Femammal
Femammal
Living with Parkinson's Disease
Holly Cooper is mother to two young men, and wife to a man she considers to be a saint. She loves to be outside, especially gardening, and finds the outdoors therapeutic. She has survived breast cancer, and now she has been battling Parkinson's Disease. While Parkinson's Disease is half as prevalent in women than men, women often experience a more rapid escalation in symptoms and a higher fatality rate from Parkinson's. In this episode, Holly shares the interventions that have most improved her quality of life, especially boxing practice and deep brain stimulation. She takes a resilient attitude of hope and persistence to her diagnosis and has found meaning in connecting with other Parkinson's patients, especially through boxing.
She shares this resource from Norton Healthcare:
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[00:17] Greer:
Hi, this is Greer, your host for Femammal, the podcast that holds space for women to explore what it means to live well in our bodies and celebrates moving through this world as female mammals. Today's guest is Holly Cooper. Holly is mother to two young men and wife to a man she considers to be a saint. She loves to be outside, especially gardening, and finds the outdoors therapeutic. She has survived breast cancer, and now she has been battling Parkinson's disease for the past eight years. While Parkinson's disease is half as prevalent in women than men, women often experience a more rapid escalation in symptoms and a higher fatality rate from Parkinson's. In this episode, Holly shares the interventions that have most improved her quality of life, especially boxing practice and deep brain stimulation. She takes a resilient attitude of hope and persistence to her diagnosis and has found meaning in connecting with other Parkinson's patients, especially through boxing. Welcome, Holly. You have offered to share about your experience with Parkinson's disease today. Could you start by explaining what Parkinson's disease is for those of us who aren't familiar?
[01:46] Holly:
Sure can. Parkinson's is a progressive neurodegenerative disorder with no cure. But for those symptoms, there are good treatments. There's, I think, 24 different drugs, every kind of movement programs and activities to get you physically up off the sofa. But above all, it takes a lot of positivity. Just don't go home and be a gloomy Eeyore. You need to get up and move, but cut yourself some slack, because there will be days when I just want to sit around and something hurts, I can't move. Yeah, you really can't go full bore seven days a week. I've tried that. Your body does need a break. After all, I am 64. Robin likes to tease me. You can't blame it all on Parkinson's.
[02:52] Greer:
I imagine, because it's neurodegenerative, people might experience very different symptoms depending on the person.
[02:59] Holly:
Oh, you meet five patients, you've met five patients. You're right, Greer. So many different symptoms and many ways it could be described like an iceberg. The tip is what we all believe. Ali had a soft voice. Michael J. Fox, you witnessed more dyskinesias, just slowness, but below the waterline. There's such a list, and I wasn't going to go in all to the laundry list for your listeners, just something to look up later on. And when I got the big fat book, the New Treatments for Parkinson's, fairly recently published, it's a couple of inches thick, and you look at the index and thumbing through it, you think, oh, no, I have to have that, too? No, so much of it, it's one of those things you don't want to read too far ahead. If you're experiencing sleep disturbances, just look at that chapter. Don't go beyond. There's just too much, because we won't experience everything.
[04:13] Greer:
Yeah, that sounds like really good advice. Could you share what your path was to getting diagnosed with Parkinson's was?
[04:20] Holly:
Oh, of course. Yeah. I was very busy, of course. Just had my breast cancer surgeries five years prior. I've had the drugs, post op surgical drugs for the cancer to get all the estrogen out of me and then it was really full time job, it seemed, helping my aging mother with her frontal temporal dementia. So it was in the course of taking her to all of her doctors, one dismissed Robin to take mom into the waiting room and he needed to talk to me. Well, I thought he was going to tell me something tragic about mom. No, he just said, "I hope I'm not overstepping my boundaries, but I've noticed when you bring your mother in, you have a thumb tremor, your right thumb just tremors. And that's possibly a sign of Parkinson's. My father has it. I'm on the board of our local chapter. You might want to be screened." I thought what? I really laughed. I just thought, that's ridiculous. I'm in so deep. The cancer, mom. I don't have time for something like that. So he just cautioned me that I should and gave me the name of an office. Well, eventually, eventually nine months later, I had that appointment for the screening. Well, it was pretty comical. Of course, in the back of our minds we're thinking, could it be? And that little tremor was with me the whole nine months leading up to the big reveal. But this doctor, she didn't do much of an exam that I thought. She merely had me walk across her office floor, say to the bookshelf, back to the chair across her desk. I sat. She came over, flexed each arm, left one, right one, checked my reflexes with a little rubber hammer, wiggle wiggle my wrists, and went over to her office chair and sat and flatly states, with no inflection much at all, "it's come to my attention that you have Parkinson's." I'm telling you, my eyes just welled up. I couldn't control it. She goes on, "at 55, you are too young to take the gold standard of carbidopa levodopa, and it's just too much too soon. And it brings on the jerky movements called dyskinesias. So I'm not going to give you that. Here's a big old bag, a sample of some. I think it was Azilect. It's something to help what dopamine you have left be transmitted." It's just like an agonist. I can't remember the proper term for that type of drug. "And on your way out, talk to the clerk. She'll make you an appointment for you at Kort Rehab." But the whole while I'm sitting there listening to it, my eyes are welled up and I'm not sobbing--this is what she did--she picked up a pen or pencil at the desk and with the back end of it eraser backward, just slowly pushed towards me a tissue box for me to reach. It was just such an absurd thing. It was no comfort to me at all. That was it. The end. So reflecting on that gloomy ride home, my eyes dried up and logic popped in. Puzzle pieces pretty much were falling into place. That unexplained cloud of depression. I'd had PD, plus the right half of my body had slowed, which was evident in the area of my shoes. When I got home, I looked at my boots, in my shoes, and the right one was, I guess I've been dragging a zombie leg. And all these I was blaming the post cancer, the side effects from all those drugs that I was taking for five years, post op therapy. So that was it. Just that one day my eyes welled up, and that's it. Let's go get them. So I followed up with that Kort Rehab appointment that this doctor--oh, before that, I read the liner notes for the drug and decided right away, I am not taking this. It was one that mom had used, and it made her psychotic. I thought, oh, I don't want this either. I read too much. Just thought, not now, not yet. I'm not ready. I need more answers. I have questions. So I went to Kort and filled out all the sheets on the clipboard, all my physical histories, but no pain. "Where's your pain? Where's the outline of the body circle where the pain is?" I had no pain. So I had previously obeyed my breast cancer surgeon, the mastectomy. I had PT years earlier. I did all of that. That pain was pretty much gone. So the attending Kort therapist, who was so sweet, he put me through motions, just making sure I wasn't making something up. And he says, well, there really isn't anything we can do for you here. And I thought what? You have a customer here, and you can't sell me anything? He went on to say, well, you should go to Cressman. It's a Parkinson's therapy center. And he pointed across the plaza over to the Norton Hospital Brownsboro. Sorry, I'm just incredulous. I'm like, what do I do now? I've been delivered this diagnosis. Who's going to help me? Well, before I left the Kort office, their receptionist called over to Cressman and told them that they had someone that might benefit from the therapy that they offered. They said, well, there's a waitlist, but we'll give her a call. I think I was in probably ten days later getting my baseline assessment with the OT, PT, and eventually speech therapy. But at this point, all I was exhibiting was a little thumb tremor, so I was feeling pretty invincible. I'm not your typical patient. I don't look like the people that I see in the waiting room. Not me. Not me. Not me. Well, I grew to trust these young people. They just had all the answers so far without being a neurologist. They'd seen people come and go through those doors at the therapy with Parkinson's patients. So they told me what to watch for. I wasn't exhibiting all these, they showed me exercises and things to look out for. And this is where I heard of the Norton practice of neurology, of their doctors. So that's when I jumped ship, I left that first one after I went back and gave her her little paper sack of drugs, which she said, "I cannot take these back." I said, whatever, threw them away. She didn't seem to be so broken up about me telling her, I'm going to Dr. Phillips with the Norton practice. So that was that. Still, you must listen, I guess, to your own gut feelings. I just did not feel any compatibility towards that first doctor.
[12:26] Greer:
I was really struck when you started telling the story of your diagnosis, because I started getting chills when you described that first practitioner who was actually caring for your mother. And he just sounded like he had such an amazing bedside manner and just kind of the right person in the right place at the right time for you. And you were experiencing something that a lot of women do, which is when we're wrapped up with caregiving for other people, we put our own health second. Yes, just what a magical kind of thing to connect with him. But then it sounds like that the person who officially diagnosed you really had a terrible bedside manner and didn't connect with you or your needs at all.
[13:12] Holly:
Oh, I had a time. He gave me the number and the name of a very specific, I think it was the head of the practice. Well, he wasn't my doctor. I just did not fit in any legit category for the office people. I just couldn't break through to get anyone's ear. And I thought, well, I don't really need this anyway. This is just I'm following through. Like, he was so nice and I do see him out and about. And I've told him this story over and over how grateful I am that he did point that out. Because early detection, like any cancer, the earlier you're aware the enemy is there, you can start piling up your snowballs, getting your war chest ready. So basically, when you're ready, go for it. So that's what I guess the attitude that I took once I got that dreadful news delivered just kind of had that day a weepy and then snapped out of it almost like that. When I had the breast cancer, I was 50. It was just days before my 50th birthday. That's another whole drama in itself. But I have no regrets over the double mastectomy. I opted to have my left one done as well as the right. And no more mammograms for me. No bra straps, no regrets. So five years later, I did everything those oncologists wanted. And then this. Give me a break. And mom, still she has a whole different thing going on too. So I had, again, a village. My team was helping me carry Mom, Robin's great, my sister, my family can't say enough good things about them.
[15:15] Greer:
Sounds like you've been through a lot, but you're also surrounded by a lot of people in your corner. Although I'm troubled by the number of practitioners who didn't seem interested in your case of Parkinson's. Maybe it wasn't dramatic enough for them yet, but in my preparation for this interview, I learned that while Parkinson's is half as prevalent in women as men, women are actually much more likely to experience a faster progression of symptoms. And I'm wondering, how has being a woman and maybe some part of that experience affected your experience of getting health care for Parkinson's?
[15:56] Holly:
Well, when I found the boxing classes, well, first Cressman, they helped me, and I think it was just months when I just finished that I found out about Rock Steady Boxing. Loved it, love it, loved it. That first day, you could not wipe the smile off my face. And they told me, I'll back up. I had to be screened to make sure that this particular class was a very hard cardio. So back at that time, gosh, six, seven, eight years, seven years ago maybe. I had to be screened by physical therapist. Did that, passed muster there at the gym. So she said, yes, I can clear you for this exercise and activity. So I think it may have been a couple of weeks before I actually jumped in, but I did call, I remember calling the head of the gym and asking her a couple of questions. Sweaty people, gym, are there any women? And I think there were a couple, but they were on vacation or helping out with family. I think it was around Thanksgiving time. So I ended up beginning the class and being the only female there and about a dozen or so fellas, but never did that matter at all. The very first session, the other woman was away, I think about two weeks. So that was just me and the guys three times a week, 90 minutes each of the visits. So I found the group to be so full of fun, seriously competitive at times, but the camaraderie just totally overshowered your gender. In Abdul's classes, we all just become youthful and silly. We're unrestricted by social norms for the over 50-year-olds in mixed company, we're just fighting the same adversary. Does that answer your question about women? I just don't really see gender in our fight. But being taken seriously is something you just have to keep at it if you think something's not right.
[18:28] Greer:
And it sounds like you did find a practice that did take you seriously, even though you weren't having really dramatic symptoms right away. So when you connected with that practice that took you seriously despite your symptoms being pretty low key at the time, what interventions did they recommend and how have they helped with your symptoms?
[18:47] Holly:
Oh, so many. The PT did this, the OT did that, oh, gosh. I call them parlor games. They're just so funny. Are you familiar with the Bosu ball? It's a rubber ball. One half is flat, sits firmly on the floor, and the other half is spongy. So you stand on that and try to get your balance. So I remember that that's pretty difficult for anyone over 30, but someone with Parkinson's! So you're standing there trying to balance, and then the therapist starts throwing very light, airy cloth, like napkins or tissues. They're very floaty, and he gets farther and farther away, and I'm reaching out to try to catch them, but not falling off the ball. That was one of the trickiest. Another one. They're testing your cognitive skills too, which are counting backwards by seven, starting at 90 or something. And at the same time, when you catch the ball, I'm going to throw and let bounce once, then you recite your number and we're going to subtract. And it's just back and forth, doing a physical task and thinking, and that is so difficult. I was in a symposium just Saturday, and Dr. Foley had the best analogy of information and cognitive difficulties for a Parkinson's patient is like, the information is on the shelf in the library, and you're at the desk, and you want the librarian to go get that off the shelf and bring it to you. And they turn to go get it, and they wander off drunk or something. You remember, you know it's there. It's just difficult to recall it. I don't think I told that as well as he did, but in somebody who has Alzheimer's, they'd say, what's a library? Kind of like, I've lost my keys. Where did I put them? You know they're somewhere. Or someone who's very a hard case of dementia would say--I'm using Alzheimer's--they would say, what is a key? I don't know what it is and what it's for. But I digress.
[21:21] Greer:
Those are some helpful analogies. And it sounds like through this whole process, you've made some really good decisions for yourself around your values, which different treatment options you wanted to pursue. It sounded like there were lots of different ways to go about it, and you could really address a lot of different things simultaneously. You talked about declining that medication that you were initially offered.
[21:48] Holly:
Oh, I did that probably almost two years or a year-and-a-half. And then when I got into immediately, pretty immediately from Cressman, then I went to Dr. Phillips, and boy, he always took the time I needed, always answered all of my questions. They were marvelous. Plus my family. So I did say no to the drugs initially. About a year and a half later, when I was at the gym, my hula hooping just wasn't, I could do just five laps around my waist and it would just drop. So I went in and said, okay, I'll begin drug therapy. And one of my therapists, I think it was the occupational therapist, said a year earlier, she was commenting on how well I was doing. "Are you on drugs?" I said no, I'm not, defiantly. "You will." And I thought, how dare you? Well, I really like you, but I don't like what you said, because after coming out of the cancer and the drug, I was still blaming the drugs for my overall malaise. But it was Parkinson's, because I didn't know yet the spectrum of things that come under that umbrella. So I tried a couple of the drugs, allegedly some things that are supposed to help extend what little dopamine is still being made and transmitted. But I think, let me back up and say what I have heard over and over, that by the time you exhibit that tremor or something sends you to be diagnosed or screened, you've already lost 70% of the dopamine making ability in your brain, and it's degenerative. I think we made that point. I bet it was not a whole year that I went through those drugs and couldn't feel any difference. And then finally, Dr. Phillips, about the same appointment that I decided I should try it, he handed me some copies of a trial or some graphs about the new report says that you don't become more dyskinetic faster by taking the drugs. It's the progression of Parkinson's that has you taking more drugs. It's not one, it's this looking at it kind of upside down. I said, okay. I'm at that point. I want to see some improvement. So he put me on the standard dose of 25 milligrams carbidopa, 100 Levodopa. That's how the tablets come. And the trade name is Sinemet. S-I-N-E-M-E-T. That's that gold standard. So three times a day. It was so subtle. I didn't have any crazy side effects like the cancer drugs always gave me some feeling like I was underwater. And I knew when my, no, it was so subtle. So all of a sudden, I could hula hoop all day long, walk across the room, get on my knees. I could do all kinds of motion. I just didn't realize that it had eased my stiffness just enough to make me feel human again.
[25:24] Greer:
That's really good to hear.
[25:25] Holly:
So that worked for I'm trying to think, a couple of years, because then it was four times a day, five times a day, maybe three years. I'm at six times a day, four years, six. And now in order to sleep, I need the control release version of Sinemet. Because at night when you're asleep, the dyskinesia, which you're not going to have them if you're not overdosed, but some people, the tremors keep them up. And when I would lie in bed, my head starts to tremor. And then you've got your gears grinding and restless leg. There are so many other little things, and anxious bladder will keep you rob you of a good night's sleep if daytime wasn't a challenge, hello, nighttime. So Robin knows I'd stand there ready for bed, brush, floss, ready to go, yank the covers back, look at my pillow. What now? The battleground is still 24/7, so by year four and five, I needed the controlled Sinemet just to get me to sleep. And at that, I don't think I could go beyond 4 hours before that wore off and the gremlins came back. The big difference came then. Mind you, I'm still going to the gym. Loving that. Because driving home around lunchtime, I'm all sweaty, but it's a good sweaty. And knots, it's like I'm a marionette. And the puppeteer had untangled all of my strings and I'm good to go. But I'm pretty darn exhausted. Can't do a whole lot. But shower, lunch, sit there like a lump waiting for the tremors, the Dyskinesia and the other little things. It's like a Pandora's box. So come June of 2021, I guess it's my Parkinson's had advanced. Maybe it's because I'm female, I don't know. I had heard about DBS, deep brain stimulation, another tool in the toolbox, as they say. And there's like 22 other drugs. And I did know of some other friends who were having some success with another Sinemet carbidopa levodopa extender. But it's another set of drugs with another set of side effects. And every time you take your Sinemet, you have to be aware of protein. If you're going to eat meat or a food with a protein, it's only active in your lower intestines and the amino acids fight for the efficacy of your carbidopa levidopa. So in other words, if I eat a turkey sandwich and take my pills because it's time, I'm not going to get any satisfaction from that dose of drugs.
Greer:
Wow.
Holly:
Yeah, I didn't know. There's so much I did not know. And your healthcare provider, movement disorder specialist, not just simply your GP, you need to go to a neurologist at the very least. And a movement disorder specialist, there's so many things that other doctors, it just won't be on their radar. They can only be so many things to certain people. So when a neurologist and a movement disorder specialist sees Parkinson's all day long, these little nuggets of information are pretty helpful to the patient. Plus support groups. You can compare notes. That's kind of the bonus about going to the boxing classes for Parkinson's patients, because you can compare. Yeah, I know I'm not going to take the same doses the guys are on. They're bigger. Well, I decided on deep brain stimulation because I got to the point of every 2 hours I was diskynetic and had to take a dose. And then when the dose peaked, I was diskynetic again. I found myself saying no to just about everything social, just about anything. Okay. I brushed my teeth with the wrong hand. I couldn't get in the shower. Like I come home from the gym, it's time to eat and it's time to have another dose. And every time I have a dose, nausea is a side effect, so I don't get too nauseous if I eat a little cracker or something with the dose. And then I have to sit there and wait 45 minutes before it takes effect, because if I get in the shower and try to shampoo, I can't move my arms to shampoo. It's the darndest thing. It's somebody else that's controlling you. And you feel so helpless. So pretty much after boxing, come home, sit like a lump, eventually get to shower. I'm two years away from that. So it's kind of hard remembering because the deep brain stimulation where electrical impulses have now taken the place of me having to take any drugs, it's a good 20 months since I've taken any carbidopa levodopa.
[31:24] Greer:
That's amazing. Do you want to explain what was involved with the deep brain stimulation and the surgery you went through?
[31:32] Holly:
Well, I had seen Dr. Rao do her presentation two different times when I wasn't ready for it. And I could not look at the patient whose head is clamped down to the table with a halo, because for one, you're always moving and twitching. How can you do precise surgery? Well, they need to plant two electrodes deep into the core of your brain, because those are the almond, the little nuggets, the subnuclear... Oh, I'm going to butcher the names. Look it up, everybody. Look it up. It's like antenna installed inside your brain, deep inside. And if it's not in the right place, they're going to wake up. They're going to be electrifying your speech. You won't be walking. It's just so precise. It's that new frontier that there's still so much more to be discovered. Oh, I think this was from 20-30 years ago. They used it for, say, tremor, but I think it's good for epileptics, too. And the beauty of Dr. Rao, Abigail Rao, when she came here, she brought what she had learned. The patient stays asleep through the entire thing. Whereas originally, I had heard nothing but webinars. Once I decided, I think it's not that cringey, it's just temporary, I can get through it because the end justifies the horror. We have a brain surgery. I just can't live another month. I can't sleep, I can't function. It was not good. Once I just declared to Robin's sister, I said, "Guys, I'm going to do the surgery." Once I said it out loud, then I said it again, then I couldn't wait. Let's do it. Let's do it. Let's go. But the screening process is quite thorough. I decided, say, July 1, and my first opportunity for surgery was mid-October.
[34:02] Greer:
But it sounds like it had a great impact on you and you just experienced a huge improvement in your quality of life.
[34:07] Holly:
Yes, because my brand of Parkinson's just so happens to be what the stimulation, where this whole procedure really can shine, just certain things. So they will screen out a patient that may have predisposed to well, I definitely had depression, but it didn't make it worse. There are just so many different factors that they look for since I've had it. It's two surgeries. The first big dramatic with your head being drilled, I think it was gosh about five or six hours. By 12:30 I was in recovery. The week before we did a very good image through an MRI, a map of your brain. Then they also have the information from my prior screenings because I have to go through OT, PT, and speech therapy with no drugs in me, no Parkinson's with carbidopa, and then video doing certain tasks. This is weeks before. It's just all in assessing my brand of Parkinson's, my symptoms, and whether or not this surgery will help. And then I had to go in. That was about 4 hours on drugs, off drugs for those three disciplines. And another week I went in for 4 hours while taking my carbidopa. They're cognitive, nothing but cognitive tests, which had me in tears in the end. And I was quite diskynetic and nervous. You take your snack, your water, your pills along with you, because every 2 hours, if it's a four hour test, I needed to dose myself. So I was up. I was down during the test. So I thought, that's it, I washed out. No, that did not color what they were looking for. I was still good. So by September, I was scheduled. COVID was still a thing, but we were good. It was October 2021, so the first surgery had the MRI picture. And when she had placed the electrodes in my brain, they also in the operating room run the patient through a CT scanner and double check the images of what they previously mapped on that beautiful MRI as to where exactly each of the two electrodes are placed. And there are three different companies to choose from. And obviously, I don't know beans about any of them. I let her choose, so she gave me Medtronic. So Medtronic's latest has eight sensors on each one. So a grand total of 16 with the ability to direct them. They're directional. But right now, I believe for these last two years, all they've lit up in my skull have been two. We haven't had the need to light up the others, and I'm using probably all the wrong words, terminology, but that's how my simple head thinks of it. But the second surgery is a week later. And that takes the left and the right wire at the top of my skull. They're little caps. And the wires, the left runs across to the right, then goes down behind my ear, down through my neck, my collarbone, to the battery pack, which looks just like someone who needed a heart pacemaker. It's, say, the computer, it's the battery. So those are connected in a much more brief surgery. And you're sent home after lunch with no need to be kept overnight. The first time I probably forgot to say that the first one, when they put the electrodes in and have drilled two holes in your head. Yeah, it's good I stayed overnight. It's tradition. You stay overnight, make sure there's no brain bleed. And Dr. Rao tells me the beauty of keeping the patient asleep the whole time instead of bringing you awake to follow directions: for placing the electrodes on the right side than the left side, it's a much more involved lengthier surgery. But the way she does it through the scanner in the operating room, it just shortens it that much more. So there's less brain bleed. What can I say? I'm so happy. I came home after the device was, the wiring was done. The second surgery, and I think that afternoon, I might have taken some tylenol. But throughout the whole thing, I did not feel the need for heavy pain drugs. It was so much easier than the breast cancer mastectomy. 13 days, about two weeks after I'm healing and I'm still taking my drugs. I did have a couple of days there that were magic. I had no symptoms. The device wasn't turned on, and I had heard about it from some fellas ahead of me, had this phenomenon. It was just a couple of days where I didn't take any drugs because I felt no symptoms. And I think the experts say we don't know why that is. I guess it's trauma in your head. Well, that wore off. And then before they activated my device, I was back on taking my drugs. I think I left off one of the big, horrible symptoms for mine is dystonia in my feet and my legs, where your feet just curl uncontrollably and the muscles contract. It's so painful. And when my carbidopa is worn off and I need more hello? I can't. It hurts so much. A lot of times, Robin, I have to put my foot up on the sofa, and he has to just bend it the opposite way. I have no control over my feet curling. Go figure. I guess when I looked at the charts of the big book, hey, guess what? I'm advanced. I think I knew that before I even looked it up because the signs were all there. I am not living my life. So the happy ending is, I found DBS. I said yes to it, and I think I have the best team in the world. At Norton, Dr. Rao, Dr. Phillips, they turned on the device. I had my drugs with me. I was told to come in with no drugs in your system because we need to dial you up on the electrodes, so we need to have you at your worst. And it took about 2 hours. First he said, we're going to do your right side and then your left side. I'm just sitting in the exam room and they're looking at the tablet that's compatible with my Bluetooth device, and he's controlling it. It's so bizarre. It's a tablet controlling what's embedded in my brain. So he kind of takes you to a level. He needs to know what the setting should be because they send you home with your own phone and your Bluetooth communicator. So as my brain settles into the stimulation coming from that for my symptoms no longer in my intestines and ingesting pills, it's just so clean and neat and magic. They want to make sure that I can't do any damage by taking myself too high, too low, and there's no need. Once he tunes me up, there's like, three days, four days later, then I could start stumbling around the house, and then I know, just open up my device, turn it on. It just takes a matter of click, click, done. And I have immediate relief from whatever's bothering me.
[43:12] Greer:
That's amazing. Yeah. Thanks for sharing all that.
[43:16] Holly:
There's a lot. Yeah.
[43:19] Greer:
And just what a miracle of modern medicine. But maybe stepping back from the medical care perspective a little bit, what have been the impacts of living with this diagnosis on your sense of self and how you feel about your body and your dreams for the future?
[43:36] Holly:
Well, not mad and upset. I don't--like just the first days. I've never been in this position before. Mom's passed, and just this summer, dad passed. Robin's parents have been gone for years. The elders are all gone, and my boys are grown. I have no more cancer. Knock on wood. PD is definitely reduced, and it will progress. I know I'll be back on the drugs eventually, but yes, your question. Even the dog passed. They always say, I miss her so much, but she did keep me from wanting to travel because I didn't want to leave an old, sick dog in someone else's hands. So I'm ready to set sail. But it's like a question you would ask a college student. What now? Yeah. I have sometimes moments, many moments to where I do not feel like a Parkinson's patient, especially when we're out of our usual routine. And traveling, the world is my oyster. I don't know where to go first, but I've been able to cook. I've gone back to the gardens, and I'm volunteering out at Yewdell, which is what I was doing before PD. I guess I'm just trying to say yes to the things that I said I can't do anymore. And it's been gradual. Yeah.
[45:13] Greer:
You sound so resilient. What are some of the ways that you've grown through this diagnosis?
[45:19] Holly:
Well, I don't know if I let it on, but I'm really impatient. Once I decided, let's go, let's go. I just need to be more patient. If I can't do things seven days straight, I really should take a day off. I was going to other boxing gyms five days a week. I did our usual three, which were much harder cardio, and then other Rock Steady workouts weren't quite as vigorous. But then I realized, why am I doing this? Let's figure out what other people might do. I for so long, did not want to identify as a cancer survivor and the big pink wave and all that. For some reason, I wanted to distance myself from that. I might have to work that one out in the future. But with Parkinson's, I met people, it's wonderful; with the other group, too. But we laugh about, let's go cross country and visit all of the Rock Steady boxing gyms that we can, and it's so much fun.
[46:34] Greer:
That sounds great. I'm wondering, has Parkinson's impacted you as a mother or as a person within your extended family?
[46:44] Holly:
Well, oh, yes, because the last six, seven years I was subhuman until the surgery gave me a second chance. I said, I want a do over. Yes. Mom. Let's see, mom was dying, and then dad needed us, and I could only do so much. And it's just living life and making choices day to day was such a chore. So I guess I was hermitizing, I was isolating. That's another thing. Depression, Parkinson's, you really do want to isolate. And it's the worst thing. It keeps you from being positive. You know why I'm so positive? It's my husband. He's marvelous. Yes. You must have some positivity at home and working outside. If I need to reset, all I have to do is sit outside, shut my eyes, just listen to the birds. I think it's primal. I'd like to think everyone has that ability to go back to nature, just kind of to reset from the grind. Yeah. And I tell Robin when I'm out, when we're in traffic and this open car of his, and it just seems too much. It's everything straight from the view, horizontal. I said, I just look straight up to the birds, to the clouds. It just resets my brain. If you're focusing on this chaos, it doesn't do you any good. There's a lot of neuroplasticity, and if we just feed it junk from a screen or just everything's chaos. Hurry, hurry. Chaos. I just look up. The boys will tell you I'm a fiend for a pretty day. A nice cloudscape. Yeah. I love that.
[48:50] Greer:
I have one last question, which I ask everyone that I interview on this podcast. I'm wondering what kind of advice you have for us on learning to listen to our bodies?
[49:00] Holly:
Well, if you're listening, and it's something you may not want to hear, like the thumb tremor or that lump I discovered five weeks after an all clear mammogram, act on it. And if I had not followed it up with that neurological screening yeah. Where would I be? I guess that I would be further down the road and then diagnosed. But what was I guess the terror was the breast cancer. Because at first, the lump I found, they said, yes, that's a lump. Well. Yes, I know that. And then they did a needle biopsy. Oh, it's benign. We'll check on it again. Five months later, I went back. Well, it's vascular. Let's do an incisional biopsy. So that told the pathology department, wherever they sent it, that it was stage two in just a couple of months. But whereas before, the needle biopsy said, oh, it's nothing. It's benign. So if I hadn't followed up on that, I hate to think how far this cancer would have gone. Maybe I wouldn't be here. They caught it before it went into my lymph glands, and I said, we'll take the left one, too. I don't need that. But just listen to your gut instincts. Yeah, the doctors were saying it's no big deal, and then it was a big deal. I didn't want it to be a big deal. It was kind of exactly not what I wanted to hear. For someone who loves drama. No, I did not want to hear that.
[50:46] Greer:
That's really great advice, Holly. It's been an absolute delight speaking with you today. I really appreciate your outlook on life, especially after everything you've gone through. And thank you so much for sharing your story with us.
[51:00] Holly:
Oh, Greer, it's an honor to be asked and to do the podcast. Thank you.
Greer:
Oh, you're welcome.
[51:14] Greer:
If today's episode resonated with you, I'd love to hear from you. You can email me at femammalpodcast@gmail.com. That's femammalpodcast@gmail.com. You can also follow this podcast on Facebook. Just search for Femammal Podcast, and you will find a community of people who are interested in living well in our bodies. And, of course, I'd love for you to rate this podcast and leave a review wherever you download your podcasts. Until next time, be well.
