I hope this post is appropriate and Not in anyway offensive. With the great diversity and contributors around the world , I am wondering how your lives have changed due to this awful virus.
I am in the midwestern US. We have been told to stay home unless we need essential supplies etc. Many are angry and feel it is too long and their rights are being taken. In my state, primarily the bigger cities are the most profoundly impacted. Many long term care facilities have several cases. Our children rarely stop by and they must keep their distance. Dans nurse makes no regular visits. It’s really not bad too bad for us. We’re hanging in there. I am anxious and worry that I am doing enough to protect us from this disease, My best to all of you. ❤️
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Karynleitner
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I was wondering how this was affecting various people around the world. I am in the U.K. And as I am over 70 and have some health risks I have been informed that I have to stay at home. I am only allowed out into the garden. My sons and their wives are bringing in groceries, ready meals etc. I have been following the situation in the States with Much concern as there seem to be many who are in denial about the seriousness of this virus which must be very worrying.
Hi kenh1...I am in Canada (Ontario) and we are horrified at how some States are already 'opening up'...yet they have the most 'infected' in the world!! Thank goodness our borders are closed for non-essential travel..here in Ontario our Prime Minister and Premiere are thankfully on the same page!!
I think we Brits are more trustful of those in authority and tend to have a herd mentality and pull together in such situations it does help that our Prime Minister got the virus. Reminding us that no one is invincible. Have you seen the man who approaching his hundredth birthday walked 100 lengths of his garden as a sponsored walk for our NHS and made a record of you'll never walk alone which is now top of the hit parade. It has just been announced he has currently raised over 26million pounds and the amount is still rising.
Hi. Glad that you posted. I hope it will help rather than bottling it all up. It is quite natural to feel worried. This is an unseen enemy and it is scarey. It is good to hear that you are not in a big town as I am sure that that makes things easier when distancing. We have just been advised in the UK that we need another 3 weeks lockdown. Ugh! A majority of people understand that the restrictions are for the benefit of everyone and not just about taking away people's rights, but I think everyone has the right to feel fed up about it as our whole lives have been disrupted. I think you will see have seen on this site that people are trying to help each other by sharing pleasure from little things around them and that is probably the best way to cope with the current situation. When we are caring for someone with PSP/CBD that is what we have to do all the time anyway because we are already in a scarey situation. I am sure that you are doing the right things to protect yourself and Dan from this virus.I remember many years ago being told by someone 'If I could smack the bottom of the person who causes me the most worry, I would not be able to sit down for a week.' Good luck and big virtual hug. AliBee.
The old bag and I just carry on as near to normal as possible. We are pretty diverse as I am a Scot and she is an English heathen, but I have taught her how to behave. Our life has not suffered much change as we do not have any nursing care(they signed her off the list).You just have to keep going and laughing.
Your post is certainly not offensive in any way - we are in a global crisis and all in it together and talking about our fears is therapeutic.
I have a good friend whose son, 45, is seriously ill in hospital with the virus. Our NHS has been fantastic in keeping her up to date all the way, albeit putting in 12 hour shifts and still finding the time to sit with others who they are not going to be able to save, giving them a hand to hold. Here in the UK the majority of the population continue to stick to the rules in order to protect our fantastic NHS and those in other front line services. As Alibee said, sharing the little things around us at such a scary time is in the spirit of all pulling together. Technology today allows us not only to speak to our family/friends but to also see them - the proper hugs will be plentiful once lockdown is lifted.
I am sure you are doing everything you can to protect yourself and Dan. If you find yourself getting over anxious, come onto the site and chat, there's no rules and I do worry that folks might not be coming on here in case they feel they might not be sticking to what the forum is all about.
We will come out of this but we all have to do our bit, help others if we can, without being tempted to flout the rules. If lockdown is eased too soon then we can expect a second wave of this for sure.
After 4 years and 8 months of care giving and Larry dying last October I am still too tired to get very worked up about the pandemic. I am isolated living alone. I am not minding the solitude.
I feel much the same as everyone else. Not much has changed for us since hubby doesn’t get out of the house much. Physically and now mentally he’s easily thrown off of his game. As soon as I install the elliptical bike thing that is sitting in our garage we’ll both be able to get some much needed exercise.
It saddens me that here in the US people think that they are immune or resilient and not everyone is following the rules. I’m doing what I can. I’m in the process of finishing up 32 cloth face masks for a friend of mine who runs a small curbside business. When she reached out to me and asked for them, I didn’t hesitate to get the sewing machine humming.
A tremendous “happy” thing that has entered my life is Frazzle, Razzle and Dazzle. A little family of hummingbirds. Best distraction ever!
Thanks for your reply. I am also saddened by some people’s response. I never thought so many people would be like this. So sad. That is why I am curious as to how people are feeling in other parts of the world. Also, how disease is progressing or slowing down there. This is unknown territory.
Best of luck to you and your new little “friends”.💜
I lost my husband last year so no more caregiving duties. I'm kind of enjoying the solitude. At my age, late 70's, I'm supposed to be staying in so I'm just staying busy around the house. I've been cooking myself better meals and getting more sleep.
I wish that there was something I could do to help, but haven't found anything that they will let us seniors do, but stay home and try to stay healthy. That is the part of all of this that I find very frustrating. I don't like feeling so useless. I find that it does help to look for the bright spots and enjoy them when you find them.
I've actually found the time though to really think about and solve some of the problems in my yard that I wasn't able to figure out before when it never seemed like I had the time. Of course the beautiful weather we've had this week didn't hurt either.
This site is meant for people suffering with PSP/CBD and their carers. There has never been any suggestion that we are only allowed to talk about this evil illness alone. Ever since I have been on here, some 7 years now, every topic under the sun has come up. YOU are allowed to talk about anything you want!
Personally, I think coping with Covid is probably the most frightening thing in the world at the moment, if like you, you are caring for a loved one. Of course it's a subject to be discussed. My heart goes out to you. I really don't know how I would have been, if this had happened during Steve's journey. Please feel free to ask any questions, without regular visits from the professionals, you must really feel alone. That's where we come in, we will, to the best of our ability, try and get you through this crisis. Rant and rave as much as you want, we are listening. One thing I have always tried to get through to others is, a lot of people here only read, to frightened or shy to join in, you expressing your feelings, helps them just as much, as they know they aren't the only ones feeling scared.
All our lives have been affected. I am trying to see the good side. It's so quiet here, no noise from the nearby motorway. Only the sound of the birds. Already I have seen birds that do not normally come into my garden. The air is so much cleaner already, from the lack of aircraft flying over. I only go out for my daily walk, people are friendly, every one keeps their distance, whilst saying hello. I have spent a lot of my life, thinking and scheming where to go next on holiday, be it a weekend away or two weeks overseas, or when Steve was ill, getting upset about what tomorrow would bring. Now, for the first time, I can only think of today, I know that's what we should all do anyway, but I am finding it quite liberating, actually doing it.
Thank you. I too feel there are good things that have come. Most people’s lives have slowed down. They are cooking more and spending time at home. Has everyone in the U.K. been asked to stay in, or only the more vulnerable population. ? What’s the general mood? Does it seem that the number of cases is still riding at a rapid rate?
Our numbers we’re getting better, but a group of a few thousand had a protest. We will not know for a few weeks whAt impact that has made.
Thanks So much for your kind words. The birds sound lovely.
Yes, most of the population is in lock down. We are allowed to shop and a daily exercise. Although the most vulnerable are asked to stay indoors completely. No riots yet, people are too scared to go out. Think that will be a serious issue, when they start to lift the sanctions. It does look as if our figures are starting to plateau, but the death rate is still very high. I feel sorry for folk that live in huge high flats with kiddies to try and entertain. Must be a nightmare. Having lived through PSP, this lock down hasn't really changed my life, but no doubt, when the bill arrives to pay for all this, life will become slightly different!
As one who has been asked stay indoors the lock down hasn't really changed my life but I'm relieved it is happening now rather than this time last year when carers and nurses were coming in and out of the house from morning to noon.
My thoughts and prayers are with all who are having to cope with PSP/CBD at this difficult time.
So true Anne. Living through PSP certainly is live changing. I’m very accustomed to staying at home. Sadly, we do not see our children much due to the virus. They stop for a quick visit, but do not come close. I do worry about the virus. I seems awful.
Some people here in the US feel the disease is not as bad as they feared , I worry these people will not act responsibly and cause this to last even longer.
I’m sorry people there are scared, but Fear may be a good motivator to protect yourself and others.
For myself, my biggest change has been to NOT get out to Walt Disney World property. Whether its the shopping, theme parks or their ample nature rambling areas, I do miss it. That aside, I am a natural introvert and don't find this confinement too much of a strain.
Here in London we have all been asked to self-isolate unless you are an essential worker. You can exercise once a day. Most people are conforming and it's strange to see empty streets. I don't know how I would have managed if Chris was still here. It would have been such a worry. As it is I miss contact with my family and friends- especially the grandchildren but am okay with my own company.
The big worry is how will it progress or end ! Good luck. Love Jean xxx
There was a bee flying under our patio cover too close to the glass sliding door. I found myself telling it not to start building a hive when there are so many other places to go. I told him to go find a quieter spot. So... I’m bored enough to be talking to insects now 😂
I think you have every right to bring up the COVID-19 subject as it is of extra concern if you are caring for a vulnerable person or are self isolating, having lost a loved one through PSP/CBD. It is, at the best of times an isolating journey as the disease progresses so many of us are used to the feeling of feeling alone as communication becomes so difficult. I think it’s the fear of the virus being introduced by carers, medical visitors or such like or feeling abandoned by them as they are unable to visit. We all know the this virus can prove deadly and it isn’t a peaceful or pleasant end to life should it take us and so we want to protect our loved ones from that. Of those who have lost a loved one and are living alone in isolation, it is the loneliness of not having direct human contact with family and friends. Social media is a great help but not the same, we miss the hugs, touch on the shoulder, pat on the back, we are after all social animals whether extrovert or introvert we all need some social interaction. This virus is going to prove a great leveller I’m sure, let’s hope it makes us become better people when it’s under control and life returns back to what is our own personal ‘normal’
We are in the state of Ohio, and as you, we are on lockdown, while watching the protestors all over the television pressing the Governor to open for small businesses. We are self-employed, and fortunate that our entire staff is working from their home offices, but like everyone we have had to make some significant decisions the last few days that will directly impact our business ....
As for our quarantine, we are officially DAY 40 today ... I looked at Momma this morning, and said, Mom we are on Day 40 quarantine today, and she looks at me, smiles and whispers, " its no different to me" ... and she is exactly right. This life of caretaker the past two years has prepared me for a quarantine - my past life would be insanity for me -- I am used to the go go go life....not anymore. We are still in a weird season of time here with the weather, one day it is spring, yesterday it was winter, and today ... well, Im waiting to see. If it is nice enough, I have been taking Mom outside to sit and enjoy fresh air. One day at a time ... enjoying the quality time together. We made a list of favorite movies that Mom enjoys, we are half way thru it, we listed her favorite meals, and managed to make some of them, more to come! I went down to a local river, and picked up some river rocks, and we are painting rocks. Mom is critical of her overall ability to paint, so I have her painting all the rocks one color (background) white ... keeps her hands moving, and then Ive been adding the other colors -- she feels included and loves it. We have pulled out some board games, and she has struggled with that --- she gets tired quickly, so we do things in small doses ....
Grocery delivery has been so different --- having it delivered, unless I have my son go out; I have tried not to have him do that --- we have been wiping everything down that comes into this house. Disinfecting constantly .... Amazon deliveries stay on the porch, and no cardboard in the house, etc. SO MANY CHANGES, and new NORMALS for sure.
Facetime / Video calls with family has been refreshing for mom. I have arranged my brothers to call on specific days, so that mom gets a continued dose of seeing her sons -- and the grandchildren have all been lined up -- Mom takes a nap every afternoon, that is a new normal for us. Zero visitors -- we are strongly considering the possibility of having my brothers come over, and sit across the room, but I have to overcome my anxiety about that fear. It has been month. ... we shall see.
I am afraid if people get too anxious, a second wave will return ... but my heart does go out for all the small businesses, and to be quite honest --- my brother is a police officer, and the domestic violence calls have increased, due to isolation ... so many different lives, and with that I feel incredibly blessed to have peace and quiet here with our family. I have enjoyed the "re-set" in my life, but whew -- 40 days is a long time. I am also beginning to imagine sunshine and beach somewhere with my favorite adult drink.
Time has been suspended temporarily, but waiting for the play button to be pressed again on our lives. Light switch analogy - we had to flip the switch, but I think its more of a dimmer switch to open back up ... or at least thats my take on it.
I think this is a great topic. I’ve always enjoyed the topics that canvas each other for how we’re dealing with this or that just to get to know each other as a community better and bring us together even more.
Here in Vancouver BC we were one of the early areas affected in North America – just like Seattle - From which we are just a bit north. Our curve has flattened, and people are really restless now to get out in the good weather, gather in groups and see Restaurants re-open etc! - It’s not going to happen even the smallest bit for at least a month and maybe longer. We are trying to be optimistic and keep telling ourselves we know it’s going to happen it’s just a matter of when.
I’ve been fascinated by the protests in the US. It doesn’t surprise me because I think there’s a rebellion against over-controlling-government that was part of the foundational culture of the US .... so maybe no surprise to see it breaking out now? Problem is, no one in our generation has experienced a public health emergency like this, snd don’t seem to understand they really don’t have control over it - and we all know how some people react when told “you don’t have control”!!
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How many years did you have symptoms for before you where diagnosed with psp please
Has anyone dealt with aggression, hallucinations with CBD?
My last word 
Does everyone with PSP have personality changes?
" No room at the Inn " ! 
