Carl Beech, the CEO of Spotlight YOPD charity, is a dedicated advocate for those living with young-onset Parkinson's disease. As a believer in gratitude, Carl has found that his diagnosis has amplified his appreciation for life. Despite the challenges Parkinson's brings, such as fluctuating symptoms and physical limitations, Carl emphasizes the importance of thankfulness and living in the moment. He credits his condition with providing a renewed focus on health and well-being, prompting healthier lifestyle choices and a deeper appreciation for everyday experiences.
Carl's commitment to building community is evident in his leadership at Spotlight YOPD, where he fosters connections and support among individuals with similar diagnoses. He encourages others to join support groups, highlighting the richness and perspective they bring to one's life. For Carl, Parkinson's, while a difficult journey, has also been a source of unexpected blessings, enriching his life with new friendships and a greater sense of purpose.
So my journey, I think, with greater knowledge of the disease, you get greater awareness of when it actually started. But for me, it was physical symptoms at first. I was doing a lot of kettlebells and weightlifting every day, particularly during the pandemic. I got on the patio and I was doing a lot of exercise because I've always loved lifting. I was doing a lot of endurance sports. I'd run some marathons and long-distance cycle rides. So I started to get this shoulder pain in my right shoulder. At first, I thought that was weightlifting so I laid off it a bit and I realized it wasn't getting any better. In fact, it was, if anything, feeling a bit worse, even without activity. So it got so bad, actually, that I couldn't lean on a table, or if I was trying to eat at a table, my arm was in that sort of position, it would hurt so much. And then I was sort of leaning back to eat and I ended up sitting on a sofa to eat my food. I thought, well, this is a bit strange, but being a typical man, I didn't go to the doctor. I just thought, well, it will just pass, but then fast forward a bit. And that was a good few years ago, maybe three, no, maybe four years ago. What then started to happen was I started to get a presentation of what I now know as Parkinson's, young onset Parkinson's, that not everyone gets, so I gather, but some do. I started to get some muscle spasms, which I later found out was sort of a form of dystonia. But my ab muscles started to spasm. In fact, it started in my thigh muscle first. It was sort of clenching and unclenching. It actually happened a little bit on both sides, but sometimes I'd use my arm and my forearm would sort of shake like spasm and tremor. I thought, well, that's a bit strange. And I was getting a bit in my face. Like, I was feeling the muscles in my face were tight. Sometimes I just would seize up or they'd flutter, like, or spasm. I thought that was a bit odd. So that led me to go to a general practitioner and primary care doctor, and I reported my symptoms and the GP said, well, that sounds neurological. So I said, well, what are you thinking? You think, you know, it's Ms or he said, well, we need to get an MRI and we'll run some blood tests because it could be a deficiency of minerals or vitamins or whatever. So they gave me a belt and braces run through, and two things happened. One was, after several months, I finally got the MRI results because they don't really tell you unless you ask for it if there's no problem. And the MRI didn't pick up anything. So I thought, well, that's great. It's a bit confusing, but that's great. But they did pick up that I was very diabetic, and that must have been quite sudden because I'd had no diabetic symptoms at all. In fact, from the blood test to when I got the results, I started to urinate a bit more frequently and I was feeling a bit tired. My legs were tired, but it was a sudden hit. So, in a nutshell, they put me on type two medication because of my age. I was just around 50 at that time and there's type two in my family. So even though I'm teetotal, I'm not a drinker, and I kept myself fit, I thought, well, that's a bit strange. Maybe it's just genetic. Anyway, type two medication didn't work, so they rapidly up the dose of all the pills, and then they rapidly put me on insulin, which worked. But then they thought, well, that will deal with the other symptoms. But it didn't. So I still had pains and aches and I was getting these muscle flutters.
I saw a GP two more times, and the third GP was the first one to actually do some neurological tests, make your hands go this, finger to nose, and various other bits. What they discovered was, that when I stretched my arm out towards her, my hands started to shake, like I had an intention tremor, which isn't always Parkinson's, but apparently rarely that can be the case. And I developed at this point, the tiniest tremor in my left little finger. Tiny, barely visible, but the majority of symptoms were on the right-hand side. What they began to pick up was that I was sort of rigid and sore down one side. But a doctor said to me, and this is an important point, they said, this categorically isn't Parkinson's. I said, oh, okay. What could it be? Then she said, you need to see a neurologist urgently. And she almost had tears in her eyes. I thought, wow, this sounds like it could be quite serious. Do you think I'm terminally ill or something? So she said, don't go through the National Health Service in the UK, because it will take a year, 18 months to see someone. You need to go private. And I said, I'll be fine. I'll just wait for the NHS neurologist. Anyway, fast forward eight months. I still hadn't had an appointment. I was in a meeting in London, and I walked across a big room towards someone, and they said, have you got Parkinson's? I said, what makes you say that? And they said the way you're walking. I said, really? It's just your arms not moving and you're dragging your right leg. I said, oh, right, okay. I said, well, I'm having some tests at the moment. And they gave me the number of a private neurologist. So I phoned their secretary. Within a week, I was in front of that private neurologist. I was in front of them for half an hour, and they said, I'm 99% convinced you've got young onset Parkinson's. You haven't got Ms, you haven't got MND. I said, how could you tell? They said, well, I watched you get out of your chair and walk towards me, and I knew straight away, but I had to do these other tests first. I said, well, what about these muscle spasms and other things? They said, well, that can present with Parkinson's. And I said, well, I feel like I've got symptoms on both sides. They said, well, we'll do a DaTscan. And of course, the DaTscan came back a week later because I went private. The DaTscan showed that I had a bilateral loss of dopamine cells. So by the time I had gone from early physical symptoms to the DaTscan, I was presenting on both sides.
Greater awareness of the disease showed me that I'd probably been symptomatic for many years. I'm quite a naturally joyful person. But for many years, I'd been feeling low. I was faking excitement about things. When people find a parking space in the supermarket on a busy day they're like, ‘’Got a parking space!’’. I'd be, ‘’Don't care’’. We go on holiday, and I'd feel no excitement. Obviously, that was low dopamine. And the other thing that I was experiencing was I developed a joke over about eight to ten years of saying to people, I have got inner joy, really, I just look grumpy because my face just looked angry all the time. I just looked miserable. Now, of course, that was only dealt with more recently because I got my drugs increased. People started saying to me, you look different. Why do you look different? You look kind. You look kinder. And of course, the additional drugs, cause they titrate the dose up slowly, finally relaxed my face. So I've got my smile back in my eyes, around my face. I realize now, going back, I was probably symptomatic a good eight years, I think, maybe, maybe a bit less. But around that sort of time period, the physical symptoms obviously followed later. And then I went through a process of starting on Sinemet, a low dose a couple of times a day, that went up to three times on a higher dose, then four times. Then they added Ropinirole, and it was the final addition of a very low dose, four milligrams of Ropinirole, that dealt with the muscle spasms. They finally went, which was amazing feeling, because I've been having them for so long. So that's currently where I'm at. So I'm 52 now. I've been on medication for a year, probably, as I say, symptomatic, going back five, six years before diagnosis. Maybe six years, I think. Yeah, seven years. And for the most part, now I'm 90% back to where I was before diagnosis for most of the day. Although stress, workload, diet can all impact symptoms. Some days, you know, the medication isn't always as effective, so I can still have bad days and I don't have a tremor. It's important to say the little finger tremor didn't really develop beyond what it is. So I'm stiffness, soreness and slow movement dominant, and that has got slowly worse when the meds aren't present. But yesterday I was actually having a tattoo done and my left arm started to spasm quite dramatically, started to tremor. So I think I have, like, a stress tremor, really. So if I'm under a lot of pressure, then the little finger tremor does hit my arm, to be honest with you, or at least my hand. So, yeah, it's been a wild ride. And then there are other things, the normal stuff, like insomnia and some bowel bladder issues. Sometimes I'm a bit uncoordinated. I've had an uncoordinated day-to-day, to be honest with you. So I've been throwing apples across the room, knocking glasses over, walking into doors. I was going to prune a bonsai earlier, but I decided I wouldn't because I'll probably prune my hand as well. Yeah, that's the journey so far.
I wouldn't say I'm depressed because I know my worth. I know some people get this, but I don't have any suicidal ideation. I know my value as a person, but when the apathy hits, and I had a touch of it earlier today, it's a very numbing feeling. It's like I don't exist. It's so overwhelming. You don't want to move, talk to anyone, don't want to drink or eat. You just on a sofa, on a chair, or hiding in a corner. And it's not like when people say, I've got apathy, think, oh, you just can't be bothered. No, this is much worse than that. It's soul destroying feeling, which does pass, and you have to tell yourself, it's going to pass. The other thing I got there was a non-motor symptom is anxiety, which hasn't happened so much since I started with Ropinirole. I'm a pretty confident person. I'm the CEO of a large organization. I give a lot of talks, but I've been in meetings and want to run home. I just want to get home. I'd walk into a supermarket and feel overwhelmed or in a building like a restaurant, where there's a lot of noise. I would just want to go home and see my wife or hide. And you know it's going to pass. But that was a very unusual feeling. And of course, it's all low dopamine-related, but that's a very hard thing to deal with. So I speak quite openly about that, particularly to men, because a lot of men don't acknowledge those feelings.
I've been talking about this with a friend or two. I think one of the hardest things for people with Parkinson's, particularly when you're younger, the community of people with Parkinson's, particularly the YPD community that I'm part of, they understand what you're going through. Trying to explain that to other people, in 1 minute you can look well, and the next hour you're not. It's an hour to our fluctuating condition. And trying to explain what apathy feels like, or the fact you've just suddenly fallen asleep. It's very hard to explain. So what a lot of people do is they try and act normal in front of everyone. And I found that trying to live a normal life is actually exhausting. It exhausts you, just trying to be ordinary in front of people, because we worry that other people aren't going to understand or accept your diagnosis. Of course, when you do tell people at work or family, then people start talking and people start worrying. As a CEO of an organization, you can be in a meeting and you drop the ball on something, you make a mistake. You know, people are thinking, has he got dementia? Is that the disease? You know, why has he forgotten that? Whereas anyone else, it'll be, oh, no problem, they just forgot something. But when you're carrying this disease, people start questioning, and so the pressure is on you to try and eliminate that. Then you get home from work exhausted because trying to be normal is very tiring. Of course, that exacerbates symptoms because stress irritates the condition. So, it’s problematic.
I was speaking at a conference a couple of weeks ago, and I was walking from one side of the hall to the other, next to someone holding a coffee, and my right leg froze. So I went to step away, but my right leg didn't follow, and I fell over to the side of this person and, of course, caused a bit of mayhem. And then when I got up, I was dragging my leg and I'm a bit wobbly. People could think I'm drunk, that I've been drinking. I don't even drink, but that's what it looks like. And then, of course, your staff and people are looking at you thinking, oh, he really is in trouble. But actually, that's just a disease. The freeze is a disease. Sometimes, you know, I get out of a chair and I can't walk for a few seconds because I'm frozen, which is a very strange feeling. It's like being on the end of a high dive board and you don't want to step off. Then eventually, three, you go, one, two, three, go. Because people are looking at you thinking, what's this? Because it looks strange, doesn't it? It's a strange disease to try and understand, particularly for someone like me, who doesn't have a tremor. So I can't even point to a tremor that's existing and say, well, that's Parkinson's, which a lot of people associate Parkinson's with. I'm just like the Tin Man. Tin man needs oil.
Believer in gratitude. I try and live my life long-term now with a sense of gratitude. I'm a Christian, and so I'd spent a life praying and being in community with people and being thankful for my life. I think what Parkinson's actually has done is amplify those feelings. When I'm off and life comes to a halt. It's a horrible feeling. When I take a pill and I switch on, it's like I've come alive again and it makes you grateful for your life, actually. You know, I'm still moving, I'm still breathing. I can still smell the air, be in my garden. I'm grateful for life. I think that sense of gratitude is really important. But more than that, it's made me appreciate every moment much more. I'm not saying this is a constant state of being, because that would be a lie, but very much so for most of the time. I'm now much more tuned to avoiding drama and unnecessary hassle, getting wound up about things that have no consequence attached to them, because you're much more aware of your mortality. Even though it might not necessarily shorten my lifespan, it might shorten my effective mobility, probably very much so. So it makes you want to squeeze more juice out of life and do the things that you really enjoy. So I think for that, Parkinson's has been a blessing in many ways. I'm grateful for the additional focus that it's given me. Because I've been a community builder for many years, I'm building a Parkinson's community now as CEO, Spotlight YOPD is a UK charity for people with young onset. I'm very grateful for that. New friends, new perspectives, shared journeys, all of those things really help. I say to anyone now who's diagnosed, get plugged into a support group. Even if you weren't part of a support group before, you think these things aren't important in your life, you'll find they bring you a huge amount of richness. So I'm very, very keen on that. I'm grateful for new friends, grateful for the community, grateful for the focus it's given my life. Those are good things. And also, I think you start to make healthier choices. So the way you, what you eat and your exercise and, you know, taking vitamins and supplements, all of those things, you suddenly become much more tuned to the need to live well and to look after your physical and emotional wellness. So I talk to a lot of people who are one to five years into diagnosis. You feel that they are healthier now than they were before the diagnosis. And I think that's certainly true of me. Yeah, much more engaged with my personal health, even though I was exercising before. I have a morning routine of greens and drink lots of vitamins. You know, I'm careful about my diet and all that, you know, intermittent fast, all that kind of stuff. That's really great, actually. So, funny enough, even though it's a terrible diagnosis, and it has all sorts of horrible ramifications, there is much good that you can get out of it. I wish I didn't have Parkinson's, but there's good that can come from the journey, I think.
Really good question. I've come to a conclusion that when you get diagnosed, once the news is settled, you need to plan to change your life incrementally over the next few years. I've spoken to lots of people now over the last year, partly because of my role and partly because I'm an inquisitive person. Most people who try to keep going like nothing's changed tend to burn out after three to five years. So I didn't want that to happen to me. I'm a year into formal diagnosis, as I say, probably many years into symptoms. I've just made a decision that I'm stepping down as chief exec of the organization I founded actually, and I'm going to move into a chairman role part-time and do some other things I'm passionate about and also to create free time so that I can manage my health. There are financial consequences to the diagnosis, but I think that's something we all have to face. So for me, I immediately dropped. I was working six days a week, long hours, 80 hours weeks, 78 hours weeks. I dropped one day. I take Tuesdays as a rest day. I generally end up looking after my granddaughter, but that's a pleasure, and that's going to change further come October. So decreasing workload and eliminating things that cause acute stress. Parts of my job that were highly stressful, I'm gradually reducing now because I felt that it was really important to work on my functional longevity. I know they say it doesn't necessarily reduce your lifespan by that much, but your functional lifespan, certainly your quality of life. I've been working on increasing my functional longevity by removing stress, increasing exercise, doing peaceful things, and doing more things that bring me joy. Also, I think helping other people and serving other people is one of the most life-giving things you can do. The happiest people, the most generous people. So I think keeping giving nature is really important. Giving time, and money if you're able to, sharing food with people, listening to their stories, and helping them actually really helps you, which is why I was keen to take on the voluntary Spotlight CEO role, which has been a great joy. I'm giving more time to voluntary stuff now, spending more time with people. People can be stressful, but as you say, the YOPD community is generally really cool people. They're nice and kind. Most of us have got similar brains, actually. We're kind of quite high achievers. You know, they've got a lot of gifts across different areas. They're a really interesting group. So these things are important, I think, just to invest your life in what matters. But you have to be a bit selfish. You've got to be a bit selfish and create space. That's an ongoing thing for me, learning to listen to my body and other little things I've done. Mornings are slightly slower for me. I find it hard to get going in the morning. For some people, it's the evening. It can change, the disease can change the way it presents itself. I don't really have meetings now before half 9-10 if I can help it. Just an adjustment I've made. I generally feel quite sleepy at some point in the afternoon, so I try not to pack the afternoon out with meetings. Not everyone's in a privileged position where they can do that, but you can go part-time or, go to a role that has flexible hours. It's problematic for people who are laboring. Bricklayers, carpenters, van drivers, those kind of jobs. They can be tough to deal with. But I do think you have to plan to reduce your hours so you can look after yourself and do life-giving things. I think that's really important.
Good and bad, actually, sadly, some people don't find others around them react very well, and that's been really hard. So marriages do come under pressure. One person told me that their partner came up to them and said, I knew you'd rob me of getting our old age together and left them. That has been really tough. I think if there are cracks in areas of your life, then Parkinson's will expose that, and that's just something we have to navigate. That's the negative. In terms of the positive, the thing that struck me most, and I've sort of alluded to it already, I was quite loud about my diagnosis from day one. I'm not one to crawl under a rock. I've always run at confrontation and problems. So I announced it to the world on social media, and someone messaged me, and they said, I have YOPD. I've been journeying with it for ten years. I guarantee you you'll be a better man in a year's time if you take the right steps than you were a year before. He said you'll be healthier, happier, and more at peace with yourself. And they're absolutely right. That completely shocked me. So there's the good and the bad there. The bad is, it does expose the cracks in your life, but the good is if you make the right choices and you connect with the right people, you front this thing out and you deal with it honestly, then you will find yourself potentially in a more peaceful, happier place than you were a year before your diagnosis. That is an extraordinary thing. I can honestly say, even though I've been, as I say, a fairly joyful person, I am more full of joy and peace now than I was a year ago. So work that one out. I don't know. I think there's something about a disease that sharpens your mind and your focus.
This is a global thing, but if you're in the UK particularly, we have an online support group on Facebook. If you go to the Spotlight YOPD page, you can find all the details there. It's a private space where we do lots of online droppings with physios and Parky nurses and just have some fun together as well. Also, we just released a new podcast. We've got a big hosting team from one person who was diagnosed at age seven with Juvenile Parkinson's through to people who've just had DBS and newly diagnosed, and some specialist, medical people too. That's all to be found on Facebook. The podcast is called Y-POD “where young minds run free.” You can find out on most major podcast platforms.
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