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Transcript — Programme 127: Pain Management & Taking The Sting Out The Tail Of Neuropathic Pain

Exam­in­ing mis­con­cep­tions about Parkin­son’s Dis­ease and neu­ro­path­ic pain, and dis­cussing how best to man­age per­sis­tent pain.

To lis­ten to the pro­gramme, please click here.

This edi­tion of Air­ing Pain has been fund­ed by a grant from The RS Mac­don­ald Char­i­ta­ble Trust and The Stafford Trust.

Do you, some­one you care for or per­haps your patients, suf­fer from per­sis­tent burn­ing or gnaw­ing pain? Many don’t know that often, neu­ro­path­ic pain presents as a burn­ing sen­sa­tion. Per­sis­tent pain can impact all areas of our lives. It can stop us from sleep­ing, work­ing and pur­su­ing the hob­bies we enjoy. Unfor­tu­nate­ly, some­times the health­care pro­fes­sion­als we see about our pain are unaware of the mul­ti­tude of pain man­age­ment tech­niques we can adopt to try and min­imise the impact pain has on our lives. Dif­fer­ent types of pain are wide­ly mis­un­der­stood and many of us don’t know much about the con­di­tions that can cause them. 

What do you think of when you think of Parkinson’s dis­ease? Many would say a tremor or shak­ing limbs, but per­sis­tent pain can be one of the most debil­i­tat­ing symp­toms of Parkinson’s dis­ease. The fastest grow­ing neu­ro­log­i­cal con­di­tion in the world is poor­ly under­stood and pain is a major unmet need in those who live with it. Ground-break­ing stud­ies fund­ed by the char­i­ty Parkinson’s UK are shed­ding new light on the rela­tion­ship between Parkinson’s pain and neu­ro­path­ic pain. 

In this pro­gramme, Paul Evans speaks to Kirsty Ban­nis­ter, a doc­tor of neu­ro­science at Kings Col­lege Lon­don, who dis­cuss­es the role that ‘pain-block­ing nerve path­ways’ and psy­cho­log­i­cal sta­tus play for those who expe­ri­ence chron­ic pain. We also hear from for­mer pri­ma­ry school teacher Janet Kerr, who shares with us her own expe­ri­ence of deal­ing with Parkinson’s Pain and how she man­ages it with things like yoga and dis­trac­tion tech­niques such as massage. 

Issues cov­ered in this pro­gramme include: Parkinson’s dis­ease, insom­nia and sleep clin­ics, burn­ing and gnaw­ing pain, pain sig­nals, bio­me­chan­ics, stress/psychological states and their impact on pain, anal­ge­sia, bradyki­ne­sia, gabapentin, pre­ga­balin and man­ag­ing chron­ic pain.


Paul Evans: This is Air­ing Pain, a pro­gramme brought to you by Pain Con­cern, the UK char­i­ty pro­vid­ing infor­ma­tion and sup­port for those of us liv­ing with pain and for those who care for us. I’m Paul Evans, and this edi­tion of Air­ing Pain is fund­ed by the RS Mac­Don­ald Char­i­ta­ble Trust.

Janet Kerr: If I was to walk around with a gri­mace on my face of how I tru­ly feel inside, I wouldn’t want to be with me. But I’m sit­ting here and the leg is shak­ing, but it’s also on fire.

Dr Kirsty Ban­nis­ter: Con­stant pain is a poor­ly under­stood and a major unmet need in peo­ple with Parkinson’s disease.

Evans: The ban­ner head­line you read on the Parkinson’s UK web­site at parkinsons.org.uk is blunt. Parkinson’s dis­ease is the fastest grow­ing neu­ro­log­i­cal con­di­tion in the world and cur­rent­ly there is no cure. But, and it’s a big but, we’re get­ting clos­er to major breakthroughs.

Ban­nis­ter: This grant got award­ed in Novem­ber, so Ray and I cel­e­brat­ed as much as we could in lock­down because we real­ly believe that this is going to be a project that is going to make a real difference.

Evans: Parkinson’s dis­ease is a con­di­tion in which parts of the brain become pro­gres­sive­ly dam­aged over many years and I think what most peo­ple would asso­ciate with Parkinson’s dis­ease is tremor, or uncon­trolled shak­ing, of the limbs. Car­ol Ven­nard is Clin­i­cal Nurse Spe­cial­ist in Parkinson’s Dis­ease at the Queen Eliz­a­beth Uni­ver­si­ty Hos­pi­tal in Glasgow.

Car­ol Ven­nard: That is a mis­con­cep­tion because I do an edu­ca­tion­al talk and what I have named it is, ‘All that tremors is not Parkinson’s, and Parkinson’s does not always tremor’. About a third, if not slight­ly more, of the patients do not have a tremor. It is one of the three signs but you often get patients who don’t have tremor at all. So that can make it dif­fi­cult because often patients will go the GP and the GP will say, ‘Oh you’ve got a tremor, you might have Parkinson’s’. But it could be some­thing else, so you always have to keep that in mind.

Evans: What are the oth­er two signs?

Ven­nard: So, rigid­i­ty. Stiff­ness in mus­cles, and what we call bradyki­ne­sia which is slow­ness. And often if you ask them about it, they’re not real­ly that aware. But I often use the analogy‑, well, when we could go on hol­i­days [laughs], peo­ple will often say to you, ‘Well, I noticed it two times of the year’. At Christ­mas-time, if it’s a woman, because when she’s gone to write the Christ­mas cards she’s noticed that her writ­ing is a bit small­er, because we don’t write very much now and that is one of the times of the year when it becomes more appar­ent. Or the oth­er time is, ‘We were on hol­i­day’, and often peo­ple go to the same place on hol­i­day, ‘and last year my husband/wife was able to keep up with me and this year they’re not’.

It’s some­times some­thing they’ve not done for a while that makes it obvi­ous something’s not right. It’s often sub­tle things that change, and unless you’re in that frame of mind and putting all the bits of a jig­saw puz­zle togeth­er it can be very dif­fi­cult. We often get patients referred to us who have been sent by their GP to see phys­ios because they were told they’ve got a frozen shoul­der or they’ve got ten­nis elbow and it turns out it’s not, it’s just an ear­ly sign of Parkinson’s.

Evans: Clin­i­cal Nurse Spe­cial­ist in Parkinson’s Dis­ease, Car­ol Ven­nard. Janet Kerr is an ex-pri­ma­ry school teacher and she has Parkinson’s disease.

Kerr: I believe I start­ed to devel­op sub­tle symp­toms in my ear­ly 40s but I was offi­cial­ly diag­nosed at forty-six, after going back and for­ward to the doc­tor for years. And the very first thing that I went to him about was pain. Now, if you go to a doc­tor and say you’ve got pain, the last thing they’re going to think is, ‘this person’s got Parkinson’s’. But for me it was my first symp­tom, and the symp­tom that is still with me and is the bane of my life. It’s some­thing that’s there all the time, there’s no respite from it. I score it on a scale of one to ten. Very rarely am I under a five. My hus­band will say, ‘How are you scor­ing today?’ and I’ll say ‘I’m an eight, nine’. Some­times I’m a ten and it’s at the fore­front of my life.

At first, it felt like a trapped nerve which is stingy and nip­py and cut­ting and bit­ing. It’s a nasty pain, it’s not a dull, throb­bing pain. It is a real­ly stingy, nip­py, hot, burn­ing sen­sa­tion. It start­ed in my low­er back and my hip and my groin and then it just seemed to progress on down my thigh. When I went to the doc­tor, I think he thought of sci­at­i­ca, but that goes down the back of the leg. This was going down the front of my leg. Occa­sion­al­ly, it goes down the side of the calf and down to the foot.

Evans: Is there a prob­lem with diag­no­sis in pri­ma­ry care?

Ven­nard: I think if you had asked me that ques­tion twen­ty years ago, I would have said pos­si­bly. I think now, because of the edu­ca­tion that is done around Parkinson’s by myself and all the oth­er PD nurse spe­cial­ists up and down the coun­try, we teach in edu­ca­tion­al cen­ters, so uni­ver­si­ties and col­leges, and we speak to stu­dent doc­tors, stu­dent nurs­es, stu­dent phys­ios, stu­dent OTs [occu­pa­tion­al ther­a­pists]… And there are many more Parkinson’s clin­ics now than there were before so doc­tors com­ing through are exposed to it more than they were, say, twen­ty-five years ago. So, if you look at it that way, they’re more like­ly to think about it because they’ve seen it, or they’ve attend­ed a clin­ic when they’ve been doing their train­ing, or someone’s been and spo­ken to them about it.

I think the oth­er thing that some areas strug­gle with is the wait­ing times between when patients are referred into a ser­vice and when they’re actu­al­ly seen. It’s a bug­bear of mine that often patients are referred to neu­rol­o­gists, who are great, but they’re not the be all and end all of Parkinson’s care. If you’ve got a sev­en­ty-year-old who’s got Parkinson’s dis­ease, they need to be seen by a mul­ti­dis­ci­pli­nary team and they’re often with­in elder­ly care units. Lots of geri­a­tri­cians do Parkinson’s as a spe­cial inter­est, so it’s them that are run­ning the clin­ics. And I’m nowhere near a geri­atric but if I was to have Parkinson’s that’s where I would want the cen­ter of my care to be. But I don’t nec­es­sar­i­ly know that you would want that if you were twen­ty or twen­ty-five years of age.

Kerr: I wouldn’t even take a parac­eta­mol when I was ill. If I had a sore head, I had a sore head. I was not a pill-tak­er at all. So, when I, almost lit­er­al­ly, crawled into the doctor’s surgery because I’d had the pain for a cou­ple of years, it was one of those things where you think, ‘Oh I’m a hill-walk­er, I do a wee bit of exer­cise. It’s a trapped nerve and it’ll go away’. I was train­ing; I had a career change and I was train­ing to become a teacher. My hus­band said, ‘If you don’t get up to the doctor’s, I am going to throw you in the car myself and take you up there’. I think I just had it in my head that it was going to go away. Two years lat­er it hadn’t. So, he gave me gabapentin and I had to try it for a few weeks. I went back and said, ‘Look, it’s not touch­ing it’. He would up the dose. We had a bit of toing and fro­ing until I hit a dosage lev­el that took the sting out of the tail, that’s how I described it. I end­ed up going on to the top dose with a base­line of eight parac­eta­mol [dos­es] a day. And it did work ini­tial­ly. Then I noticed that I was in so much pain. I was describ­ing it as a lev­el ten and that’s whilst I was on the gabapentin. I thought, ‘I’m cry­ing myself to sleep here’. Because some­times it just becomes over­whelm­ing that you put on a brave face and you try your hard­est to just car­ry on with life. But occa­sion­al­ly it just over­pow­ers you and I’d end up crum­pling into a heap and I’d just cry. I start­ed to wean myself off it and after a few months I came off it alto­geth­er because it wasn’t work­ing for me.

Ven­nard: If I have a Parkinson’s patient who’s com­plain­ing of pain, one, it might not be the Parkinson’s that’s caus­ing it so you always have to rule out oth­er things. Two, a real­ly good his­to­ry of type of pain. Is it stab­bing? Is it there all the time? Is it gnaw­ing? What time of the day is there? Or is it in the morn­ing? Does it come and go? What helps it and what doesn’t help it? What­ev­er anal­ge­sia they may hap­pen to be on, are they tak­ing the cor­rect dose? Because one of the big things I get is, ‘My GP gave me co-codamol and it’s not help­ing’. And I’ll say to them, ‘How many are you tak­ing?’ ‘Oh, I’ve just tak­en one twice a day’. Well, that’s not the cor­rect dose of co-codamol. So, the first thing I’ll say to them is, ‘Well, if you go back to your GP all they’re going to say to you is you’re not tak­ing the right amount. You need to get your­self up to the right amount and then if it’s not work­ing you can go back and say, “I’ve had this and it’s not helping”’.

Some­times it’s not anal­ge­sia that they need. It might just be that they’ve got a bit of mus­cle cramp, or a bit of dys­to­nia because their Parkinson’s med­ica­tion is wear­ing off. So that’s why it’s real­ly impor­tant to get a good his­to­ry from the patients. But the con­sul­tant I work with is very good. He’ll take them so far and then think, ‘Do you know what, this is not work­ing. They real­ly need a bit more help’. We also use the pain clin­ic. But some­times the wait­ing list for the pain clin­ic can be long, so at least we can start to do things while they’re wait­ing on that and then if the appoint­ment comes in and they don’t actu­al­ly need it that’s fine, they can can­cel it. Rather than fid­dling about, for want of a bet­ter word, and then six months down the line they’re no bet­ter and then we put the refer­ral in. We would rather do that ahead of time and try and manip­u­late ther­a­py while we’re waiting.

Kerr: I went to the pain clin­ic. I had an appoint­ment there for six weeks and it’s where you see all dif­fer­ent spe­cial­ists. And they don’t just con­cen­trate on pain; they look at sleep, dif­fer­ent med­ica­tions, and devices like a TENS machine. I end­ed up buy­ing one of those to see if that would help. Lit­tle acupunc­ture things you can put in your ear… Noth­ing was work­ing, but what the pain clin­ic did was; sleep is an issue. It can be a symp­tom, for peo­ple with Parkinson’s, that they don’t sleep very well. There’s a lot of insom­ni­acs in Parkinson’s. We seem to sur­vive on‑, well, I sur­vive on aver­age on four hours’ sleep. So, I used to fight against it and it used to stress me. Which pos­si­bly was not con­ducive to sup­press­ing pain when you’re in a state of stress as well. But it was because I was think­ing, ‘I’ve only had three hours’ sleep and I’ve got to get up and teach a class of thir­ty-odd chil­dren and cope with this con­di­tion’. The sleep clin­ic had said, they taught you about the sleep pat­terns. They asked, ‘How much sleep do you need?’ and we all sort of said, ‘Sev­en or eight hours’, and he said, ‘Well, who said you need that?’ They said if you have four hours then it’s obvi­ous­ly qual­i­ty four hours that you feel enough to func­tion through­out the day. Four hours is all your body needs. And I thought, ‘Do you know what, I’ll just make peace with the fact I don’t sleep’. That was like a light­bulb moment.

That did actu­al­ly change my qual­i­ty of life, just com­ing to terms with the fact that it’s okay to have four hours’ sleep. It’s not an issue, don’t make it an issue. If you’re mak­ing it an issue, you’re stress­ing your­self out. We had a chance to speak to a phar­ma­cist as well. So, the phar­ma­cist tried me on the sis­ter drug of gabapentin which is called pre­ga­balin. It didn’t do any­thing at all, it didn’t even take the sting out of the tail. But it was good to be able to have a one-to-one ses­sion with these spe­cial­ists. They real­ly did want to help, and I had a ses­sion with a physio. But since then, I’ve been try­ing med­i­ta­tion, hyp­nother­a­py and mas­sage. They’re not real­ly help­ing to elim­i­nate the pain or any­thing like that. They’re a dis­trac­tion, and they feel good at the time.

Evans: So the pain is still there, but it’s help­ing you man­age that pain?

Kerr: Yes. It’s just giv­en me a lit­tle bit of respite to think about some­thing else.

Evans: We’re record­ing this in the mid­dle of the sec­ond lock­down cri­sis in Feb­ru­ary 2021. So, even though you’re in Fife and I’m down in South Wales, a cou­ple of hun­dred miles away, we can do this over a video link. Now I can see that you’re smil­ing. You don’t look like some­body in pain. Do you think that’s a problem?

Kerr: If I was to walk around with a gri­mace on my face of how I tru­ly feel inside, I wouldn’t want to be with me [laughs]. But I’m sit­ting here, and the leg is shak­ing, but it’s also on fire. And my hand‑, I’m try­ing to think what I’ve done today. I’ll be quite hon­est; it’s called putting a brave face on it, and the only per­son that tru­ly sees what hap­pens is my hus­band. But if I was to sit and go, ‘Oh God, oh ow, oh ow!’ it doesn’t make for good lis­ten­ing shall we say! [laughs]. But you’re not the first per­son to say that. But nor­mal­ly what hap­pens is, and I can assure you this’ll hap­pen because I’ve been sit­ting for a while, I am going to be in agony try­ing to get up and what I’m going to have to do is roll myself onto my side — well, I’ve got a chair next to me -, almost go on all fours [laughs] to be able to stand up. Because this is the longest, I’ve sat for a long time, but it’s because we’re sit­ting doing this inter­view [con­tin­ues to laugh]. There’s a social thing as well, Paul. If I’m in somebody’s com­pa­ny, I try my hard­est not to tremor and move about, because I feel embar­rassed by doing that, but there’s con­se­quences for doing that as well. So, the con­se­quences are I’ll do my ‘ouch’ and my ‘oh no’, I’ll do all that, when you don’t see it.

Evans: The oth­er thing about that is that, if you and mil­lions of oth­er peo­ple who have chron­ic pain, if we wear our chron­ic pain on our faces, in many ways it’s the pain that defines us, not who we real­ly are. That is our iden­ti­ty, pain is not our identity.

Kerr: That’s exact­ly the case. The fact that I don’t sit on the couch, the fact that I’m try­ing to be proac­tive, I’m try­ing to be a proac­tive host of my Parkinson’s, I’m try­ing to be a proac­tive host of the pain rather than a pas­sive host that gives up. I still feel that in order to have as best a qual­i­ty of life as I can, I have to move. It’s as sim­ple as that. And if it means hav­ing an inter­view or speak­ing with peo­ple with a paint­ed-on face that’s not express­ing the pain, or the sting­ing or nip­ping or burn­ing that’s going on, that’s how I’m learn­ing to cope with it. It’s how I’m learn­ing to lead as nor­mal a life as pos­si­ble, a social­ly-accept­able life, because if I met peo­ple and just mumped and moaned about my pain, they would nev­er want to see me again. But, every now and again, they do say to me, ‘Oh Janet, are you alright?’ because I do let my guard down occa­sion­al­ly when, you know, I’ve had no choice, I haven’t meant it. They do show care and con­cern but I’m sure if they had that all the time, that’s not the fun Janet I want to be!

Evans: Health pro­fes­sion­als have tra­di­tion­al­ly tend­ed to treat peo­ple with Parkinson’s dis­ease as if the pain is caused by mus­cle, joint or mobil­i­ty issues. Now, neu­ro­path­ic pain is pain result­ing from when the nerves don’t work prop­er­ly and send the wrong sig­nals to the brain, and this is dif­fer­ent from pain caused by, for exam­ple: a pulled mus­cle, a sprain, or indeed Parkinson’s‑related mobil­i­ty prob­lems. You can find out more about neu­ro­path­ic pain in Air­ing Pain 116 on the Pain Con­cern web­site, which is painconcern.org.uk. Here’s Janet again:

Kerr: My first symp­tom was pain. So, I didn’t know I had Parkinson’s for a few years after hav­ing the pain. I start­ed to devel­op a log-like leg and a heavy foot, and my leg stride was short­en­ing, so the pain was mak­ing me limp. And because the leg stride had short­ened and because it’s only on one side, there is bio­me­chan­i­cal issues that devel­oped. So the bio­me­chan­i­cal issues come with their own issues and own prob­lems where there’s pain. For exam­ple, my foot doesn’t flex prop­er­ly. So when I try it, it’s quite painful, so I do avoid walk­ing. I can’t walk dis­tance at the moment because it’s just too painful. If I move the wrong way it’s a sharp pain, but it’s like a stiff­ness as well. When I try to stand up, it takes me a lit­tle bit longer at the moment, but I do make lots of old man nois­es! [Laughs]. And I don’t mean that in a- [laughs], I sup­pose I should say old lady nois­es too, because things are not as nat­u­ral­ly flow­ing. I’d said to the doc­tor, ‘I know I’ve had x‑rays. I know I’ve had scans. Can you please send me for an x‑ray?’ I was con­vinced there was some­thing not right there. And the x‑ray came back fine. And I was just like, ‘How? What? I can’t under­stand how I am in so much pain and for noth­ing to show up?’ And my doc­tor said, ‘Right, for neu­ro­path­ic pain we can do this’. And that was five or six weeks ago and that’s the first time somebody’s ever called it neu­ro­path­ic pain. I’ve always called it Parkinson’s pain.

Evans: Well, ground­break­ing stud­ies fund­ed by the char­i­ty Parkinson’s UK are throw­ing new light on the rela­tion­ship between Parkinson’s pain and neu­ro­path­ic pain. Dr Kirsty Ban­nis­ter is a doc­tor of neu­ro­science at King’s Col­lege, Lon­don. Her area of research and exper­tise is in the under­stand­ing of why pain becomes chron­ic or per­sis­tent. A study she’s just embark­ing on comes under the catchy name of ‘Inves­ti­gat­ing the Somatosen­so­ry Phe­no­type of Peo­ple with Parkinson’s Disease.’

Ban­nis­ter: Your somatosen­so­ry phe­no­type is real­ly… it’s your sen­so­ry pro­file. If I place a feath­er on your hand, does that hurt, or not? If I was to bang your hand with, this isn’t part of the test by the way, If I was to bang your hand with a cer­tain kind of force, does that hurt or not? So, your sen­so­ry pro­file is how you, as an indi­vid­ual, respond to a non-painful, as well as a painful, stim­u­lus. And what’s real­ly impor­tant to note there is that; you know, I’m very for­tu­nate as a healthy indi­vid­ual who doesn’t suf­fer from per­sis­tent pain. I expe­ri­ence pain dif­fer­ent­ly accord­ing to my psy­cho­log­i­cal sta­tus. If I’m tired, and if my chil­dren have been home and been fight­ing and I am to bang my elbow as I’m try­ing to get up the stairs to tell them to stop mess­ing around, that’s going to hurt me much more than in a sit­u­a­tion when I’m out with my girl­friends and we’re in a bar, and we’re hav­ing some nice din­ner and we’ve had some drinks and I bang my elbow and I don’t even notice it. So, when you’re think­ing about an individual’s sen­so­ry pro­file, it’s not as sim­ple as, ‘You’re sat in front of me. How do you per­ceive this non-painful sen­sa­tion, or how do you per­ceive this painful stim­u­lus?’ It’s much more com­pli­cat­ed than that, and it’s real­ly impor­tant that we remem­ber that the way we per­ceive pain is con­text-depen­dent and changes on a dai­ly man­ner. It fluctuates.

So, my chief area of exper­tise is actu­al­ly to under­stand activ­i­ty in inhibito­ry pain-block­ing nerve path­ways. So healthy peo­ple don’t have con­stant pain, because they have func­tion­al activ­i­ty in these pain-block­ing nerve path­ways that trav­el from the brain to the spinal cord to depress the sen­sa­tion of pain. What we’ve shown is that this path­way is dys­func­tion­al in cer­tain rodent mod­els of chron­ic pain and in cer­tain chron­ic pain patients. There­in a mech­a­nism has been dis­cov­ered as to why cer­tain cohorts expe­ri­ence per­sis­tent pain, because if they don’t have the func­tion­ing inhibito­ry pain-block­ing nerve path­ways then they are going to expe­ri­ence high lev­els of pain. So, if we bang our elbow, or if we stub our toe, or if we’ve had our Covid vac­cine then the tis­sue aches, the toe aches or our elbow hurts. We rub it. After a while we shouldn’t feel that pain any­more and that’s pre­cise­ly because of this func­tion­al activ­i­ty in these inhibito­ry pain-block­ing nerve path­ways that we have. In an indi­vid­ual who has chron­ic pain the same path­ways don’t func­tion prop­er­ly, and so what this means is that their pain will per­sist, and they will expe­ri­ence the pain of a knocked elbow, or a Covid vac­ci­na­tion, or a stubbed toe much worse than some­one who is healthy.

Evans: So do you mean with this inhibito­ry pain path­way, that when we have our vac­cine or we stub our toe, it hurts once and then the brain says, ‘For­get about it, it was fine, no problem’?

Ban­nis­ter: Yes absolute­ly, because we have to remem­ber that the pain expe­ri­ence man­i­fests not only from sen­so­ry dis­crim­i­na­to­ry aspects, so, ‘I’ve banged my toe, I know I’ve banged my toe’, but also from effec­tive moti­va­tion­al aspects. So, issues such as fear, hope­less­ness, or help­less­ness can esca­late pain lev­els to an unbear­able lev­el. How­ev­er, in the sit­u­a­tion where an indi­vid­ual doesn’t have a per­sis­tent pain state and they have a stub to the toe, because of the con­text of their effec­tive moti­va­tion­al pain pro­cess­ing, linked with that sen­so­ry dis­crim­i­na­tive aspect, ‘I’ve banged my toe’, [it] means that the brain can very quick­ly equi­li­brate, if you like, what those brain sig­nals are. And we have this won­der­ful func­tion­al activ­i­ty in our inhibito­ry pain-block­ing path­ways that imme­di­ate­ly damp­ens down all activ­i­ty in pain pro­cess­ing cir­cuit­ry that could oth­er­wise esca­late the pain. So, we’re very lucky if we’re healthy and our body can very quick­ly damp­en a pain sig­nal. And exact­ly that, it’s the brain say­ing to itself, ‘We don’t need to wor­ry about this pain, it’s not going to cause us any seri­ous long-term dam­age. Let’s inhib­it that so we can get on with mak­ing our cof­fee or play­ing out­side with our chil­dren’. So, if we con­sid­er the project that I’m doing with Parkinson’s UK right now, let me out­line to you the back­ground to it to under­stand how we might trans­late what we see in the lab­o­ra­to­ry to what we might see in the clin­ic with patients.

Because I use ani­mals to research the rea­sons why pain might be per­sis­tent in var­ied dis­eased states, I was able to show pre­vi­ous­ly nerve-block­ing inhibito­ry path­ways that trav­el from the brain to the spinal cord to reduce pain. I was able to show pre­vi­ous­ly that these inhibito­ry path­ways don’t work prop­er­ly in a rodent mod­el of Parkinson’s dis­ease. So, we can use a spe­cif­ic lesion in an area of the brain that induces a Parkinson’s‑like state in an ani­mal. Again of course we can’t say that it’s tru­ly rep­re­sen­ta­tive, it’s as rep­re­sen­ta­tive as we can get in the lab­o­ra­to­ry. When I made these obser­va­tions, I approached Pro­fes­sor Ray Chaud­huri, who’s the direc­tor of the King’s Parkinson’s Cen­tre clin­ic, and pro­posed to him that we should do a world first bridg­ing study so that the obser­va­tions made in these Parkinson’s ani­mals could be applied to con­sent­ing peo­ple with Parkinson’s who suf­fer from per­sis­tent pain. Because ulti­mate­ly what we would want to devel­op is suc­cess­ful treat­ment strate­gies for those indi­vid­u­als who have per­sis­tent pain, while uncov­er­ing an under­ly­ing cause of the dis­ease. So, an obser­va­tion is made in an ani­mal and then we extrap­o­late that to the clin­ic by using exper­i­men­tal par­a­digms that are iden­ti­cal enough, that means we know we’re mea­sur­ing the same pathways.

Evans: Let me go back a lit­tle bit. It was thought, not so very many years ago, that pain for Parkinson’s peo­ple, was pure­ly down to the aching and the tremors and all the effects from the dis­ease itself. This is fair­ly new.

Ban­nis­ter: Absolute­ly. What we def­i­nite­ly know is that con­stant pain is a poor­ly under­stood and a major unmet need in peo­ple with Parkinson’s dis­ease. Our research will pro­vide new infor­ma­tion about the mech­a­nisms by which these peo­ple with Parkinson’s expe­ri­ence clin­i­cal pain, and that’s true for cohorts with­out pain and for cohorts with pain. The mech­a­nism, impor­tant­ly, might link to the cause of dis­ease pro­gres­sion. Every­one is unique, every­one is an indi­vid­ual. Not one of us expe­ri­ences pain in the same man­ner and this is cer­tain­ly going to be true for peo­ple with Parkinson’s dis­ease. So, we’re first of all going to under­stand how these indi­vid­u­als’ respons­es to pain tests dif­fer in terms of, ‘You’re a per­son with Parkinson’s dis­ease, you don’t have con­stant pain. You’re a per­son with Parkinson’s dis­ease, you do have con­stant pain’. Then we’re going to have all of the healthy age and sex match con­trols, and slow­ly but sure­ly, we’re going to build a foun­da­tion base of knowl­edge regard­ing what these exper­i­men­tal pain phe­no­types are in these indi­vid­u­als. This is a step towards per­son­alised pain man­age­ment. So right now, we are busy prepar­ing pam­phlets that will give all of the infor­ma­tion an indi­vid­ual would need if they want­ed to con­sent to be part of the study. So far there’s been no recruit­ment. We hope to begin recruit­ment in April and the grant will start ful­ly in May.

Evans: Can peo­ple with Parkinson’s vol­un­teer them­selves for the study? How will they find out about it?

Ban­nis­ter: Absolute­ly. So, there’s a bril­liant team at Parkinson’s UK who con­tact­ed me not long after I was award­ed the grant and their pre­cise role is to make sure that the Parkinson’s com­mu­ni­ty is aware of this study, that they can con­sent to be involved if they so wish. Peo­ple with Parkinson’s dis­ease are at the absolute core of what it is we’re try­ing to do, so shar­ing our find­ings with them is going to be of great impor­tance. So even if an indi­vid­ual want­ed to take part in the study and couldn’t, they will learn the out­come of the study because we real­ly believe that this is going to be a project that is going to make a real difference.

Evans: That’s Dr Kirsty Ban­nis­ter of King’s Col­lege, Lon­don. Do go to the Parkinson’s UK web­site at parkinsons.org.uk to find out more about this and oth­er stud­ies and just about every­thing you need to know about liv­ing with, or with some­one, who has Parkinson’s dis­ease. And go to the ‘About Us’ sec­tion for Scot­land, Wales and North­ern Ire­land spe­cif­ic sup­port. And on the sub­ject of sup­port, peo­ple have told me, and I know this to be true from my own fam­i­ly expe­ri­ence, that if you want to know any­thing about man­ag­ing day-to-day liv­ing with Parkinson’s, the Parkinson’s clin­i­cal nurse spe­cial­ists like Car­ol Ven­nard at the Queen Eliz­a­beth Uni­ver­si­ty Hos­pi­tal in Glas­gow are always there to help you.

Ven­nard: We as nurs­es have more time with the patients. We can sit with them and talk through what­ev­er they want as many times as they want with­out the pres­sure of hav­ing a‑mil­lion-and-one oth­er patients with oth­er dis­ease process­es going on. All I live, sleep, eat and breathe when I’m at work is Parkinson’s dis­ease. And there’s not real­ly many doc­tors who have got that lux­u­ry. So, we are able to see the patients back a bit more often, we’re able to phone them back if they have prob­lems. We’re able to go and see them inside their own home or with­in their care home. They’re able to bring a rel­a­tive with them etc. I think from the patient’s point of view, that’s what they like, they like the acces­si­bil­i­ty of a nurse and it’s not always easy for a medic to have that acces­si­bil­i­ty. I think as well that they get to trust you. They know that if you phone them, and that on my answer­ing machine, if peo­ple get my answer­ing machine it says I’ll get back to them with­in twen­ty-four hours. They know that there’s a safe­ty net there for them.

Evans: Car­ol Ven­nard. I’ll just remind you that while we in Pain Con­cern believe infor­ma­tion and opin­ions on Air­ing Pain are accu­rate and sound and based on the best judg­ments avail­able, you should always con­sult your health pro­fes­sion­als on any mat­ter relat­ing to your health and well-being. They are the only peo­ple who know you and your cir­cum­stances and there­fore the appro­pri­ate action to take on your behalf. Do check out Pain Concern’s brand new, shin­ing web­site at painconcern.org.uk where you can down­load all edi­tions of Air­ing Pain and find a wealth of sup­port and infor­ma­tion mate­r­i­al about liv­ing with, and man­ag­ing, chron­ic pain. Last words of advice from Janet Kerr.

Kerr: Every morn­ing I do a basic yoga rou­tine, just mobil­i­sa­tion to lubri­cate my joints. Now, quite a lot of that is me going, ‘Ow, ow, ow!’ [laughs]. But I do it because I know oth­er­wise I would hard­ly get out of bed because I’d just be that stiff and sore. But although it’s sore to do, I know it’s ben­e­fi­cial. Because I could be sit­ting on the couch doing absolute­ly noth­ing, in pain. If I go out on my bike, I’m in pain but I’m doing some­thing. I’m not veg­e­tat­ing on the couch doing noth­ing. That was one thing the pain clin­ic actu­al­ly had said, that when peo­ple are told they have a move­ment dis­or­der, or they have a bulging disc in their back, or they have trapped nerves, they some­times go into pro­tec­tive mode where they think, ‘Oh I’ve got a sore back, I can’t bend over and pick my slip­pers up off the ground. I can’t reach up to get that’, when they were say­ing that the com­plete oppo­site should hap­pen. Because your body needs move­ment. It lit­er­al­ly seizes up if you’ve not moved. So, I’ve always kept that with me, that despite the pain, I have to move. Now, I do tend to choose things on wheels, but I don’t go out walk­ing because I think in my head, I’ve been a bit too self-con­scious which is absolute non­sense. Because in my head peo­ple are look­ing at me going, ‘Oh gosh, she’s need­ing a walk­ing aid’, when they’re pos­si­bly not even look­ing any­where near me. And my friend said to me, ‘Janet, if you’ve got walk­ing poles, for all peo­ple know you are recov­er­ing from a sprained ankle or an injury’. You know, it doesn’t say, ‘I’ve got Parkinson’s’. So, there’s still a bit of accep­tance with this con­di­tion. You think you’ve met accep­tance and then a lit­tle bit of tur­moil hap­pens. I mean, I’m five years down the line and I’m still com­ing to terms with… a jour­ney. I’m try­ing to think of the best way to word it. It is a jour­ney and it’s a roller­coast­er. And I just hit a scary moment again with the walk­ing. Because at the end of the day, Paul, I do a lot of exer­cise in pain and then I’m think­ing, ‘Well, why do I not go walk­ing?’ I’m in pain. And it’s to do with the whole‑, that I need an aid. So that’s my stu­pid pride. But it’s just me learn­ing to come to terms with it, that’s what I need to do.


Con­trib­u­tors: 

  • Car­ol Ven­nard, Clin­i­cal Nurse Spe­cial­ist in Parkinson’s Dis­ease at the Queen Eliz­a­beth Uni­ver­si­ty Hos­pi­tal, Glasgow
  • Janet Kerr, ex-pri­ma­ry school teacher and Parkinson’s dis­ease patient 
  • Kirsty Ban­nis­ter, Senior Lec­tur­er and Prin­ci­pal Inves­ti­ga­tor at the Insti­tute of Psy­chi­a­try, Psy­chol­o­gy & Neu­ro­science, Kings Col­lege London. 

More Infor­ma­tion: 


Tran­scrip­tion by Cara Man­ning 

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