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HANNAH LIPPITT: Hello and welcome
to the Totally Clinical podcast, brought to you by Teckro. Totally Clinical is a deep dive into the freshest trends, big time challenges and most excellent triumphs of clinical trials. I'm Hannah, your host. Join me as I chat with industry experts, trailblazers, thought leaders and most importantly, the people benefiting from clinical research. So tune in, settle back and don't touch that dial. It's time to get Totally Clinical.
When Cathy Mollohan was diagnosed with Parkinson's disease at just 38 years old, she was determined that her diagnosis would not hold her back from making a difference to the world. Since then, she's become an inspiration to those living with Parkinson's. An ambassador, public speaker and, in her words, eternal optimist, Cathy is here to discuss her incredible journey from the day she received diagnosis to becoming a full-time patient advocate.
Thanks so much for joining me, Cathy. It's hard to imagine how it must have felt for you the day you were diagnosed. Do you think you could explain more about the process?
CATHY MOLOHAN: Sure well, it's a long time ago now, 10 years ago, and when you're 38, the last thing you expect is a Parkinson's diagnosis. I actually just went to my GP and mentioned to my GP while I was there for a cold that my husband had noticed a very slight tremor in my right hand. And the GP said, “oh, well, let's have a look”, and, you know, had me do a couple of various tests and the exercise, and started to look more and more concerned and said to me, “well, you know, I can't say – I'm only a GP – but you might want to go along and see a neurologist, you know, don't worry, but go, go get checked out.” And I think, “don't worry” and go see a neurologist in the same sentence or a bit difficult.
So off I went, and the neurologist was quite quick to diagnose, which was good in a way because I know a lot of people with Parkinson's who struggle to get a diagnosis. So, yeah, all of a sudden on a Friday afternoon, I was sitting there with the neurologist saying to me, it's a brain tumor or Parkinson's. We’ll come back on Monday and we run more tests. So one very... how should I put it – very up and down weekend later – I went back and it was confirmed, and I think at first I was, yeah, I won't say it was disbelief. I did accept the diagnosis straight away, but I didn't really know what to do with it. You know, you're told “off you go take your medication, come back at six months and live your life.” And I think it takes a while to get to wrap your head around something, you know, fairly earth-shattering like that and to realize that you need time to digest it. And at the same time, you're going to need help on your journey and that you're going to need to do some research.
So, I guess after about six months, I said, “OK, I'd better start finding out what the future holds.” And step by step, I start to look into what were the options, what's out there, what medication can I take, what's research up to at the moment? And I think when you start looking at Parkinson's, you think, “oh, we know there's lots happening, there's lots of research. They'll figure this one out, right? They'll have a cure for me soon.” And then you realize as time goes on, well, a lot of the articles about a cure start with “someday”, maybe they will in future, perhaps. And you become a bit more realistic.
So I think that's when I really reached out to networks to start talking to people who knew about Parkinson's, who were sharing my fate, especially young people with young Parkinson's. I think a lot of people don't realize that young people can also get Parkinson's. It's often seen as an old person's disease. And for me, it was very important to speak to people who are in the same boat, you know, who are facing being young-ish, at least at the age of 38, with a career still with possibly, young kids. You know, you're in the middle of life and suddenly you're told you have an incurable disease. It does come as a terrible shock to the system.
HANNAH LIPPITT: You've highlighted the reality that this could happen to any of us at any time. And there are many misconceptions around people with Parkinson's. Many people have no idea of the challenges patients have to overcome, but they also don't realize that it's possible to live a relatively normal life. Could you help to bust some of those core myths around Parkinson's?
CATHY MOLOHAN: Well, I can certainly try Hannah. I think when you Google Parkinson's or when you look Parkinson's up on the web, the first thing you find often is a picture of an old man bent over and shaky. It's actually an image you're trying to have changed because it's so stereotypical of Parkinson's disease. Yes, the most prevalent age group, I suppose, for Parkinson's is older, I think from the age of 70 and is male. But there are a lot of people who are young, who are female, who get the diagnosis when they're in the middle of their life, in the middle of their career, and where it comes as a complete shock and a complete surprise.
So, myth number one is: not everybody who has Parkinson's is an old person. And if you have symptoms that you think might correlate to Parkinson's disease, do go on to get it checked out because often people don't recognize the symptoms. For example, my symptom was a tremor, which is quite obvious. You know, you've got a shaky hand. You're struggling to put on your makeup, to put on your earrings, to paint your nails, to write a letter, to type. But a lot of people don't have a shaky hand or shaky leg. People get stiff, for example, they get shoulder pain. People with Parkinson's struggle to turn over in bed at night. They slow down. They can freeze in the middle of the road. I know a guy who literally just freezes. He cannot move his feet, you know, and I think people don't realize that those are symptoms and they associate it with old people and with the shakes. And that's by no means everything.
Now you mentioned as well that you can live a relatively normal life. I do live a normal life in that I live at home, I'm still fully independent. I'm married. I've got two teenage kids who provide me with all the drama and the fun and the fights and everything the teenage kids bring with them. I work. So yes, my life is normal. At the same time, my life is dominated by Parkinson's. You know, I will take medicine for the rest of my life. I will every morning wake up with the thought I have P.D., I wonder what the day will be like, because each day is very different. So I live a normal life that is still shaped and defined by P.D. I just try not to let it dominate every thought, and I try not to let it, you know, be the defining factor in my life.
HANNAH LIPPITT: Could I ask you to
explain to the listeners more about your exercise regime? I think many could be surprised just how important exercise is for Parkinson's patients.
CATHY MOLOHAN: I'm really glad you brought that up. You not only CAN exercise, you MUST exercise, and there's a new study out that cements the fact that people who exercise, and by exercise I mean three times a week, getting your pulse right up there, getting nice and hot and sweaty, is the only thing that is actually neuroprotective. In other words, it's the only thing at the moment that they know of that will modify the progression of Parkinson's disease. There's no medicine out there that will do this.
So, it's tough when you've got Parkinson's, you know, you might be stiff and sore and tired and maybe depressed as well. But if you can at all, you have to get up. You have to get out of bed, you have to go for that cycle, which I did this morning. It's two degrees in Berlin, Frankfurt. I went out on my bike for an hour, wrapped up like a mummy. And I do yoga. Every week I walk, I swim. And without that, I think I'd be in a much worse state. So yes, yoga is… not just yoga – everything – sport, exercise, is absolutely essential. You've got this idea of somebody sitting in a chair all day with the shaky hand and being looked after. And the only way to fight that image becoming reality is to get up off your ass and to get out there and do sport – whatever sport you can do.
You know, some people with Parkinson's run the marathon or climb big mountains. I personally will never run the marathon. I've no intention of even trying, but I will go for a 5K jog and be proud that I made it, which something I didn't do before I had Parkinson's. I also didn't do yoga, so I would argue that I may be fitter now than I was 10 years ago when I was diagnosed. It just takes me a bit longer to get going. You know, it might take me a bit longer to get my stride. When I go for a walk at my, I might be bit stiffer, if not only my sooner than Facing Dog doing my yoga exercises. I would think “slow down, teacher”, you know, she's miles ahead of me and I'm still creaking and groaning and trying to get into position. But if I don't, I stiffen up even more. It becomes a vicious circle. So, no matter how painful it is, and no matter how small your effort to get out there and exercise is, it's essential. Get up and do it.
HANNAH LIPPITT: So, Cathy,
I know that you underwent deep brain stimulation – that's DBS – a year and a half ago. Could you explain a bit more about what this entails?
CATHY MOLOHAN: Absolutely. So deep brain stimulation for me was when I started to research my options was something I kind of held in my hand as a joker, so I knew this operation existed. I know it's good for people with Parkinson's. It's especially good for people with tremors, although not exclusively. And for me, it was almost a bit of an insurance policy. So, to say, after a few years, I knew that the effects of my medication would start to wear off, and so I looked at the options and found deep brain stimulation, and you know, you read about brain surgery and you read the operation is done while you're awake… and you think “awake, what are we awake? How do they do that?” But yes, they do. You read that they don't actually know how it works. They just know that it works. And you think, “Oh god, you know, do I really want to have a procedure done where they don't know why it works?” And then I thought, you know, there's a lot of stuff in life I don't know about. So yeah, let's just have faith.
So essentially, having a deep brain stimulation is when they drill, open your skull and insert electrodes into your brain. And these electrodes are then attached to a battery pack, which is just above my chest, and it sends out these electrical impulses into my brain, which suppress my tremor. It sounds like science fiction. It really does. And the funny part? Well, not really funny, “haha”, but the peculiar part of it is that they need to do it while you're awake if possible, so that they know that they've hit the right spot. So you're lying awake with electrodes being put in your brain and they get you to say that is the week to make sure you can still speak and to make sure you can still think. And if all goes well, they know, yeah, we've got the right spot.
Now, for me, DBS was a game changer. It was very successful. My tremor is vastly reduced. I have very few, very few side effects. So for me, it was really a great step if a scary one at the time. And after I completed the surgery, I was kind of there in summer last year, so summer 2021, no 2020, sorry, in the middle of COVID… thinking, you know, “I've been given a second chance in a way. I've been given a new lease of life, I can use a mouse without dancing all over the desk. I can write again. I can cook chop vegetables without chopping some his finger off.”
HANNAH LIPPITT:
And it was at this stage after DBS that you decided to make a radical change to your life, wasn't it?
CATHY MOLOHAN: Up until then, I was still working full time in a consultancy company that I founded years ago with a good friend of mine, and I decided that it would be a great time to give up that job and to dedicate myself to patient advocacy. Now, why did I decide that at the time? I think it was because I knew I was lucky enough to have the second chance to have the financial means to be living in a Western country where this medicine is available to me and I wanted to, I think, I wanted to really shout out loud about Parkinson's, to really get my voice out there and say, “hey, let's all stand up together. Let's all advocate together. Let's make life better. Let's see if we can find a cure and let's join forces. Let us speak about being young and having Parkinson's.” And I'm so glad and so grateful that I took that step because advocacy has given me so much. It takes a lot of energy, but it rewards you vastly. And I've met a network of absolutely wonderful people out there who are helping me to amplify the voice of people with Parkinson's. And yeah, I think that's all rooted in the operation and the second chance that gave me.
HANNAH LIPPITT: Your story really is the perfect example of turning adversity into triumph and grabbing this second chance with both hands. You took the opportunity to become a patient advocate, spreading your story about your diagnosis and the importance of putting the patient first. Could you explain why advocacy is so important and more about your work in this area?
CATHY MOLOHAN: When I speak, for example, with companies, this is something I do a lot. I do talks for pharma companies or tech companies are involved in clinical research, and when I talk to people and I tell them my story, they look at me and they say, you know, “wow, thank you for sharing that. We do this all day. We crunch numbers, we analyze figures, we look at our data, but we don't know who we're doing it for and we want to know who we're doing it for. But you know, normally we just see the numbers, we see the statistics, we see the results.” I think it's essential to give Parkinson's a face and voice, and Parkinson's is something… it's a disease that can take away many people's ability or desire to speak out loud to really be seen.
So, for me, that's a huge part of what I do, and I just love… I love being on stage. I love talking to people. I love sharing my story. I love seeing the reactions, and I'm very grateful for the opportunity to talk to people and hope that my story may just encourage one person to try that little bit harder, maybe to find a cure or to find a better way of running a trial or whatever it is. So, yeah, that's what my work entails.
I'm very involved in the World Parkinson's Coalition. They're an organization that run the World Parkinson's Congress, which for anybody with Parkinson's who has the means to go there, is a life changer. I can't describe to you how amazing it is to be in a room full of people suffering the same fate as you… finding different ways of dealing with it… talking to researchers. So they're one organization. I support a lot in what I do, and the other one is a German organization where we're really working on trying to change the way Parkinson's research is funded, so we strongly believe that a cure is possible. And where, for example, in August this year, we're planning a symposium in Berlin where we will get together investors, startups, pharma companies, financial institutions and matchmaking and hope that we find people who want to talk to each other to find a cure.
And for me, that's what it's all about, helping people to talk to each other, opening up dialogue. That's why I became a patient advocate. That's why I absolutely love what I do.
HANNAH LIPPITT: You've
talked about a cure for Parkinson's and that you hope there will be one. How much progress in your opinion has been made towards this goal?
CATHY MOLOHAN: Not enough. That's kind of an obvious answer from somebody who's actually suffering from the disease and waiting impatiently. I think the world has seen what we can do when we're threatened by something like COVID that is global and a huge pandemic. We can find solutions faster than we think. Parkinson's is the fastest growing neurological disease in the world... that one in 15 males in the Western world will receive a Parkinson's diagnosis in their lifetime, one in 15.
So, Parkinson's disease and neurodegenerative diseases in general are going to be our next pandemic, if you like. And I do believe that if we make a concerted effort with politics, finances, society, if we can all group together research pharma, we can achieve a cure. And I think at the moment we're not close enough. But I do believe with the right willpower and again – this is why I shout out loud as an advocate a lot – if I can, I do believe a cure is on the horizon and can be found.
HANNAH LIPPITT:
That's an incredible statistic: that one in 15 men will receive a Parkinson's diagnosis. Do you know why Parkinson's has become so prevalent?
CATHY MOLOHAN: There are definitely issues that relate to the environment, so the increase of use in pesticides. There's one pesticide in particular that is implicated in Parkinson's disease, and there is a so-called Parkinson's belt in the US, in the midwest, I believe, where the pesticide has been used a lot. The fact that society is aging, of course, is also causing it. There are genetic factors, and those are just a few of the causes that we know about at the moment. We don't quite understand how Parkinson's starts there. There's no new research suggesting that it might start in the gut. So nutrition and the changed nutrition that we've had over the last 100 years could be cause. So I think as with many things, Parkinson's is a wake up call to the world to respect the environment, to respect what we put in our bodies and to really watch that development.
HANNAH LIPPITT:
You also focus on raising awareness about women and Parkinson's. You mentioned in your work how women can experience Parkinson's very differently from men. Can you expand on this subject?
CATHY MOLOHAN: Sure, it's something that a few of my friends in the Parkinson's community have focused on very strongly in recent years. They've set up a women's Parkinson's project to actually look into this. And if you go back historically, I was shocked when I saw this. It was in 1977, the US banned women of childbearing years from participating in early-stage clinical trials. So, in other words, any medication that was approved after 1977 up until 1993 when this law was changed was effectively not tested on women. Now that's a shocking fact. And the fact that women are now taking part in clinical trials is really only half the battle.
We need trial data reported, broken down by sex. So, in other words, at the moment, we have women in trials, but we don't know if they're reacting differently to men. And as regards Parkinson's, we have clear evidence, which is rather anecdotal at this stage that women experience Parkinson's very differently, our symptoms definitely does improve around periods. Menopause also plays a huge role or a drop of estrogen production. And all of this needs to be looked into urgently because we don't understand the correlation between hormones and PD. But we need to look into this because at the moment, women are suffering more once a month. So one week out of every four, women are suffering more from their symptoms, and we don't know why. And surely this is something that somebody can get behind and figure out for us.
HANNAH LIPPITT:
What is your message to those who have recently been diagnosed with Parkinson's disease?
CATHY MOLOHAN: If you're listening to this and you've just been diagnosed, you know, don't despair. Take your time. Find a local network to support you. Go to the Congress in Barcelona if you can. Talk to people, get support. Do not keep this hidden. I know a lot of people who hide their Parkinson's diagnosis for fear of retribution to the workplace or for fear of discrimination, which I can fully understand, you know. And if that's an issue, then of course, you need to consider whether you talk out loud about this. But for me, it was a huge relief to make my symptoms, the reason behind my symptoms public and to start talking about it. So yeah, if you've been diagnosed, don't despair. I'm 10 years in. Life goes on.
HANNAH LIPPITT: You mentioned
discrimination, which is another burden for those diagnosed with Parkinson's or indeed any rare disease. Do you have any stories about discrimination that you could share?
CATHY MOLOHAN: Oh, it's so wide ranging. You know, it ranges from a man I know in Berlin who was worried about disclosing his diagnosis because he was applying for a mortgage at the time, and he was worried that he wouldn't get the mortgage if his bank knew that he had a chronic incurable disease. It goes to the workplace where people are concerned that their colleagues will feel that they will be able to pull their weight if they have a disease like Parkinson's and worry that the colleague will suddenly disappear overnight and leave them to pick up the pieces. And those are kind of the Western world. I don't want to say luxury problems because there are real problems, but then there are problems people experience in Africa, which are a whole different set of problems.
There's a wonderful project – Parkinson's Africa – that focuses on the needs of people in Africa, and there are people there who are discriminated against and stigmatized because they, for example, have a tremor and people believe that they are bewitched and literally drive out of their villages. And because they're in Africa in the situation that they're in, they can't get medication. So they lose their families, they lose their support network and they're not getting medication. You know, how bad could it get? So I think discrimination is widespread, vast and definitely needs to be tackled.
HANNAH LIPPITT:
And what about the subject of family and how having strong networks can really help through tough times?
CATHY MOLOHAN: Humor and a good family network are key, absolutely essential in facing into what's to come for me for the next years. If you're young and have Parkinson's, one of the big issues is how do you tell your kids and how do your kids react to the fact that their parent is ill? My kids were very young when I was diagnosed. They kind of grew up with us, and I think that's really important that it becomes part of everyday life in the family. You know, when my hand was still shaky before the operation, they'd always... if we were going for a walk, my kids would kind of say, “which side is your wobbly hand?” They call it my wobbly hand, and they'd go and they take my hand on the other side. Or if I'm putting on my shoes and lose my balance, which can happen with Parkinson's, they'll just laugh and say, “oh, Mommy's falling over again.”
But they've also had, you know, their own little issues that... there was a teacher at my daughter's school who criticized her handwriting and said, "Kyra, your handwriting really has to improve or have you got Parkinson's?" And Keira was totally shocked and looked at this teacher and said, “no, but my mom does”, who in turn was very shocked as she should have been because it's disgraceful to use a disease like that as an example for bad handwriting. But I think because my daughter grew up with my illness, with my diagnosis, she was able to look the teacher in the eye and say, “no, my mom has Parkinson's and you shouldn't be speaking like that.” So I think openness with kids and dealing with how kids deal with your diagnosis is really, really important.
HANNAH LIPPITT:
Good for your daughter, and that's a real wake up call for the teacher. It's so important that flippant comments are called out. Are there any inspiring figures and organizations who in your eyes are doing outstanding work to raise awareness of Parkinson's?
CATHY MOLOHAN: A lot of well-known people have come out and said they have Parkinson's disease. Billy Connolly, the comedian – he has it, Michael J. Fox is an extremely well-known example, and you know, I wouldn't wish it on anybody. But if people get it and they happen to be famous, then I'm so grateful to them, to those who do come out and raise their voices and get involved. I mean, Michael J. Fox has raised millions, but I don't know how much money, probably billions at this stage, over the years for Parkinson's. He funds research projects, raises awareness and I think he just gives. He's a beacon of hope to the community because he had it for so long, and he still has a sense of humor, and he's written books about it that are very funny. And yeah, it's just good to see people, you know, getting up there literally on stage and using their fame to make Parkinson's disease more well-known and maybe just a tiny bit less scary to people who have just been diagnosed.
They're really great organizations out there, and I think I've mentioned the World Parkinson's Coalition and the Congress that they organized the World Parkinson's Congress a lot and anybody who wants to support that organization, they do amazing work in getting people in one place to talk about Parkinson's disease and the implications of having it and research, et cetera. They're wonderful. Congress has planned for Barcelona 2023, so join us in Spain, they’re guaranteed to have lots of great Spanish wine, tapas and great conversation locally.
Here in Germany, I work with foundation who are organizing the symposium in Berlin. And so check them out. You do foundation in Germany. And then there's a kind of an umbrella organization called the PD Avengers. I love this. We're planning to wear capes to the next Congress to go with our own favorite Avengers and the PD Avengers basically try to unite and multiply the voices of all Parkinson's organizations to, as I said before, shout out loud to be uncomfortable and be present. So, I guess those would be my three tips, but there are so many organizations locally as well, and I think it's really important to find somebody who is in your region, speaks your language, understands what's going on in your life. So just look it up and find people and connect and talk. It really helps.
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HANNAH LIPPITT: Cathy,
thank you so much for joining me on the podcast today, and I hope he will return soon to update everyone on your work and progress in the quest towards a cure. And that's your dose of Totally Clinical. But all the listeners out there, you can follow Teckro on Twitter – the handle is @TeckroOfficial – LinkedIn and Facebook, and subscribe to our YouTube channel. And of course, download the Totally Clinical podcast on Apple, Spotify and Google. See you on your next visit and remember to bring your friends. Thanks for listening! Goodbye!
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