Amprion and Parkinson’s Concierge jointly held a webinar to offer insights on how COVID-19 affects Parkinson’s patients. Panelists include patients, caretakers, as well as medical professionals.
In this 40-minute webinar, we discussed the following major topics along with time-stamp for quick reference:
- Covid symptoms can vary in Parkinson’s patients. For example, Parkinson’s patients don’t record temperatures reliably. Some may have no temperature yet with a raging chest infection. (7:20)
- The added risks of COVID-19 for Parkinson’s patients and how are these best addressed. (16:00)
- Be prepared by having a list of your medications, timing and dosage with family contacts. (23:29)
- Panel members also share tips for coping with anxiety and de-stressing. (31:00)
About the Moderator and Panelists
Moderated by Dr. Russ Lebovitz – CEO and Co-founder of Amprion, Dr. Lebovitz has focused his career on developing breakthrough diagnostic products for cancer and neurological diseases. Currently, Russ leads Team Amprion on the path to revolutionizing early detection for Alzheimer’s, Parkinson’s, and other neurodegenerative diseases. Through early detection, we aim to find the cures for these diseases.
Charlotte Allen – Co-founder of Parkinson’s Concierge and a Parkinson’s patient for 16 Years. Caretaker for Russ Bradford, who also has Parkinson’s. Director and Co-Founder of Parkinson’s Concierge. Award Winner – “Patient Advocacy Prize,” “ESPCH 2020 for Promoting Patient Centric Care.” Committee Member of the Parkinson’s UK YPA. Patient Ambassador for Northumbria University.
Russ Bradford – Co-founder of Parkinson’s Concierge and a Parkinson’s patient for seven years. Caretaker for Charlotte Allen, who is a fellow Parkinson’s patient. Co-Founder of Parkinson’s Concierge. Award Winner – “Patient Advocacy Prize,” “ESPCH 2020 for Promoting Patient Centric Care.” Advocate for WPC 2022 – Barcelona. DBS Awareness Creator (DBS Surgery in Oct 2019). Committee Member of the Parkinson’s UK YPA. Patient Ambassador for Northumbria University.
Richard Underwood – Project Manager and volunteer at Parkinson’s Concierge. Diagnosed with Parkinson’s two years ago. Keynote speaker at the World Neurology Conference and Parkinson’s UK. Parkinson’s Patient representative at Southampton University.
Helen Underwood – Wife and caretaker for Richard Underwood. Social media manager and volunteer at Parkinson’s Concierge. Motivator. “Making it happen” specialist.
Anne Martin, Parkinson’s Disease Nurse Specialist – Anne specializes in complex Parkinson’s management, patient empowerment, and young Onset Parkinson’s. Fascinated with the inner workings of the brain, Ann spent the last year of her nurse training in Neurology. Anne’s expertise also includes spinal injuries, general Neurology, and care for the elderly.
Rebecca Miller, Ph.D. – A published co-author, licensed clinical psychologist, and assistant professor of psychiatry at Yale University, Rebecca serves as director of peer support at the Connecticut Mental Health Center. Diagnosed with Young Onset Parkinson’s Disease at age 39, after living with symptoms for ten years, Rebecca frequently speaks on the subject of parenting with YOPD at numerous events. She holds an M.A. and a Ph.D. in clinical psychology from Long Island University, and a B.A. from Barnard College.
Thank you for reading this blog. At Amprion, we are working hard to stop Alzheimer’s and Parkinson’s through early detection. Recently awarded the FDA Breakthrough Device Designation, Amprion anticipates commercial rollout of its early testing for Parkinson’s by tracking the prion, alpha synuclein, in first quarter of 2021. Sign up for our newsletter for exciting updates.
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For those of you who prefer to read the transcript, here is the entirety of the video.
– So, I want to welcome everyone today to our webinar addressing Parkinson’s in the age of COVID-19. This webinar is sponsored both, jointly, by Amprion which is a U.S. based biotech focused on early detection of Parkinson’s, Alzheimer, and related diseases using molecular analysis. It’s also co-sponsored by Parkinson’s Concierge, a U.K. based advocacy group for Parkinson’s patients, caregivers, and others, that is both founded and run by Parkinson’s patients and caregivers. So the main topics that we want to address today relate to emerging trends for Parkinson’s patients that are facing this COVID-19, either as a disease or just the isolation associated with the disease. And potentially, some strategies for dealing with problems associated with the extended isolation from caregivers, peers, friends, and doctors. And we believe that there are unique aspects of this disease and isolation, as it relates to the Parkinson’s community. And I’m going to ask our panel today to introduce themselves, and after that we’ll try to address a number of questions. And in the future, if someone submits questions, we’ll use those as well. So I want to let the Parkinson’s Concierge four founders and Rebecca Miller introduce themselves. So I don’t know the order. Charlotte, would you like to go first?
Yeah. Hello, I’m Charlotte Allen, a partner to Russ Bradford. We are co-founders of Parkinson’s Concierge. I was diagnosed with Parkinson’s at age 36, I’m now 53. Russ was diagnosed with Parkinson’s age 40, he’s now 47. Three years ago we were on Facebook and we met in a small support group. We’ve dedicated now the rest of our lives to helping all those affected by Parkinson’s worldwide by sharing our lives’ journey with Parkinson’s.
Great, appreciate it. Russ, would you go next?
Hi there, my name’s Russ Bradford. As Charlotte’s very kindly introduced me, I’m a 47-year-old. I was diagnosed with Parkinson’s exactly one month after my 40th birthday, albeit the symptoms were showing before my diagnosis. Parkinson’s Concierge are award winners, for promoting patient-centric healthcare throughout the U.K. We’re advocates in the Parkinson’s movement. We sit on the steering committee for Parkinson’s Nurse Association, and for Northumbria University. And we’ve developed partnerships with various companies, including insurers who can offer specific products or services for the Parkinson’s community.
Great, thank you Russ. Richard, would you go next?
Yes, I’m Richard Underwood, and I’m 55, soon to be 56. Basically have symptoms, and since I was 40-years-old. And diagnosed three years ago, and I’m a joint volunteer with Russ and Charlotte at Parkinson’s Concierge. I’ve spoken at the neurology conferences in Rome, and I’m a keynote speaker for Parkinson’s U.K. in the U.K.
Great. Helen, please introduce yourself.
Hi, I’m Richard’s wife. He was actually showing symptoms when we got married, we’re a second marriage. And basically, we’ve been all over the place doing research projects and advocacy stuff. And basically being as helpful to the Parkinson’s community as we can be.
Great, well thank you. And Rebecca, please.
Hi, I’m Becca Miller, I was diagnosed at age 39, I’m now 46. I’ve had symptoms since I was about 28. I currently work as a clinical psychologist at the Yale University School of Medicine in the Department of Psychiatry at a community mental health center, with a focus on the best use of psychiatric medications to be prescribing, and also person-centered approaches to care for psychiatric illness. I’ve been involved with the World Parkinson’s Congress and had the privilege to speak there in Kyoto and just look forward to being a part of this webinar today. Thank you for having me.
Great. And Anne.
Hi, my name is Anne Martin. Been a Parkinson’s Disease nurse specialist for 23 years now, specializing in young-onset Parkinson’s. I travel globally. I’ve worked with cases under 1,000 patients up at King’s, faring from the age of 18-years-old to about 90-years-old. I’ve chose to specialize in young people because of the complexity of Parkinson’s. Yeah, that’s basically my story.
Great, and I’m the moderator, I’m Russ Lebovitz. I’m the CEO and co-founder of Amprion. And my passion in general, and for being here today, is understanding the molecular basis for both Parkinson’s and Alzheimer’s, which we believe are related. So what I want to do is throw some questions, since we have so much first-hand expertise here on this panel, really want to address, as I said, some of the emerging trends as well as strategies for dealing with some of the issues here. So, first question, which I’d like to throw out to, we can either go in order or someone might like to take it first, what are some of the major challenges that you’ve seen over the past two months that are facing Parkinson’s patients uniquely during this pandemic? Does anyone prefer to start on that and then we’ll go around?
I don’t mind starting, if it helps.
Because I work globally and I work from home, I’ve had messages from all over, Japan, all the way through to Mexico from patients very scared about corona. It’s bad enough having Parkinson’s, long-term condition is incurable without having to face something like corona that is also incurable, no treatment at the moment. So, specifically for Parkinson’s, the biggest problem we’ve got is the symptoms for coronavirus clearly states that you should have a temperature or a fever. And the problem with Parkinson’s, they don’t realize this a lot, is that they don’t record temperatures reliably because the hypothalamus is packed with your Parkinson’s plaques. So the temperature with a patient coming into our hospitals, they could have no temperature yet have a raging chest infection. They could have a urinary tract infection and not record a temperature or dehydration or burning. And the problem with corona is that, unless the Parkinson’s symptoms change drastically, they don’t record a temperature. So they could have a temperature of 36 and therefore don’t qualify for the corona symptoms, and the dry cough, Parkinson’s often have a dry cough, that’s nothing unusual. But Parkinson’s don’t have a cough reflex that’s reliable, so if they were going to go in front of a consultant or a nurse or go to the local GP practice, the first question they’re gonna get asked is, “Do you have a fever?” And be sent away because they don’t record a fever, that still doesn’t mean they don’t have corona.
Really good insight. Ann, just as a follow-up, do you know, do you believe that most primary care or critical care physicians who would be the first people to see patients understand this about Parkinson’s patients?
Absolutely not, because I have to… If I’m working at King’s clinic, I’ll get dragged out to go to intensive care and the patient will turn up in casualty and be really unwell. The only symptoms they tend to have is their Parkinson’s symptoms, which are stable on medication suddenly deteriorate. So we have to look up why they deteriorated, and of course your average nurse is gonna say, “Well, they haven’t got a chest infection, “they’re not coughing, and they haven’t got a temperature.” Well actually, when you do a chest x-ray, they’ve got a raging chest infection. The NICE guidelines here for Parkinson’s, which we completed a year or so ago, actually states for the urinary tract infections that you treat them with antibiotics straight away because if you don’t, the chances of septicemia are very, very high. So you treat them with antibiotics before you start fussing about testing the urine, sending it off to be tested. So that at least you’re covering them with antibiotics. So a lot of people, well I’ve actually seen my patients on the boards and say, “No, they’ve obviously got no temperature, “they’re not coughing, they haven’t got burning sensation “and they’re fine,” and yet their Parkinson’s is not responding to drugs. So your answer is no, people don’t understand them.
Great, so I think one of the major takeaways from this webinar today is that any Parkinson’s patients who are listening need to be aware that in general, their reaction to something like a coronavirus is going to be much less with respect to temperature and other autonomic signs of disease. So, let’s make sure that anyone here who’s listening gets that message. Russ, I know you had something you wanted to say to answer the question.
It was with regards to the classifications that people with Parkinson’s U.K., in so much that we are stuck between a rock and a hard place. We are vulnerable, but we’re not extra vulnerable, I believe is the word that being–
Extremely vulnerable. And some of the vulnerability affected the chest and the airways. There’s also the government calling up people who would usually get called up for their annual flu jump and saying that these fall into the extremely vulnerable criteria. And yet, we’re not listed on any grocery, online grocery or the doorstep drops. And it’s causing a lot of people a hell of a lot of anxiety.
Yeah. Anyone else wanna address the question of unique aspects here? Rebecca, please.
Just to add what Anne Martin was saying about the different symptoms. So, I’ve heard that loss of sense of smell and taste is an early indicator of COVID, but for many of us with Parkinson’s, that’s happened a long time ago. So that is not a reliable indicator. Also just thinking about fatigue that’s something we experience on a regular basis anyhow. And then also, for me one of the real concerns is that if I were to have to go to the E.R. at this time, due to COVID, that something that is a common problem in general with people with Parkinson’s in the E.R., in the hospital, is not getting meds on time. And so just imagining with the overwhelmed E.R.s right now, I mean hopefully that might actually have an unintended benefit in that they would leave my meds with me and that I would be able to take them on my own. But just imagining being in the hospital when the healthcare staff, understandably, are so overstretched at this point that that’s such a vital thing for us to be able to get our meds on time, every time. Or, if not even earlier and have them be flexible. Just because missing the meds just by 10 minutes can have such a huge impact on us
Do you know if the supply chain for Parkinson’s meds is being maintained, generally?
Can I answer that?
No, the problem we’ve got in the U.K. is, most of our medications come from Denmark, Sweden, Austria, and everywhere else. We’ve had problems because of Brexit with getting supplies of Parkinson’s drugs in anyway, but we’re getting lots of reports in now that there’s a delay because all the countries shut down their borders that we are getting problems getting drugs in. The other point worth pointing out is that when patients come in with coronavirus, they’re often unconscious, so they can’t communicate their needs to people. So what we’ve done in most ICUs in London is actually set up a Parkinson’s regime of two hourly drugs to be given to tie them over, because giving them no drugs is going to kill them over 48 hours, or could do that. So we’ve just set up a regime. If we do come across patients that can’t communicate, that are on their own, that’ve got no relatives with them, that we give them a two hourly regime of dopamine just to tie them over.
Really interesting. Charlotte, I know you had some things you wanted to say.
Charlotte, yeah, sorry, yeah.
That’s all right, no problem at all. I mean, we’ve been sort of looking into things as well with regards to people who can’t get out getting their medication delivered, there’s various online chemists and people like that who will deliver medication, that’s if you normally get it online and you’ve got your repeat prescription online. So sort of delivering to the patients if they’re on their own, isolated, old. We think that’s really important, like Becca said, with regards to getting the medication on time. It’s absolutely key for people with Parkinson’s. And that we want to sort of create awareness around that fact, too.
Can I just come in on that point as well?
One of the other things which is causing a problem is obviously the isolation of people with Parkinson’s, the anxiety around the virus, but also the amount of false information that’s out on the internet and social media, which causes even more anxiety, misinformation, to a point that it could actually put someone’s life at risk, which needs to be addressed.
Great. Helen, would you like to comment any insights that you’ve had into some of the unique challenges, as a caregiver?
The shopping scenario’s been a nightmare. Just echo what Charlotte is saying. Our chemists is delivering goods, but in the past, our doctor’s been cheap. So with prescriptions, if they’re not set out properly, getting them at the moment is a nightmare.
Okay. So, thank you for those first round of questions. The next question that I think I’d like to throw out to the panel is that, given some of the things that were raised as unique issues facing Parkinson’s patients, besides wearing a mask and practicing typical social distancing, what other precautions might you recommend that PD patients take in this environment to reduce their risk of additional problems related to the Parkinson’s. Let’s just start someplace else. Charlotte, would you like to start there?
Yeah. My tip to people, or something that I feel is really important is to keep constantly hydrated by taking small sips of water constantly throughout the day. Anything you can do diet-wise, to eat healthily, to avoid constipation which is a big problem for a lot of people with Parkinson’s. So, don’t forget your water, just keep sipping.
Great. Someone else? What’s–
I’ll come in on this point, is that okay?
Yeah, the big problem that we’re having is that people with Parkinson’s, yes they’ve gotta look after their Parkinson’s, but they’re becoming unwell with general things and they’re scared to go to the hospital ’cause they’re scared of picking up the coronavirus. So, I’m having people that are ignoring things like respiratory problems, coughing, chest infections that are not related to corona, but they’re basic Parkinson’s. So by the time they get into hospital, they’re much iller than they need to be because they’re not seeking help because of the fear of picking up corona.
Yeah. Russ, do you have any thoughts in your mind?
I’d just like to say that keeping in contact with a community, keeping active mentally, stimulate yourself with online exercises, online groups. Just try and raise the morale.
Yeah, so I was gonna say, the thing that’s changed most is social media and connections. It’s brought a lot of newly diagnosed people out of the woodwork, and are now communicating with other people. One of the issues, though, again is that they are sometimes getting the wrong advice from their peer Parkinson’s people, and not getting the correct advice for what to do. But communication, once a day, is key.
Great. Rebecca, do you have any thoughts? Oh, sorry.
Sure, yeah. I think one of the things that’s really important to me is just acknowledging that the fear and the anxiety is normal and everybody’s feeling it. And that…
And not to try and say, I guess, at least from a mental health perspective that it’s a mental illness or a mental disorder. I mean, of course when things get really extreme, yes, you wanna reach out and get help. But just to normalize it with your friends and family that, yeah this is an extremely bizarre situation that we’ve never experienced in our lifetime. And that some of it is Parkinson’s related and some of it is just pandemic related. And that we’re all experiencing this loss, I think. But especially being all of a sudden alone, and for folks that are so isolated that having to… For me, I am a single mom with a seven-year-old, trying to take care of her, suddenly homeschool, do all the housework, all the cleaning, with no additional help, that that’s been a huge change and shift for me. And just trying to have some self-compassion and be gentle with myself. And as my therapist said to me yesterday, “Embrace failure.” Which, I’m not sure exactly what that means, but I’m trying to work myself into it.
Great, Russ, I know you had something you wanted to say, and then we’ll get to you, Helen.
Yeah, it was just to follow-up on what Richard was saying. The first thing that I think is natural instinct, with Parkinson’s, Parkinsonian people, is if you talk to a peer or see on a platform like Zoom or Skype, and they seem to be looking better than you, the first thing, I think, people tend to do is, “Oh, you look good, what medication are you on?” And that can be… Very common
Quite the negative thing. Because what’s right for one person, that cocktail isn’t necessarily the right flavor for somebody else. And it’s a danger. Also, if they, with witnessing this quite a lot on Facebook groups, chat groups, where people haven’t felt good one morning and the first thing they do is jump on their group and say, “What meds are you taking,” or, “I haven’t felt good ’cause of this, “I haven’t felt good ’cause of that.” And it’s a very dangerous thing.
So it seems like a good warning. Helen, anything?
Yeah, I’m just finding the communities that are springing up everywhere really helpful. We’ve had a few heads against the brick wall scenario with our national charity over here. But they just think of it, too, just copy and paste. But yeah, I mean generally, we just need to stay connected so everybody’s supporting everybody else.
Okay. I had a question then for anyone here, based on this. And what I’m hearing from a lot of insights from each of you, is that there are aspects of Parkinson’s that are unique in the way one would react to coronavirus. And would it make sense to at least be able to offer, since we have established that even the first physician responders may not know enough here and that maybe this is a time that Parkinson’s patients might want to wear some sort of a bracelet that just describes the issue. Or maybe, with a QR code on it that a physician could hit with their phone and it would explain coronavirus and Parkinson’s. And I’m wondering if that isn’t something that might make sense for Parkinson’s Concierge and other Parkinson’s organizations. But if this isn’t well understood, this is a life-threatening, not recognizing that a fever is something that one can’t rely on in a Parkinson’s population, even though a cough might be enough here or other things. And just to remind physicians who don’t take care of Parkinson’s patients all of the time how to react differently. Anyone have any thoughts on…
Yeah, can I come in on that point?
When patients turn up in casualty, or people with Parkinson’s turn up in casualty, it’s a complete and utter nightmare when they come in on their own. They’re seriously unwell, and some of them have had strokes and heart attacks. And the only way I will know they’ve got Parkinson’s, it’s on the system at King’s, ’cause we’re a big hospital, and you can see they’ve got Parkinson’s, so people will be up, they’ve called in somebody to them. But I’m always insisting that my patients carry the list of their drugs, the timing of their drugs, everything with them. But the amount of people that take no responsibility for their own Parkinson’s and turn up. And then they’re screaming at the staff because, especially with agonists, because agonists are not kept everywhere. They’re expensive and there’s a short expiry date. So they turn up and say, “My drugs are at home,” or “We’ve left them somewhere, we haven’t got them. “We haven’t got the list of drugs.” And by the time that is all chased up, rather than just going to a ward or sent home, they could often end up in ICU, simply because they haven’t got that list of drugs with them. ‘Cause people, especially a busy consultant, a busy A and E, they can’t possibly mind-read. They don’t always have time to look at the last clinic letter. So what you’re saying about bracelets, those that do wear bracelets for diabetes and some Parkinson’s wear them, and some Parkinson’s bring their books with them with a list of drugs. There are very many that don’t, especially the elderly that are living on their own.
Great, well it might be an opportunity. Any other thoughts on that? Charlotte, please, and then Rebecca.
What we’re starting to do is recommend that people sort of get a small bag ready just in case they do have this situation of going into hospital that has everything they would need in it just to go to hospital. Just purely because now you can’t rely on being able to take your care partner with you. So in there, obviously, a bottle of water. I know you get water at the hospital, but it’s always good to have a bottle of water, a list of medication, and whatever clothes you need to see you through. And a list of, also, we’re recommending contacts, family contacts, next of kin. ‘Cause like I say, you could arrive at hospital and be unconscious. So, it’s better to be prepared than not prepared in that situation.
Thanks Charlotte, Russ I know you raised your hand, so.
Thank you. I’d also like to mention that, as well as what Charlotte’s saying, and the charger unit, ’cause I’ve actually got deep brain stimulation, and I need to get charged up every now and then. So that needs to go in the bag. But also, information about the system that I have in the bag so they know that I may need to charge at a certain point.
Also Russ, I don’t know exactly how your unit and the electrodes work. But is that a contra-indication for an M.R., and should someone know that?
That’s a good point.
Russ, that’s the thing. Mine’s been MRI approved by… If I’ve gotta go in for a chest x-ray, I really don’t… I think the unit’s gotta be switched off prior to going in for that.
Okay, so there’s a lot of information, I think, we’re concluding here that is unique to Parkinson’s patients that everyone needs to be prepared. And perhaps there’s some sort of a product that could just give that information to a physician who wasn’t aware. Go ahead, Russ.
I’m wondering whether this is actually led to a good point in time that we could all consider what the Parkinson’s community needs. And as more and more people are coming online, people who would not normally be socially active, during this corona period, wouldn’t now be a good opportunity for us to take the first steps in developing an app to kind of go on the phone. ‘Cause the amount of people who’ve got smart phones now, they could carry details about the “In Case of Emergency” numbers, the medications, the medications’ times and frequencies. As well as, information about the DBS unit they’ve got.
Yeah, I would like to just come in at this point. I think the issue here is about having the right information in an efficient way so that the medicine can be delivered as quickly as possible, and the treatment. Because without that, I think you’re delaying, and people are becoming more seriously ill. And if they don’t have their medication, some people with Parkinson’s are unable to communicate. And the further their medication wears off, the more the communication becomes an issue.
All great points. Rebecca, please.
I just wanted to jump in and say that, Parkinson’s Foundation here in the U.S. has a great kit called the Aware And Care Kit that’s free, at least to U.S. residents, but it’s a little pack that includes things like a magnet for the notices and information for the nurses and a med list and emergency contacts, all that kind of stuff. But I think the bracelet is a great idea and a great suggestion. The other thing I was thinking about that I haven’t thought of before is, are there interactions between common Parkinson’s meds and some of the antivirals or other meds that are being commonly used for corona? And I’m not sure about that. But for example, I know that I take Azilect, and basically most things are contraindicating with that medication or a great deal.
Well, it maybe particularly comes in and is really sick with the virus, and they are given… We have a lot of drugs that are being given to people in emergency situations that aren’t so well tested. And I think that’s a really good point also, for people maybe to be aware of the medications that each patient is on.
These are really unique problems, as we started off to say, that each Parkinson’s patient is unique, but that also means that they’re taking different drugs and the interaction. For example, maybe they don’t react well with chloroquine, for example, or other things.
If I may come in on that one. When you’re treating Alzheimer’s, it’s a very different way of treating Parkinson’s Disease, dementia on the same way, is because haloperidol, you cannot give to Parkinson’s. You cannot give Parkinson’s anti-emetics that you would give normal people because it blocks dopamine. At King’s, this is all listed. At Parkinson’s U.K., they’ve got a Get It On Time bag, and in that bag all these things are listed, the contraindication to what you can and can’t give. But that still depends on the Parkinson’s patient, or the nurses and the doctors knowing that this is around for them. If you give somebody rivastigmine, you give them it in a patch because you can’t give them it orally. And often with Parkinson’s when they come in, you can’t give them oral drugs ’cause their swallowing is affected because they’re off. So the only way of getting them back on, from my perspective, is I would give them an apomorphine pump, put them on that to get them back on, in order to get them back into a swallowing situation. But again, if you went into a general A and E department, they wouldn’t understand these things.
So, what the conclusion that’s kind of avoidable here, is actually that Parkinson’s patients are at significantly higher risk–
If there’s an emergent situation related to coronavirus. And there’s got to be a way to get this information very quickly to a physician, might be a first year resident who just doesn’t know enough, and has been treating other coronavirus patients. So, this is something really important to come out of this discussion. Let me ask the next question that I have is, several of you have referred to the fact that, look, for everyone in this situation being afraid of the virus, being isolated away from family and friends, and in some cases caregivers, there’s a tremendous amount of stress that’s associated with this. Any particular suggestions of ways to alleviate this stress that might work better for Parkinson’s patients, knowing some of the situations and some of the risks and vulnerabilities here?
I should probably come in on that one. The biggest thing that’s helped people is around social media, joining groups, and just having fun. So for example, I’ve been involved today on a singing record, I was in one on a world record attempt on the weekend, and I join Becca every week, and have a gin and tonic online. And things like that help to alleviate the anxiety.
Great. Others? Stress management that works for you or that you think might really work better for Parkinson’s patients who aren’t able, necessarily, to go through a normal routine.
Well I’m finding, from a carer’s point of view, as I said earlier, there’s a lot of misinformation out there about corona and about Parkinson’s. And I think the more factual information that carers are given, the better they’re finding it to manage. Because there’s too much hearsay going on, even with the 5G phone while spreading the virus and all this rubbish that’s going on out there. And the other thing is, all the symptoms of corona, and all the symptoms of Parkinson’s are so individual, if they’re managing their Parkinson’s well and the carers are managing it well, and they know what to look for with coronavirus and they have the facts, they are a lot calmer. I’m finding some really good responses coming back saying they’re much better after a few days of knowing the facts, and they’re getting rid of the rubbish. So that does help.
Great. Charlotte, I know you have a comment.
Me personally, I’ve found that the best way I can react to being sort of, anxiety, that’s my biggest, biggest problem that I have. And I find that doing simple meditation or listening to music and relaxing myself and breathing, taking a bit of time out away from social media, ’cause I spend far too much time on social media, I know that, really helps me to relax. And I can think about other things apart from Parkinson’s, which normally you think about 24 hours a day.
So since there’s extra stress here, Charlotte, to sort of follow on your question, would you recommend if it’s normally once a day that you might increase the frequency of meditation or stress management to two or three times a day?
I haven’t needed to yet, but I can’t see that it would do any harm for someone that finds it useful, just to creep into a room on their own, play some music, and just really think about things, really.
Great. Any other specific answers to that question about stress? I think we’ve covered quite a bit.
Yeah, the last thing I have to add is to try and associate yourself with positive people and have a positive outlook. Which is very vital. ‘Cause unfortunately, some of these social media groups can be very negative. And if you’re associating with extremely negative people, it can bring you down, especially if you’re in isolation.
Great. So, in the time allotted, I’m just gonna go around to all of our experts here and let you just add some sort of a summary or anything you want to add that you think is important in closing out this first webinar. I’ll start on my screen, in the lower right, which is Rebecca.
Sure. Sorry for that interruption, too. That’s sort of my new world, is having the Zoom meetings intruded upon by a seven-year-old. And so that will lead me into my summary or final words are about trying to have flexibility, which is kind of an ironic thing with Parkinson’s, right? But doing our best to be flexible and keep exercising. I think that was one thing with me staying home from work now is I don’t get out, just the process of getting to work is a lot of exercise, and so trying to make up for that. And then, just trying to keep a sense of humor, like finding some funny memes about… There was one like, a graph of my consumption of logarithmic graphs has gone up logarithmically. Things like that just help me to keep some perspective and keep going through this.
Great, thanks for sharing that. Anne, you’re next on my screen, so.
Well, I suggest the best thing people can do is stay away from the news, stay away from everything you’re seeing, and the amount of deaths that are occurring. Stay away from counting numbers. Keep away from the radio information that’s also negative, ’cause as I said previously, all this negative information is putting people down, especially when you’re on your own. Concentrate on your own wellbeing, so concentrate on your own Parkinson’s symptoms, your medication. Avoid dehydration, keep yourself fit and well, and you’ll get through this.
Great, thank you. Helen?
Yeah, I mean, we’ve found just staying busy with doing something positive, yoga and what have you, has all been really good to keep us all busy. I’m just trying to keep everybody’s spirits up, really.
That seems like an important thing to do. Charlotte?
Well I would say, have time for you, pick out something the you enjoy that’s different that you don’t normally have time for. I’ve been doing cooking demonstrations at home in my kitchen, that I’ve had a lot of comments on. I mean, I love cooking. I’m cooking every day, and I’m sharing that with the community.
Are you cooking new things, or you’re focusing–
Yep. I’m on cakes at the moment.
Just trying to fatten us up!
Happen to be chocolate cakes?
Oh, no, rhubarb and custard today. And then it’s, yeah, carrot cake on Friday.
Wow, I wish we could share those virtually. Richard?
Yeah, I think the biggest thing is to stay communicated, not to isolate yourself away. And try, in this situation, to enjoy the days ahead. And not to look backwards or to look at the news. ‘Cause what Anne says is right. Because to be honest with you, the news from one 30 minutes is devastating.
Just to echo what people have already said. Keep away from the negativity on the news, and negative people. Concentrate on what you enjoy. Concentrate on, learn something new. Use this as a time to learn a new skill or a new language. If you’ve got time, do that. But just do everything with a smile on your face.
Great. Well, what I’ll say is, this has been really a very interesting discussion, a very informative discussion. I’m really pleased to have been able to hear all of the great accumulation of this group, and while there are many other topics that hopefully will be able to follow-up on in other webinars, I don’t think we could possibly kick-off with a better or more timely topic. So thank you for putting up with my laryngitis today, which I’m pretty sure I can assure you is not coronavirus. It certainly sounds like it would be. In any case, let’s agree to try to meet again and explore other topics together. But I want to thank each of you for your time and I feel like this will be very useful to any patients and caregivers who are anxious and needing to get reassurance and wisdom from this group. So thank you.
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