#ThisIsMyJourney Chapter 17 – Phil Jerky’s Parkinson’s Journey

Phil Smith, also known as Phil Jerky on stage, is a comedian diagnosed with Parkinson's disease in July 2017, when he was nearly 37. Phil's journey with Parkinson's began with physical discomfort and coordination challenges, which he humorously interpreted as mere clumsiness.

After his initial disbelief and confusion, Phil adopted a resilient and humorous approach to his circumstances. He found solace in humor as a coping mechanism, using it to navigate the challenges posed by the condition. 

Phil emphasizes not allowing Parkinson's to overshadow every aspect of life. He encourages patience, self-compassion, and seeking support from understanding friends and peers who can empathize with his experiences.
Phil Smith, also known as Phil Jerky, when I'm on the stage. I was diagnosed in July 2017. I was nearly 37 when I got the diagnosis, and it wasn't on my radar at all. Not something I knew anything about. I thought Parkinson's is an old man's shaky disease, you know, didn't even think it could be that at all, not at all. It all started when I started getting pains in my right arm. I'm right-handed. Some of the dominant side is sort of from my elbow down to my hands. Every time I typed or texted or especially when it was cold, because I used to get the bus a lot. I'm waiting at the bus stop with painful hands, trying to text and think, you know, what's going on? There are other symptoms going on at the same time, but I didn't connect them. I've always been sort of a clumsy, uncoordinated person. I'm six foot three and, I was a bit like a bean pole. So I just thought I'm just a bit of a clumsy person, like, shuffling feet, struggling to get my feet off the floor, but the soles of my shoes wearing down at an angle and that sort of thing. I just put that down to me being a bit clumsy, awkward sort of thing. But anyway, yeah, the main thing was the pain. Pain, that was terrible. I couldn't ignore it. I thought I was thinking maybe trap nerve or carpal tunnel or RSI or something like that. I worked in an office. There's a lot of typing and stuff. I just thought maybe it's just for a passage of strain injury, you know?

I went to a physio, and they asked for several sessions. I think the exercises are happening very slightly, but there's something more significant under the surface. So I was referred back to a GP, and obviously, this is over a period of between first seeing a doctor about pains in my arms and getting the diagnosis. It was probably about a year and a half to two years. That's what the process felt like, narrowing down what's going on. I had an x-ray on my shoulder and my neck to see if that was related to that at all. I had needles put in my arms to stimulate the muscles, which was horrendous for me. So I'm never getting a tattoo, I'm not built. And eventually, it came down to Wilson's disease or Parkinson's disease, and that's what the consultant said they were looking at. That was the penultimate appointment with that neurologist. And it's at that point, you know, I go home and obviously, you google Wilson's disease symptoms and Parkinson's disease, and it's quite obvious from that it was Parkinson's. In some ways, that was more devastating than the final appointment because the final appointment just told me what I already heavily suspected from what I'd already been told. That was my diagnosis journey, so to speak. It took a long time. Before that, I had an MRI for an hour and a half, and then what finally gave the diagnosis was a DaTSCAN scan. 

How did you feel after the diagnosis?

I felt incredibly lost, I think, like, devastated, my world's ended because I've got this condition and I knew nothing about it. I was in a failing relationship at the time. We had a 15-month-old son, and two months after my diagnosis, my now ex said she wanted to go separate ways. So there's a lot to deal with. I just felt completely lost. I found Parkinson's UK after a couple of days, and they gave me some condolences, advice, and sympathy. I then obviously googled a lot of things and I came across Spotlight YOPD. I'm not sure if you heard of them. I sent a message to the general email address and the CEO gave me a ring back within half an hour. I was just walking up and down the street because I could never get a mobile reception in my old house at all. Not at all. So I was just walking up and down the street. Must look like an idiot. For about an hour and a half, about 10:00 at night. And it was Gaynor, and she was just fantastic at Spotlight. And it wasn't so much what was in common. It had much more to do with allaying fears. You don't need to think about that yet. And, whoa, whoa, slow down. You know, it's a progressive condition, but it's not going to get worse within a week. Obviously, I've had to think about work and looking after my son and, adaptions to the house and that sort of thing. Obviously, I've had to think about that, but I was trying to think about everything at once in my way to process it. I was one of these people. I wanted to be upfront with people, so I told people early on. I told my work early on, they were very understanding and said, you don't need to do anything now. Don't panic. Don't get me in a wheelchair next week, whatever, you know. It's just a lot to deal with. And it was great to have someone like Spotlight YOPD, who's not just able to help.

What was the most unexpected symptom of having Parkinson’s?

I guess it's the loss of sense of smell for me. I say, looking back, there are loads of symptoms that were Parkinson's and I didn't know. Everything from, you know, I just wouldn't be able to smell things. Really, really strange. Obviously, this was before COVID time, so no one was like, I've got a COVID, keep away. But it did mean that I could go into the perfume counter of a department store and not be flawed by the smells. Other things as well that made sense were horrendous for my relationship, like sexual dysfunction. I didn't know that was a Parkinson's thing. It had a huge impact on my relationship at the time. Something else that had a similar impact was my lack of ability to make things stick in my head. Memory, you know. I know how to work the washing machine. I know what you put in, what's put in. And the next day I'd be asking exactly the same stuff. But it's not just because I’m a man. Then I'd have quite a quiet voice at times, and I'd get quite frustrated because I didn't realize that what I was hearing was a lot quieter than what people were hearing. So I get quite frustrated when people think, are they deaf? Come on, you can't hear me. I'm speaking. And I wasn't at all, you know. 

I feel much more equipped now that I know the symptoms better. I don't have a routine as such. I do things when I need to, and sometimes I can't do things when I need to. You just sort of have to do the best, you know? Especially when it comes to food. It's like another takeaway or another microwave meal because, you know, it can be painful in my hand, my arms if you're stirring something. I'm not a shaky person, I'm a jerky person. I could be staring at something and something and just go, you know, decorating the walls or what's feel cooking today? Let's have a look at the floor. 

I wouldn't say I'm acing it or cracked it at all, but I'm a lot more relaxed than I have been. The thing is I don't think I'll have it in it. I'll either be at an acceptance point. I admire people who can be, but I'm not one of these people. Oh, thank goodness I've got Parkinson's. I don't get that attitude at all. I'm so grateful for the people I've met. Yeah, I'm very grateful for the people I've met. But I would trade all my friendships to not have Parkinson's. You know, that's how brutal it can be at days, you know, with the pain and stuff. I try and manage by. I guess the main thing for me is doing my comedy because it gets me out of the house. It's an excuse to get out of the house and talk to people and be sociable. And if I inform people a bit about Parkinson's and make them laugh and hate themselves for laughing at the same time, because some of the jokes are quite brutal.

How has comedy helped you cope with Parkinson's, and what inspired you to pursue it as an outlet?

I guess, for me, I've always tried to find the humor in things. It's a coping mechanism, in a way, and it served me well because I found the times I can't laugh about it is when it consumes me. For a while, it did consume me. I needed an outlet. There are not many hobbies you can do with your hands. Well, sorry, not with your hands. Most hobbies include your hands. You've still got to hold a mic, but. That has varying degrees of success, but I'm yet to do a mic drop, so that's good. 

It was one of those things where I thought, well, I've always fancied doing it, and then I get the diagnosis and everything feels more urgent, immediate. I can't guarantee to be able to do now what, in x number of years time. So, in some way, it was a good thing, because I sort of drifted and bumbled along and, you know, too told or whatever word you want to use. That gave me a sense of, right, you got to do stuff. So my mate said, well, I went to this comedy course. It gave me a lot of help with structuring things and, you know, because the brain can be a bit wild at times, like, you know, mic work and crowd work and writing jokes and that sort of thing. So I went to about twelve weeks and then there's a five-minute performance at the end and then, you know, most people just do that and it's, oh, that's a nice thing. Let's go and do a pottery class next. Obviously, I wasn't going to do a pottery class that wouldn't go well. After, I was like, right, I want to give this a go. So I found local open mic nights and stuff like that. I was trying not to do it about Parkinson's because I wanted it to be a break, you know, leave it at home and go out. I wasn't that long diagnosed. I wasn't as party as I can be now.

How do you manage your disease? Do you have any secret tips or tricks?

I listen to my body a lot more. So if I need to do something now, it's like, well, I can't do something now. I think that's the biggest thing that I miss, is being able to just do stuff whenever you want to. That's not just because I'm a parent, you know, that comes into it as well. I'm very jealous of my friends who don't have kids, and they can just put their coats on and leave the house. Where should we go? When should we start? Until we feel like coming home. What? Any day of the week? Any day of the week. Okay. So. But I had a child because I don't like money or sleep. Sorry, I was waffling. The ability to do anything whenever you want to, I miss dearly. And when my meds are off, which they fluctuate a lot throughout the day, people say, you have good days or bad days. I say, I have good bits of days and bad bits of days. That's how much my Parkinson's fluctuates. I know some people, it's fairly constant, but for me, it's very up and down throughout the day. Like, I'm off, I'm on. It's like a switch. It's not a dimmer switch, it's click-off.

How do you identify patterns that lead to on-off states?

You know, I have a friend who's very hot on, like, nutrition and stuff like that. So I've cut out, certain, well, most sweeteners, because I found that a lot of drinks now are going to, like, zero and stuff like that to cut out sugar, but they're replacing it with, like, aspartame or whatever you call it. And for me, that just knocks out my medication, and might as well not take my meds because it just has that effect. I try and cut down on sugar. Terrible. But when I was first diagnosed, I just, like, inhale chocolate. I think so much chocolate is crazy. So I'm currently keeping on sugar. Stress is the worst. I think stress is horrendous. The sense of responsibility that you're responsible for doing, making sure something is done well, whether it be work or, you know, home stuff has a big impact on my Parkinson's. Also, nerves about doing comedy can have an effect on that as well. But the biggest effect it can have on my comedy is that I get very jerky. So I just thought, well, clearly I feel jerky because that's what you are. It's a double-eyed sword. You know, I love doing the comedy. I love making people laugh, but it can be hard for my symptoms, you know? Especially afterward when the adrenaline's worn off. Like, are you alright? Yeah, I'm fine. It can be quite tricky without it. If I'm last on, and then you got to talk to audience members, which is nice. But sometimes I don't have a lot in reserve to be able to do that, especially if I get a mask face. I'm not looking interested anyway, so you can come across as bit of a diva. I've done my comedy. Don't talk to me, peasants. 

One of my jokes is, you know, I feel a bit of a fraud of Parkinson's because I don't have the one symptom that everyone seems to know, a tremor. I've got plenty of other symptoms, but it's a bit like I've got 99 problems, but that ain’t one. So it makes silly stuff like that, but it makes people aware that, you know, we're not all shaky old guys. I've had medics in my audience who said, oh, I didn't know that, or I didn't know that, so it's helpful, but also quite alarming. They didn't have a lot of training on Parkinson's. I've heard it said that there's, like, more than 40 symptoms or something, and we're all a different combination of it. But I'm yet to meet anyone who's got the exact same symptoms as me. I've come across one or two who are fairly similar. One which is, you know, as close as you can get, but I'm yet to meet someone who's got the same Parkinson's as me, so to speak. It's just such a varied condition, isn't it?

What advice do you have for someone recently diagnosed with Parkinson’s?

Don't try and think about and solve everything at once. To try and, you know, comprehend everything because it's, you know, it's a cliche, but it's a marathon, not a sprint, when you've got a slow progressive condition. I prefer the word condition to disease because disease implies that you can catch it. But I'm terrible at catching anything. But no, seriously, I mean, just don't google your life expectancy. Don't, you know, but do seek conversations with friends who get it. You know, unless they've got Parkinson's, they're not going to fully understand, as I say, even if they do, they're not going to fully understand your Parkinson's because we're all different, as I say. But my closest friends are those with conditions or people who understand that I'm not always going to have energy. Obviously, some friends who used to be close drop off and some friends who didn't used to be that close increase. But yeah, I would just say, don't try and swallow it in one mouthful. 

As I say, try and keep stressing stuff to a minimum. But it is difficult when, you know, I'm 43, I still need to work. You know, it's not like I got diagnosed at 60 and I thought, I'll just take early retirement. Not that that's an easy option, but it's a much easier option than saying, what am I going to do for the next 20 or so years? You know, I'm in a position with my work. I'm looking to drop a day a week, not based on finance, but based on the fact I'm exhausted a lot of the time. Especially in these economic times, it's hard to think about what's right for your health and then what's right for your bank balance. There shouldn't be that pressure because, you know, some days it feels ridiculous that I need to work because I can barely move a mouse or use a keyboard or think or writing a text takes about half an hour when my meds are off. So, yeah, it's tricky, but as much as I can, I try and say, well, okay, that means doing today, but I'll prioritize that for my hands are working well. I've always been into music, but, you know, music really helps. Sometimes it cuts through that, because my mood can be terrible. I can be a real grumpy. My partner says it's like she's dating two people and not in a sexy way.

How do you manage your condition? Do you have any secret tips or tricks?

The biggest barrier to that is the apathy I get with my Parkinson's. My medication can be sat right on the table next to a glass of water, and I go, and it can be like, ten or 15 minutes later, and I go, I really should take those meds. it's probably that and anxiety are my worst symptoms, I'd say, of the ones that affect me doing stuff, and my mood. The apathy for me is absolutely crazy. I could tell you more about it, but to be honest, it can't be bothered. It'd be a miss of me not to mention, check out my comedy, Phil Jerky on any social media platform. I'm terrible at self-promotion, but if I don't do it, no one else is going to do it. So there you go. There's a plug. Just try and find the humor in what can be a brutal condition at times. It seems unrelenting, but, you know, lean into the good times, the times when you're meant to work, find laughter, find comedy, and, yeah, it's serving me well.