This is Mark Milow’s Parkinson’s journey, whose life took an unexpected turn several years ago with a diagnosis that changed everything. When Parkinson’s became a part of Mark’s life, it wasn’t just a health challenge; it prompted a reevaluation of what it truly means to live life to the fullest. Initially confronted with disbelief, he realized that this diagnosis was not the end of his story, but merely a new chapter.
Despite the inevitable struggles with depression and apathy that accompany Parkinson’s, he remains committed to staying positive, leaning into his natural tendency to seek out the good even in difficult circumstances. He has forged deep connections with fellow companions on this path, finding support, encouragement, and lifelong friendships in the most unexpected places.
As Mark shares his story, he reminds us all that life with Parkinson’s is not defined by limitations but by strength, perception, and solidarity.
Can you share with us your journey with Parkinson’s disease? How & when were you diagnosed, and how has the progression of the disease impacted your life?
This is, nearing my third Parkiversary. So, I was diagnosed almost exactly three years ago. What I would say to myself, there’s a couple of things there. Actually, now, of course, there’s just a lot of things I could say. But really when you look at Parkinson’s disease and what it is we go through, first of all, the first thing I had to realize was that life is not over. This is what I said in the post, but this is truly. When I was diagnosed, it hit me with a ‘’Wait a minute. I’m too young to have this kind of thing’’. You hear Parkinson’s and you think an old person kind of fading in health, right? One of the first things I learned was that your life’s not over when you’re diagnosed with Parkinson’s, especially young onset Parkinson’s. There’s a lot more to live and that is a significant thing for me. When I was diagnosed, I started searching for a motivator. I was looking for examples, people out there.
One of them was Alan Alda, the actor here in America from the TV show M*A*S*H. One of his quotes was that he was living very well with Parkinson’s. He’s got a podcast. He’s very happy and he’s got a lot of things ahead of him that he’s got to do and I thought that’s exactly what I need to do. I need to focus on that, that I have a lot more to live. Life’s not over and you can’t let this stop. You really can’t, kind of things. So, from that perspective, that’s one of the things that I was looking at as far as that goes. The diagnosis story really comes into… There was a tremor that started and it was frankly just a pinch. These two fingers, the index finger and the thumb, started to just pinch involuntarily and then, that developed into a full tremor in my left hand. This was in the heart of the Covid crisis here.
In March of 2020, Covid was rampant and it was in February of 2020 that these symptoms started. So, around March was when no one went out of their house, it was so hard to get a doctor’s appointment, that kind of thing. But I was able to see my primary care physician. I think it was April by the time I finally got into CM. So, it’s nearly a couple of months later. And he diagnosed me with the essential tremor. He said, ‘’Yeah, that looks like an essential tremor. It’s nothing really to worry about I think at this point but Mark, let’s keep an eye on it. If it gets worse, let me know. If anything else happens, let me know. But I think that’s what you’re looking at’’. I said, ‘’Okay, I have a friend with an essential tremor. It’s not the end of the world. Got it’’. But as time went on in 2021, other things started to happen. I came back from a weekend off from work and I came back on a Monday. I was walking across the warehouse with one of my employees. And she made a comment about my left arm, not swinging. She asked me if I hurt my shoulder during the weekend because my arm wasn’t swinging when I was walking in her own words. It’s kind of freaking me out. It just doesn’t look natural. I said to her ‘’What are you talking about?’’ Because I had no idea my arm wasn’t swinging until I physically looked. My left arm did not swing when I walked. I thought that’s really odd. I wonder why that is. Of course, that’s a situation we call bradykinesia, but at the time I don’t know this. I just think it’s my arms not swinging when I walk.
Being a warehouse manager, I mean a warehouse, it’s cluttered, there’s pallets. I kept tripping on things because I kept thinking my left foot was higher than it was or I kept skipping or scuffing my left foot on the ground when I walked. And that’s really weird. Again, it’s just kind of odd. So, those things were happening, but again not tying them all together as this is beginning to look like a Parkinson’s diagnosis, I don’t know that. By now it’s getting to be the fall of 2020.
I was watching TV with my brother and it’s a little chilly. I sat on the sofa and I crossed my arms, folded my arms, leaned back against the sofa to watch TV. I thought to myself, I got to get up now and get going and I couldn’t move. I was on the sofa and I was locked in position. And I thought this is scary. I can’t move, I want to… I didn’t want to freak my brother out. So I didn’t say anything. But it took me a good 10 minutes to finally be able to separate my arms and put my arms down and be able to get up and walk. At that point, I knew there was something seriously different than it was before. So, I called my primary care physician. This is around the holidays. It’s around Thanksgiving. So, it’s novemberish. ‘’Doc, more things are coming up. I need to see you.’’
I’ve seen this doctor for nearly 10 years. He and I were very close and got a very good rapport. As I’m describing my symptoms to him and outlining the different things, he had this looking concerned on his face. And he just came out in the street with a straight communication said ‘’Mark, I’m very concerned about some Parkinsonian-type symptoms I’m seeing in you’’. Now, some of my friends really have a problem with that, that he would actually use that term that early without a diagnosis. But by this time I had frankly Googled so many symptoms on my phone that Parkinson’s was coming up on my phone. Paraquat, lawsuits, pesticides… So, the Parkinson’s had crossed my mind. He said, ‘’I’m going to give you a prescription. It’s for pramipexole. It will help your Parkinson’s if you have it. I’m going to send you to a neurologist. You need to see a specialist about this. And at the very least, pramipexole helps restless leg syndrome’’, which I have. So he said at the very least, it’ll help you let restless leg syndrome. If it’s more than this Mark, it will just be a little kickstart to help you. But you need to see a neurologist with further detail. I said, ‘’Okay, got it’’. Fortunately, I was able to go see a doctor in February. So it’s just the next month. Walked into the office and he does all the finger tappy things and the balance things. That’s another thing too, by the way, my balance had become horrible and I was losing my balance frequently. Sometimes just standing still I would almost fall over. Just the evaluation as we walk up and down the aisle things like that. And he said ‘’Okay, here’s what we’re going to do. We’re going to do a CAT scan and an MRI to rule other things out. And I’m going to give you a prescription for some sentiment which is carbidopa & levodopa. I want you to come back in a few weeks after the tests, tell me how the levodopa does. Because looking at you today, I’m thinking and it’s not confirmed yet, but you look like you have a stereotypical case of idiopathic Parkinson’s’’.
I looked at him and I said ‘’Really?’’, I mean. I mean there’s no test. Are we going to draw some blood or anything? He’s like ‘’No. No, there’s really no test. I’m observing you. I’m experienced. I know what I’m looking for. Frankly, within five minutes of you walking in, I kind of had the idea. But we’re gonna rule some other things out first. That’s what the MRI and scan tests for. But also your response to the levodopa is really going to tell us’’. So, I said okay. I do the two scans, take the levodopa, come back in a few weeks. And I walk in and he says ‘’Mark, you’ve got a lot of scarring on your brain. You get a lot of old scarring on your brand. Did you ever have any injuries to your head?’’. And I said, ‘’Oh, yeah’’. I started rattling off injury after injury after injury, had a lot of head injuries when I was young. He said, ‘’Okay, well, it could be from that. That’s good to know. But I’ll tell you, the CAT scan and the MRI did rule out the other things I was looking at. How is the levodopa doing for you?’’. I said ‘’Doc, this stuff’s great. Ever since I started taking this stuff, all of those symptoms went away. I mean, I’m not struggling with any of them all. I mean, when it comes close time for my next dosage, they kind of come back. But then I take my next dose and they’re gone again. I said this stuff’s fantastic. Is that okay?’’. Yeah, there you go. He goes, ‘’This is their confirmation. I’m going to tell you now. Yes, you have Parkinson’s.
In fact, if I could put a picture of you in the dictionary next to the word Parkinson’s, where idiopathic Parkinson’s, your photo would be perfect because you’re the stereotypical case of what we would look for in idiopathic Parkinson’s’’. I said, wow, that’s, okay. Here’s where my diagnosis differs from so many others. I hear so many story after story after story where people say, at that point, they say usually levodopa, make an appointment come back in a couple months and we’ll see you then. That’s not the experience that I had. Now, my neurologist is six foot seven, Scandinavian descent. So, I’m looking up at him. He said ‘’You need to start thinking about things like Tai Chi’’. He starts doing these Tai Chi moves and it’s six foot seven. I’m like, my God, what are you doing, right? But he said ‘’You need to start thinking about things like Tai Chi. You need to start thinking about things like karate, boxing. There are classes out there that will teach you’’. He didn’t say the term big and loud, but he said there are classes out there that teach you to exaggerate your arm movements to pronounce your voice and to project your voice and things like that. I had all this advice from him that so many people don’t get. This is great. This is fantastic. I really appreciate it because I, truly didn’t know what to do. He said, ‘’Mark, it’s not the norm to have it at your age now’’.
I was 54 at the time, but we started talking. He said did you ever have this, or this, or this happened? One of the things he cited off was micro writing. I said, ‘’Yeah. About five years ago, I had my own business. I would leave notes for my employees. And they would make fun of me because my notes were so small and they were like, how are we supposed to read this Mark? We don’t even know what you’re saying’’. I’d look at the note now and tell him I don’t even know what I was saying. I can’t even read it so small. I could not control it as much as I wanted to. My hand would only write in these really small tiny letters. And the doctor said, okay, that’s about five years ago. He said that was your first symptom there. ‘’What about insomnia, what about constipation’’, which were huge. Again, I was running my own business and those were inconveniences when I was writing my business.
‘’What I’m telling you now is your earliest symptoms were not recognized as Parkinson’s symptoms, but they were at around the age of 49 years old. You’re now 54. We’re going to treat you as young onset Parkinson’s because these symptoms came on by the age of 49. It was just until recently that your tremor came on. But yeah, you’ve been battling with some symptoms here for more than five years’’. Whoa. Okay, that just kind of blew my mind because I thought Parkinson’s was a tremor. Parkinson’s was, when you explain bradykinesia, the lack of movement I can get that but micro writing, constipation? The other thing was being in my own business owner, I typed a lot. I did a lot of emails. My left hand which is where my tremor is and the Parkinson’s effects, my left hand could not keep up with my right. So, I couldn’t type anymore the way I used to. My typing speed decreased tremendously and the doctor said yeah that’s related to that same thing. So that was in February of 2021.
At that point, I’m looking around, going what do I do now? I tell my family. My family is a little shocked. Now, my grandmother and my grandfather on my mother’s side had Parkinson’s. My wife and I actually were care partners for my grandmother for a time, but she also had dementia. When her dementia got to the point where we couldn’t care for her adequately anymore, we had to actually put her in an assisted living home where they could care for 24/7 because of her dementia. There was concern in the family, of course. In fact, one of my first questions that came from my wife was ‘’So, when does the dementia come on?’’ And I’m like, I certainly hope not for a while. I don’t know. I’m learning this stuff, right?
How did you find support to address the challenges posed by your condition?
I created a couple of social media accounts. I used to be on Instagram before. A friend told me ‘’There’s a lot of good information on social media. There’s a lot of good people with Parkinson’s or just chronic illnesses as a whole. You can get on Instagram or on TikTok, and there’s people that talk about their conditions. They’ll be willing to talk to you about it or give you any advice that they have’’. That’s a great idea, connecting with other people. Because I didn’t know about support groups or anything else at that point. So, I created an Instagram and a TikTok account. I just started to vlog. I talked into the camera and just shared my experience. That was my therapy because no one around me understood what I was going through.
If I talked to my family, if I talked to my close friends, they all just looked at me blankly. Some of them cried. Some of them were like, ‘’I’m so sorry your life is over’’. I’m like, no, I don’t think it is. But I didn’t know, right? The response was just people with an outpouring. They care deeply but they had no idea what to do or to say and I don’t blame them. So, I got on Instagram and TikTok and more people were saying yeah, I went to that too, this and that. All of a sudden what I was putting out there as a therapy for myself started connecting me to other people. I got connected to this online community of people with Parkinson’s. We call ourselves Parkies and that support really stemmed, most of the support I received stemmed from that online platform where people were just one after another. ‘’Yeah, I understand, I know what you’re going through, it really sucks. Here’s some things I’ve tried’’, those things. Wow, that was amazing. That was fantastic.
Fortunately for me, my neurologist on the third visit, my neurologist said ‘’Mark, at this point, I’m going to hand you off to somebody else. There’s somebody, we call them a movement disorder specialist. They’re a neurologist like me, but they have additional training in movement disorders like Parkinson’s and I’m going to refer you to this guy. He’s fantastic. He’s a friend of mine and I think you’re really going to benefit from seeing a doctor with his specialty. Again, this is not the norm. A lot of people with Parkinson’s have to fight claw and scratch to see a neurologist and beyond that to see an MDS. This just happened. I mean, ‘’I’m gonna say not goodbye to you, but you really don’t need to see me. He’s gonna be your primary focus for your Parkinson’s going forward. But if you want to please check in with me once a year just to let me know how you’re doing, that kind of stuff’’.
I went to see my MDS and he was fantastic. He was uplifting, encouraging, energetic. The first visit that I had with him lasted over an hour and a half. We actually closed down the office. The rest of the office staff left and he and I stayed till half an hour after everybody was gone just so he can answer all my questions. At the end of the first visit, he said, okay Mark, here’s what we’re going to do. Then, he stopped himself and he said wait a minute. You’re the patient. You’re in charge. I’m gonna tell you what I think we should do but you tell me if you think this is the way we want to go. I think we should this and that. I said, ‘’Doc, that sounds perfect to me’’. He said okay, that’s what we’ll do. Come back for the next visit and we’ll take it from there. I again have had the very fortunate occurrence of having tremendous doctor, care from primary care to neurologist to move into sort of specialist. A lot of friends tease me about that and they say they hate me for such positive experiences because so many people have not shared that same thing. So for that, I’m very very blessed. Absolutely.
His name is Dr. Johan Samantha. Unfortunately, I’m trying not to get too emotional here, in October he passed away. He passed away suddenly. He’s younger than me and he was playing hockey with some friends. Just out, exercising, and having fun with some friends and had a heart attack and passed away, in much better shape than I am. So, that was kind of devastating and I’m still getting in to see my new neurologist or see my new MDS. That was a sad day. If you go back to my social media feed when I had to say goodbye to the dude, that was rough. He had a great reputation here in Phoenix with not just the patients, but the whole Parkinson’s community, even the vendors. Just a great, fantastic guy.
You are a very positive person. When you’re speaking of your experiences, you speak of how it’s a fortune to have all these. How do you nurture and maintain that positive mindset within yourself?
I try to be positive. There are obviously times when I struggle. Depression and apathy are huge with Parkinson’s. As a tendency, I’ve been a positive person throughout my life. I’ve always tried to see the silver lining. Try and focus on if this is a difficult circumstance, how do get through this, what’s gonna get us through and how can we look back on this and make it positive? So, that’s kind of been a natural tendency, but I’ll tell you that the people that I’ve been supported by, I’ll say this, people say, ‘’It’s too bad you have Parkinson’s’’. I tell them ‘’It is but I’ll tell you. I would not have met a lot of these people in the Parkinson’s community had I not have Parkinson’s’’.I have met truly some of the greatest people I’ve met in my entire life since getting Parkinson’s. Some are lifelong friends already. They’re people that have stood by my side, have encouraged me when I was down and it’s the people really that help support. It’s amazing.
There’s a couple of things, that’s the biggest one. I do have a personal faith that I have. There’s a reason why things happen, and I won’t digress too much into that but I do believe that there’s reasons and purposes behind things. When you find that purpose, it brings meaning to the situation. In fact, I have a podcast that I do with a friend of mine Nikki. The name of that podcast is ‘’Making It Meaningful The Podcast’’. What we focus on that is trying to find purpose and meaning through difficult circumstances. So, that’s really what it is. It’s all about just trying to focus on those things.
What was the most unexpected aspect of having Parkinson’s?
Realize and understand that it’s the non-movement symptoms that are going to impact you more. I was not expecting that. Depression, the intense apathy… I’ve been a man of passion my whole adult life. I’ve been a purpose-driven person. I said goals and I hit those goals in my personal life and my business life. With Parkinson’s, I didn’t even want to set a goal and that is just so not like me. Then, it became hard sometimes to just… Do I even want to get out of bed? Not to sound stereotypical but truly there are days when you just like I don’t want to get up today. The depression, the apathy, and then the panic attacks.
In my professional life, I used to work in the pharmaceutical industry as an operations manager. I had five different departments, three different shifts that reported to me, over 100 employees total and in one year, we shipped out 3.6 billion dollars in product. So, it was almost a 24/7 operation. I had stress and pressure all the time. I never experienced a panic attack until I had Parkinson’s disease. Through all that stuff in my past with all that pressure not once did I experience a panic attack. There’s times when I was stressed but never a panic attack. With Parkinson’s, when the diagnosis came and as things were progressing… Yeah, that was the worst. In fact, my MDS said to me, ‘’Mark, what do you want to focus on this visit? If I could work on one symptom for you, what would it be?’’. I said, ‘’My gosh, doctor. I can’t handle the panic attacks any good’’. He said ‘’Okay, we’ll increase the levodopa until the panic attacks go away. And then from there we’ll look at the rest of your symptoms, but that’ll be our benchmark’’. I said, okay great. I had to get those panic attacks down. It was around that same time, enough levodopa, that my panic attacks went away. It was about the same point where my tremor was minimized. My bradykinesia was minimized.
So it all kind of dialed in around that point so that was good. But I did not expect the panic attacks. It’s the nonverbal and non-movement things to make it a shorter answer. I’m sorry that I’m going on so long, but all those non-moving things. I did not expect that.
How do you manage your disease? Do you have any secret tips or tricks?
I get teased a lot by some friends. They battle off time quite a bit, but they tease me because I have a very strict medication regimen. I mean, I am setting my watch, I have alarms to go off and I am very very strict about when I take my medication. I do my very best to separate food from my medication, especially proteins from my medication. That’s the number one thing that I do. By being that regimented, I think I have minimized the effects of the Parkinson’s as much as possible. I still work full-time. I’m a volunteer for the Parkinson’s Foundation.
I do a lot of stuff. With all that, what I’m saying is with all that activity, I’m still able to stay regimented with my medications and that really truly does help me. I wish that I was exercising more and I know you mentioned self-care. I’m probably the worst person that you’ve ever talked to you about self-care. Because I prioritize myself behind most of the things which I’m working on, I can speak more to that. Exercise is important and I’ve gone from working hard at it to hardly doing it justifying it because I’m saying I’m so busy. But we all know that exercise is critical for Parkinson’s patients. I know that I need to get better at that and also eating.
One of the early podcasts I listened to was one on dietary thoughts for Parkinson’s patients with the Parkinson’s Foundation. The dietitian talked about the Mediterranean diet. Lots of leafy greens, legumes… If you’re going to make a chicken or fish lots of oils, that kind of stuff. Lots of flaxseed to get in the system and keep it regular, right? And I know that sounds like a small thing that is huge for me. The dietary part has helped me tremendously. Again, this is the facts. Constipation is really a big part of Parkinson’s and eating that way has helped me tremendously. So, those are the biggest things; medication, exercise needs to be more consistent, definitely, and then that dietary part. I’m definitely a fan of that Mediterranean-style diet and trying to eat right and help yourself that way.
Are there certain things that people with Parkinson’s should avoid?
Depression and apathy, we talked about that. My friend Nicky, the co-host of my podcast, she has an expression. If apathy comes, if depression comes let yourself feel those things. Let yourself experience those things but don’t set up a hot shop there. Don’t set up a home there. Don’t rest, don’t stay. You need to get out of that. You need to move out of that somehow some way. Whether it’s calling a friend, or whatever you can do to get out of that. Don’t stay there. Don’t set up shop in that depressive state which is really easy to say and hard to do. Don’t think your life is over like I said.
So many people especially when they’re newly diagnosed are just devastated and think their life’s over. To the caretakers out there, let me say it this way, as a community, let’s not forget the caretakers. I see way too little emphasis and focus on the caretakers. We need to make sure that they have resources, they have support, they have people behind them because that is not easy. But also as caretakers, understand that the person that you’re caretaking for is not the same person they used to be. Their brain has changed. The chemicals in their brain have changed. The things that they’re going through, it’s not a ‘’fault’’ and they didn’t want this to happen. So, please be understanding that too. It’s not just for the caretakers, but their family and friends too.
I don’t want to be the way that I am, but I refer to myself now as Mark 2.0. I didn’t ask for this upgrade. It was a forced upgrade to my system. But now I’m gonna make the best of it. It wasn’t what I asked for. But what do I do now? I have to realize things are different now and accept that I’m not the same person, which means if I get tired, then I rest. I have to rest. That’s the other ‘’don’t’’ that I’m getting to. Don’t ignore the symptoms. If you’re tired rest, if you’re getting to that point where you’ve reached the end of the day, you’re hitting that wall, that’s a sign. You’re gonna pay for it tomorrow if you don’t listen today. So, listen to your symptoms.
Could you elaborate on the distinctions between Mark 1.0 and Mark 2.0?
Back in the pharmaceutical days, I worked 10-12-14 hours a day all the time and I could do it non-stop. I was just on the go constantly. And now, with Parkinson’s, as a movement condition, the energy levels are nowhere near that and I have to be understanding of that. I have to understand that I can’t do the things I did before because my body simply doesn’t have the same capacity that it did before. That takes a lot of adjustment because I didn’t want to stop being that energetic person.
There’s a TV show here The Walking Dead and I assume that you’ve seen it but there’s a character in there named Negan. He’s a mean character, wields a baseball bat, and hits people over the head. I did a post that I have a Negan inside of me that will bash me if I ‘’I need to rest now’’ No, no you’ve got things to do. I need to eat now. No, no, no. It’s true but the positive thing is I recognize it and that’s helped me get to be Mark 2.0. I need to get myself grace. I need to give myself the distance and the grace to say, ‘’I can’t do this anymore’’. I need to be realistic about it. I need my friends to understand and not take it personally.
If I can’t go to that social event because I’m just too drained. It’s not that I don’t want to see you, everybody, it’s not that I don’t miss you guys. I just simply can’t do it today. That’s another difficult thing for people to understand. If I’m going to take care of myself like that, that means disappointment for other people. I also have to be okay with that and it’s hard when people don’t understand that I don’t have the energy level that I had or I don’t have the focus that I used to have.
What is the importance of self-advocacy for people living with Parkinson’s?
My medical experience has been wonderful and I have not had to make much of an effort for myself. But I mentioned I have a podcast, the ‘’Making It Meaningful Podcast’’ and my co-host Nicky, diagnosed with Parkinson’s disease for five and a half years. The last three and a half years, she knew something was off and she was telling her doctor. The response was always that’s not Parkinson’s. That was the end of it and she kept thinking, ‘’If it’s not Parkinson’s then what is it? It can’t stop here, right?’’ She lives in rural America. There’s not a lot of doctors around, not a lot of choices of doctors. She had to fight to find an answer. She actually had to refer herself to the Cleveland Clinic and go there which was an eight-hour drive away from her house in Michigan. She took several trips to go to the Cleveland Clinic to see multiple people at a time, spend hotel nights, and things like that to get rediagnosed with functional neurologic disorder, after five and a half years of Parkinson’s diagnosis. She never would have reached that had she not pushed the issue. One of our podcast episodes is about that. In fact, the whole concept of that episode is self-advocacy.
It’s her story, but it’s bringing up the whole bigger picture of self-advocacy. There are so many stories that I hear of people that, three, four to five years, had to push their primary care physician just to see a neurologist. You must stand up for yourself in healthcare today. There’s no if answer about it and if you did not get the words that you’re looking for, you don’t stop. You have to keep pushing. It’s the state of health care nowadays you have to do that.Thank you so much. This is truly an honor and a real privilege. I really thank you guys because it’s a treat. This is my therapy now, is to be able to talk about it and hopefully help other people. So, thank you so much.
