A big wave to all in these difficult times. - PSP Association

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A big wave to all in these difficult times.

Kevin_1 profile image

Hello folks

It's quite quiet here at the moment.

Please, if you can, do even a short post and let us know how you are doing.

Wishing everyone the best in these difficult times.


84 Replies

Hi Kevin

Yes very quiet here, taking the dog for 3 walks a day but only short one as I can’t leave Colin for long,

Weather here not so warm and nice today so not in the garden, wind is a bit cold.

Hope your doing ok and finding things to fill the gaps.

Love and hugs

Helen xx

Kevin_1 profile image
Kevin_1 in reply to Helen119

That's good to hear :)

You sound so 'coping' Marvelous :)

You put me in mind of an event from my younger days.

In the wilds of Northumbria there was an exercise where the Local Authority, the Army and others rehearsed a response to a nuclear fallout.

Right in the middle of it and with everyone wearing suites and helmets two small vans pulled up. Four ladies got out and set up a stall with hot tea and cakes. When the officer challenged them and told them to leave they scolded him saying, "Young man in a nuclear disaster people still need tea and cakes." They refused to move and when the officer had left a lot of helmets came off and an orderly queue was formed.

Be well



Helen119 profile image
Helen119 in reply to Kevin_1

Brilliant xxx

easterncedar profile image
easterncedar in reply to Kevin_1

Oh my, is that quintessentially British (as we like to imagine it) or what?! I love that story, Kevin. Thanks for the smile.

Kevin_1 profile image
Kevin_1 in reply to easterncedar

So British it even shocked me. :)

Farmers wives I expect... Sensible and Tough... Bet you've got them too ;)

Take care ec.




easterncedar profile image
easterncedar in reply to Kevin_1

Talked to one of my mother's friends yesterday. She recalled the rationing in the war, and how folks had to entertain themselves at home. We could use their toughness now.

Hi all

I've been unwell since 20th. It is not a pleasant beast at all.

Having doorstep drops done & registered on our LA isolation support register today.

Worrying how my Mum is as got no clue & thinking of all the families who are also now separated from their loved ones if they are in lock down in homes and all the unpaid carers having to deal with this at home with their loved ones & trying to keep them safe.

I feel like in a world of utter disbelief & horror as this unfolds for the UK & the rest of the world.

Devastating & heartbreaking .

Love to one & all



Hi Sam

Big hugs to you!

So sorry to hear you are unwell.

Yes, I feel so much concern for folk who were struggling anyway and now have this to contend with as well. It is heartbreaking.

I'm so glad you are getting some support. Those people are amazing.

"This too will pass."

I do hope you have a fast recovery.

Keep in touch, please.




Thursday I felt like I had turned a corner but then that night it hit me harder.

Our LA has been amazing at their response & getting things in place over last two weeks. Locally we had just started to see normal again from all the severe flooding throughout the county.

How are you passing your days?

Yes, that flooding devastated a lot of folks homes. :(


I've been self isolated for a couple of weeks now. Trying to stay clear in case Liz get's ill, so I can be there for her.

I tried playing poker with the cat. She's got the poker face off purrfectly, but hasn't played her cards yet. I think she's trying to make me break and fold. :)

I got this nasty head cold which has been going around. It took me two weeks to clear it - which is the norm apparently. I wan't good for much in that time.

I'm a bit of a silly chuffer. I saw an article about an archaeological find in Bulgaria. A simple bread oven and a 'fossilised' loaf. 4000 BCE pre dating the Egyptians by some 3,500 years. The loaf was leavened too. There were photo's.

So I have been running trials in my kitchen and have palaeolithic bread baking down to a 'T'. :) It's better than most supermarket bread. :)

Done some gardening too.

It's like the world has stopped.

I feel sad.

Get well soon.

Thinking of you.



That bread baking & making sounds impressive. Do you have any photos?

That cat is keeping you hanging on!

My dog is going stir crazy I think as not gone out with me for 8 days.

I'm pleased that you've not had a call saying Liz is unwell.

Yes the world has stopped apart from this evil virus.

Sending you much love. Have you got people who are able to talk to?


Thanks, It sounds a lot more grand than it is.

It's like a pitta bread, but round and thicker.

Makes great sandwiches.

Take care


patch33 profile image
patch33 in reply to Kevin_1

Hi Kevin,

I've just eaten some of my second home made spelt loaf since we've ben in lockdown. Looks a bit like a brick but tastes delicious toasted with butter and jam.

I am also making a sourdough starter but as it takes a week , that will be for later in the week.

Thank goodness for books , internet, my little dog Patch,and a nice elderly neighbour, not going too crazy yet !


Dawn, xx

Kevin_1 profile image
Kevin_1 in reply to patch33

Hi Dawn

I mix spelt with a little white flour. It's very tasty isn't it. I've not got any at the moment though... :(

The internet is amazing isn't it! :)

Bake on and stay well.




I’m ok as well.


Kevin_1 profile image
Kevin_1 in reply to Cuttercat


Take care



Hey mum is in hospice since going in for a few days respite her hubby is visiting but myself and family are staying away for obvious reasons she is getting discharged next week delivering a hospital bed to home and will have nurses going in to get her out of bed and into bed on an evening such a worry I feel it’s risky just going to supermarket now Hope this blows over sooner rather than later love to all in here xx Debbie

Hi Debbie

Yes, risky it is.

I'm glad your Mum is able to go home.

It must be stressful for you all.

Wishing you all the best.



It’s like Christmas morning every day. It’s so quiet. Yesterday was sunny and the temperature reached 69F. During the day there was little foot traffic. After 5 I sat on the front porch and a number of people were out and about. I suppose they are all working from home and we’re taking some air to get out of the house when the work day was done. At one point there were three different toddlers with parents in front of the house. Two houses down from me the young couple who live there were out with their two small young children. I had no idea there were some many children around here. The worst of all this is I have been reduced to watching Outlander. Thank god for fast forwarding.


I've been watching a Turkish TV series - 75 episodes... It feels like a marathon... so slow and detailed. I will get to the end, I will!

Happy Christmas BTW


in reply to Kevin_1

The actors in Turkish shows all do a lot of playing with their hair. I wonder what that is all about.

Kevin_1 profile image
Kevin_1 in reply to


Hi Kevin,

Good to read all these posts.

For us, things are even quieter than normal, if that was possible!

I'm playing so many puzzles and the exercise bike in the corner of the room remains untouched despite my protestations in the mornings to give it a work out!

Life is surreal, indeed.

Have just heard a second member of my church here has died unexpectedly this week. And nothing to do with the virus. Being in Spain, albeit in an area where the virus isn't too rampant yet, I think most of us are wary of every little throat or cough issue, thinking the worst. I have felt a little unwell today but no sore throat or cough, just nauseous and shivery.

I am hoping it is the result of having to take the dogs out in continuous inclement weather. It's been miserable and cold here and expected to last another couple of weeks.

We are longing to see the sun again, but I guess it is keeping folk in their houses.

Although it may seem a little morbid, I have written down contact numbers of our bank and solicitors details ...and more...on the off chance that I am taken to hospital and Ian is left at home. Need to ensure things are in order.

It's all very sobering, and I'm afraid it has concerned Ian that I have done it, but I am ever a pragmatist, as well as an optimist...if that's possible.

Ian's carer has been withdrawn apart from 3 hours one morning a week so I can go shopping. It hasn't been a problem so far, though i have to work hard to remember.ber what day it is! Is anyone else having this problem?

Oops, I have to go ...another toilet run with our Sara Stedy!

Love and virtual hugs to you all.

Juliet x

Hi Juliet

Stay strong! :)

Yes, sunshine helps a lot.

There are a number of the old / usual bugs going around too.

Not at all morbid. Sensible. I have given my brother the access code to my house along with much the same info. as you gave, along with instructions about where the gin is stashed. :)

Hugs to you




Hi Kevin hope you are keeping well, most of us are in isolation. Stay safe amazing man. Big hugs xxxxx

Hugs back at you Yvonne



I've had enough now !!! Jokes over !

Like you I've had a cold so feeling low. I'm fine alone but struggle with not having contact - no hugs. I worry about the future. xxx

Kevin_1 profile image
Kevin_1 in reply to doglington


Yes, I'm worrying about the future... Humans are very dood at making things work out though.

Sending you a big virtual (((hug)))



Hi everyone,

Here in Santa Clara county, California with Mike and my daughter a kindergarten teacher, our dog, cat and one carer who comes four hours six days a week. We’re on shelter in place since March 16. But I can walk the dog, and my daughter goes for groceries every fourth day. She sees her students on line and we are managing. Virtual hugs to our lovely community. Stay safe and as we all know, keep on keeping on !


Kevin_1 profile image
Kevin_1 in reply to Caro2132

Hi Caroline

Great that you have it all so organised :)

Yup, We'll all keep on keeping on:)

Kevin it is hard being on your own isn’t it. I feel fortunate that I was able to have Johns funeral just in time. I am sure we all have jobs to do in the house and everyone garden is going to look pristine but the thought of elev more weeks of this ....... I cannot even get bread flour. Just keep smiling xx

Kevin_1 profile image
Kevin_1 in reply to Dickenson2


There is being alone and loss on top of being alone.

Being alone I can do. Years of single handed ocean sailing etc. After my first month alone at sea I was approaching Barbados. It was night, I could see the lights of the houses. I though of 'all those people' and had such an urge to slip on by.

What makes it hard for me is knowing Liz is just a mile away. I yearn to see her so much.

Though your situation is different, I imagine the isolation makes it most poignant for you.

Sorry to here you haven't got bread flour. We seem to have become a nation of bakers overnight. One of the mills I buy from (and it's sizeable) has had to close their online shop because of demand. Unbelievable!

Sending hugs - You are great :)



Hey Kevin

Let’s be honest it’s a pile of s**t but we just have to carry on as we can

Love to all

Keep safe x

Hi Kevin.Thank goodness we were able to give my darling Duncan the proper Islay send off he deserved.....Piped out of the church ,Bruichladdich malt wee dram at the graveside and a large crowd of people who loved and respected him.A few days later and we couldn't have done any of it.Helen,our youngest,38! ,is staying here as Glasgow is pretty grim and she can work from home here.Luckily the weather has been good and we are doing a good walk every day.We are also making an occasion of meals and cooking really nice food.Could you share your bread recipe?Grief keeps coming in huge waves but I am still standing.Disbelief that after 46 years and so much fun till the awful last few years that I face future alone.I sent him a card once with the message -Grow old along with me,the best is yet to be.He was 50 then,Bruichladdich distillery manager,a big smiling man with oil on his hands and delighted with his life.Who knew what was lurking in the shadows of his brain?It is that I am struggling with.That he was so unhappy for the last few years _depending on everyone instead of everyone leaning on him.Guilt that I wasn't always patient eats away at me in the night.Of course you all will understand this as I think we all find the dismantling of our loved ones so hard to understand.Once this isolation is over,I will go and see my grandchildren .That is my goal.Stay safe everyone.

Nanny857 profile image
Nanny857 in reply to Westerngirl

Hi Westerngirl, "Grow Old Along With Me" one of my favourite songs by Mary Chapin Carpenter which I play most days.

Your story is similar to mine, W and I had 46 lovely years together but PSP made the last year heart breaking. Grief can be overwhelming at times and the tears just come, better to let it happen than to hold them back. As for feeling guilty, don't, I know it's hard not to, but we were plunged into a situation that we had no training for. PSP/CBD has all of us in its evil grasp and affects everyone.

At our last meeting in September with the neurologist, I explained how I was finding it very difficult at times and my patience wouldn't be the best, he told me that even professional staff would not be able to do what we were doing. So please hold on to that, you did your very best, but most importantly you were there for him and gave him your LOVE unconditionally.

Now enjoy those lovely meals with your daughter and hopefully the weather stays dry and you get out for walks. After this crisis is over, boy will our grandchildren get the biggest hugs.

Thinking of you, lots of love,


Kevin_1 profile image
Kevin_1 in reply to Westerngirl

Oh, Western Girl

I'm so glad he had a good send off. I know that your community is quite small. He must have been a loss for many. Bruichladdich Manager? I imagine that was rather demanding. Funnily enough I am not so keen on Whisky, Bruichladdich and Islay single malt are two of the exceptions. Could it be the peat?

I cannot imagine what it must be like to suffer this illness. Liz was very strong with it. I can imagine that it must have been very hard for him. I expect you did everything yo could to make him happy. Sometimes everything possible is not enough and trying is no failure.

I'm so glad you have your daughter with you ate this time.

Keep safe and thank you for sharing some of the magic of Duncan's life and you both on the isle. Beutiful.



Kevin_1 profile image
Kevin_1 in reply to Westerngirl


You asked for my bread recipe - Sorry.

I don't have one!

I use bakers percents (the professional bakers system).

The total weight of the flour = 100%

Everything else is given as a percentage of that.

It means I can scale up and down depending how big the bake is and more importantly when using a new flour I can easily tweak it to get the best out of it.

So for an untried flour. 100% of it with 65% water and salt at 1.5% and instant yeast at 1tsp/500g flour. Oil at 3% if I'm using it. The oil or butter gives the loaf lasting properties. This is a fool proof formula and doing a bake like this shows me how the dough performs.

Then I will move to my standard for weaker gluten (UK organically frown weal gluten flours) 75% Wholemeal 25% white and if it will take it increase the water to 75%. You can't knead with that much water. The dough is kept in a bowl and the stretch and fold method is used.

From there it's about adding fermented rye, or not and just varying it.

Currently I am enjoying 75% wholemeal 25% white kneaded and proved and left in the fridge overnight. The long fermentation makes for fantastic flavour. Then over the next few days, when I want some bread, I tear of 120g of dough per person, flatten it and leave it to warm on the side in the kitchen. Then a quick stretch and shape into a ball and put a cast iron griddle on the hob. When the griddle is very hot (300 deg C) I quickly roll the dough to a little under 1cm thick and pop it on the griddle. 3 minutes each side. It ends up like a thick pitta, 3 or more cm thick, with the texture of French bread. It has a thin crispy crust with a slightly toasted finish. And after being allowed to cool it makes lovely sandwiches.

FWIW this is the oldest form of baking bread except in the stone age they would heat a flt stone by building a fire over it... Their bread would have been very good indeed. I suspect the old cottagers baked like this too. Baking powder was a recent invention.

It means every bread is fresh baked. :)

Well, you did ask :) ;)

Lockdown and nervous of contracting this disease, don't fancy ending up in one of those makeshift wards with no family member allowed to hold my hand. I'm planning to dig up my lawn to grow vegetables. Small greenhouse (flat pack that I'm not even sure I can erect single handedly ) at the ready, bags of compost at the ready, canes, string, gardening gloves at the ready but the seeds have failed to arrive yet!!!! Oh the joys. At least it's the first day of British Summertime, so hopefully we'll get some good weather to see us through this chaos. Keep smiling everyone, it's all we can try to do.

Sending love

Kate xxx

Kevin_1 profile image
Kevin_1 in reply to Katiebow

Go for it Kate :)

You sound like you know what you're doing. :)

If my garden had a name it would be 'muddle by".

I do wish this cold wind would b' off and let me get on with it. :)

Yes, I've got some Padron chili seeds yet to arrive (my total favourite), but they are taking an age. No matter, because I didn't do my winter clean up and found some shrivelled chilis in the garden with seed in... I'll give them a go.

It keeps me occupied, I guess.




Katiebow profile image
Katiebow in reply to Kevin_1

I know Kevin the wind is biting and does slightly takes away the pleasure of pottering in the garden. My garden isn't that big and for the first time last autumn I put it to bed so not too much to do expect watch it all fill with flowers. That is the reason for the dramatic digging up of parts of the lawn (metre squares I think) hoping it will keep me busy during these long lonely days. Xxx

Hi Kevin and everyone in these difficult times. It has been 5 months since Mary left me and part of me says I'm glad she did not have to witness this virus. I also wanted to say that I worry for our carers who tirelessly go out day after day to support those still being cared for either at home or in a home. They do not have up to date protective equipment because the companies they work have difficulty competing with the NHS who have considerable purchasing power. They also feel forgotten. It is about time we applaud everyone fighting this virus. They are all part of a team of heroes. There will be a future for us if we keep to the rules. There is also life after bereavement. Take care all and stay safe. Rob

Nanny857 profile image
Nanny857 in reply to Willow_rob

Hi Rob, I echo your comments. Glad that the good Lord took W in December past and really feel for the carers working for private companies on the front line, going into peoples houses with no protection. I was talking to one of the carers who looked after W last week, she told me her protective clothing is plastic aprons and latex gloves😱

Take care and keep safe.

Lots of love, Nanny857xx

The obligation of our rulers and institutions is that firefighters have fire suits and helmets, the military, protection and personal weapons available.

Why not have masks, suits, glasses, gloves, disinfectant liquids for healthcare personnel?

Oh Luis

Because the very wealthy who sit in government here are too greedy!

But, I guess you knew that ;)

Hi Kevin!

It must be an epidemic because it also happens here in Southern Europe

Hi Luis

You lost me on that one. Chuckles.

Something in translation?

Yes, we've been watching the plight of Italy and secondarily Spain. You're further along the curve than us.

Stay safe and keep well.



Hi Kevin!

I was referring to your phrase:

Because the very wealthy who sit in government here are too greedy!


It must be an epidemic because it also happens here in Southern Europe!

Hugs and luck.



Very good :) :)

Can we put them in permanent lock down? 😈

Sorry to hear that your lock down has become more restrictive today. I hope you have what you need.

Stay well friend



At the moment everything in order. Thank you.

Hug and good luck

Kevin_1 profile image
Kevin_1 in reply to Willow_rob

Hi Rob

Yes! And completely underpaid too.

They are heroic.

Stay safe :)

Best to you


Dear Kevin

Sending hugs to you both in these strange times. I too, like Rob, thank God that Chris is no longer here and isn't having to go through this all. It's a bit of a double whammy, losing Chris at Christmas and now self isolating due to health issues, so only contacting everyone by phone etc. However the weather this week has been good and I've been sitting out in the garden and I'll try to post a video of life before lockdown to cheer everyone up. Hope I can do it!

Take care, keep safe and well.

Keep on keeping on


Hi we are doing ok here in Norfolk UK Been in Isolation for a couple of weeks now we have a garden so doing lots of weeding and stuff keeping Hubbby away from public and occationly going for a walk when its warm enough .I keep trying to post photo of the garden on here but for some reason it wont download don't know why as its ok on other sites .Stay safe everyone thinking of you all xxx

SewBears profile image
SewBears in reply to fishponds

Hi fishponds,

I had a similar problem posting photos but found that if I copied the original picture that I was able to post the duplicate, not the original. Strange but I was able to get it to work.

fishponds profile image
fishponds in reply to SewBears

Thank you SewBears I will try that x

Kevin_1 profile image
Kevin_1 in reply to fishponds

Photo posting has now been fixed :)

Kevin_1 profile image
Kevin_1 in reply to fishponds

Stay safe and wishing you the sunshine and warmth I'm waiting for with gardening.


fishponds profile image
fishponds in reply to Kevin_1

Thank you Kevin Yes sunshine and warmth just what we need Take care x

Hi Anne

Take care

Yes, brewing tea and carrying on. :)

Morning Kevin, all quiet here. I am enjoying being able to get out for daily walks and hope to continue this after the crisis is over. Can't get to gym so instead our Pilates instructor has started classes online which occupies me for a while. Then I have lots of jigsaws to do.

What's that you are saying, what about housework!! Oh that, well I do a little now and again lol 😂😂

Hope you bring some of your bread to sample at our next meet up. 😋😋

Keep taking care and keep safe.

Love to you and Liz.

Marion (Nanny857xx)

Hi all!

Submerged in full crisis and full confinement.

Every day we take the patient's temperature to detect if COVID19 may be present.

The important thing is that the virus does NOT enter the houses.

Take the precautionary measures very seriously: masks, disinfectants, proximity distance, hand cleaning, disinfecting food supplies, etc.

Our most serious problem is to control, regulate and replace in your case the hired or altruistic personnel who help us with the patient.

For those over 65, medications are brought to us by Social Health. The autonomous government organizes volunteers to assist older people who live alone and have difficulties to fend for themselves.

If you can, you should avoid going to sanitary offices or hospitals if we can fix it at home.

At the moment we control the situation.

Hugs and luck.



I cheat and use a breadmaker I'm afraid. Yesterday though we made wraps, they were very easy 2 cups of flour, cup of water, 1/2 teaspoon of salt, knead to give a reasonable dough, take golf ball size amounts , flatten & cook in hot heavy bottomed pan. The other half was most impressed.

Ended up having to order my seeds on line, all being delivered by mid April except for the french beans which won't be shipped until September, which will be a little late for this year!

Finding Whats App good for keep in in touch with people, especially as you can have several people in the conversation at once and actually using the phone for phone calls to make sure people OK.

My heart goes out to all of you with someone to care for at this time or have someone in nursing home. Sending you all virtual hugs. xxx

Kevin_1 profile image
Kevin_1 in reply to AJK2001


I cheat with a bread machine too some day's. ;) They do a very good job, don't they?

Yes, the seed merchants are pretty overwhelmed at the moment.

Sending you all virtual hugs too.



My heart goes out to all who are alone at this time! I feel so fortunate that here on my 3 acre “compound” I have daughter and son in law and 2 granddaughters to while away the time with. They have all been busy working in the yards and garden,(it is 85 degrees outside) and I am supervising and watching and puttering with my potted plants.

Yes,this will pass and some of us will be all the better for it,but those who lose loved ones during this time will not. I pray for relief and comfort for all who are ill and protection for all who are not.❤️

Kevin_1 profile image
Kevin_1 in reply to JantheNana

You take care

Best to you and yours


Hi Kevin- it’s very hard keeping it together in these hard times especially when dealing with a loved one that has PSP. Praying all the time for everyone. It seems to be scarier every day. Best regards to all. I guess we have to try & somehow keep the faith. Sherilee

Hi Sherilee

My heart goes out to you both.

Being a carer is tough. This makes it so much harder!

Yes, somehow we will keep it together. It's all we can do.

Wishing you both the best.



Hi Kevin,

What an awesome post and such wonderful responses!

There’s a loud BANG from within the house every night around 3AM, the noise brings me from a deep sleep to full blown wide awake mode. I’ve narrowed the noise down to either the ice maker spitting out a new batch, or the furnace belching a heavy sigh. Regardless, my first thought is that hubby has fallen, or he’s sleep walking, or missing the toilet. Of course I check to find him snug in bed.

After I know he’s safe I try to sleep but I toss and turn and then give up. It was great to read about making bread but I think my favorite is you teaching your cat to play cards 🙃 I also got a chuckle out of hiding the booze! I read the posts until my hands started to tingle from holding the phone up while lying down. After reading just this one post and everyone’s response I was finally able to get a little more shuteye.

Other than the occasional dogs barking and both of them begging for biscuits it’s quiet here too. I’ve learned to drown out the noise from the TV but I swear if I hear the theme song from Cheers one more time I might lose it. That’s the show that my hubby is hooked on. At least he’s being entertained and laughing.

I try hard not to shop online. I constantly remind myself that we’re broke. However I also rationalize spending by saying “we only live once!” So yesterday I ordered an elliptical exercise bike, similar to the type he uses at the PT clinic. It’s perfect for him but a lot more than we can really afford. Anyway, I think that our PT days are over, not knowing how long we’ll be on house arrest. With the heat of the summer just around the corner, having a bike indoors will keep us both in better shape. It’ll arrive in about two weeks and it comes only 70% assembled. I hope I’ll be able to figure out the other 30%!

I’m keeping entertained by watching a hummingbird nesting just outside of our dining room window. She was extra busy yesterday so I’m anticipating babies any day now.

Under the circumstances hubby and I are hanging close. Just in the last couple of weeks he’s lost the reasoning of being able to fully dress himself. He seems more confused than ever so my mind is on high alert, constantly. The virus is the last thing on earth that we need right now. Sigh...

I think I’ll check the cupboards and see if I have the makings for a loaf of bread 😋

Keep on keeping on!

❤️ SewBears

Kevin_1 profile image
Kevin_1 in reply to SewBears

Hi Sew Bears

What a lovely post. It brought a smile to me :)

The bang in the night sounds weird.

Great on the elliptical exerciser! You'll figure it out, I'm sure.

Sorry your hubby has had a bit of a down turn.

You sound so calm and ordered in the face of it all. I doff my cap to you!

Hope you found some flour and yeast. :)

I'm waiting for this horrid cold air stream to finish so that I can resume gardening. My seedlings are snug indoors and coming along nicely.

The humming bird is a delight. Do keep the reports coming. :)

Steady as she goes! :)



KEVIN...I look forward to reading your posts so much...My sister is in LTC and I haven't been able to see her now for 3 weeks...It's terrifying to think of her on her own when she can do nothing for herself...I worry she will lose her speech completely during this isolation period..Her hubby can face time with her twice a day when a worker helps to set it up so at least he has some contact...We arranged last week to have some of her friends and our family went to her window and they wheeled her over to see us..we sang 'you are my sunshine' to her ...It broke my heart to see her little smiling face..she has been so brave dealing with CBD for the past 3 + years...I am afraid this isolation time will set her back...I read these posts every day am so envious to hear others say they can work in the garden..here in Ontario although the snow has melted the ground is still frozen...Thank you to everyone who keeps our spirits up and helps up to remain hopeful...Liz

Kevin_1 profile image
Kevin_1 in reply to Skye04

Hi Liz

Such a nice thing to say. Thank you :)

I'm so sorry you are not able to see your Sister right now. As you know I'm in the same position with my Liz. It's pretty miserable isn't it?

It's great you all got to see her through the window. :)

I hope your ground thaws soon enough. Meanwhile you are welcome to virtually visit here and pull weeds, virtually :).

Hopefully this will pass soon and you will be able to resume visits.

Wishing you and yours the very best.



Hi Kevin and all,

I think I'm a little late to this post. Since I'm alone now, I have no schedule, no timetable. I'm in California so we're self isolating. I've filled the last couple of weeks with 3 books, 4 puzzles, trimming my hedges (between rain showers), cooking new dishes I've wanted to try, on-line shopping (can't afford too much of that), keeping up with HealthUnlocked and SmartPatients and the dog and I have walked several miles (it's so weird to see empty parks!). So far, no house cleaning! Never thought I'd miss ordinary things like grocery shopping. My daughter's doing that for me. Kinda nice having a personal shopper! I could learn to like it.

You all take care, we will survive this. . . .


Kevin_1 profile image
Kevin_1 in reply to racinlady

Hi Pat

Yes, it's the same here. Quite surreal.

I'm glad you are finding some things to do.

Yes, we will survive it.

Warmly with a smile.


Getting so frustrated as things are progressing. Tried to go out to get some fresh air,but so windy it nearly blew me over! Hubby had to hold my rollator as I couldn’t control it. Just makes me realise how bad things are getting. Can’t get comfortable in the chair or bed. Too tired to do chair exercises now,very apathetic. Stay safe everyone. Jayne xx

Kevin_1 profile image
Kevin_1 in reply to Aprilfool20

Hi Jayne

That outing sounds dramatic.

So sorry you can't get comfy. Horrid.

Is it the Corona-19 state of affairs making you feel apathetic. It's having that effect on many folk.

I hope you find nice things to do whilst you wait for the weather to improve.



Not the Covid,though it doesn’t help, just knowing things(CBD)getting worse so quickly and can’t get any professional help. My husband is doing what he can ,but it feels a real mountain to climb now I can’t do much. Getting very anxious about falling, I’ve had about a dozen since Xmas , luckily nothing broken as yet. The hospice nurses were keeping an eye on me but of course that’s all gone by the board at the moment. Was going to sort out a wheelchair but can’t go out to get that sortedReally feel for you not being able to see Liz. At least my oh are in it together!

Jayne x

Kevin_1 profile image
Kevin_1 in reply to Aprilfool20

Thanks Jayne

It must be a real downer for you right now.

You sound remarkably together given the pressure you must be under.

For most there is a step down and then a plateau. I do hope that is the case for you.

Can you get a wheelchair online? Or, telephone a supplier discuss it and get them to bring one to you? That way you could see it and choose another if it's no good.

Liz is in good hands. I must be thank full for that.




Don’t really know what I require . I’m a bit old fashioned that I like to speak face to face. Hubby thinks might be good to get motorised. Speedy Jayne!it all seems such a bother.

Motorised is OK until you cannot manage it and then you will need one that can be pushed.

Here are sopme of the things we learned:

Solid tyres are better. They have less drag and can be pushed more easily. The suspension in in the chair padding. So no loss there.

Again, for pushing: A stiff frame is better. Some of the cheap ones are too 'flexible' they are harder to push or move yourself.

A good memory foam seat is essential.

I so much agree with the thing of seeing before you buy.

Good luck


Like others I am coming late into this post. I'm self isolating. My son's are doing my shopping. They have my credit card and PIN number. They have been warned that any excessive money they spend will come out of their inheritance. My daughters in law are sending me casseroles and other dishes. I have received so much that the fridge and freezer are getting rather full. On Wednesday I went out in the street and joined with the neighbours in applauding our NHS. I had booked a holiday to Switzerland in May that had to be cancelled and rescheduled to September. Otherwise life is fine.

I shudder to think how awful it would have been if this had happened this time last year when we had carers and nurses coming into the house day and night. Wishing you all well in these difficult times. Love and prayers. Ken.

racinlady profile image
racinlady in reply to kenh1

Hi Ken,

Sounds like we're in the same boat. I can't help but think about how hard it would have been if this had happened last year or the year before. My heart goes out to all the folks on here who are trying to manage PSP/CBD and Covid19 at the same time.

Hugs to all,


Just received my letter. I am regarded as extremely vulnerable and have been promoted/demoted to the socially shielding group which is to avoid any face to face contact for at least 12 weeks.

Kevin_1 profile image
Kevin_1 in reply to kenh1

Sounds like your well organised Ken.

Stay safe! :)

Best to you



You are a star for getting us all talking. Breadmaking has just got better - delegated to daughters boyfriend and now managed to score some better yeast (harder than Class A drugs) and he has on third attempt produced a very fine loaf. Otherwise a bit bored so finding it impossible not to drink every night (used to manage a couple of days off a week). Ruth says her life has barely changed as CBD had already self-isolated her. But I am so grateful she is at home here with 3 kids and I am trying to do things to give her variety in what is the late autumn of her days.


Hi Richard

Laughing here re. Class A drugs... You are most likely very correct!

Glad it worked. :)

Measuring everything accurately is the key... along with yeast which isn't actually dead! ;)

Yes, I have fallen into the habit of a tipple every night. I forgive myself that, for the now.

Yes, boredom is the thing. That's why I set myself little projects. Such as reading up on the archaeology of bread making and the global migration of wood fired ovens. Then field testing ideas. It gets bonkers - Even pressure cooking a loaf - and it works! That concept was developed by American Urban Tribes who used YouTube magic to communicate a silly idea across vast distances.

But, these things are space fillers. They are not living. Weirdly I can't get any interest at all going for my life long love of Bronze Age to Han Dynasty Chinese thought. It's like a pause button has been applied. I guess I'm waiting for the other shoe to drop.

I'm so glad you have Ruth and the children at home. But, I am sure that is a lot of work too.

Take care and be well.


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