Family Stories: Diagnosing a Neurodegenerative Condition

Episode Transcript

Dr. Daniel Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa. This is the Brain & Life podcast.
September is Dystonia Awareness Month. Listen to a couple of our past episodes featuring conversations with musician Billy McLaughlin and writer and producer Rogers Hartmann to learn more about their experiences with this condition. You can find these wherever you get your podcasts. There are also more articles and resources about dystonia on the Brain & Life website.
Along the lines of a movement disorder, which dystonia is, this week, we're covering a condition we have not previously discussed with you here on the podcast. In this episode, we feature a community story with Audrey Stafford, wife and care partner for guitarist Jeff Golub, who passed away due to complications of this condition called progressive supranuclear palsy or PSP.
This episode was done in coordination with the CurePSP organization, and we'll also feature another community member and a medical expert so that we can all learn about this organization's work and how doctors help the community living with PSP.
Mr. Salin Geevarghese offers his own family's perspective as a community care partner, supporting the care of his mother and then also dedicating time and effort to work with the CurePSP organization to advocate for this condition. And we have coming back Dr. Alex Pantelyat. He returns this time to discuss PSP with us. Dr. Pantelyat was also the medical expert who was featured in Billy McLaughlin's episode, where we talked about the neurologic condition focal dystonia.
Make sure to check out those past episodes and stay through and listen to both this community partner and our medical expert to really learn more about the variety of what people's life with PSP can be like and some of the organizations that are out there supporting this community. Stay tuned in the coming weeks. Make sure to subscribe so you don't miss our upcoming episodes.
In one of our upcoming episodes, you'll learn more about the American Academy of Neurology's Brain Health Initiative with Dr. Natalia Rost and David Evans. We also have an episode coming up featuring a mixed-media artist, Laura Bundesen, who shares her experience living with vestibular neuritis. So, if any of you have ever dealt with dizziness all of a sudden, this is a key episode. Now, don't forget to follow and subscribe so you don't miss these episodes. Thank you very much.
Welcome back to the Brain & Life podcast. If you've listened to artists like Rod Stewart, Tina Turner, Peter Wolfe, John Waite, Vanessa Williams, many others, then you've probably also heard Jeff Golub on their albums or on their tour playing guitar with their bands. Later in Jeff's career, he played with his own band, Avenue Blue, and as a chart-topping solo jazz artist, has work spanning jazz, blues, and rock over the years.
Today, I'm joined by his partner and wife, Audrey Stafford. In 2015, she, their sons, Matthew and Chris, and the music community lost Jeff due to complications of a condition called progressive supranuclear palsy, where the acronym we'll also use is PSP. Throughout the journey with his PSP, Jeff and Audrey became advocates and supporters of the CurePSP organization, and Audrey continues to support their efforts.
This included Jeff and his collaborators producing a documentary called Train Keeps A Rolling, released in 2021 and available for streaming online. In this documentary, he and Audrey share his experience with PSP. Before that, he and his friends also supported CurePSP with benefit concerts and benefit albums, all raising money to support increased research, support services, and the hope for a future cure for PSP and similar neurodegenerative conditions.
In our previous episode, where we highlighted current topics in neurology, you may have heard about the organization CurePSP, and we have collaborated with them to bring you this episode with Audrey. Thank you, Audrey, so much for taking the time to be with us today.

Audrey Stafford:
Oh, absolutely. Anything to, you know, spread the word about PSP because it's important.

Dr. Daniel Correa:
I wanted to start by learning more about you and Jeff and your relationship together. Did you meet him as he was a budding rockstar?

Audrey Stafford:
I did. I had moved to New York. I was 25, and I was a budding actress. And one of his good friends got a big crush on my roommate and started asking, in a very cool way, Colleen and me to come see his friend, Jeff, play at The Bitter End. So there it began in, I don't know, 1986 or something, I do believe.

Dr. Daniel Correa:
Oh, and then the two of you, you built your relationship together living in New York City and him-

Audrey Stafford:
We did.

Dr. Daniel Correa:
... making his way through the music scene?

Audrey Stafford:
We did. So it was fun most of the time.

Dr. Daniel Correa:
And do you have a favorite memory of Jeff's musical career or some of the experiences that you guys had together?

Audrey Stafford:
I guess the most amazing moment... I wasn't there. It was just after he'd gone blind. And it was summer of 2011. And he'd been blind about two weeks. And his manager, Bud, called me, and there were some gigs, and we all decided he should do them, including Jeff. So I took him to the gate at the airport. Bud met him at the gate. And the first gig was a radio gig in New Orleans, and they stumbled about together, figuring it all out.
And then, from there, they went to LA, and there was a big festival called Jazz Fest West. And Jeff played, and he did amazingly well, standing ovations, and then he sat in with his friends, Rick Braun and Richard Elliot. And just so it happened, Stevie Wonder happened to sit in on the same stage.
And afterwards, of course, Jeff was blown away. I've never met Stevie. Of course, he was a huge fan. He got to play with Stevie. His advice to Jeff was, "People don't want to see you down. You got to stay up." And he said, "Show people your abilities, not your disabilities." And those words really did resonate with Jeff. I mean, that was the kind of person he was, but most definitely, it carried him through some difficult moments.

Dr. Daniel Correa:
I can't imagine in those first few weeks... I'm so impressed by just Jeff pushing through and still getting to stage and how impactful it must've been both to meet Stevie and to really get to hear the perspectives from someone who's really been on stage and still practicing their art. Until early on at that stage, he started to get the vision loss. When he had it, was it more one eye or the other? Was it black, or was it just getting gray and patchy? Do you know?

Audrey Stafford:
Yeah, that fall when he was having all the headaches and stuff, yeah, he started getting these flashes of light in his right eye, and it was really weird. And he was having really bad headaches. And he was seeing this neuro-ophthalmologist in New York then, Dr. Cooperman, I think his name was. And out of nowhere, there was no vision in the right eye. And they put him on a month of prednisone to try to save the optic nerve. He said the optic nerve was suddenly dying.
And that didn't do anything after 30 days, and he could not see out of the right eye. It was already affecting the left eye. He was getting these weird flashes. And so it wasn't like when somebody just loses vision in one eye, and you could see, you have to adjust to monovision.
And then it was July 4th weekend. He was again out of town. And he called me, and he's like, "This is really weird." And he said, "I'm having the same thing that I was having with the right eye." And I said, "Well, you should see Kupersmith on Monday." And sure enough, he saw him. Kupersmith said, "No, the eye is fine." Because again, as a doctor, sometimes what you see is what you see, but the patient knows, like, "It's not fine." And he sends him home, and within five days, he was no vision.

Dr. Daniel Correa:
Already, that's a lot changing with his vision, but aside from the vision loss and change, was he having symptoms already with his coordination, his walking, balance, anything else?

Audrey Stafford:
It's funny you asked that because, looking back, of course, hindsights can be 20/20, he started dragging his feet a bit, like shuffling a bit. And I was asking, "Why are you dragging your feet?" things like that. I think it's all neuro-related. He had always had major sleep issues, like from a child. And then he becomes a traveling musician, so that was bad. So he had really bad insomnia. It was the disease starting. And no one knew. Jeff was not at all a complainer or anything like that. So I think he probably... I can't imagine the depth of his fear as to what was really going on that he wasn't telling any of us, you know?

Dr. Daniel Correa:
Yeah, I mean, I think it's always an understanding for when some of the deficits or problems that you're having are coming from areas of the brain that are degenerating or breaking down from an injury like a stroke.

Audrey Stafford:
Right.

Dr. Daniel Correa:
There's always the benefit to encouragement and trying to do more but understanding there can be a limitation because that part of the brain is just injured.

Audrey Stafford:
Yeah. And at this time, everybody thought it was just blindness.

Dr. Daniel Correa:
When was it that someone started to put together that the eye and vision symptoms were coming along with other problems with his movement and coordination?

Audrey Stafford:
So he went fully blind in July 2011. And then he really was doing great. Then we moved back to the City in the summer of 2012. And the first day back, my older son had started school. Jeff got out of bed and went down to the Apple Store. We had to rehook computers, all that stuff. And I was just like, "This is great. We're back in the City."
And for those of you who don't live in New York City, surprisingly, it could be actually a better place for blind people because you really can get around so well on your own, and it gives you a lot of independence you really don't get other places. The subway, you can grab the cab. We were like, "This is what he needs."
And I was very happy that morning that he woke up and he went down to the Apple Store. I saw Jeff had called me five times. He's been hit by a subway train. The psychiatrist believes that was really a major turning point, that Jeff... He had the dog with him, and he had his cane, but Jack was just like, "Especially being blind, you don't just assume the train is there." And they had announced the train was coming, and he assumed there was an open door and walked right in front of an incoming train.

Dr. Daniel Correa:
Balance and falls are often an issue that eventually ends up occurring as a part of progressive supranuclear-

Audrey Stafford:
Oh, yeah.

Dr. Daniel Correa:
... palsy or PSP. Had he had falls already at this point?

Audrey Stafford:
No, the falls had not begun. So that was fall of 2012. He was still doing really well. And then, by January, he just really started shutting down. Walking became very, very slow. And he just didn't communicate much anymore. And when he did, it was very difficult. But was just silent. So it was strange, and it was very fast.

Dr. Daniel Correa:
Was it these new symptoms that were occurring and you guys were noticing that made you seek out more information and more specialists?

Audrey Stafford:
Yes. We had this amazing psychiatrist. Anybody listening, I would just say that was one of the most amazing things, having Dr. Dunietz, because Jeff had known him for so long. And I'd met him once. And then, when Jeff went blind, I started seeing him also. So, throughout the illness, Jack would see me alone and see Jeff alone and then see us together.
And that was really helpful. He could help both of us through the unknown. And he was in with us about the unknown and would always remind us both about how difficult this is to be with some unknown disease. And he was very quick to point out, "There is something going on."
He sent us to another neurologist, I think about that time, up at Columbia. And she spent a long time with Jeff. I was there with him probably, like, two hours. And she came back with... Her diagnosis was, "He's depressed from the blindness and change of life." And Jack was again so quick to say, "This is not depression," which is just so great to have another doctor saying, "It's not depression."

Dr. Daniel Correa:
Amazing to have people and advocates and also physicians who have a good understanding of you over time so they really help and can give a perspective when something like that is unclear. And was it the psychiatrist that helped you guys get connected with a referral to the NIH?

Audrey Stafford:
No. We saw many neurologists over the course of this disease. And I was with a good friend once, and we were in the car. So this is spring 2013 when things had changed. And I was asking my friend what Dr. Daniel McGowan did. For some reason, Jeff and I both thought he was a neurosurgeon. And my friend Laurie said, "No, he's a neurologist."
We walked in to see Daniel May 2013. And as soon as Daniel saw Jeff, the first words out of his mouth were, "Okay, well, there's a frontal lobe disorder happening here," which, again, I think it was helpful that Daniel had known Jeff before. And he is an excellent diagnostician and an excellent neurologist. So then Daniel connected us with the NIH.

Dr. Daniel Correa:
And then, for more contexts, they helped you get connected with the National Institutes of Health or the NIH's Undiagnosed Disease Program?

Audrey Stafford:
Yes. That was amazing. After another year passes, fall 2014, and we were with Dr. McGowan. And he said, "I did have a patient recently who went to the NIH for their undiagnosed disease, and they had good results. Would you like to do that?" And we did. And they were amazing. What an amazing place. And they actually did diagnose him. Usually... We were told that it probably would not be diagnosed. It's a five-day program. We left after three days with a diagnosis because the disease had progressed that much.

Dr. Daniel Correa:
Jeff was starting to internalize more and more and speak less. And you had a sense that he had a lot of fear of what was going on, but of course, you can't necessarily know exactly what he was thinking. Were there activities or things that you felt helped you and Jeff and the kids connect and get the most out of the time that you did have as his symptoms progressed?

Audrey Stafford:
Well, we just kind of kept things as normal as possible. You know what I mean? We're lucky we have a house in Long Island, so we'd be there in the summers. Our apartment had always been kind of the apartment where people hung out and the kids, and they continued to have lots of boys over.
And I have to say, all their friends and the families of the friends were amazingly supportive. And we were not at all hidden away. Life was moving forward, and Jeff was a part of it, and he was there. And it's just like I can't... This is the lemons we've been given, so we're going to make as much lemonade as we can.

Dr. Daniel Correa:
And how are you now, and how do you, Matthew, and Chris celebrate Jeff's memory?

Audrey Stafford:
Well, every night, at dinner, we toast him. We play his music most nights with... Jeff, he was ambiance director in our household, so he always had dinner playlist. He was a big believer dining with music should be jazz and not words because then you're going to have two conversations going. It should be ambiance. So we play his music or one of Jeff's dinner playlist music.
And he died January 1st, 2015. And we have people over every January 1st as long as Covid isn't happening, and we'll have a little toast to Jeff. And it's really nice to get all these old friends of his together. And the kids and me always have some little commemorative thing on his birthday, which is April 15th. So we do a lot.
And since he was great guitar player, there are tons of photos of him, really great photos. So we have lots of photographs and memories and stories and old friends and family. And yeah, he is definitely gone but not forgotten. He's a big presence in all of our lives.

Dr. Daniel Correa:
Well, Audrey, thank you so much for taking the time, sharing your story and Jeff's story and your experiences with PSP. And I look forward to myself also listening to some more of his music, and I'll toast him also tonight.

Audrey Stafford:
Well, do that. Well, thank you, Daniel. It's been great.

Dr. Daniel Correa:
And for our listeners, stay tuned to the next section of our episode. We'll be interviewing an expert on progressive supranuclear palsy and talking about the CurePSP organization. It's a very challenging and complicated condition. It's important we all understand it better.
Is this episode leaving you wanting more? Get the latest tips on healthy living and management for more than 250 neurologic conditions by visiting brainandlife.org, where you can learn more about neurology every day, powered by trusted neurologists.
Welcome back to the Brain & Life podcast. Now, this week, for our medical expert discussion, I have two experts here with me to complement the perspective that we got from Audrey. Firstly, often, the biggest expert in the room is the caregiver themselves. And today, I have here Salin Geevarghese. He's a community care partner for his own mother. He's an Indian American supporting the care of his mother and also supported the care of his father, who lived with the impacts of Alzheimer's disease until he passed in 2018.
And I'm also joined and glad to welcome back Dr. Alex Pantelyat. He's the director of Atypical Parkinsonism Center at Johns Hopkins. You may also remember him from our previous episode on dystonia with musician Billy McLaughlin. He also cares for patients with movement disorders, such as Parkinson's and other related syndromes and other atypical Parkinsonian syndromes, including the dystonia we previously discussed in that past episode.
His research explores our understanding of atypical Parkinsonian disorders, such as dementia with Lewy body and PSP, which we'll be discussing today. Thank you so much, both of you, for taking the time to share with us your understanding and the experiences that you've had with these conditions.

Dr. Alex Pantelyat:
Great to be here. Thanks so much for having me on again.

Salin Geevarghese:
And it's wonderful to be with you. Thank you.

Dr. Daniel Correa:
So, Salin, I wanted to start with you, your own experience and your mother's experience because we know that things are different with every condition in each family. And we got to hear Audrey's perspective. How did your mother's symptoms start, and what do you remember at the beginning?

Salin Geevarghese:
We had gone through a fairly long odyssey with my dad with his Alzheimer's. It was a long progression, and then he passed in 2018. If my memory is right about this, in the last couple of years of my father's life, probably around 2017, '18, my mother, on our daily phone calls, would say, "I'm having difficulty writing my name" with her right hand. And we have lots of physicians in the family. I'm a recovering lawyer myself, and so I'm not one of them, but even among all of us, as kids, we actually said, "There's got to be another explanation for it."
But she was smart, as patients are. And she lived in Chattanooga, Tennessee, still has her home there, started seeking counsel from neurologists there. And they did batteries of tests there. And they couldn't really, as I think is the case for so many folks with corticobasal degeneration... She couldn't get a real finger on exactly what it was.
And so those hand symptoms seemed to last for a while. She ultimately got the first diagnosis, but I think it was in the summer of 2020 when the first diagnosis of CBD happened. Again, she's in Chattanooga. She got that from a neurologist and a specialist in Vanderbilt. And as Dr. Pantelyat knows, the diagnosis came accurately. It was delivered brutally to her and the family.
And after having buried my father and realizing that another neurological or neurodegenerative condition was coming upon us, it was a very, very tough summer. And my wife, who's a physician in the Baltimore area, through a number of connections, was able to find Dr. Pantelyat. And while the diagnosis was confirmed, the journey with him was very different. It matters significantly, as you can imagine, what those interactions are like. So we got the confirmation of the CBD and have been in that journey since that time.

Dr. Daniel Correa:
It's such a challenge, I think, to approach these different conditions, have a better understanding of them and especially when it's conditions like these categories that are such a challenging diagnosis, and then to receive the delivery of the news about the progressive process.
So I wanted, then, to get to you, Alex. We've heard from Audrey and from Salin even just the difficulty and the challenge of not just finding the diagnoses but understanding them. So what is PSP? And we've also mentioned the abbreviation CBD. What are these conditions, and how do they overlap?

Dr. Alex Pantelyat:
PSP stands for progressive supranuclear palsy. This is a neurodegenerative condition that affects specific areas of the brain over time and, unfortunately, progresses relentlessly and is associated with tremendous loss of quality of life and morbidity over time. PSP and corticobasal degeneration span what I call a clinical pathological spectrum because they share many of the same clinical features that overlap in a given patient, and they also share a number of pathological features.
The hallmark for definitive diagnosis, gold standard diagnosis of both PSP and corticobasal degeneration, CBD, are accumulations of the tau protein, four-repeat tau it's called specifically, in various brain regions. And the specific brain regions where the tau protein accumulates determine the onset and type and progression of symptoms that occur over time.
So, in PSP, the hallmark that we typically think about, that we teach our neurology residents about are early loss of balance leading to falls, often the falls occur backward, and difficulty with vertical eye movements. So that could translate into double vision at times. Often, it's something that's subtle and can only be detected by careful examination in the clinic using optokinetic nystagmus, OKN, assessment, for instance.
But in CBD, you heard the challenge described about difficulties with writing. There is visuospatial dysfunction that plays into that. And the reason for that is that the parietal lobes tend to be disproportionately affected with tau pathology in most patients with CBD, and that leads to often asymmetric impairment in the use of utensils, including dining utensils, a pen, as we heard described, other tools as well.
Also, the visuospatial dysfunction affects driving. And over time, it can affect other daily functions, just being able to orient in space appropriately. Now, both PSP and CBD share many features. Among them is difficulty with walking and balance and the risk of falls.

Dr. Daniel Correa:
Audrey also described that Jeff himself had some asymmetry and more symptoms in one side than the other. Salin's mother had that at the start. Some of those are symptoms that sometimes even are described in people with Parkinson's. And you mentioned the tau protein, which I think a lot more people are used to now hearing about that protein, and they hear about it with Parkinson's. Why are these symptoms that Jeff had and Salin's mother had at the beginning not Parkinson's, and how is it different?

Dr. Alex Pantelyat:
Fundamentally, when we're talking about the pathophysiological distinction between Parkinson's disease and PSP and CBD, it's the point in Parkinson's disease, the protein that's building up and clumping is α-Synuclein, not tau. So, biochemically, it's different. And now we do have ways of distinguishing between these proteins in living patients, a very exciting development in the field of Parkinson's disease and related disorders research.
So research in PSP and CBD is a bit behind that of Parkinson's disease research, but very similar approaches are being used to detect it as early as possible and accurately diagnose PSP and CBD in living people using spinal fluid analysis, brain imaging, MRI, analysis, to give just a couple examples, in order to try to get to an accurate diagnosis as soon as possible, both in terms of counseling a patient and their family appropriately about what's to come, about prognosis, but just as importantly, if not more importantly, enrolling people into the clinical trials that are rapidly coming down the pike for the tauopathies.
That's another term to think about. We call it the four-repeat tauopathy spectrum or four-repeat tauopathies. They include PSP and CBD. So, because of the clinical symptom and exam finding overlap and the pathological overlap, it makes sense to think of them on a spectrum.

Dr. Daniel Correa:
Salin mentioned that the delivery of this information and the news sometimes can be so devastating, and it's even so nuanced on how it's given. I'm wondering, from each of your perspectives... Alex, how can we improve and change the delivery of this information to the individual and to the family? And Salin, thinking back, what would you want to hear appropriately? Because it has to be true, informational, and also realistic in what we have available at the time.

Dr. Alex Pantelyat:
It really comes down to striking the right balance, as you mentioned, Daniel. Perhaps I have a little bit of a biased perspective because my career is dedicated to clinical research as well as clinical care of patients suffering from PSP and CBD. And so, I'm fortunate to be in a position to be aware of the clinical trials that are coming down the pike that perhaps have not been publicly made available.
And so, knowing what I know, I think this is the most exciting time in tauopathy research that we've ever had for multiple reasons, the clinical trials being really the number one reason for it. And so, knowing that, I think it informs my measured optimism when I break the news of a diagnosis and when I counsel patients and families.
But just to kind of connect your question to the one you asked before, "How is this different from Parkinson's disease?" in my clinic, since I see mostly patients with some variance of the Parkinsonian disorders, I say, "The best diagnosis I could give you, the best news I could give you in my clinic is that you have Parkinson's disease. Everything else that we're going to be dealing with generally has a worse prognosis because there are fewer treatment options for the symptoms that are available and because these are diseases that progress more quickly and really impact longevity to a much greater extent than does Parkinson's disease."
Our largest study to date about five years ago looking at Medicare beneficiaries showed that Parkinson's disease itself shortens lifespan by probably about nine months on average. There's a lot of misconception around that. Whereas the diseases we're talking about today, PSP and CBD, shorten lifespan to a much more significant degree, the average survival in PSP being seven to eight years and a similar survival, unfortunately, in CBD.

Salin Geevarghese:
I mentioned to you just in terms of our family and the kind of blessing of family life, I'm flanked in every direction by physicians. So when that first diagnosis actually happened, the physicians themselves... None of them were neurologists. And so, all of them, if memory strikes, me when the first diagnosis happened, actually, including my wife, had to look it up and try to really understand exactly, "What does this mean?"
And so, in addition to the shock of the delivery... And I'll just be very specific about it. Probably, in my circumstance, part of what I know my mother wanted to understand early was... Again, upon the framework of my father passing in 2018, it was essentially like, "How long do I have?"
One thing that I should say is that we all have to remember this is during Covid. And so, even when Dr. Pantelyat and our family are first interacting, it's all virtual. Extensive, but still virtual. So you're still managing through Covid, managing a new diagnosis delivered during Covid. And I think it was brutally delivered in terms of life expectancy.
And when my wife found Dr. Pantelyat, as you can imagine, I think we were hopeful that it was something else. And when it was confirmed, and Dr. Pantelyat may do this with all of his patients, he definitely did it with us, my mom asked him the same question, like, "What's my prognosis?" And as he knows, because I think I've repeated it publicly several times, the response was exactly the response my mother and we needed to hear. And that was, "Well, it depends on how hopeful you are."
Now, my mom was prone to being down, given my father and other circumstances in her own life. And so, while that was wonderful at some level to hear, it doesn't change the underlying information that he was conveying, but what it did do was it put front and center for her the battle of hope and trying to find a way to keep persisting and fighting.

Dr. Daniel Correa:
And, Alex, what has changed or built off of what we've learned from family members, caregivers, and patients about the resources and adaptations to their care as we've learned more and more from their perspectives of what it is to live with these conditions?

Dr. Alex Pantelyat:
Well, Daniel, I think the key to mention in response to your question is the fact that there is US-based organization formerly in Timonium, in our backyard in Baltimore, and now in New York City called CurePSP. And they are dedicated in their mission to improving the lives of patients and family members of those suffering from PSP, CBD, and another atypical Parkinsonian disorder we haven't mentioned called multiple system atrophy, MSA.
So there is, virtually speaking, a home for patients and families suffering from these conditions. When they go to the website, they discover there is a calendar that people can access right now showing the various support groups for patients, for adult children, for care partners, and now grandchildren of those who are suffering from PSP, CBD, and MSA.
Because the emotional aspect of the journey, again, is all too often ignored. And these support groups provide an outlet and a way to share information with other members of the village who are trying to do all they can to help their loved one with this disease.
CurePSP has sponsored around 30 centers of care around the US dedicated to the care of patients with PSP, CBD, and MSA. And so, there are additional resources beyond the central ones that CurePSP curates that are available through a center.
So we have several of our own support groups for atypical Parkinson's. For example, we do music therapy for patients with PSP, CBD, and MSA, just to name a few examples at our center. But there are unique opportunities and resources available at different centers of care, sponsored by CurePSP throughout the United States. So we have a long way to go, but this has definitely been an important step in the right direction over the last six, seven years.

Dr. Daniel Correa:
And we'll include links to the CurePSP organization and the informational resources about these medical conditions and that they have on their website in our show notes. And I encourage anyone who wants to learn more about that other condition, MSA, or multiple system atrophy, to please check out that website.

Salin Geevarghese:
I hope, and for both of you who were in this field of neurology, that those initial moments of coming to understand, "What am I dealing with?" that, increasingly, the profession gets better at managing them. We were very fortunate. There are lots of folks, and Dr. Pantelyat knows this, and you know this as well, Daniel, that share more of an odyssey of diagnoses and misdiagnoses for numbers of years. That, honestly, was not part of our story.
So I'm sure there will be listeners who may have that aspect of the odyssey. In fact, we were talking about support groups and things that were enabled. That, again, was a part of our initial conversations was the entreaty to us, to my mother, right, "You don't have to be hopeful. You don't have to fight alone," right? "There are other people who are facing this."
And as Alex knows, it was materially significant in a very specific way for my mom because it was through a support group, a music support group, that in her first number of months, what she had to deal with was incredibly disabling pain that she had to deal with that Dr. Pantelyat was helping to manage. And he had made the recommendation of a therapy called scrambler therapy.
And while my mom heard about scrambler therapy initially that I think for cancer patients and others was getting used, she was among the first people to receive it with someone who has CBD. And it was the encouragement of another support group member who may have been the first person to receive it, to say to my mom, "Grace," her first name, "Grace, stick with it. It took me 10 sessions of scrambler therapy fairly consecutively for seemingly the light switch to go off."
And I'll tell you, Daniel, for a quality of life perspective, important for me to remember that the first part of her journey was managing her pain. And for her, the light switch did go off. And as we talk about pain management, we don't have a pain management. We have other things that we're managing through, and thank God for other things that helped us discover the utility of scrambler therapy.
But for those who may think... And my mom was not one... She had never participated in a support group before. In the rewind, it was several stages. Alex mentioned before falls. There have been a number of falls, and they are very scary. They are scary for a household. And we've been incredibly blessed that, with rare exceptions, she has not had head injuries in those falls.
I'd leave you with this kind of... To this question. Interesting moment that Alex and I talked about, even in our last visit, which is as the falls started to increase, the question of whether my mom should not get on her feet, not move actually came up. And for caregivers who assist us, we have this day-to-day experience of, "As you can not use your limbs nearly as much, should you stop moving?"
And I was resolved through Alex's encouragement to say... In fact, I said it to my mom this morning, "Let's find a way to get on your feet. Let's find a way to keep moving," as difficult as it is for her now. She cannot walk without assistance now when she was walking six miles a day years ago. So devastating losses, but still, this notion of, "Yes, there's a risk for fall. It might trigger you to stay stationary, but find ways to kind of keep moving."

Dr. Alex Pantelyat:
It's really a central concept that we talk about. If you don't use it, you lose it. That's true really for everyone. We get older. But it's true really, to an exponential degree, in patients who are suffering from these neurodegenerative conditions like CBD and PSP because that aging, if you will, is taking place at an accelerated rate. So, truly, if you don't use it, you lose it. It goes for your muscles, and it goes for the brain as well.

Dr. Daniel Correa:
Something we see really in almost every condition, at least related particularly to neurology, that we need to keep using these networks of our brain, but it just seems to be further amplified in this kind of movement disorder. Thank you, Salin and Alex, so much for taking the time here to share with us your experiences, the perspectives that each of you have and your time. Salin, I'm just wondering if you would leave us with your thoughts on hope for the community.

Salin Geevarghese:
I hope that as a community you are blessed to come across people who start their response when you're in the pathway of a devastating diagnosis the way that Alex did with us. I can't repeat it often enough. It was the message that we needed to hear at the right moment, which was, "It depends on how hopeful you are." And there is just a lot about this journey that attacks your sense of hope. I'll take my cue from Alex, who gave it to us a number of years ago. It depends upon how hopeful you are. We're making a decision daily to stay hopeful.

Dr. Daniel Correa:
Thank you, both.

Dr. Alex Pantelyat:
Thanks so much for having me, really. It's a pleasure.

Salin Geevarghese:
Wonderful. Thank you, Daniel.

Dr. Daniel Correa:
Thank you again for joining us today on the Brain & Life podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life magazine for free at brainandlife.org and even get the Español version.
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