Hey, friends. How are you all doing? Please let me know. I'd love to hear from you.
I am following the news from the UK - scary mutation, Brexit uncertainty and short supplies and all - and really feel for you folks over there. It's not great in most of the US either, of course; even in Maine, which has been relatively well managed this year, things are trending badly. This will be a Christmas we remember all our days, one way or another. I hope we can manage to look back on it with some degree of pride at how we made the best of things. Dealing with PSP can teach the joy of perseverance, of finding small pleasures and little victories, however fleeting. From the isolation of the illness and the caregiving, perhaps we are better equipped for this than others less tested.
Pollyanna me, I know many here are just barely holding on by the fingernails. Forgive me; I understand if you would rather scream and cry than be brave and patient another second.
Please, either way, be as well and safe as can be, everyone. Hold tight to the ones you love, as much as you can.
I'm rooting for you, and lighting candles for us all. At least up here in the north, the days are now getting longer. Love and peace, Ec/Sarah
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Sarah lovely to hear from you, it is very bad over here, but after PSP we can deal with anything. Hope you have a lovely Christmas, look after yourself stay safe. I am going to my daughter for Christmas in a bubble with them, going to stay until the 1 January, Christmas was on with the family then Boris said to days later we were going into tier 4 so Christmas changed for so many people, but obviously we need to stay safe. Big hugs Yvonne xxxxx
Hi Yvonne, hope you have a lovely Christmas with your daughter. I was to spend 3 days with my daughter but ourNI Executive changed the rules and reduced it to 1. 😢 but as you say, it's better to stay safe. Times are not good.
Lovely to hear from you Sarah. 2020 has not been a good year.
Originally we were allowed to spend 5 days with family of 3 households but the virus is on the increase again and it has been reduced to 1 day. Sadly Northern Ireland is going into another lockdown on 27 Dec. for 6 weeks. Thankfully I will get to spend Christmas Day with my daughter.
Yesterday was Winter Solstice so days will start to get longer. 🤗
Happy Christmas to you and yours, Sarah!Five years on down the track, I can scarcely believe how difficult it must have become to deal with this awful disease that already made life a nightmare.
I continue to stay close in case I can help.
I feel so much more than a World away now, with our conditions so near to normal in New Zealand.
I will light my candle in the window and hope it will show a tiny pinprick of light down the long dark tunnel to a better normal.
It is one Christmas in one year, a year that can surely not repeat! Count your blessings and find joy in what you are able, whatever you believe!
I have friends and family still in the UK and USA. My thoughts are with you!
Sarah..Here in Canada things are also in 'lockdown'..thank you for reaching out to us all and lighting candles...Let's hope and pray this new 'mutation' can be controlled...stay strong and safe....
Hi, Skye. I have cousins and friends in the Toronto area, so have been keeping an eye on your lockdown, too. (I am originally from Niagara Falls.) Lots of wonderful memories of the city, and of happy childhood summers at our cottage north of Temagami. I love Canada, and I hope to see it again when the borders reopen. (I had some trouble convincing my sister not to try to get across this past summer.) Peace, S
Lovely to hear from you!glad you’re keeping well.wondered if you wou keep on the site. My diagnosis has changed yet again. They now think it’s MSA,me I’m not sure. All I know is things are getting worse, I have a mobility scooter now ,saves my husband pushing me in the wheelchair. Waiting for the hospital at Addenbrooks to see me.Don’t know when that will be now lockdown is back. Still helping with research where I can. Have a good Xmas x
Good to hear from you, April. Sorry about your troubles. Do you find the scooter easy to steer? My guy couldn’t have managed one. Best wishes for a better new year. Good on you, helping with the research. Someday the cure will be found.
Finding it ok at present but I know it will become more difficult. Better the scooter as I have not much upper body strength for a wheelchair and hubby is not as strong as he used to be.
Thank you for lighting candles Sarah...Illinois is still confused (that's the nicest word l can think of). Many folks had Christmas gatherings as usual but tried to limit the number to 10 or less. We had 3 because many in our circle are staying in... fearful covid19 will be passed around... and no one wants that on their conscious. I do have a secret (never tell me a secret)... my grandson & his wife have announced they are expecting a baby next summer. So l am looking forward to wearing the title of Great-Granni. SendingHugs... Granni B
Congrats, Granni B! My getting promoted to Nana this summer was a warm and sweet surprise, as Henry’s children invited me to be that for their little ones. Skipped the hard part of parenting and leapfrogged into being a grand.
Hi Sarah, thanks for posting and happy holidays ☺️ I can’t believe it’s 2.5 years since my man passed, and I find widowhood still a lonely chilly place. However, - boy! - has this year ever given me something else to think about! BC hasn’t got as bad a lockdown as some parts of Canada, but we can only associate with our “household bubbles” so no family get togethers. Stores are open, but none of the fun and recreation stuff, and with the rains of winter now here there are few outside distance-walks with ftiends. I really miss travel and even just driving down to Bellingham for those must-have things I can’t get in Vancouver! 🙄. Like everyone though, I most miss my family and friends who aren’t in my bubble.
I am doing more volunteering in the community, and am grateful it continues during Covid! It’s more social time than I get the rest of the whole week!
Looking forward to a better 2021 and always, always, always praying for a breakthrough in the research on psp & cbd 🙏❤️❤️❤️⭐️
Hi Etta: sorry, I think I missed your question. I am volunteering at our local food bank, which I am enjoying way more than I even thought I would. I am also toying with the idea of the SPCA, but I’m worried I’ll want to adopt all the dogs I meet there!Anne
Ha on wanting to adopt all the fur critters!! I have one rescue dog, and I have trouble with the Facebook posts that come across my screen looking for help with this or that dog... I want to adopt them all! (But I have a small house, and a small pocket book -- and a small dog (who thinks he's a big doggy!)). We have food donation/food banks. I hadn't considered, but may take a second look. I really can't do anything until mom passes and I settle her estate (It's a complicated estate). (Funny that we are almost at the equinox since you started this thread around the solstice!)
This has been a real challenge. We’ve found keeping dads spirits up harder since family can’t see him and he can’t see them during COVID. He misses family even though he can’t speak and the interactions tire him. Since we’ve tried to put dad first, we only bubbled with someone on his side of the family consequently I’ve missed seeing my parents. Christmas has been lovely, but sad too.
Still, we pray for good health. I can do that from afar if it helps!
Was just marveling that it was now light until 6 pm here! (I find the winter solstice hard, only alleviated by the hustle and bustle of getting ready for the holidays - but here, we had virtually nothing to get ready for - so it was particularly long and dark this year.) I'm in a college town which unfortunately one of the returning students this winter term brought back the variant from a trip to England -- there has been an outbreak in my town of it and since I'm only about a mile from the campus, I've stayed in mostly for January and February - and shopping in neighboring towns only when absolutely needed. The snow has been lovely this year though on the upside - no need really to shovel it all!!
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