PSP Association
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Just a little sunshine

For those who have recently arrived on this site you may wonder what this bloke is doing writing about things which have nothing to do with PSP but I can assure you that I have travelled the same path as you but sadly it came to an end last year when my wife died . For several years I got a huge amount of support and advice on this site and perhaps I was able to offer some of my experience to others as well . But one of the things I did was to sometimes write posts that were lighthearted or descriptive as I felt even at the darkest moments there could be laughter and there is beauty around us even though we can become toopreoccupied with our situations to notice it .We all need to remember there is life beyond the confines of dealing with PSP - hence my post today .

I woke in the early hours of this morning to hear torrential rain battering the roof of my house and it seemed unceasing and I gloomily thought what the next day would bring me - a day trapped in doors like so many recently . But it was not to be ,as dawn broke the sky miraculously cleared and I was greeted by the palest of pale blue skies . Small clouds scudded in haste overhead as if anxious to be elsewhere , and the rooks which live in the rookery just down the road were being blown around like so many small black sacks caught in the blustery wind . It can't last I thought , so after a hasty breakfast I donned my coat and Peaky Blinders hat (those who watched that blood thirsty series will have a perfect image of my headgear) and I set off for a walk around my Devon Village and lanes . I would say a brisk walk but as some of you will know I recently had a hip replacement so " brisk " is not yet part of my vocabulary relating to walks !Really it is more of a lopsided amble but be that as it may at least it is exercise . Just around the corner is our local parish church , it dates back to Norman times and although I am not a religious man I do like to go and sit in the church sometimes and listen to the silence which I find strangely comforting also that ancient smell which assails the nostrils as you push open the studded oak door . What is that smell ? Old seasoned oak mixed with polish ?- there is just something irresistible about it . Perhaps it is the smell of centuries past , of all those people who have worshipped there, been baptised married and buried - I don't know , but I love it . In the side ailes the windows are clear glass and this morning I could sit in solitude and gaze across to the Devon hills bathed in early morning sunshine looking freshly green and inviting .

On leaving the church I like to wonder round the graveyard full of crooked leaning headstones covered in lichen with engraved but barely legible inscriptions , names which have long gone out of fashion , "Eliza - Zeikiel , Jude " but now amongst those symbols of our mortality come snowdrops and primroses the first signs of the rebirth of our year . I don't know why but primroses always make me smile they are somehow such a cheeky flower bursting out in unexpected places as if to say "look at me I bet you didn't expect to find me out yet " nor did I but there they were in abundance .

And so I left them to bask in the gently warming sunshine and walked back home down rain washed paths and lanes passing the odd villager on the way and exchanging greetings which were all so similar " spring is round the corner don't you think ? " I do so hope so .

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Oh Georgepa, it’s so good to be able to read your beautiful descriptions of your glorious county. Long may they continue. I haven’t seen snowdrops or primroses yet and feel as if I’m in the depths of winter still but that may be because yesterday morning I was in Thailand and 38 degrees after 4 weeks away and today it is 6 degrees. There is life after PSP.

I hope your hip continues to improve and you will soon be back to your brisk walks but getting out and about however slowly is something to be thankful for isn’t it? Lots of love

XxxX

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Look at you Bev - a globe trotting phenomena ;did you bump into my daughter she was in Thailand for 4 weeks right through Christmas ! And I gather you are off to China next - the jungle drums have been spreading the word .

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Oh, Bev! How are your travels going? China next? Wow. I've never been to Thailand, heck, never been beyond Europe, and still have lots of the US to see. I'm planning a trip to Japan for the spring, anyway. Someday I hope to see George's Devon, too. Love, ec/Sarah

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I'm planning a trip to the mailbox soon...which does require the changing of my clothes. Luckily teeth and hair do not have to be brushed though I may just throw caution to the wind today...hahahaha

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Have you got your passport ?

xx

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well no, but I do have an old drivers license and the neighborhood dogs seem to know me...

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Hilarious!!!!

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Hi Sarah, very jet lagged. Feel as if I’ve been partying hard and drunk too much. It’s now 18:19 and feels like midnight. Worth it though. US is a huge place so you have probably travelled quite a distance without leaving the country. Japan sounds exciting. I hope your plans go ahead. Keep us posted. I haven’t booked China yet. Feel too spaced out and don’t want to book the wrong trip. Devon is lovely. We visited several times in the past but not for some time. One day again maybe.

Off to bed now. Tried to stay up but my eyes are closing.

😌 💤💤💤💤💤💤

XxxX

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Thailand, and you are now off to China.....? I cannot keep up with you girl...I can't imagine Thailand being cold, wait is that 38* Celsius? just converted to Fahrenheit, its 100*F! Woah....but is it humid? Well when you get to China hike some of the mountains, Badaling is where the Great wall and the tourists meet...it just outside Bejing certainly a day trip or even just the afternoon....

You know darlin, you need to get all GeorgePa on us and describe what you see!

Isn't earth an amazing place ;)

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Yes it was 38*C. It was 42* on a couple of days in Australia. The first morning I woke up in Thailand I felt quite chilly. The palm tree outside my window was blowing in a strong wind. I opened the door to the balcony and was blasted by what felt like a hot hairdryer and my glasses steamed up. I forgot we had air conditioning in the room. Most of the days were spent in the sea which felt like warm bath water. I used to come out wrinkled like a prune. It was great though as I snorkelled with the fish in crystal clear turquoise water.

We were told to keep the balcony doors locked when we went out or the monkeys could get in and steal from our fridge. One grabbed a sandwich from someone by the swimming pool and another a corn on the cob. My son likened them to the sea gulls where he lives in Brighton. Not so noisy though.

The Earth is definitely an amazing place.

I had a great time but oh how I wished my darling was with me.

Lots of love

XxxX

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Lovely to hear from you Georgepa I have missed your lovely stories. I do hope you are coping X

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Some days yes some days no Doreen but then I’ve been by everyone to expect that .

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The difference a few miles makes. It's horrible here in Bristol! I know a few hours have past, but just had a huge hail storm. Thankfully, just got in from taking the dog out.

Lovely to read your words again George. I hope you realise the pleasure it gives everyone and the hope, that there is a life waiting for us, when we are ready.

Have seen a few snowdrops, in gardens, but the primroses here, have definetly still got their fur coats on!

Lots of love

Anne

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Hi George, I'm glad blue skies appeared and you were able to get out. I enjoyed reading your beautiful story as we woke up to our village covered in snow and it has been snowing on and off all day. So we have been spending the day in front of the log burning fire keeping warm. Time now for a coffee and some Christmas cake.

Hope you make a full recovery soon. Lots of love Nanny857 xx

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Lovely to hear from you, George. Reminded me that spring is round the corner. Waiting to find primroses but snowdrops are my favourite. Glad to hear that you are mobile again.

I remember your description of catching the mouse - still makes me laugh !

love from Jean x

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Can't wait for Spring - the East coast can be brutally cold. Luckily I was in Belgium for the worst, visiting my mum who's coping quite well without my dad, considering. I've had this kind of feedback in other places, it's sad to lose a loved one, but a deep relief not to have to worry every day, about how to cope, what is round the corner...

Lovely to read you again, George. I'm not on here much anymore. It's strange to continue living in a world without my dad.

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Hi Lieve, lovely to know you are still around and popping in now and again.

It's always a strange world, without those that bought you into the world around. My Dad died 15 years ago, Cancer, still miss him. Often think, he would have helped me get through this fog I am in now. Then I remember he would be 87 and could be in his own little world, like my Mum with Alzheimer's . Wouldn't have wanted that.

Sending big hug and much love

Lots of love

Anne

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Much love to you, Anne. Let's enjoy the beautiful world that is still out there xo

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I am not here much either , just pop in occasionally and it’s nice to hear from old friends . I know exactly what you mean as well , I still can,t get into my head that Veronica is no longer here .It just seems impossible. I sometimes wake up in the night because I think she is calling out for me . The world seems to be an emptier place .

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Today, I had the realization that Bruce isn't coming back. It was a strange feeling ...I know that he's not coming back but yet I still felt that realization. so strange.

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Lovely to hear from you again George, Always wise funny and great descriptions. Thank you

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Hello Georgpa

I do love your lovely scribblings. They make my day.

I am so envious of your climate too. I try not to be.

But what you get we get a little later, so I have no complaints.

I hope you are coming through it all, as best as one might.

Do you do special requests? perhaps one for the apple, plum and cherry blossom when it arrives?

Be well - You are a good soul.

Best

Kevin

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Oh George it is so lovely to hear about the lovely country side , miss this so much. Glad to hear you are managing to get out and about, hope you start to feel stronger soon. V is looking down on you. Hope when you start to feel better you can go off and enjoy yourself. Sending you a big hug. Yvonne xxxx

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I love the poetry in your posting. I live in Los Angeles, California, USA. I too lost a loved one to PSP (my 55 year old son, May 4, 2017)).

It's cloudy here today, expecting rain in two days. Hopefully, not as torrential as the past rain storm. I was born and raised in Los Angeles, and mostly I am use to an abundance of sunshine. Right now I am home nursing the flu....I who never get sick.

In 2013, the year before my son's first PSP symptoms (2014), I treated my son and my daughter's family to two weeks in London. It was the first London trip for my son, and the second for my daughter and myself. I am a fan of PBS that often shows BBC series taking place in the country. I wish we had had more time in the UK to visit the country.....except for the usual tourist excursions (Stratford Upon Avon) there was much on our list for London. My son and my dad LOVED Shakespeare. My son bought the entire BBC & Time-Life films of Shakespeare works. My son in the evenings, If he did not have a gig, would trek across the city to spend the evening with his grandpa watching Shakespeare. This was before my son , or the rest of us, knew what laid ahead for my son. They got through all the dramatic works, the comedies, the tragedies. Later, my son would use an expression, "Shakespeare" , for a human incident.

My father, though an Illegal alien/undocumented, was drafted into WW2 and was stationed outside of London. He was in the Army Air Corp, a gunner and aerial photographer. On the tarmac, outside London, it was discovered that my father had no legal documentation, and there he was sworn in as U.S citizen. My son and my dad adored each other. Thank heaven my dad died (92 years old) before my son got sick. In my father's day nobody talked of the border separating Mexico from the United States. After all Mexico and the entire Southwest states were once part of Mexico.

I miss my son tremendously. He was my best friend, but like my handy-man (who is almost a member of my family) says, "Margarita, sigue la vida".....and my healing is bringing me to that realization.

Thank you for your posting..................Margarita from Los Angeles

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Margarita (lovely name by the way) what does “ sigue la vida “ mean ?I also love your tale of your visits to London and the story of your father in WW2

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I was named after my grandmother who died in an auto accident a few weeks before I was born.

"Sigue la vida" ...... LIFE CONTINUES.....although it didn't feel that way on the heels of my son's death.

There is much history that is not written about....................During WW2 if you had a child you should not have been drafted (I was born in 1940), let alone one without citizenship or stretching it...... without papers.

One of the nice things about getting older is that you are an eyewitness to events that have been swept under the rug of "history". My father was always grateful for his service. He did much civic volunteering his entire life. I would have loved to have taken him back to England. The only travel my dad managed outside of the United States was Mexico.

I look forward to your next posting.

Margarita

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Wow what a beautiful story about your dad. You know if Mexico could have their way (as well as the American Indians, Inuits and Hawaiians ) they'd all be within their rights to send us back to our 'homes' across the water....lets start with Trump....Maybe he can go live in Norway as an immigrant....oops sorry no politics.....

Anyway I do hope your home stays reasonably dry.

My husbands last words to one leaving our house was, Do Well soo

Do Well, life continues

AVB

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AVB, I do enjoy hearing from you....I love your humor. Excellent idea for Trump.

BTW, 23andMe, through the Michael J Fox foundation, were giving a free DNA ancestry and genetic analysis of those who had proof from a neurologist as to a PD dX. Jeff qualified (before hearing that he had PSP), and then about a year later because I was his mom they offered me a 50% discount. I did both his and mine, and after he died paid (at discount for my daughter and two grandchildren). My grandchildren have not received their results.

Let me share: Both my son, my daughter, and I have solely Mexican heritage through the mother and the father..no intermixing. My daughter's husband is non Mexican-American.

My son never married nor had children. I AM 25.9% Native American. MY SON is 36.6% Native American. It's so amazing. I find it fascinating, but was disappointed that I have only that percentage.

I figure, optimistic me, soon we will have the DNA to learn how to approach PSP. That is my hope.

Take care, Love, Margarita

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My father is half native and half spanish- I am only 21% Native and my mother is all Irish😆Heinz 57 American - and, yes, hoping for the DNA helping with thes diseases!!!!!!

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Hi, did you get the info thro a DNA company? Which one did you join?

I consider myself Heinz 57 American too. I was born at general hospital here in Los Angeles. My mom was also born in Los Angeles. Not my dad, Juarez, Mexico.

I don't think 23andMe lists Spanish......IBERIA yes.

Blessings, Margarita

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Wow such a wonderful thing to do. to give your DNA as part of a genetic database for nuerodegenerative diseases. B's brain was given for research. None of the evidence was very remarkable. All I remember from the post mortem was that he was confirmed to have had PSP

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Thank you, AVB, for sharing. I do regret.

I am a planner and organizer. It would have been nice to have confirmed that Jeff had PSP, but I do not have doubts. I guess I think that each PSP brain donation brings us closer to a cure.

Tell me again.............where do you live.....city, country??? Was it Canada?

I have the flu. The fever broke last night, but I am feeling exhausted.

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oh i am sorry about your flu, Margarita...(Georgepa was right , beautiful name). I live in Northwest Arkansas, US. I was born in Orange county and lived up in Paradise Ca my early years. I also lived in Nevada and Hawaii as a kid and young adult.

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Thank you, AVB. The last time I got the flu was in 1974....on the heels of separating from my husband. I NEVER get/had a flu shot. I am not use to being sick and I am not a happy camper, but I doubt it will change my mind about flu shots.

I was born in Los Angeles. Moved to New Haven,Conn in 1961. My husband had a John Hay Fellowship to the PhD program at Yale U. During my married years I lived in New Mexico and Boulder, Colorado. My son was born in New Haven.

Blessings, Margarita

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Wow that is quite a history! What did your husband get his doctorate in? Did you have a career aside from chief cook and bottle washer?

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My husband got his PhD from UCLA. We divorced in 1974, and I never remarried......relationships YES, married NO.

I am retired 14 years, after 33 years as a community college counselor. I loved my job/profession, but also happy to be retired

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Primroses? Already?! We are only in the middle of winter and are expecting - happily, for me - another half foot of snow tonight and tomorrow. Still, it's lovely to know the earth holds such a place as your Devon, and your image of the old Norman church and churchyard brought peace to my heart today. Thanks, George.

Peace and love,

Easterncedar/Sarah

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I am still looking for that photo of snow here in Los Angeles. I WILL find it.

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we are in the middle of winter 5 to 10*F...(-12*C) no rain no snow no moisture of any kind except that which is sucked out of our skin into the aridness...I fear a hot dry summer...I want to go to the snow! the Boston mts. border and even ensconce Fayetteville. They are a fortress of weather solitude. they block any western fronts that would allow for snow an often rain to "attack us"....everyone around us got a foot , we just got colder and drier....

skiing in my dreams!

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Uplifting! My hubby & I were in Devon once; we loved it!

Thank you :-)

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Dear Geofgepa,

Thank you so very much for your beautiful post. Love, Mary B.

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Once again lovely images and I can almost smell the aromas.Glad your walking and not driving the scooter.

Thank you George

Dee

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Hello

Lovely to read the writings of your walk.

Your have such a natural gift.

Sending you much love and I hope for is all the light of Spring helps is all to cope a little easier with our current paths we are on.

X

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First visit back since Rog's death at Christmas and what an uplifting post to read! I am also looking gorward to spring. You may remember kindly sending me the wheelchair covers, i have donated them to our local shop mobility scheme.

Keep walking!

Rog's send off on Monday, such a long time to wait,

Xx

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Hi Julieandrog

You keep walking too!... just one step at a time.

I hope Monday goes well.

Its good to see you here.

Warmly

Kevin

xx

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I’ll be thinking of you on Monday Julie .x

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Thank you.

Hugh.

Luis

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How lovely to have another of your wonderful bucolic contributions. They always bring England back so vividly. Thank you!

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George, I love to hear you write....No matter where you are I know where you are as your description awakens my minds eye to the beauty that surrounds you .

Thank you for giving us a bit of respite, Take care of that hip....don't let the snowdrops let you slip!

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Hi George, haven't seen any primroses yet here in sw france but we have daisies everywhere. I often take my little dog who is actually Patch on walkies and just can't get over the flowers that are already out. It's been a bit wet the last few days but warm, our usual march weather I would say.

I hope your hip is healing fast.

Kindest regards

Dawn

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Awesome🌞

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Let's have a book!!!!!!

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Hi Georgepa. Wonderful to hear from you. Hopefully your hip will be up to "brisk" very soon . Love Maddy

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Our first primroses are just beginning to appear, just love them. Bulbs are breaking through and the anticipation of the arrival of spring gives me something to look forward to. I'm glad the old hip is on the mend and as usual enjoy reading your lovely posts George, also pleased you are motivating yourself to get out of the house when the weather is suitable.

Warm wishes

Kate xxx

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