April is Parkinson’s Awareness Month, and with more people being diagnosed than ever before, we dedicated the latest episode of our Shout! Podcast to spotlighting the disease and raising awareness within the fire services community.
We highlight some of the early signs and symptoms, hear first-hand experience of living with the disease and share how Fire Fighters Charity can offer support throughout.
We heard from Linda Parker, who works in the risk department at Lincolnshire Fire and Rescue Service. She was diagnosed with Parkinson’s last year at the age of 65, and has since been supported at Jubilee House, our centre in Cumbria.
Then, we were joined by Fire Fighters Charity’s Nursing Services Lead, Kath Savage, who talked through some key guidance around Parkinson’s and the different ways her team supports people living with the condition.
Do you work in the UK’s fire services community? Are you aware that you may be eligible for our support too? You can find out more about the support we offer below.
Please remember, our Support Line is always available: 0800 3898820. Be sure to follow or subscribe to the Shout!Podcast to stay updated with our latest episodes.
Read the full transcript:
Please note: This transcript has been AI-generated so there may be some errors.
Rebecca: Hi there and welcome back to our Shout podcast. Thank you so much for joining us. April is Parkinson’s Awareness Month and with more people being diagnosed than ever before, we’re taking some time to highlight the early signs and symptoms and to share how firefighters charity can offer support. In this episode, you’ll hear from two people living with the condition as well as our nursing services lead, who talks us through some of the ways her, and her team help people at all stages.
First up, I’m chatting with Linda Parker, who works in the Risk Department at Lincolnshire Fire and Rescue Service. She was diagnosed with Parkinson’s last year at the age of 65 and has since been supported at Jubilee House, our centre in Cumbria. Thank you so much, Linda, for chatting to me. I just wanted to start us off by asking you a bit about yourself.
Linda: Well, I’ve worked for Lancashire Fire and rescue for 17 years in the Risk department. I’m the Operational Risk Information Officer. My role is to help the risk, manager and also I do all the CAD drawings. So fire, ah, investigation drawings.
Rebecca: That’s interesting. A lot of people, yeah, may not realise much, ah, about that. What does that involve exactly?
Linda: Well, I always say, I always say that they save your life. I save their life because the, I put all the electric, the gas, the water, any chemicals, on, on the drawings so they can, on the mdts, they can, they can access that and have a look for themselves and find out where the risks are before even arrive at the, at the property.
Rebecca: Wow. Incredibly important then.
Linda: Yeah, I think so.
Rebecca: But, yes, no, that’s amazing. and just to sort of outside of work, do you have kind of hobbies that you enjoy?
Linda: Oh, I’m a crafter. I’m a, I’m a big crafter. Ah, brilliant. Yeah, I like knitting and crocheting, cross stitch, all that sort of thing. But I also do, outside of, outside of work, I do yoga and I love my yoga. it’s, she tailors it to, to my Parkinson’s as well.
Rebecca: Have you found that that’s been beneficial not only for sort of your physical health but also your mental well being as well?
Linda: Yes, it is. I mean especially one of the, one of the things that goes with Parkinson’s is you, is your balance. and she focuses a lot on balance. So at the moment I still got my balance.
Rebecca: Yeah. Everyone, everyone’s journey with Parkinson’s can look very different and many may have noticed very different signs and symptoms quite early on. for you personally, what were the first kind of Subtle signs that something felt a bit different.
Linda: my thumb started twitching, which sounds really odd, but it doesn’t normally. it just started twitching and I thought, that’s really odd. And actually I’d been reading a, ah, thing about Michael J Fox and how he noticed his. And his was the same. He noticed that his thumb was. Started shaking, and then my middle finger started to shake as well. And that’s when I decided to go and see if I could get it sorted out or find out what it was anyway.
Rebecca: Did you have any suspicions at that point or, Were you just a bit confused what it would be?
Linda: I was hoping it wasn’t, but I kind of suspected it was, just because of what it was. It could have been anything. Originally they’d said it could be, essential tremors, which it turned out it wasn’t. It was Parkinson’s.
Rebecca: Yeah, I know that can take a while to get that diagnosis, but when you. When you did kind of get the official diagnosis, I imagine it was incredibly emotional. difficult moment for you to get your head around that. How did you kind of process those first few weeks? Was there, any ways that you found it helped you?
Linda: I’ve had a few illnesses throughout my life and the one thing I found is there’s not a lot I can do about it. And when I can’t do anything about it, what’s the point of me worrying about it? Because there’s nothing I can do about it. So I. Yeah, I just try and make the most of what I’ve got left, really. I mean, I don’t know what’s coming up in the future. I suspect what’s coming up in the future, but, it’s not there yet.
Rebecca: No. That’s an incredible way. Incredible way of looking at it and coping with it, I think. And do you have kind of a support mechanism, family and friends around you who you are able to talk to as well?
Linda: Yes, absolutely. My husband’s been absolutely brilliant. he points out things, things that I maybe don’t notice, which is. Which is really good. But he, he will. I mean, one of the things I found is that I have started in the afternoon. I get very, very tired and he noticed it first that I was starting to lag in the afternoon. even with medication and everything else, I still lag in the afternoon. So he, he will actually stop me from doing any more.
Rebecca: A lot of people, may notice things in yourself that you don’t notice yourself. So I, can imagine that that can be really, really helpful. And did you. Again, it’s a personal choice, I think, sometimes with things like this, but did you find talking openly to your colleagues quite early on was helpful as well, or did you hold it back from people around you?
Linda: I. I didn’t hold it back. I really didn’t see the point in holding it back. people were going to see that I’d got a shake and it was only going to get worse. And the one thing I didn’t want them to do was think I had. I was. I was an alcoholic or something like that. I mean, I don’t really drink anyway, but I really didn’t want them thinking something that wasn’t there. So I thought, right, tell them. They know what it is. They’ll cope with it. And they really have. And they’ve been so supportive by doing that. And anything, you know, if I’m struggling with anything, they’re in there like a shot to help me out. So. Yeah, that is brilliant.
Rebecca: That’s fantastic. That was actually leading me on to my next question. Have there been some adaptations that you’ve been able to make, both at work and at home, that have made things easier?
Linda: Not so much at home, but definitely at work. Because the one thing I was finding, on a mouse, your hand is upright. And my hand would just shake when it was. So. So I was going. Instead of clicking, once, I was clicking 15 times, that type of thing. and the same with the keyboard. I was having problems with the keyboard. they did a DSE evaluation on me and they found that they found these out as well about the mouse and the keyboard. So I’ve actually now got an ergonomic keyboard and an upright mouse, which actually is absolutely fantastic. And a few people have said, oh, what’s that mouse like? And they’ve tried it and they’re, oh, I want one of these. This really helpful.
Rebecca: Has it been. Has it been a few years now since you first noticed those very first symptoms?
Linda: It’s been three years since I noticed the first. The first difference, since the shaking started. and it has got worse.
Rebecca: Oh, well, that was. Yeah. I was going to just ask what are the kind of daily things that you notice now? in. Yeah, in yourself.
Linda: As I say, it started off in my thumb and my middle finger. It’s now all the way up my arm and down my back and in my left leg as well. So I shake my left Leg, shake up my back and shake up my. On, my right arm and I’m right handed to make it even worse. Yeah.
Rebecca: Do you, do you, do you notice issues with kind of your mobility at all, or do you get tired a bit more easily when you are moving around a lot?
Linda: I do find that I get tired a lot quicker. I, I mean the one thing they say about packages is exercise, exercise, exercise, because it is good for you. So I try to do as much as I can, probably don’t do as much as I should do. And Yeah, but if, I mean if I go for a walk, I go so far. And then on the way back I’m. I’m hanging a slightly rather than sort of thinking, oh, I’ve nearly got there and I’ll get there in a minute.
Rebecca: I know, from sort of previously speaking to you, Linda, that you, you knew about firefighters charity for quite a few years, whether that was through seeing colleagues who’d been helped and that kind of thing. how did you kind of first, get in touch with us, and think to get in touch with us about this?
Linda: I think it was the people at work that encouraged me to, get in touch to see if there was anything they could do to help. I mean, they said they might not be able to help you. The chances are, ah, they will. I went on the website and filled, filled the document, you know, the form in, sent it off and within a couple of days I got a reply saying, yes, I’m sure we can help you. what dates have you got available and what dates have we got available? And we matched up in January this year and I went there in January and it was brilliant.
Rebecca: Was it Jubilee House you went to?
Linda: I went to Jubilee House in Penrith, yeah.
Rebecca: For anyone listening, we’ve got a. We’ve got a dedicated nursing team up at Jubilee House, as well as, the physiotherapy and exercise therapists. did you have a combination of both? Were you having support kind of from the nursing team but also from the physio team?
Linda: Yeah, they were both. Absolutely. Couldn’t fault them at all. They couldn’t do enough for me and the others that were in the same position. Yeah, that’s brilliant.
Rebecca: What kinds of things did you find kind of particularly useful during the week or was there anything that you really connected with?
Linda: We went to. Well, one of them was the hydrotherapy pool and yeah, I want one building in the Garden. It was absolutely wonderful. I don’t think my husband will have it, though. But, yeah, keep pushing. I’m gonna keep trying. and there was the, the gym. In the gym, we went on the bike and we’re doing stretches and, and sort of working on particular muscles because when I’m shaking, I’m. I’m tensing up on one side. So what they were trying to do is loosen those muscles off, and get me working them properly so that I wasn’t sort of putting my. My elbow in. My elbow, my shoulder into my ear type of thing. So. Yeah. And, we did some yoga. Okay. And some strength work, some core work and things like that. So, yeah, your core’s very important, obviously. So, yeah, they worked on my core.
Rebecca: Fantastic. And did you. Did you meet other people during your time there that, you were able to talk to and share experiences with?
Linda: Oh, everybody. Everybody there is absolutely wonderful. But, yeah, there was a young man in the, room next to us and he had Parkinson’s. and he was. Yeah, he was very chatty and very nice and. Yeah, and we spoke a bit, but his was different from mine. His affected him slightly differently. and then there was a lady across from us who had a brain tumour who was in, getting some treatment. Oh, she was fantastic. She had such a sense of humour. Yeah, you just think people, you know, cope with things in different ways, but.
Rebecca: Yeah, I think that’s so true. I think people have such different, different coping mechanisms and. And also, like you said, people deal with, different diagnoses in different ways as well. So, I’m sure that was really interesting just to hear people’s, experiences. for someone who is maybe newly diagnosed, who’s just found out that they’re living with Parkinson’s, how would you describe the value of connecting with the charity early on? and just looking at that support,
Linda: I can’t really describe it because they did so much for me in such a small amount of time. I was there from the Monday till the Friday and they were. They just could not do enough for me. They really concentrated on what was needed for you. And they, they’d obviously researched Parkinson’s. they. They knew the group, the muscle groups to work on and the nurses were just fantastic. I mean, every time I came back. Would you like a hot chocolate or. Yes, please. Of course. As if I’d say no. Who would. Who would.
Rebecca: Oh, no, that’s lovely. I’m really pleased that you were able to kind of see the benefits of the different teams there. And they were able to.
Linda: The one thing I keep saying about them is they treated me like a queen. They, they, I, they could not do enough for me.
Rebecca: Say, was your husband able to attend as well and just have that break for himself?
Linda: He did, he came with me. he was, yeah, he’s a, he’s a software engineer. So he was actually in the, in the room doing some work for himself. Well, you know, for himself, not for work work. but yeah, he’s really encouraging and very helpful. But he went to all the meetings, you know, the meetings that they do, at the, at the, fight at the Penrith and yeah, he attended all of those and he found them very useful for himself, let alone for me.
Rebecca: No, that’s really important. I think sometimes for. If there’s someone at home who’s going through this with you to, know that there’s support there as well. Are there any things that you maybe wish more people understood about living with kind of the early stage Parkinson’s?
Linda: Main thing is go and get, if you suspect something’s wrong, go and get it looked at straight away. It takes a lot, a long time from going first to your doctor to actually being diagnosed. I mean, mine was, as I say, nearly three years, to get diagnosed. So it takes that amount of time to, to, for them to go and do it. And as far as the, the firefighters charity. Get in there, get, get, you know, put yourself forward.
Rebecca: I know I’ve spoken to a few people as well who kind of said they always had assumed Parkinson’s was something you get much later in life. do you think that was something that you’d always thought?
Linda: Yeah, well, I mean, I’m, I’m 66 now, so I was 63 when I was diagnosed. well, not when I was diagnosed, but when I first started. And yeah, you, you don’t, you know, it’s, it’s not for me, it’s for somebody in their 80s. But, no, you find that when you talk to other people, you find people in their 50s and 40s that have got it. So, yes, it’s not just old age pensioners, I’m afraid.
Rebecca: And just finally, if you could speak, if someone was listening, who’s maybe just received their diagnosis, is feeling quite overwhelmed, what would you want them to hear? Is there anything that you would want to say to them?
Linda: You can’t do anything about it. You’ve got to let the hospital sort you out. make sure that you make notes when you Go to the hospital, make sure that somebody is with you, because you never hear the whole conversation. Somebody else with you will hear the other part of the conversation that you. You don’t hear. and, yeah, and just look after yourself.
Rebecca: That’s fantastic advice. Thank you so much, Linda. you can find more information about Parkinson’s as well as our nursing support through the links in the show notes. Finally, I was joined by Fire Fighters Charity’s nursing services lead, Kath Savage, who talked through some key guidance around Parkinson’s and the different ways her, team supports people living with the condition.
Kath: So, my name is Kath Savage. I’m nursing services lead for the charity. I’ve been with the charity for about 12 years. and essentially I manage the nursing services for the charity and I’m based up at Jubilee House.
Rebecca: Perfect for anyone who’s not aware. Jubilee House, we’ve got a centre up at, ah, Penrith. and that is our, one that has nursing services. We’ve also got two more centres down in Devon and Littlehampton. what does that. It’s probably very difficult for you to say, actually, but what does a typical day look like for you? if there is such a thing?
Kath: Yeah, so you are right, it is hard to say what a typical day looks like because every day is different. You know, you can’t, you can’t predict what’s going to happen, really. so. So as a team we, we are here 24 hours a day to support any service user who needs support, to take part in a physical programme. I guess that support can be anything like helping with perhaps medication management and making sure that they’re sort of fed and watered and supporting with any sort of mobility issues as well. As I said, we work over a 24 hour period so we work shifts, and our support does and often extends, throughout the night. I think what is really important about what we do is that we’re able to kind of offer that like a listening ear to our service users and their partners. So we’re not just supporting with their physical well being, it’s their emotional well being as well. And we work really closely with, with our physios and our exercise therapists, to ensure that our service users have a bespoke physical programme so a programme that meets their needs at that particular time. So certainly with Parkinson’s. So things like, medication regimes and fatigue can be something that we really need to make sure that we take into account when we’re designing that physical programme. we know from the feedback that we’ve had from our service users that they also benefit from the social and emotional aspects of a stay at a centre. And as well as the physios and exercise therapists, we work really closely with our welfare team. So, for our service users, perhaps in the later stages of the disease, they may need to consider making changes at home in terms of AIDS and adaptations. they might need help navigating the social care system, or they might need help to make sure that they’re accessing appropriate benefits. I guess all of which is sort of vital in living with a disease like Parkinson’s.
Rebecca: Hugely, hugely varied support then. That’s incredible, incredible to hear. What are some of the early signs? I mean you must have seen so many different individual cases, but what are some of the, I’d say common or more common early signs of Parkinson’s that people or families may overlook at an early stage?
Kath: Yeah, it’s, it’s hard. With some of those few early signs they often get attributed to, sort of people getting older if you like, or maybe stress or sort of lifestyle. but there are some things that perhaps after somebody has had a diagnosis when they might look back five or so years, they might or recognise those symptoms as Parkinson’s. So things like, a slight shuffle, can often be an early sort of motor sign, as well as, reduced arm swing on one side constipation can often be overlooked as an early sort of autonomic sign. and it can also be, quite a significant symptom relating to the treatment of Parkinson’s as well. somebody who’s maybe got a soft, quiet voice or maybe like an expressionless face, that can often be overlooked as, maybe somebody who’s tired or low in mood, but it can be one of those early symptoms that gets overlooked and sleep disturbances is another. and again, that can often be attributed to maybe stress, or lifestyle.
Rebecca: What are sort of some of the more common challenges that people might face, as the condition, well, as the disease, should I say, progresses. And how, how does the nursing and rehab teams sort of help them manage that?
Kath: Yeah, so I guess some of those common challenges in sort of the later stages of the disease, we often find around sort of movement difficulties, like, you know, mobility, so increased balance issues that might also be coupled with some of the common Parkinson’s symptoms, like shuffling and freezing. symptoms around medication can be another challenge. So, monitoring symptom patterns and ensuring that they’re taking their medication at the right time, that then maximises their function. fatigue can be a huge challenge for people. And that’s not just physical fatigue, that’s kind of cognitive fatigue as well. So, you know, we very much, educate around pacing, we encourage rest, and sort of ensuring that people are, you know, well fed and that they, they’re sort of hydrated while they’re with us as well, because all that kind of will have a, an impact positively on their symptoms as well. And things like communication and swallowing can often become common challenges. and I guess it’s important to say that whilst we’re not speech and language specialists, you know, we can, we can sort of educate in small ways and if, you know, if we need to, we can suggest, like, a referral to speech and language therapies. But, you know, we’ll work closely with our catering team just to make sure that, like, menu choices are appropriate. and if they’re not, then we’ll work to find a solution for something that might be more suitable.
Rebecca: I mean, can you actually share an example at all, of a moment where that sort of tailored nursing support made a meaningful difference for someone?
Kath: So actually a service user fed back fairly recently that, you know, actually the support that we offered him reminded him what he could do rather than what he couldn’t do. His focus had been very much on the things that he couldn’t do and actually his, his stay sort of reinforced the things that he could do. And whilst he realised that then he had to go home and, and make some general tweaks at home, he kind of was going home, more invigorated and feeling more independent. and I guess the other thing that we hear a lot from service users is that, ah, they, whilst they tell us what we do for them is really important, actually what we do for their partners is often more profound in that, you know, it allows them the opportunity to take a break and have a rest, and
Rebecca: just finally, if you could share sort of one message with people who’ve maybe been newly diagnosed and just facing that diagnosis, getting, Coming to terms with it, what, what would that be?
Kath: So I would say don’t delay. Get in touch as soon as possible. you know, we can start our tailored support from those, early stages from that early diagnosis that we know we can start to build up, a relationship with them and not just with them, as we’ve said, with their loved ones. Parkinson’s is a journey and people have to learn to live with it and we can be there to support them on that journey through that progression of the disease.
Rebecca: A huge thank you to Linda and Kath for sharing their experiences with us. And just a reminder, whatever your role in the fire and rescue service, our support is here for everyone working in or retired from the fire service, as well as their loved ones. You’ll find links in the show, notes to our website and the different ways you can get in touch. If you’d like to tell us about your own experience, there’s information there on how to do that as well. Thanks for tuning in. We look forward to having you with us again soon.