I hit something on my shin. And I know no one likes getting something hit in the shin, but I just, it's hard to explain it. Just anything that kind of touches you unexpectedly just, it just takes over your whole body. It's if someone body slammed you. So it's really weird. I don't know. I don't know how else to describe it.

Scott Whitney: 32:44

And you mentioned about mental health and difficulties with mental health and, I guess some of that will drip into like sleep and different things like that. But what sort of strategies have you found to support your mental wellbeing?

Lauren McDermott: 33:04

So I tried meditation and it can help when I'm not in a serious episode, but it doesn't really help when I'm having a serious spasm, flare episode, whatever you wanna call it. I do try regulating my breath, but I can't, when the pain is so bad, it's really hard for me to do any kind of visualization or use an app. I typically need silence and I need to put myself into a dark room with no noise, no people, and lay on a heating pad and just wait and ride it out. But support is. Paramount finding a support community, which I am part of an s p s support group. We used to talk biweekly in a month, but now it's once a month. But we also have our side group chats. And, that has been tremendous because they really know what I'm going through. I did try a couple therapists didn't really click. I have one now that I like. But funny enough I'm always told in therapy that I'm doing what I'm supposed to be doing and my therapist often says, I'm very impressed by you because, you really research your condition. You advocate for yourself. You try, you push yourself with working out to try to stay healthy and stay strong and. you have your support group and also I have your support group, the all four inclusion disability wellness, which has been amazing cuz I get to meet people with different disabilities, which helps as well because sometimes there are some overlaps with different things with my whole sensory overload and or different neurological conditions that other people can relate to. We might not be going through the same exact thing, but close enough that we can relate to each other. So that that has helped more than regular therapy for me because, like I said, I feel as though they tr they truly understand because they are there with you going through the same things. And even though people with s p s everyone presents differently and responds to different treatments and has it in different parts of their bodies or all over their body, but it's still helpful and wonderful and. Like I said, I used to be reading every once in a while, like I can do a puzzle for a couple hours. I play words with friends. Like I try to find ways to keep my brain stimulated and distracted. Yeah, I guess that's, oh, another thing I forgot. Salt Epsom salt water, sensory deprivation floats. I think that saved my life. to be quite frank. I started that a year ago. I found a really great float place by me that has larger swimming pools, so it's not a pod. I've heard a lot of places are more of a pod, so people get claustrophobic. But it is a lifesaver for me. I go once a week. I wish I could go three times a week, but it's just too hard for me logistically to get there that frequently. But it's 90 minutes and sometimes I'm in there for 90 minutes, literally bawling my eyes out. Crying just uncontrollably because I maybe had a rough week, and that's fine. That's how I get it out. But in the meantime, I'm getting all the magnesium and I'm in a warm environment and I can turn off the lights and the music in there. And it's basically like I'm in this cocoon and this dark cave. And I always say to my therapist, I wish I could live in that flute. If people could just come to me and I could just live my life in a flute, I think I would do okay. But obviously that's not realistic. But when my mental health was really suffering after the holidays in 2021, yeah. That's when I decided in early 2022, I'm like I gotta try to find something else because I know I'm doing all these things, but I still am having a lot of suicidal ideation and it's something I never had before. And to be honest, it's. I hate to say it, but it's always there. And especially when an episode hits, it's, I've screamed to my husband, please kill me. I want you to kill me. And I mean it if there was an option at that time where he wouldn't get into trouble and I know there could be a shore fire way of me getting out of it, I would do it. And even though, despite that I'm working so hard and doing all this stuff and trying to advocate in small ways that I can do, on my own time and on my own schedule, it still doesn't take away the fact that, I'm grieving my old life. And I've grieved a lot already that I've lost. And then it continues to be more grieving because you lose more and more, it's oh, now I'm getting spasms here and now this part of my body is never gonna be the same again. Cuz that's basically what's happening. It started in the upper body and the upper body's never the same. And I can't even have someone massage my upper body because it will put me into a spasm. My lower body can still be massaged because it went there after the fact. It hasn't been there as long. But I ended up, they switched some of my meds and I ended up having pelvic spasms, which I could probably attribute to probably the same as like labor pains. And cuz I've heard other women describe it, I don't have any children myself. But I dropped the floor and that, that was probably the worst pain of my life I've ever felt. And that was really scary. And on my right leg especially, has never been the same since then as well as my pelvic area. But yeah, when you just start having spasms, those part of your body never seem to get the full mobility back and never seem to go back to the. kind of flexibility movement that you were able to have before then. And it just keeps happening in more and more parts of my body. Yeah.

Scott Whitney: 38:41

And you spoke about your the rare disease group that you read up on or part of Paul of and look into. Can you tell us a little bit about, a little bit more about that and what sort of people you meet, how you get involved, how other people can get involved and read up things themselves?

Lauren McDermott: 39:02

So I am personally not on Facebook or Instagram, which I know is so weird and I never have been. I was on Facebook for maybe a blip to date on Tinder for a smidge But other than that never actively on, never even joined Instagram at all. So I am only on LinkedIn, which I never really used for work to be quite frank. It just wasn't necessary for my role at the time. But I decided to just start looking more on LinkedIn and obviously that's where I found your group. And I've connected with a lot of people on there, one of which was Taras Zear, who does, is the c e o and founder of the Stiff Person Syndrome Research Foundation based in Bethesda, Maryland. So I connected with her, and then through her I got to connect with some more people. But I did have friends and my partner at the time when I first got diagnosed and then my husband now I do have people troll if you will Facebook for me and have shared information. So I think it was either 2020 or 2021. I can't remember how many years now we've been doing the support group call. But I did have a friend fine on one of the s p s groups cuz there are, there were like three groups when I got diagnosed on Facebook. And so they followed them and she found a group call and that's, she let me know about the link and I was able to get on. So that's the people I really connected with. But also I had them of just always check for different medications people were on. It was too hard for me to look at that moment cuz it was a little too raw for me. And, people do post a lot of, it's a very serious disease and it's extremely disabling and debilitating for many people and it was hard to look at that. just being diagnosed thinking, oh wow that's where my future is going. And I don't know if I'm prepared to look at this stuff. Some people have a jerking form, which they literally, body movements are all over the place. And it could get it pretty, pretty nasty. So it's hard to look at. So yeah, I have a group of about probably 10 women, cuz it mostly affects women. S p s and one gentleman that's in our group that I talk to all the time and. Yeah they are really my main support. I feel like they're just like sisters or family at this point. And I do have one that lives in New Jersey that's only about 45 minutes away, And we have tried to see each other so many times and we've always had to cancel because one of us just can't make it. And, she has difficulties driving and I don't drive. So it's here. We are still trying, we're trying to meet up on Rare Disease Day, actually her and I. So I hope we can make it happen

Scott Whitney: 41:44

Excellent. So when is Rare Disease Day?

Lauren McDermott: 41:47

February 28th.

Scott Whitney: 41:49

February the 28th. And what type of thing would you want to see from, businesses, people, et cetera? On on Rare Disease Day?

Lauren McDermott: 41:59

I. I mean from what I've seen in the last two years on LinkedIn, it has really exploded. And February is just chock full of a lot of rare disease stuff. I I already see it getting pumped out now, rare diseases coming up and stuff. So they do a really great job. It can actually be a little overwhelming to keep up with the content, to be honest, cuz there, there's a lot out there and I feel the shear's gonna be even more, which is great. But yeah, I mean I would just, I love when people share their stories. I read the storytelling is paramount because it's cathartic for people, which is why I do it. Get my frustration, my anger, emotions just down on paper and different things. And it just helps me sort through some of my thoughts and what I'm going through and what I wanna do next and how I wanna advocate for myself better. But yeah, I mean I just think people posting pictures and their stories and I'm sure people will be doing fundraisers. I've tried to think of ways to do a fundraiser that would be economical for maybe me and my family to put together, but we just haven't been able to find a good way that we think could be economical, but also have that reach to get enough donations to make it worthwhile. I know they've done a few things locally down in the Maryland area with the Stiff Person Syndrome Foundation and people can donate to their site. And they have been getting a lot of donations since this Celine Dion News of her having stiff person syndrome and people do Facebook fundraisers, so I'm sure a lot of people will be doing it on Rare Disease Day. But again, I'm not on Facebook, so I don't participate in that, but I know that's been getting a lot of traction. For me personally I planned a brunch a couple of days before Rare Disease Day that hopefully I'll make with my girlfriends at a home nearby. And we plan on just putting on a bunch of my rare disease t-shirts and taking pictures cuz there's, I can't really participate in a walk or a run or anything of that nature. So that's what also makes it hard, you want it to be inclusive. For example, what if the girl in New Jersey wants to come and join the girl that I've been trying to meet up with? It wouldn't be feasible for her to do some type of physical activity fundraiser and I want people to be a participate. So that's why we'll probably just do something simple like that and then I'll do some posting on social media and.

Scott Whitney: 44:17

Excellent. And then finally, you mentioned there, and I had it noted down obviously about Celine Dion, who's potentially maybe the first celebrity that has come out with stiff person syndrome. How's that impacted things for the community?

Lauren McDermott: 44:35

It's been pretty wild, I would say. I'm seeing so many more articles from people I know, people that I don't know. Interviews one of the girls in, one of the women in my support group. She is also a neurology resident and has s p s and she did a fantastic TV interview. Funny enough, the couple days before the news broke the one woman at Jefferson Hospital that did an article with me. She had reached out to the Philadelphia Inquirer and said, would you guys be interested in talking about stiff person syndrome for the medical mystery section? And they had a lot of content that they had to get out before the end of the year. So we said, okay, maybe we'll try again next year. Then the news broke Thursday and then I got a phone call by that afternoon to to do an interview over the phone. And then that night, the Philadelphia Chronicle article went out with the picture of me and Celine Dion standing next to each other, a side by side Which was just, it was mind blowing. I got a text at 6:30 AM that day and every news station was covering it. My, my head was just like, what is happening? It was just, doctors don't even know of this. You don't know how many doctors' appointments I've been to, and I say, stiff person syndrome, and doctors don't even know. Fellows don't know. anything. I'm going to, I'm educating people about stiff person syndrome in the dentist's office at the gyno It doesn't matter where I am, if there's a fellow in the room or someone that doesn't know about it. Next thing I know, I'm talking about stiff person syndrome for an hour, and they're usually seem quite intrigued, but what I always get from medical students is, I've never even heard of it, but of course there's, they, we know 7,000 rare diseases now they think upwards of 10,000. So yeah, I mean you could never know all of them, of course, but what it's done now is put the name of the disease out there, which is huge in itself, is just the fact that people will actually know what stiff person syndrome is and a lot of times, Say that I have it, people think I'm making some sort of weird joke. Like they laugh what do you have? What are you talking about? Say that again. And I say, oh, stiff person syndrome. And they say, what the heck does that mean? And when you describe it out, it's a muscle spasm condition, depending on how deep you wanna get in one environment you're in. If it really allows for you to explain to people. I don't think people fully grasp how hard this is to manage and how complex this disease is. And the havoc that it wrecks on your body and mind. So it's really hard to explain that to people. But now I feel I can just say I have what Celine Dion has, and honestly, people know now. Oh yeah, I've heard of that. And why I feel awful for Celine and watching her video was, made me tear up because I couldn't. I could just feel from her energy and her Instagram video and, the way she was presenting it and how slowly she was talking and so forth, I just, it's, I could, it looks to me like she's still processing it, which I can totally relate being in that situation where you're still wrapping your head around it and trying to explain to the world what's going on. But yeah, I think it's brought in a lot more donations to the foundation, which is awesome. And it, like I said, a lot of people are getting interviews, articles first, doing a podcast here, And so I think it's good in that sense that it's opened the doorway and we have to take advantage of this momentum right now to get the word out. Cuz as we know with news, Selma Blair came out with her MS diagnosis. Christina Applegate with ms. Now you have Celine Dion with s p s, I know Ashton Kutcher came out with what, VA vasculitis or something like that. There's always gonna be something new. So a news travel so fast, you have to take advantage of this exposure and I hope that maybe she can become the spokesperson, which would be amazing. She's a very well respected celebrity and was still had a residency in Vegas, and I hope maybe she can just bring about even more awareness than she already even has. What she already did was very brave and bold and has created a lot of waves. My heart goes out to her though. I, I really, I hope she is, Managing and getting the proper treatment and has good doctors and such excellent.

Scott Whitney: 48:59

And then finally, if you've got a message to anyone listening now, whether they're either going through a diagnosis, they've got a family member, or maybe they've heard something in this episode and they thought, actually I'll, what's, what should my next steps be? What sort of messages have you got?

Lauren McDermott: 49:21

guess a couple things. To me it's, I would recommend if you are on social media there are, and I think there are even more Facebook groups now for s p s. I think there's more than just the three, I believe since I was diagnosed. So obviously, maybe that's a good place to start, just to see what's out there. N I h Nord, John Hopkins, Thomas Jefferson, Cleveland Clinic Mayo Clinic. Just research and read as much as you're able to. The more you educate yourself the better conversations you can have with your doctors. And I know it takes time and the, The medical articles are hard to read through and really quite honestly translate sometimes. But I do my best and to try to find that support network for you whe whether that be on social media. People could always reach out to me. I've gotten quite a few people in to see my doctor that have been undiagnosed for a long time or looking for a second opinion. I'm more than happy to share the call information for the support group that I'm part of because it's been great for so many of us. And to be your own advocate, which is obviously very important in rare disease. And it's extremely hard to do. But you have to do it and you have to keep pushing back. And every appointment I go to, I have a laundry list of new medications to ask about that I've researched, new IV treatments things that I've learned in my support group that, hey, this person is trying this and that and so forth. And then I do think, if it works for you, try therapy obviously. And just keep trying different kind of holistic, sauna, steam rooms, the Epsom salt, sensory deprivation, floats, massages, whatever, acupuncture, whatever. Just keep trying things cuz eventually you'll find something that gives you a little bit of relief. But I think what I, a big thing too that a lot of people don't really talk about, is if you are working right now say, and a healthy individual, my advice to younger generations would be, which is something that I did do per the advice of my father, thankfully, is to, if you're working and you're able to afford it, is to absolutely pay into a short-term disability and a long-term disability plan because you have no idea when you're gonna use it. I thought if anything, maybe I'd break a leg skiing or something, or doing something active fall during hiking. I didn't think that I would be on long-term disability for some sort of rare disease that no one had ever even heard of. And one to, to two in a million of people in the world have it. And. take advantage if you are able-bodied. Don't take that for granted. And I think, you do until you, you lose it, right? Which is where I was. But had I known that this was gonna happen, I probably would've even done a lot more adventurous things than I already did But it's, you just never know when you're gonna lose mobility in some part of your body or come down with something that's gonna be extremely life altering. So to really enjoy every moment you can and try to really work on that work life balance so you enjoy life and not just work. I was a workaholic cuz I didn't have children, so I just dumped myself into work. And I think, and I enjoyed it and I like challenging myself and that's where a lot of my time was, spent a lot of long hours and I of wish I didn't do that to be quite frank because. I could have spent a lot more of that time being out in the world and enjoying life instead of sitting at my desk for extremely long hours. And share your story. I know it takes people a while and everybody's different. Some people are very private. I am a very open book and I always have been, but by sharing my story, I have learned so much from others and about myself and, learned new doctors, learned of new treatments, just, and things that maybe I would've never even thought of. That could be a symptom of s p s. But now I hear someone else talking about it and I'm like, oh gee, that is from s p s huh. That happened to me last week, but I just brushed it off again. I'm still brushing things off, sometimes and you don't connect it always right away. But that's just even when I was battling my chronic yeast infections. Talking to people, then I found better doctors, got better care. Then just telling even complete strangers, I've told and you, because you never know. They may know someone who's suffering from pain and spasms and have no idea what they have and might just dawn on them, Hey, I talked to this woman and she has this rare condition, and it sounds like what you're going through. And if I can help just one person, that, that means so much to me because I know I would've appreciated that help. And I've gotten it from, the community now. But if I, early, earlier on, if I had known someone and the, and had heard about it, it would've snapped in my head.

Scott Whitney: 54:15

Yeah, definitely. I think early support is definitely something that that can make such a huge difference when you're going through something and, there's so much, although our conditions are very different, there's so much I can resonate with our ages being very similar when it happened with it all just coming on like a click of a fingers. And like you said, you just don't know when something is going to just come and, just crash into you and everything changes. It's, there's some really tough times when it changes, but then you also get to meet some great people at the same time. Absolutely. You go through a lot of pain. You then start to appreciate the days when it's pain free a lot more. Absolutely. So yeah, so thank you so much for for coming on sharing your story. Thank you for being part of our disability and wellness conversation every other week. It's thank you It's brilliant to have people, from all over the place with different conditions and like you said, it's how we can all support each other. So everyone listening, thank you so much. Another episode will be out again next Wednesday, so please tune back in. But once again, Lauren, thank you so much for coming on.

Lauren McDermott: 55:31

Thank you. I appreciate your time.