To listen to the recording of this conversation, click here. The full transcript is below.
MUBINA: I went to a PSP support group, out in the middle of nowhere in New Jersey when I first found out my mom had this. There was only one other participant in the support group, and that person was there because they thought the meeting was about PSP — the Play Station.
That was my first experience with people not understanding what PSP is. I mean, even amongst my interactions with medical staff — they’re very not familiar with what it is. I’ve had doctors actually google it in front of me.
JOSÉ: This conversation was produced by AllStripes, the leading research platform designed specifically for rare diseases. It’s part of our content series spotlighting stories from the rare community.
MUBINA: My name is Mubina Khan Schroeder. I am a born-and-raised New Yorker and I live in New York City currently.
SYLVIA: My name is Sylvia Rupani-Smith. I live in Brooklyn.
JOSÉ: Mubina and Sylvia met because of their mothers, who were both diagnosed with progressive supranuclear palsy and eventually passed away from complications of the disease. This past summer, they spoke with AllStripes about their experiences.
Sylvia and Mubina told us that because PSP is rare, their families’ experiences were isolating at times — and that they would have felt even more lost without each other. They describe how their relationship began with a clipboard and the New York Times, what it was like to watch their very independent mothers change and share advice for people caring for loved ones with progressive diseases like PSP.
MUBINA: I try to explain it in terms of its symptoms. I call it a brain disease and I describe it in terms of how debilitating it is and how it’s progressive. Progressive is in fact a part of its name — progressive supranuclear palsy. And unfortunately, it progresses to the point where the patient passes away. Oftentimes people don’t understand what the disease looks like.
JOSÉ: Like Mubina says, PSP is a brain disease. It’s a rare degenerative neurological condition that, at first, primarily affects balance and eye movement. As PSP progresses, it can also affect eating and swallowing, speech, cognitive ability and mood. The onset of symptoms usually happens around age 60, but can sometimes begin earlier. Mubina’s mother began to show symptoms when she was in her mid-60s.
MUBINA: My mother, her name was Shahjahan, she was named after the king who built the Taj Mahal. And apparently she gave herself that name because she liked it so much. She was my best friend — so I knew her very well. I’m her only child and we were exceptionally close.
In 2006, I started noticing some slight behavior changes. She became a backseat driver. She would always be driving with me and would start saying like, you shouldn’t go here. You should go here. It was very out of character for her.
She went to visit this herbal doctor and gave him $30,000, which was something that she would never have done. She used to be an educator in the New York City public school system. She was a math expert — you know, so it was very odd that she did something like that. I found a diary entry from her, around 2007, and all it says is, Things are changing.
JOSÉ: It took more than seven years and 19 different doctors and neurologists before Shahjahan was diagnosed with PSP. Like Mubina, Sylvia was very close with her mother, Betty. In 2011 Betty started falling without much explanation. Her PSP diagnosis came about two years later.
SYLVIA: My mother was diagnosed in 2013 at Beth Israel Hospital by a Dr. Rivka Sachdev, who was able to see her symptoms right away as PSP. Prior to that, my mom, she was very independent. She actually lived most of her life in Japan, she met my father there, and she would bicycle everywhere and, you know, do all kinds of things by herself. But we noticed from time to time that she had a tendency to fall, and then they just started to progress a little, in terms of the falling. We were very worried because we just didn’t know how often she would end up falling.
Like Mubina’s mom, she refused to believe this was happening to her. She was such an independent person, not needing anyone’s help, took care of five children on her own. She just couldn’t believe it.
MUBINA: Shortly after I learned that my mom had PSP, the CurePSP Foundation, which is a pretty incredible foundation in terms of the research that they fund and the resources that they offer to families affected by PSP. They have an annual conference, and it happened to be in New York, in Queens of all places. And I was like, oh my gosh, this annual conference is in a few days. And it’s only two minutes away from my house.
On one of the days, there were presentations by scientists on, you know, research with PSP. And I thought, you know what? This is really great, but I’d love to network with other people who are dealing with PSP.
So I got out this little clipboard and I wrote on it. Hi, my mom has PSP. I’d love to meet people who also are affected by PSP and be friends with them. Please put your name and contact information on here if you’re interested in keeping in touch. And I started passing it around and the first person I passed it to was this young lady who was sitting to my left at a table by herself. And I said, oh, she looks friendly. And that was Sylvia.
SYLVIA: It was quite a large room full of people. So I was a little astonished to be honest that all these people were curious to know about PSP or had some relationship to it, honestly. I was really relieved that Mubina had provided me her contact information so that we could talk to each other.
MUBINA: She wrote her name down and a few weeks later she contacted me. I was actually in the hospital with my mother when she contacted me. And she told me she was writing an article for the New York Times about PSP and that her mother too also had PSP. It was such an emotional conversation that I think that just forged this bond between us that’s continued to this day.
SYLVIA: Once we formed this bond we pretty much were each other’s lifelines. Honestly, I don’t know how I could have survived this whole thing without Mubina. I really needed someone who really understood what we were going through.
MUBINA: Having someone that you can just text and say, this is a bad day, it was really, really wonderful.
JOSÉ: Sylvia quoted Mubina in her article for the New York Times, which is called “The Falls Were Bad. The Diagnosis Was Worse.” And the two kept in touch, texting and calling each other more frequently as their mothers’ conditions progressed.
MUBINA: Most of the things were tragic, but sometimes things were funny.
Sylvia, I think I called you when I was in Bellevue Hospital once. I was always putting on TV for my mom because she couldn’t do much else than watch television at some point.
MUBINA: And she would complain to me about the shows that I was picking for her. And she said something to me about how I thought that she wasn’t smart enough to watch the shows that she liked. And it was just — it was funny because I was picking childlike shows for her to watch.
SYLVIA: I think what was really helpful to us both was you know, we were in it together. I feel like I might’ve alluded more than once to just wanting to escape the whole thing. And there was some humor in that too, because we all knew we couldn’t run away from what we were dealing with. But it felt kind of like the one relief we had was even the slight prospect of leaving it all behind. I felt like that was helpful. There was some beautifulness in that.
JOSÉ: Both Mubina and Sylvia told us that they continued to see flashes of personality throughout their mothers’ illness, even toward the end.
My sister, Saya, who was taking care of my mom, was attempting a yoga pose in front of my mom. And my mom couldn’t move very much, but she found a way to actually use her leg to kick my sister as a means of like, “Hey, I’m still here. I still have a sense of humor and I’m going to totally mess with your balance right now.” And she shared that at the eulogy. And I was like, “Oh, that’s, that’s my mom. That’s the mom I know and love who was probably the naughtiest person in her high school.”
JOSÉ: In 2018, Shahjahan passed away from complications of PSP, followed by Betty’s passing one year later. We asked Sylvia and Mubina what advice they had for anyone with a loved one currently facing a PSP diagnosis.
MUBINA: You know, doctors, nurses, hospitals, they didn’t really know what to do with my mom. They couldn’t really tell me what to predict. (This was where I found Facebook support groups to be super helpful.) To people who might be dealing with this, I would say, first of all, you should really get all of your logistical stuff in order. Talk to the patient while they’re still able to verbalize and communicate their wishes.
For example, we talked to my mother and she said she did not want a feeding tube. I explained to her what it was and the doctor explained it to her, because this was actually at a doctor’s visit. And she adamantly said, “No, I don’t want that.” So that was important for me. Because when it got to that point, I was thinking about giving her a feeding tube. But I remembered that she was very adamant that she didn’t want that intervention.
SYLVIA: For those who caregive, it’s so overwhelming. You really have to adhere to the caregiver’s mantra. It’s one day at a time it’s one hour, it’s one minute, find that peace. And I guess, especially because it is someone you love, you have to remember what you’re doing this for, but you know, in the long haul, you still have to take care of yourself.
MUBINA: One thing I wanted to mention to people who are dealing with patients or loved ones with these sort of devastating illnesses, is to always remind yourself to respect the patient and to love them. Because for example, my mom couldn’t communicate, sometimes I would assume that she wasn’t there, that she was gone, but then I would have reminders that she still understood everything.
I remember we were in a doctor’s office once and he was talking about how she would probably have pneumonia and that might be the way that she passes away. And my mom started actually tearing up. She couldn’t speak, but tears started rolling down her face. So she understood everything.
You know, so just — when you’re caregiving it’s often easy to get caught up in all of the caregiving things that you’re doing. But to remember that you’re still dealing with a loved one who’s very much human, who might very much need talking to, or just even handholding or attention to their feelings. It’s hard to remember that. And I hope that people do remember that because it’s so crucial.
SYLVIA: Yeah, that’s so essential. I agree, you’re so right. I mean, that’s the thing about PSP: they could understand everything, they just couldn’t do anything about it. So I think that is really the most essential thing is to make sure that you’re doing what your mom or your patient wants and doing what is best for them.
JOSÉ: You can learn more about AllStripes by visiting allstripes.com. This conversation was edited and narrated by me, José Vadi, and produced by Sylvia Rupani-Smith, Mubina Khan Schroeder and Jen Gann. It’s dedicated to the memory of two very independent women: Betty and Shahjahan.
AllStripes’ research programs are open to legally eligible families who want to contribute the medical history of a loved one who has passed away. Contributing records on behalf of a loved one who has passed away can create a meaningful legacy and provide valuable information to improve the lives of patients and their families for generations to come.