Corona Diaries

Cecilia “I already felt guilty that I couldn’t play the role of Grandparent as effectively as I wanted because of having Parkinson’s and this [Covid-19] made it worse.” Background Information Female, aged 65-74, Third sector project and development, South Wales, White, Co-habiting, adult children, and grandchildren.

April 2020 24th April 2020 - Looking back to a different world On Boxing Day 2019 my partner and I set off on a 5 week holiday. My Parkinson’s symptoms get worse in the winter, and we wanted to miss some of the grey days and find some sunshine. To avoid long flights made extra uncomfortable by Parkinson’s stiffness, we stopped in 6 different places. We were also able to build in some time with good friends who are American. Devon is a pen pal from school days and we have known each other over 50 years longer than she has known her husband William. A blog post re the friends: https://peptalking.home.blog/2019/12/31/bubbly-buddies-6-9/ We started our holidaying in the Pittsburgh area in a world that was largely unaware of Sars – CoV 2 and then the four of us flew via Seattle to Hawaii. While we were there during the first couple of weeks of January, news of this strange new virus must have broken as I remember a light hearted discussion about whether Devon and William would be allowed back home flying again via Seattle as we set off for San Francisco. We parted with the expectation of seeing them again, in the UK in the spring of 2021, now I wonder whether we will ever see them in the flesh again. By the time we were due to travel home on 30th January, from Miami, with coverage in the news and cases in the US, we fully expected some sort of screening on our return to the UK, or at least delays caused by screening of others. We had been in San Francisco (and in China town) in Dallas and Florida. There were no checks no monitoring of temperature, not quizzing of where we had been, we might have been returning for China so though the UK professed to have a “containment” phase early on, it wasn’t evident to us at the end of January. For a while nagging at the back of my mind was that someone had been taken ill on one of our internal flights in US. For 5 minutes or more they were lying in the aisle, about 10 rows ahead of us being tended to by cabin crew. Corona virus was not so much in the news on our immediate return, we were fit enough and the nagging retreated. Written on 27/04/2020

Growing unease As February was progressing my partner and I were asked to help out with some child care. My son’s partner got a job which meant that we were needed, 2 days a week, to pick the girls up from nursery and school take them to their home and look after them for about half an hour. The first week was no problem. It was just at the beginning of the “handwashing campaign” and we had difficulty in persuading the 3 year old to comply, by the time we got to the second week, there was growing concern, the nursery was only allowing one parent at time to enter the building and asking us to wait at a distance. My son decided it was no longer sensible for us to take the risk as we both have underlying medical conditions. Things seemed to change very fast around then with messages from Government ramping up very quickly after initial calming noises. My feelings about not being able to help were very mixed. I already felt guilty that I couldn’t play the role of Grandparent as effectively as I wanted because of having Parkinson’s and this made it worse. All that we were hearing at the time implied that my partner and I might be at risk of a bad dose, but currently I am really very well, fit and healthy and I don’t feel vulnerable. If they had been in difficulty with childcare I would have wanted to help them despite the risks. Keeping the children safe would have seemed more important. NB. For a while at the beginning Parkinson’s was not in the list of conditions that put one in the higher risk categories, and it still isn’t in the WHO list. It makes me thing that NHS put it in just in case. Partner though is Type 2 diabetes, asthmatic and hypertensive. Very quickly the childcare was no longer an issue as the rules on Social Distancing began. After a slow start the “crisis” seemed to accelerate very quickly. What sounded like a measured, considered calm approach suddenly rose to full shut down. Written on 28 -04-20 Parkinson’s and SARs CoV 2 Initial descriptions of those who were more vulnerable to the effects of the new virus did not include people with Parkinson’s, even now WHO only mentions those with cardiovascular problems, respiratory diseases, diabetes and cancer. UK has added those with Parkinson’s and then has the “shielded” category for those who have compromised immune systems. People with Parkinson’s were initially confused, the message was you aren’t at any greater risk than the rest of the population of catching the virus and developing COVID19 but some people with Parkinson’s, particularly in the later stages, are at greater risk of enhanced symptoms because their respiratory system is already compromised. The scientists, clinicians and charities linked to Parkinson’s reacted quickly and got information out on as many channels as possible. Information is updated frequently. Papers, which are intended more for clinicians than patients, highlight the particular additional difficulties that PWP might face as a result of the pandemic rather than the disease itself:

• Reduced opportunities to exercise – this is very important to PWP as exercise is the only thing that actually slows physical decline and helps combat motor symptoms

• Increased isolation – PWP often have to make extra efforts to socialise and can retreat readily into seclusion

• Increase of stress- stress has a direct impact worsening symptoms of all sorts

• Increased mental health problems – some PWP experience mental health problems as part of the condition. Ranging from apathy to clinical depression to anxiety and including hallucinations- isolation is likely to exacerbate these

• Support systems have largely closed down but with strenuous efforts being made by charities and volunteers to keep things going with on-line/telephone services, the greatest concern is for those often older individuals who are not IT literate.

I feel there is an additional further health danger. There is a tendency to blame every odd pain or symptom on Parkinson’s and not take it seriously as a possible other disease or condition. In this current situation, with added difficulty in reaching health services, PWP are even less likely to check on any new symptom and may be missing early signs of additional serious health problems. The further cause of both concern and interest is the emerging information about the neurological symptoms experienced by some with COVID 19. The loss of senses of smell and taste, burning hands and feet, excruciating headaches etc have been reported, some of which are symptoms characteristic of Parkinson’s which leads to concerns about:

• The possibility of those symptoms worsening considerably for PWP who might catch the virus leading to a bad case and hospitalisation

• The possibility of further neurological damage post infection

• The possibility of lifelong neurological damage to anyone who has COVID19

And a potential interest in that it might illuminate a possible cause of Parkinson’s, i.e. a post viral condition. The precise causal mechanism/s that result in Parkinson’s are not known and are recognised to be manifold and complex. This current crisis and the time which follows that may see an increase in neurological conditions, might provide an opportunity to learn more and lead us towards prevention and/or a cure. Addition 29-04-20 The post below (screen capture) arrived in the twitter feed today and I felt the need to post:

@PConciergeSM

@bphillipsonMP

Pardon me if I point out the huge variation in people with Parkinson's. I think only some would be

"extremely" vulnerable and there is danger in a blanket approach. Just my opinion of course as a fit healthy

PWP.

28-04 An encounter with some bad cases of COVID 19 via Facebook. I’m not sure if this is the sort of stuff you want. Conversations/posts with a once quite close friend re-encountered recently via Facebook. He lives in Switzerland and I have copied and pasted from FB and anonymised. My annotations/comments reactions in green Friend March 11th a general post to friends on Facebook.

My wife is on the front line as a doctor, and it worries her a lot - and of course me! So I feel it is my obligation to add something.

Her patients are panicking from even minor sniffles and trying to make appointments, but she tells them to stay home and watch out for breathing difficulties - and only THEN to call for urgent treatment from hospital services (or she will do it for them). Even here in Switzerland - where health care is amongst the best in the world - the panic is incredible.

SO - with that in mind, a comment to underline the important aspects of this emergency from my wife's point tof view (but basically my interpretation also as a scientist) as there is a lot of ridiculous stuff on the internet:

FIRST - PLEASE UNDERSTAND THAT EVEN YOUNG PEOPLE CAN DEVELOP THE DANGEROUS FORM OF VIRAL PNEUMONIA THAT IS KILLING OLDER PEOPLE AND PEOPLE WITH PREVIOUS HEALTH CONDITIONS. THE PROBLEM FOR THE MAJORITY OF CASES IS THAT SURVIVAL OF THIS FORM OF PNEUMONIA - EVEN FOR YOUNG PEOPLE - IS CRITICALLY DEPENDANT ON ACCESS TO INTENSIVE CARE FACILITIES IF THEY ACTUALLY DEVELOP IT.

If people can be intubated and treated then they will probably survive. Under normal (??) circumstances these facilities would be reasonably available (the NHS in the UK???), but with the high level of infection now (or to come) they may become totally saturated and people are likely to die as a result.

ITALIAN DOCTORS ARE ALREADY MAKING THESE LIFE OR DEATH DECISIONS BECAUSE THIER FACILITIES ARE OVERWHELMED..

The ONLY WAY TO DEAL WITH THIS IS TO LIMIT THE INFECTION RATE. So PLEASE take care! If you have sniffles and coughing fits then self-isolation and keeping your distance - plus limited physical contact with other people - will help. IF YOU DO DEVELOP BREATHING DIFFICULTIES THEN THAT IS THE MOMENT TO CALL FOR IMMEDIATE AND URGENT HELP FROM EMERGENCY SERVICES.

IT IS NOT JUST AS BAD AS FLU - IT IS A HELL OF A LOT WORSE. We have NO immunity, whereas with flu we have some partial resistance (almost everyone has had a form of flu in their lives and survived) and we can get a seasonal jab which also helps to provide "herd" immunity (reduces the number of carriers) in the population. It will be some time before a vaccine is available for this virus to do this.

Stay prudent and careful AND....

WASH YOUR HANDS EVERY TIME YOU RETURN HOME. USE AN ALCOHOL HYDROGEL TO SANITISE YOUR HANDS (if you can find any). THIS WILL BE PROBABLY ONE OF THE MOST CRITICAL ELEMENTS OF STAYING HEALTHY DURING THIS PERIOD OF THE RAPID GROWTH OF THE INFECTION (my wife washes her hands BEFORE she treats patients and after the last one, then when she gets home. She has ALWAYS insisted that I wash my hands after having been outside or in a bus or whatever. I now do it religiously.)

TRY TO AVOID TOUCHING YOUR FACE, EYES OR MOUTH (MADDENINGLY DIFFICULT AS IT IS MOSTLY AN UNCONSCIOUS HABIT!!!!).

NO KISSING OR SHAKING HANDS (friends and strangers!)

WEAR A FACE MASK (if you can find one) IN CROWDED AREAS IF YOU HAVE TO GO OUT AS IT IS ALSO TRANSMITTED IN AEROSOL FORM FROM COUGHING. DON'T BE AFRAID OF LOOKING SILLY!! THIS IS A SERIOUS ISSUE!

COUGH OR SNEEZE INTO A TISSUE OR - IF NO TISSUE -INTO YOUR FOLDED ELBOW SPACE.

AND...

IF YOU BUY NON_PACKAGED FRUIT OR STUFF THAT WILL BE CONSUMED WITHOUT COOKING FROM A SUPERMARKET THEN WASH IT WHEN YOU GET HOME. THESE THINGS CAN BE HANDLED BY OTHER PEOPLE BEFORE YOU.

Remember that this is not only to protect yourself, but the entire community so that critical health-care facilities will be available and not overwhelmed.

I find it hard to be classified in the age group that is most vulnerable (older than 65 years ) as I feel great (still vegetarian folks) and I watch every sneeze/cough/shiver, etc. like everyone now.

This is NOT Armageddon - and it WILL happen again. Let's hope the world and stupid/incompetent government actions/politics learns this lesson - and thank god it is not a pneumonic form of Ebola!! My reactions – this is a highly intelligent guy and I respect what he says. What he says accords well with my understanding of the disease and of the tragic story unfolding in Italy – must e-mail my Parkinson’s friends in Lombardy. Friend again The UK is the worst Nige. The official government policy (not quite the case!) is that all young people should be infected to get immunised (?? young people CAN die!) so they were not going to ban gatherings up to 500 people. Because it is mostly open air and few infected people. Bullshit. At these sort of gatherings, what do people need? A piss/crap, food and beer. So has anyone been in a venue where the toilets, food bar and pub are not 10 deep with people jostling to get what they want? Morons. I was writing it all up to post this morning but was beaten by university scientists who got the critique in first and in the news. The NHS will never cope with the expected 1.5 million serious cases if the infection gets out of control. We need to bring infection down long enough for a vaccine or drug therapy to be developed. A hard thing to achieve without Draco Ian measures but better than so many needless deaths. Unless of course

they want to get rid of a lot of older people to lower the costs of paying pensions and social care. (It’s a scary thought but one that had occurred to me) At home I am amazed that the Cheltenham Horse Racing has been allowed to go ahead when so much else is cancelled. Cynically I think its because lots of rich (and therefore influential) people don’t want to miss out on their enjoyable event. They must also be a little dense not to realise the threat. Friend of Friend in the conversation As a retired critical care consultant, the issues we face in the UK, are 100000+ nurse vacancies in the NHS, (Italy has 9000) and have a look at the graph showing the number of critical care beds per 100k....is says it all and I’m not confident. In Italy 65 and older are not even being considered for ITU! HMM! ME in the conversation Interesting article on the management of Covid19 in Taiwan https://www.zmescience.com/.../how-taiwan- managed-to.../ Friend Very impressive. Everything the UK and European governments did NOT do. As for the Trump administration? No comment. Friend progressing through COVID19 April 1 Hi Folks,

For over a week now my wife and I were looking after her father (98 years old) who unfortunately developed a serious case pf pneumonia and has been diagnosed with Covid 19. He was hospitalised a couple of days ago and is in a serious state. Even though we took all the precautions necessary with masks and protective clothing and used huge amounts of hydrogel, I have been diagnosed also with Covid 19 (I had to manhandle him a lot so got perhaps a bit too close) whilst my wife is still clear. This is good news for her as she is a doctor on the front line but for me I need to self isolate for at least 14 days.

My symptoms are classic with coughs, headache, fever and aching limbs but they are for the moment quite mild. Let's hope it stays that way. Today is the first day I have no sign of fever, but no-one knows too much about this virus and it could come roaring back!

I will keep updating on my condition as I am going to isolate in my father-in-law's apartment.

April 1

Sad news then. My father-in-law just passed away. Expected but sad. We were going to take him down to Provence on holiday.

I’m still OK but my temperature went up so chomping on paracetamol.

Concerned for my friend and his wife and send best wishes

April 5

Too all my friends and colleagues out there, my wife also developed symptoms so I returned to our apartment so that we could be sick together. Being alone is a real bummer. I am in my 5th day of lockdown and she her fourth. We are quite sick though no pneumonia symptoms yet. It is like the worst flu you could imagine. We are very weak and can get exhausted over even minor activity. Up until now I have had very little in the way of coughing and sneezing, just muscular pain, headaches (severe) and « painful skin ». Today I coughed a bit but not much. Marie-Claire has fever hot-cold attacks with coughing.

We rely on our sons and girlfriends to deliver stuff to our door which we pick up when they distance themselves.

I worry about my son who is living alone. Guidance here is if you get symptoms stay at home and only get medical help if you are having trouble breathing. How would someone on their own cope with a bad case. What if my son were to have COVID19 and then suddenly got worse, too ill to summon help. I phone him every couple of days to check he is well and start thinking what I would do if he became ill.

According to the latest intel the critical period is between the 6th and 9th day for developing the killer pneumonia. So cross fingers everyone.

I was invited to join the Covideo Folk Club on Facebook given that all folk clubs in the UK are closed down. Given there are no folk clubs in Geneva this presented an opportunity to play and sing by posting videos and also to blog our progress. It might of course also be my last ever performances in public! But that is a

morbid thought and if I am fit enough I will post every day till it is over - one way or another 😳.

Bonne chance and wear your masks!

Send more good wishes as the level of concern steps up and the gap between news on 5 th and 7th seems much longer than 2 days. How much worse it would be for close family waiting for news.. April 7th Ninth day of total isolation for Marie-Claire and me. I must really thank you all for your support and good wishes during this period which has for us both been both the saddest and one of the most frightening experiences of our lives. There is a lot of fear even now as the virus seems a bit unpredictable. Weird things happen. There is a lot of pain and discomfort and very little relief. The headaches are monumental and the « painful skin » syndrome is an utter horror. We keep waiting for the burning chest symptom that would announce the arrival of pneumonia - but it hasn’t come! I have lost nearly 5 kilos so I am the same weight now as I was 30 years ago!! I lost my sense of taste (yes it’s a real symptom) which made Roquefort cheese (one of my favourites) just burn in my mouth. One night I had a headache so painful that I was crying. I lay for hours wondering when it was going to end. Then I had a brainstorm. I got up and made and drank a double espresso coffee. Within 5 minutes the headache had disappeared! According to my wife, this virus has « neurotrophic » properties and can amplify or suppress neurological transmission. Hence loss of taste, « painful skin » and seriously amplified caffeine withdrawal headaches.

Apart from a quite frightening incident last night where Marie-Claire seemed to go into some sort of « fever shock » (so I got her back to bed piled up with blankets), we seem to be OK. She had a very long sleep and though we are far from comfortable we are still without lung problems. We have no fever now so I am optimistic we have passed through the danger period. It will take some time to repair all the damage and feel « normal » but we should make it.

Thanks again to you all for your support. It kept me sane 🤗

I send message urging a belief in the strength both possess. April 10th It is stunningly obvious that this virus also infects the nervous system. It causes INTENSE pain. Removing our sense of taste and smell (me and MC) is just one aspect and an extremely unpleasant one at that. I wondered why my headaches were SO intense that I ended up crying. This is why. MC is now suffering the same thing with huge ups and downs in fever. I am definitely getting better. I think she’ll be OK too but it is difficult to live this. April 12th

Marie-Claire felt pretty ill on Friday night with fever shakes and excess secretions in both lungs so she called the emergency team at the hospital to get a more thorough overview and to decide if she should go into intensive care. A young doctor in a hazmat suit arrived and confirmed that she had fluid in her lungs but that it was minimal. After a call with the I.c.u.team it was decided she should remain at home and see what happens.

Thus far OK but it is all a bit yo-yo. She had a good night’s sleep but I am uneasy. I am definitely on the mend with no fever, aches and pains just exhaustion. She is more fragile than I am so we have to be careful. This is hell on Earth as far as I am concerned. At least another week but we need relief from all this shit.

There was a long gap before anything more was posted. The only contact I have is through face book. I think of my friend and his new wife( been married 3 years) and how very happy with life, he seemed when we got in touch again - newly retired, very much in love with Marie Claire and planning to bring her to Wales next summer.

I want to send a message but so aware of the potential of a very sad story unfolding. We must just wait.. but no … I decide to send a message of support just to let him know I’m thinking of them.

April 19th

PHEW! Video posted they are both on the mend. Though acknowledging it was touch and go for Marie Claire. I feel so much for people whose loved ones are ill. Though friend was close once that was 25 years ago. To have someone in the family or a close friend ill, not being able to see them or help them must be so hard. In the video friend mentioned the consideration of wife going off to hospital and him thinking will I ever see her again? 29-04-2020 - A post copied from my blog peptalking.home.blog posted 18-04-20 A more or less Mindful approach to Parkinson’s and Sars CoV 2 A question of balance.

In the 4th week of the UK version of Social Distancing as a result from the threat from Sars-CoV-2 my days actually seem quite full and sometimes could even be called productive and I could say a lot about what I have been up to. What I am actually going to discuss is what I haven’t been doing … IRONING. I have avoided ironing for many years and a diagnosis of Parkinson’s gave me justification for doing even less. For some reason I don’t quite understand Parkinson’s results in tortuous dealings with anything made of cloth, even folding tea towels sometimes becomes tricky and the description of getting dressed is definitely something for the post 9pm watershed. I have always tried to hang clothes after washing, so that they need the least amount of ironing and certainly get away with just folding, rather badly, many of my items in more normal times. Now we are in a version of lock-down, the doorbell isn’t going to be rung by an unexpected guest and I am not going to be embarrassed by the fact that I am wearing a crumpled, un- ironed shirt. My partner is the only one I see and he’s not likely to be bothered so I pretty much gave up on it. However, there is more to it than that as ironing takes on a new significance in these strange times. There are some things that I own that have to be ironed or they look very wrinkled, so generally even I iron those, usually just before wearing them, if my partner hasn’t already done it for me (kind man!). In “Isolation” of course the wrinkles don’t really matter, no one’s going to see, I don’t need to iron them, but I do! Why? Because they feel nicer to wear when they are carefully ironed. So now ironing changes from being a difficult chore to please others, to a challenging activity that gives me the reward of enjoying wearing the item of clothing. I’ve heard Mindfulness practice described as “Noticing new things in the familiar.”, and for me a positive approach to this most un-favourite of tasks is definitely new. One of the things I like about Mindfulness is that it’s about awareness and very much depends on how you look at something. Take for example the morning shower, one can Mindfully enjoy the physical pleasure of an extra half a minute of warm water massage or limit your shower length and feel good that you have saved 30 seconds worth of carbon footprint. Each approach is as mindful as the other more or less! Over the years I’ve found being Mindful helps manage life with Parkinson’s, no doubt, for months, years or possibly for the rest of my days I’ll be looking at a new sort of life with Sars-CoV 2 which will probably require the same sort of flexibility. As least I’ve had a practice run. PS – Please don’t tell my partner, Noel, he might stop ironing 30-04-20 A funeral in the village I have just had the very sad experience of marking a funeral in the village. We received a message this morning giving the information that the funeral would be at 11.45 and because of social distancing rules the family would like the village to line the road to mark the passing of the hearse.

This is not a person that we know, but in such times as these when the more normal celebration of a life lived is not possible it’s the least we can do and hope it brings comfort to those mourning. It doesn’t take much to arouse my emotions and I found it extremely hard to watch the cortege being led by a walking man and the hearse being driven by a man wearing a face mask. I shed tears, I don’t know who for, maybe for all of us. Yet in the midst of the sadness one can only take comfort from seeing the village out in force as a gesture of solidarity, people who don’t live on the main road, as we do, had driven or walked to be there to acknowledge the ending of life many of them won’t have known. I noted that our neighbour was wearing a cap, presumably so that he could use the time honoured courtesy to the dead by removing it. 30-04-20 The village shop We live directly across the road from the village shop and post office. It is a “Premier stores” operation which I think is a franchise but owned my Anwar, who lives above the shop with his family. He has run the business for a couple of years now, the previous owners having retired. Anwar is a successful business man who owns other businesses but he has tried really hard to become part of the village entering vegetables in the village show, etc. Even before the pandemic the shop, for us was both blessing and curse. In the summer months when the bedroom window is often open, my partner complains that early morning deliveries often wake him (they can be very early) and that vehicles from the nearby local council depot leave their engines running ( and radios blaring) while they pop into the shop to get sandwiches and a drink before starting their day’s work. He also gets irate if someone parks across our driveway while they go to the shop, even if it doesn’t disrupt us at all. On the plus side however, Anwar manages to keep a huge range of stock for such a small shop and is open for long hours so if we are ever stuck for anything, or want an “emergency” bottle of wine he or a member of his family or staff is there. As the social distancing rules came in we watched, sometimes in horror, as people came to terms with what that meant for visiting the shop. I was extremely concerned in the first few days by the lack of apparent awareness displayed by some of Anwar’s customers. I wondered what to do about it. Village politics can be tricky, whose job was it I asked myself to suggest to Anwar, who was working really hard to keep up with the extra demand from villagers not able to get further afield, that maybe a little reorganisation might make everyone safer. It was suggested that I contact a particular well known and respected couple of resident. Extracts of e-mail from me: I have been wondering whether there is any coordination of Littletown’s community response to the current really difficult circumstances and it was suggested that you are the people to ask, so I hope you’ll forgive me if I am asking the wrong people.

Living across the road from the shop we are also aware that social distancing at the shop could be better. Anwar is doing his best to keep the shelves stocked and give people a good example. Obviously the shop is going to be a vital part of successfully traversing the next few months for many of us, but it could also be the source of infection too. I feel that there ought to be some discussion with Anwar about what he can do in the shop and how we can help him. I suspect he would be pleased to know he would have the village’s support if he for example limited the number of people in the shop at one time, asked people to use hand sanitizer on entry, queued outside at safe distances etc. It would be good if there was a community leader who could have that conversation with him - is there someone? Essence of reply to me: Mike is a member of Littletown Community Council and having discussed this with him he feels that, as Chair of Littletown Community Council, Dickon should be consulted so I have forwarded your email to him. Extract from my reply: I am sure poor Anwar is as you say overwhelmed and he is doing a great job its the customers who need a bit more discipline especially (from observations) the tradesmen who stop by in their white vans. Marks on the pavement to keep people apart while they wait could help too. Thanks to Mike for taking this up. I don’t know if my intervention made any difference but by now, there is a one in one out rule, marks on the pavement outside to establish distancing in the queue, a Perspex screen protects the staff at the counter and contact with goods handled by customers is minimised for them. We still look on with dismay sometimes at the behaviour of some waiting in the queue, and as a result absolutely minimise visits to the shop. Anwar also delivers within the village to those with additional vulnerabilities. He and his team are certainly central to successfully living in this village under lockdown.

May 2020 - Reflection on Contacts When I look at the people I have been in contact with during the lock down its quite a surprise to see how varied they are and to note in some relationships a change in the level of contact both in quantity and depth. My younger son: he lives on his own, works in hospitality and therefore was interacting with lots of people in the days prior to the lock down. In the early days I was worried that should he get ill with COVID19 and follow the guidance and just take himself to bed then he could quite quickly get seriously ill and no-one would know. I impressed on him to be in touch if he felt ill and decided to phone him every few days. I have probably “chatted” with him more over the last 2 months than over the last several years. He spent 3 years travelling in New Zealand and Australia and over that time it was often difficult to make contact and we got used to not speaking often. Now he lives fairly close by he comes round at my invitation, often enough but the inconsequential chat every few days has been lovely.

A school friend: a friend that I have kept in touch with over many years, (Christmas cards, visits and meet ups when we are either of us in the other’s part of the UK and so on), sent an e-mail checking that I was OK. It was nice to receive, and stimulated a contact with a further school friend. Social media: I have spent more time on social media and increased my contacts on Twitter. There are many Parkinson’s advocates active on twitter, particularly those who have young onset Parkinson’s. Since I have been more active I have become part of a network and feel I have an individual relationship with some of them now. Of course they are spread all over the world. One young woman, an Australian married to a Peruvian and living in Peru wanted to make a video to encourage people with Parkinson’s to take up exercise. She put out a call for help and in the end 13 people, including me, contributed to a suite of videos. https://www.youtube.com/playlist?list=PLnijJ3mT6Is0ZHbjk4HN0wqz3DboUIcHt Doing the recordings and then being active in promoting them was a good positive activity during lock down. I note they have had 535 views – not bad. Reaching out: I have also tried to make sure I check that certain people that I wouldn’t often contact are OK. This hasn’t always been rewarding. 07-05-20 There is a quite noticeable increase in traffic today. Perhaps, after all the public are not capable of understanding anything other than very simple instructions. As far as I know nothing has changed vis-a-vis the social distancing rules but people in the queue for the shop, cars going by and according to my partner those walking around the village seem to have relaxed them. The announcement of a route map and some gentle opening up expected Sunday evening seems to have signalled a change. I haven’t talked to anyone so I don’t know what they are thinking but my own feeling is that the threat from Sars Cov 2 remains serious. Globally governments went into almost panic mode but the more liberal regimes don’t seem to be able to stay the course. All rather depressing. 13-05-20 In this morning’s e-mail was one from Action for Happiness, I nearly deleted it but something made me stop and read it. They were offering a 10 days free on-line happiness coaching and asking for people to share the offer. I thought I’d have a look so after breakfast and an exercise session I was going to post it on a couple of relevant Facebook pages, one local village, the other Parkinson’s. I thought that I had better have a look first and signed up. Today’s activity was basically asking me why I had signed up and what I hoped to achieve. I found myself writing that I have been apathetic and lacking in motivation to do the things that I

know would cheer me up and I hoped that the coaching would kick start me to get on with things. That was the complete task for today, there will be another communication tomorrow. Since then I have:

• written an e-mail asking our Zoom quiz community to try to be positive and not moan (less bluntly than that).

• Listened to the WG briefing at lunch time and felt encouraged.

• Made a charity donation recognising the birthday of a friend who died suddenly and far too young of

an aggressive cancer – it happened when we were away on holiday, and I missed the funeral. • Written a proper letter to my 8 year old granddaughter of my thoughts on the pandemic and

suggested she write hers back to me and that we keep the 2 letters for “history”

• Posted that letter and a card to her little sister (made bookmarks for each) and put a letter than I wrote on 7th which had been languishing on the table in the post.

That’s not an apathetic day – guess the coaching worked! 11-05-20 Looking back over last week I was really lethargic, I got very little done. I started the week rather down hearted, not that there was anything really bothering me that I could put my finger on. It is a feature of Parkinson’s that arises now and then. I am in the main a positive person but occasionally I get low. It’s not helped by feeling that there is little that I can usefully do. Pottering round the garden in an endless and unwinnable battle with the bindweed just doesn’t cut it and I can’t bake anything as I’ve basically run out of flour. 15-05-20 This morning’s radio coverage was all about the importance of getting children back to school. In England they are planning to have reception class (4/5 yr olds) and year 1 (5/6) back after half term. In the discussion there was comment about the need to compete with other European countries whose children are returning to school. In many European countries formal school doesn’t start until they are 7 so why are they choosing our youngest children first? This is the age group that will least understand the need to keep distances and probably the ones who will catch up most quickly when they return. I feel sad at the thought that the one clear lesson these children will be learning is that other people are dangerous, that they should keep away from each other. Will we be breeding a cohort of children whose communication with each other is damaged by lack of trust. Indeed I wonder if such health considerations and the desire to separate and segregate are at the root of our long term class divisions. I remember as a child in the 50s and 60s being discouraged from playing with certain children because they “were dirty”, “had nits” or I might catch something from them etc. Will we move ourselves back to a less equal world as a result of this pandemic?

There is also plan to have year 6 (10/11) back at school and I can see the point of getting them prepared for transition to secondary school. 21-05-20 The Littletown Philospher This afternoon we took a stroll around the village. As usual we can round by the pub at the centre of the village and close to home. As has also become usual there was an A-board notice outside, today’s said “The best way to appreciate something is to be without it for a while”. We have become used to reading these little messages from either the landlord or his wife. They are obviously intended to lift the spirits a bit as they are often funny, usually meaningful. Nice gesture. May - The Zoom phenomenon The blossoming of all sorts of activities using Zoom that act as substitutes for face to face contact has to be a real hall mark of the Corona Pandemic. Exercise classes, dance, church services, academic conferences, information sessions, interactions with medical clinicians, cultural experiences and many more have sprung up with the abandon of weeds in welcome rain. There have been times when the opportunities available just got too much for me and I went into the garden to read a book with real pages that you have to physically turn when you’ve read to the end and words that stay in the same place. Zoom had begun gathering strength as an application before the virus pandemic reached us and I was fairly familiar with using it. However for lots of people particularly older ones there was a steep learning curve if they wanted to jump on the bandwagon. My partner and I have hosted 2 regular events and find ourselves helping people to get to grips with it. Just when we think we’ve got a workable set up with everyone familiar, someone seems to get something wrong and there is a mild panic while we wait to get someone linked in. Sometimes we wonder why we go through the stress of it all. Firstly every Tuesday evening our Quiz team (plus the quiz master) get together to replace the missing pub quiz. We take it in turns to set the questions and now fully appreciate how hard that is. My son and his partner who have young children and therefore seldom got out even before the lock down have joined us too. It’s surprising how their knowledge base is so different from us older folks – it doubles the difficulty in setting questions. But nobody knew that the oldest name for a pub is The Bush developed in Britain from the Roman practice of hanging a grape vine where wine was sold. The other event is a fortnightly Zoom around on a Friday evening. About 20 people join us for an online open mike type of session. In ordinary times we run house concerts for storytelling and these 20 are some of our audience. The content of the evening is based around stories but also included, songs and music, jokes, poems, readings, jokes. Its been fantastic to see people who wouldn’t normally “perform” come up with contributions and we have a veritable Robert Service style poet in our midst who surprised us all. Every time we send out the invitation we half expect some excuses, we thought interest would wane but

back come the acceptances with expressions of anticipation and delight, and that’s what makes any hassle with technology worthwhile. May Snippets Things that have caught my attention, provoked a tweet or some such.

Early May got involved with a campaign to raise awareness of Neurological conditions

Wales Neurological Alliance

@WalesNeuro

·

4 May

Together, we can help make everyone more aware about neurological conditions! #LivingWithNeuro

Please help us share their stories

http://bit.ly/LivingWithNeuro

Tweet from me 5th May “Thought – Every time I weigh myself I have put on weight. Hypothesis weighing is associated with weight gain. Conclusion – stop weighing.” 6th May seen on twitter “How do you do it? Said night How do you wake and shine? I keep it simple said light One day at a time” Seemed helpful when things were getting difficult. Got involved in a fund-raising challenge

Not so energetic but again harder than it looks. The main thing is have fun, keep active and raise a bit of

dosh! .

TWOPOINTSIX Challenge

TWOPOINTSIX Challenge. Scarf juggling in aid of the Cure Parkinson's Trust. Enjoy! Please make a

donation at www.justgiving.com/fundraising/ei...

youtube.com

14th May blog post re face masks and communication https://wordpress.com/block-editor/post/peptalking.home.blog/251 Tweet from me 31/5/2020 I am disheartened. In the early days of Covid19 restrictions, Twitter (and other media) was full of positivity, sharing coping strategies, info and ideas. Now it seems complaints and accusations are the norm. I preferred it when we were all in it together!