This community has seen so many sad changes lately. We have lost many long-time friends, which has made me aware of how little I know of them outside their lives as psp patients and carers. We all are caught up in that struggle, and it can consume us, but I'd like to be mindful of who we are outside of psp.
So, to whoever might care to share, please tell us something of who you are. Where are you from? Carer or patient, what was your life before psp? Sweethearts, how did you meet? Children, what were your parents like? Have you traveled? What do you like to do? Anything. Everything.
To start, I will say that my dear man and I met late, both divorced, he with grown children, good people. He had an amazing career as a wildlife biologist, studying native wildlife here in New England and then working with endangered species in the Middle East and Asia. He helped to restore the locally extinct oryx in Jordan and worked with a program protecting snow leopards in Pakistan. A very cool guy!
He retired to the house and land where he was a boy, in the beautiful western mountains of Maine. A park's cross country ski trail skirts his land, and I had often admired his view as I skied by in the winter. Then I went skiing with a mutual friend, and she had us stop at his place to visit him. A very lucky day for me. He is such a good man, a great father, hard working all his life, ethical and thoughtful. sweet but dry sense of humor, an affectionate and caring partner
That's us! Now, how about you? Please write. Let's get to know each other. Tell me a story! Love, ec
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easterncedar
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Yes, sure it had its tough times too, but truly inspiring.
We will write of us here too, but it will have to be on the weekend its like Picadilly Circus here this week.
(Overwhelmed with three care visits a day, three respite breaks a week for me, a physiotherapy assessment, home massage session for Liz and yes, yet another continuing care assessment!)
Thanks, Kevin! I look forward to hearing from you when you get that very rare thing, a free moment. Meanwhile, have a good week. Good luck with the assessment. Love, ec
However the little minxes are putting back through assessment to see if we still qualify...
Were both with you two (following you posts) and I have lit a few candles for you both - to sit in the window and burn through he nigh as is the ancient tradition.
WHAT A WONDERFUL IDEA AND WHAT A WONDERFUL STORY TO KICK THINGS OFF....I NEEDS GO NOW;...gonna take me awhile to think of one as lovely as yours.....not sure I can! We all have our lovely stories.....lets do this!
As you know I'm Amanda and I'm 48 and I help care for my darling Dad that has Psp with my mum
My mum and dad have been married for 50 years this year and are as much in love today (if not more so now) than there was many moons ago!
My Dad was an accountant and worked very very hard to provide for his family, never one to complain and simply wanted to be a good husband and father and friend!
My mum did lots of different jobs, like myself! Office work, cleaning, bar work etc! She is a diamond too and has equally always worked hard to keep the family safe!
Their life before Psp was a VERY happy one and a good life where they enjoyed long daily walks, weekly trips to London, and a love of afternoon tea including the Ritz, and 4 to 5 holidays a year! My Dad has always loved sightseeing (something that used to bore me ridged as a child lol)!
My Mum and Dad have a very happy marriage, one that I and many others admire! I feel blessed to have two beautiful parents that have brought me up so well!
I gave up my full time job nearly 2 years ago to help with Dads care and now do cleaning and bar work and love not doing the 9 to 5 nonsense now!
So that's a bit about us, I could go on but I mustn't bore you 😁
That's a great reply! Just what I was hoping for. Thanks, Amanda! How's your job going these days?
And please do go on, whenever you like. I would like this to be a great big ongoing conversation. After all, this IS a wonderful community. Love to you and everyone, ec
Me Mum and Dad were just saying this was a brilliant idea of yours!! Thank you!!
My jobs are going well thank you, although I will be doing a trial this Saturday evening at another social club behind the bar as I'm a bit fed up of where I currently am and it'd be more money! Always a bonus!
Ok, so my Dad is from Pakistan and came to England at the age of 13 with a suitcase and £10.00 and unable to speak English! He has actually done amazing when I look back and consider this! It's not something I could have done!!
So as well as providing for us he always sent money back to his relatives in Pakistan to ensure they were looked after! What a man!!!!!
My parents met in a nightclub back in the 60's!
My Mum enjoys keeping a tidy house, occasionally paints masterpieces lol, (that's what we call them for a laugh) and she makes a mean cauliflower cheese (which I hate)
I like your idea and your story, very eloquently put. Are you a writer by any chance?
Mum might not like this, sorry mum (brenda of brenive) but I would like to introduce you all to my amazing parents.
My wonderful dad has psp and my beautiful mum is now his full time carer. They have been together for over 60 years and have been through a lot, starting out with nothing dad entered the army to try and make a better life for him, mum and my 2 sisters. They travelled the world with the army and they enjoy telling anyone about their travels and adventures, I wish I had a pound for every story that I've heard over the years cos I'd be rich! I came along over 14 years after my sisters keeping everyone on their toes.
I have wonderful childhood memories of our life together,Dad was always ready for fun and games, he taught me to ride a bike, play cards, endless visits to the swing park, I also learnt the key swear words to use to make sure that the wall paper goes up straight!
Mum, she taught us to knit, sew, love and the important life skill of how to wrap dad around our little finger! Thanks for that mum.
Most people think they have great parents but I definitely have the best, I don't think that I could have chosen better parents if I had tried.
Mum and dad have supported me through my life, though its ups and downs. They have been a great shoulder to cry on and have given me some great advice over the years. Now its my turn to support them. Not just me but my 2 sisters, our husbands, 4 grandchildren, 5 great grandchildren plus 2 step granddaughters & 3 step grandchildren are there for them too.
Wow! That is beautiful and fun, too! Your parents are clearly wonderful people, and I'd love to hear more of their adventures, traveling about with the youngsters in tow. So do all the sisters and their families live nearby, or are you scattered? My sisters and brother and I are all over the eastern US, north to south, and my guy's three children are neatly spaced out from east coast to west coast with one in between. It would be nice to be closer, but if I call for help, I do get it!
I think your writing is brilliant. Lots of color and detail in such a concise message! I'd love to know more. Thank you so much for sharing. This makes me very happy!
My Dad loved to play cards and taught us all to play. We had grand times in the summer, especially, trying to get the better of him at " hausenfeffer", which we called " hoz" or "hozzie", a three-handed euchre. He was always too good. The only ones who could beat him were my youngest sister and my mother!
I've never heard of hozzie it's definitely a new one for me.
We used to play rummy or gin but I used to love black jack and we would either play for match sticks or pennies, I can't remember if I ever got the better of dad though. I do remeber playing by candle light when we had power cuts and it felt like we were in our own little world.
My eldest sister is only a few miles away from my mum and dad, I'm about 20 miles away ( hi Mum!) and my other sister is about 180 miles away. We are a bit scattered in UK terms but nothing like your family going from coast to coast! There is nothing like a crisis to bring everyone together it's just a shame that it can't be happy occasions instead!
That's so like us! We played cards a lot when we were at our summer cabin, which had no electricity so we played by the light of kerosene lamps. Yes, just like our own little world. Perfect circle.
My family are native to Eastern Long Island NY. It's not the city! Grew up on a century old estate overlooking the Long Island Sound. The estate is more like a family farm, we raised animals including cows. Mom's favorite was her horses.
My father was an extradinary man. He taught high school math for 32 years, ran a successful plumbing business (mom ran the office, he stepped in and took care of the problems), foundered a very successful land ownership corporation, and the list goes on.
My parents seldom took vacations, work never ended, but life at our home, horses, fishing, and hunting, it all seemed like a vacation after work. We never ate dinner before 9pm. We closed restraunts when we would go out. If there was light we worked, lol.
13 years ago my father died in a tragic accident on our farm, the tractor's front axle broke causing it to flip over on him. A year to the day he died, my mom was served with the worst frivolous lawsuit you could ever imagine. Share holders in one of the corporations my father started got together and tried to steel my father's estate from my mom. After 3.5 years of litigation 14 days before trial the judge throws the case out claiming the plaintiffs didn't have a case!!!!!!!
I believe the stress is what brought PSP into my moms life. Mom never had time to greave.
Mom and dad a few years before his death did manage to start enjoying life. They did vacation in Bar Harbor Maine, and took a vacation to a little island in the Bahamas to visit a friend. They came back from the vacation, had us all over for dinner and told us they bought a little pink house while on vacation. All I could do is laugh. They managed to escape for a month a year for a couple years before my father past. While they were away the workload doubled, lol.
My wife is an angel, my family has not been easy to deal with. I work full time for a water utility. Until a few years ago I worked nights, allowed me to build houses during the day, and help mom.
Hi, Rob. Nice to meet you! Your childhood sounds idyllic, and your parents like an amazing couple. How awful that it had to end as it did. The accident must have been more traumatic than I can imagine. There is a proven link between depression and Alzheimer's. It doesn't seem far-fetched to me that your mother's psp could have been caused as you say.
Working nights and house building during the day? I guess hard work runs in your family. i have only been to LI once, and saw only a small bit. It's bigger than I thought, and like no other place I've ever seen. Are you still there?
We live in as all spa town called Droitwich, one of the original settlers to America EdwardWinslow came from here. Lovey little place, heart of Worcestershire, yep as in the sauce.
Rog and I met in a night club on October 4th 1973, he told me he was 19 , he lied he was 25! He thought I would'nt go out with him as he was five years older. It was love at first sight. We married in 1975 poor as church mice! No living together in those days.
Rog was a very respected electrical engineer who worked all over Europe, engineering took a dive here in the nineties and he had seven jobs in two years, to show the calibre of the man he never had to look for work , as soon as a company went down the pan the phone would ring and he was offered work. Eventually he suffered a complete mental and physical collapse, I feel strongly that prolonged stress is the cause of many of these neurological diseases.
I was a midwife and RN for over 40 years I only gave up a couple of years ago to take over the caring role, not always caring I might add! I met many inspirational families and colleagues , i also met some strange ones! I miss my babies but as I worked locally I always have someone saying hello do you remember me , he or she is 25 now! I have many many stories, both sad and funny.
We have one lovely daughter , she is married to a lovely man who is the son we never had. They have a thirteen month old boy thug called Harry! He really is the light in our day, they live about eight miles away so close enough to visit easily. Both teachers so really lucky to have those holidays together.
We have had the most amazing life, worked hard but played hard, neither of us ever had a holiday as kids so we have travelled a lot once we hit fifty choosing to spend our money that way, hence no new furniture in our house! Thank god we did, memories are priceless.
So that's us, you all have a great day, I do like it when peeps post pics!
A wonderful life, Julie. Midwifery must be so challenging and rewarding, every day different. I'd love to hear more about that.
Awful that the economic downturn took such a toll on your husband. It's a terrible waste when a person can't use his talents because of forces beyond his control. I agree about the stress being a likely factor with psp. My guy had a bad patch, too.
But you played hard and traveled. I'd love to hear about that, too. I always loved traveling, and if I can't get out much now, I can enjoy hearing about other folks' adventures. What was one of your favorite trips?
India!!!! When we got of the plane in England his words were ' never ask me to go back there again' ! He found the poverty difficult , his favourite place even now he will say, Maldives!
My, you Have been around! I've always been afraid of the crowds in India, but wanted to travel there. There's so much to see! What did you like most? How long were you there?
I know nothing at all about the Maldives, and would be glad to know what your Roger enjoyed about being there.
Margaret was a midwife, QARNNS (Queen Alexandra Royal Naval Nursing Service) sister, full time mum, school secretary and Court Usher for Senior Judge. Adventurous (example at 24 by herself went to Australian outback to work in bush hospital in West NSW), professional (one of first to train and use ultra sound in maternity in RN in Gibraltar), pioneer (one of first to remain in RN on marriage and on pregnancy though not after 6months gestation), brave (facing down a large drunk man who tried to attack judge and barristers all of whom were bigger than her). Oh so many stories.
We met a week after she joined the QARNNS in 1977 rapid romance 3 weeks. I went to sea for 10 months and we married a month after my return in Aug 1978 she and her mum arranged everything including the honeymoon. That was a feature of our marriage we agreed on most things and did things together even when I was at sea for long periods. Her mantra of "homework, coursework revision before TV" got our sons through to Uni and their results and good jobs were her proudest achievement. In our 50's we started traveling to exotic locations as funds allowed saving Europe for our 70's (if only we had known the curse of PSP).
PSP took away her independence but not her mental resilience or fighting spirit. I miss her but she is still part of me.
What a wonderful life story. I'm really glad to hear it. Your Margaret was clearly a unique and adventurous and capable person. I'm sorry I never got to meet her, but am so very happy to know something of her story. No wonder you love her so, Tim.
That sounds fascinating, although I don't know a thing about it. I imagine you have some wonderful stories of your career! I'd love to hear more if you have time.
It's like the old song "I went to see the world and what did I see I saw the sea". A hydrographic surveyor surveys the seabed and coastline to make charts so we work at sea not going exotic places like the grey warships. I was at an interesting time moving from sextant to GPS for positioning via all sorts of weird electronic distance kit and from analogue to digital data collection when I started everything was by hand by time I left early PC's were taking some of the art out of the science.
I enjoyed my time but i it was hard on Margaret bringing up both lads almost as a single mum.
Fun bit of serendipity. My team and I were working through a bit of proposed legislation this week, which is what I do for a living, and "hydrographic" appeared, to the mystification of everyone but know-it-all me. Hah! Thanks, Tim. I did give you credit. Peace, ec
Hi EC what a fantastic idea. Iv'e not been on the site much lately as things are a bit rubbish at mo but your post has made me smile remembering all the happy times. I think my story may be a little boring compared to the rest but here goes. We lost mum very suddenly in Feb last year to lung cancer, I had been staying with mum and dad when she was taken poorly to look after mum. A week later dad decided to try and be with mum but thankfully survived. Dad had been having falls for some time but the drs couldn't pin point what was causing them. I then stayed to care for dad as we were scared to leave him on his own. I was there four days carers for three and it was working. We then noticed dads voice was going so took him to the Drs, after a lot of tests dad was diagnosed with terminal throat cancer in July last year. Dad was in and out of hospital and it was during one of his visits he was diagnosed with PSP. Dad is now in a nursing home only ten minutes from me which is great as we no longer have a 45 minute journey to see him each day. Mum and dad met at a dance hall up town and that was it, Love blossomed and they've never been apart since.They would have been married for 58 years this year. Mum and dad lived with my dads parents until they managed to afford a caravan (yes a caravan). My brother came along first then me three years later all in a caravan. I can't remember it much as we moved into a house not long after i was born. My dad is a carpenter and french polisher and has made most of our furniture. He loves wood and can tell you anything you need to know about treating wood, he's just so clever. My dad also learnt how to spray paint and transformed my first car, a mustard coloured old mini into a bright red speed machine ha ha. My mum had a little dinner lady job which she loved as she's just brilliant with children. We had holidays to Devon sitting on the beach with ice creams. My mum and dad spent so much time with us and I remember so many things. I would help dad with the vegetable patch and we would spend hours digging up potatoes and planting. My dad taught me how to play cards and always played jokes on us. Mum taught me how to knit and sew and how to make pickled onions, jars of them, we would sit and peel onions and be crying and laughing at the same time. My mum made the best pastry and not only taught me but my children too. My dad taught my children the word Sh** which they kept repeating for days and yes they did say it in school!!! Christmases were the best, playing games and eating all mums home cooked goodies. There was not one day that my mum and dad didn't tell us they loved us and that they were proud of us. My brother is a plumber and I run a small business with my husband. We have always been a very close family and if we didn't see each other that day we would call each other always ending the call with love you lotses. I have simply had the best childhood ever and my children the best grandparents ever. My husband and I have brought our children up just the way I was brought up with the help of mum and dad and holidays in Devon. When we both left home mum and dad had their holidays, about two to three a year and spent some much hard earned money which was brilliant. I miss the smell of my mum's perfume and her cuddles so very much. Mum's cuddles are the best.When I was little i always held my dads hand everywhere we went and its still the same now. He has the warmest hands i have ever held and gives the best bear hug ever. I just feel like so many of you that I am the luckiest person alive to have such wonderful caring loving parents. I could go on forever and have already written an essay so time to get myself moving and do some work. Thank you EC for making me smile you're a star xx
Dear Millie, I enjoyed your message so much, so full of love and fond memories, truly heart-warming. I totally envy you in your speedy red car! Your message also made me think of my own dear Dad, whose hands were also always comfortingly warm. Your father is a very accomplished man! I love good wood work and admire anyone who has the patience and skill to bring out the beauty of a nice grain. And isn't digging potatoes fun? It's like a treasure hunt; I'm never sure what I will find. My mother taught me to can, and she and I still put up peaches each year, although she just turned 90. I never did pickled onions, although I love to eat them!
Thank you thank you for sharing those beautiful memories. You have made me smile, and, I must admit, tear up a little, too. I am so glad to meet you.
Hi all George and myself met at a wedding, whirlwind romance, we married when I was just 18 and he was 21. He came over from Cyprus when he was just 18, worked as a wine waiter. After we got married, he had 2 jobs, then he went to college and became a building surveyor, I had three children, each with 7 years difference.
We had our up and downs, but have had a good marriage, wonderful holidays together, three beautiful children and 4 amazing grandchildren.
We have been married 49 years this year, I was thinking to do something special for us all the enjoy 😊 because not sure what next year will bring.
We have done loads of building projects together, I feel really privileged to be able to do with my amazing husband, the one project that he wanted to do, building a house in Cyprus in the mountains was not achieved because he was unwell.
Yvonne xxxxx
Amanda you dad must be an amazing person, reminds me of George xxxx
George must have been very charismatic, to sweep you off your feet like that! It's very satisfying to do building, isn't it? My family did some for ourselves (the biggest was replacing the family summer camp after it was struck by lightning and destroyed), so I was able to help my sweetheart a bit when he built his new place across from the old farm house. That's pretty much how we bonded...while putting up the cedar shingling. The place is lovely, but still unfinished, really. I can't seem to organize myself to do much without his direction. It will be for his children to take on someday, I suppose.
I imagine Cyprus is gorgeous. Did you have much adjustment to make with the culture? I only have some long ago experience touring Greece to base my question on, but it was beyond my simple expectations at the time. And you were so young!
Our last project was building a house, with help of course, it was very rewarding when it was finished, took a long time.
My dad was from Cyprus and my mum from Brighton in Sussex, near the sea, so it was ok, it was at a Greek wedding we met, yes Cyprus is a lovely place, wished we could off been going together.
George is unwell with a urine infection so feel bad about going away and leaving him.
Ahh..so if there was a culture shock it was between your mum and dad? I'm a bit too interested in food, if you know what I mean, but I'd love to hear about your family's favorites.
My children love Greek food, there favourite it meat balls, stuffed vine leaves, macaroni with mince topped with a cheese sauce, they love a coconut cake with a syrup over the top, and of course a barbecue. Could go on and on, even if I do say it I am a good cook. Wish I could invite you all to dinner, my mum was a brilliant cook, she use to cook Greek food very well xxx.
I met my husband 27 years ago, we knew from the moment we met that we would spend the rest of our lives together. Meeting the parents in Italian families is a big deal. He met mine after a week and I met his right after that. I met his mom first, she is short (typical Southern Italian woman) but I knew she was the one I had to win over. I amnot one to beat around the bush, nor do I kiss up to people, I am a 'take it like I am" kinda person. I guess she liked that because after 27 years she calls me for everything.
She worked with her husband at the family butcher shop, my husband worked there as well.
My in-laws love story was special and I tell it to many people. In the 50's my father in law came to Canada from Italy looking for a better life. He was promised to my mother in law but not engaged.
Well after a year or so, he was working full time here ans he received a letter from my mother in law, she was back home in their small town in southern Italy. She told him that there were men in the town that were interested in her, if he did not come back and propose she would consider the other siutors. WELL, he flew back within a week with a ring and proposed. She was a fiesty one!!
They married in Italy an went on a fabulous honeymoon, then departed for their new lives in Canada.
My mother in law was a seamstress and worked with some talented designers in Yorkville (the fashion mecca of Toronto). After a few years my father in law decided to open his own shop and she left her career and joined him. She worked hard, and they never had a vacation together because one of them had to stay behind to mind the shop.
17 years ago, my husbaND and I opened our own meat production plant and they were finally able to enjoy life a little, they travelled a bit but shortly after my father in law was diagnosed with pulmibnary fibrosis and had to walk with oxygen tanks in order to breath. He sadly died 8 years ago. My mother in law was very strong after his death, she wanted to live alone, and she did until CBD started taking little bits of her life from her.
Today she is a shell of what she used to be, but when I tell this story to her she smiles and it makes her happy.
When I look at my life, it is a mirror image of hers, I had a successful career in banking and left to help my husband persue his dream of opening a meat plant. We supply some of Toronto's best restaurants with local and import cheeses and salumi. We work, eat, play and sleep together and I would not have it any other way. People ask me all the time how we do it, I can not imagine life any other way...
There is our story in a nutshell, short and sweet..now off I go. We are hosting a sausage brunch at the home my mother in law is in.
Great stories, Paola. It does take courage to do what your in laws did, come across the ocean and work unrelentingly to make a success of it, and courage for you and your husband to build your own business. I'm so impressed!
I was diagnosed with PSP over 3 years ago at the age of 57. Originally I was diagnosed with early onset dementia (FTD) by a geriatric specialist. Upon viewing my MRI results (trying to rule out tumors etc.) this doctor saw abnormalities that he could not speak to on by MRI and then referred me to a neurologist. During my first visit with the neurologist he saw some things over and above the dementia that concerned him and referred to another specialist (actually 2). The visit to neuro-ophthalmologist concluded with a diagnosis of PSP-P (variant) and confirmed the suspicions of original neurologist. I'm an accomplished martial artist and have always been physically fit. I've always had a sense of humour and wit... if you've read my blog, you'll see that. Regular and rigorous exercise and made all the difference in my mobility. I am married to my earth angel for close to 23 years now. Between us (from previous marriages), we have 6 grown children and seven grandchildren a very interesting and challenging family dynamic... our youngest son who will be 23 this year is autistic. I'm from Toronto, On Canada originally, but now call the small town Of Ayr, On home. The first half of my career was spent in hospitality, managing restaurants and later on owning my own. The latter half was spent in automotive manufacturing from production to research and development. I no longer work... haven't 3 years now. My wife is an educational assistant with the local Catholic School board and is the glue the fabric of my family together. There, that's the expedited version.
Ayr is beautiful and so is Toronto. What restaurants did you work at while in TO???? We are int he restaurant supply business and we may have crossed paths?
I worked for a couple of the chains early on... Ponderosa Steak House, Burger King and a small quick service restaurant in the Eaton Centre called Friendly's, which I later owned. Also did some consulting for small start-ups... Lakeview Fruteria, Green Leaves, Lovin' Spoonful and YogN'Berries.
At Queen's Key on the lakefront. The original owner was a wonderful South Korean fellow named Dong Chow Lim. I believe he sold that business to concentrate on operation of his called Green Leaves in the CIBC building in downtown Toronto.
sounds like you got around....I love the food industry in Toronto with so many talented chefs. We are very lucky to be working with them. So much has changed.
Our eyes met across a crowded room - or at least mine did Veronica was not altogether aware of my presence . I was 16 and she was nearly seventeen ( always preferred older women ) .It was at a meeting of the Junior Chipstead Players dramatic society and Veronica was showing her designs for the sets for the next production . I had never seen such an exotic creature and was totally smitten . She was an art student and I was still at school . It took me nearly seven years to "capture " her . I had to eliminate a series of boyfriends , one in particular before we finally got together .I admit I had to practice my courting skills en rout on several other young ladies and I hoped green eyed jealousy would help my cause - it didn't . Becoming best friends with her brother and flattering her mother were much more successful . We got engaged just before I went to college to train as a teacher and got married as soon as I finished my three year course by which time Veronica had been working as a designer for an international publisher. We moved to Islington in North London before it became trendy - I taught in South East London and Veronica set up her own design company . In the early years I used to give my wages as a teacher to her assistant as she was very busy and her earning capacity was greater . Our daughter Kate was born in 1968 and we moved South of the river to Blackheath ,I returned to University to get a degree in Sociology and ended up teaching North of the river in .West Ham .Our son Joel was born at this time .
A few years later we abandoned London and moved to Devon for me to take up a post in a college of Further Education . Veronica found it difficult to make the move as design was not something that was foremost in the Devonian way of life . She did some freelance work and made a wonderful home for our children in our Georgian house aptly named Paradise House where we lived for the next twenty odd years . During that time I gave up teaching so that Veronica and I could work together and get a better balance of life and work . We pursued what had been a hobby and ran an antique shop . We had a lucky break and designed the interiors and provided the furniture and fittings for pubs . We did them all over the country from Devon to Essex finally Veronica was asked to design one for a multi multi millionaire in Istanbul , but that is a story in itself . Veronica also ran courses at our home which had featured on a TV program and in Country Living Magazine . She ran courses in rag rug making , papier mache , and she also had a very successful business in hand made cards . She was an extraordinarily creative woman and it has broken my heart to see how she has lost all that .
When our children left home we downsized with huge regret and moved to Silverton a small Devon village where we live now and have done happily for the past twenty years .
I can still see Veronica as plain as day on the first time I saw her . She was beautiful , exciting .unpredictable ,unobtainable and she still is , despite this illness and I wouldn't have missed one step of our journey through life together .
That's a sweet love story, George. Persistence wins! And you made a beautiful, successful, artistic life of it. I'm impressed. The changes you both made in turn to make a go of it together are remarkable. You have been a great team, it seems.
Did you have an area of specialization in Sociology? Your writing is so distinctive, but more poetic than academic, I wonder what interest took you into sociology?
And then you went into entirely different directions! Many lives in one. I came to Maine with my young love, got married, found a job I liked, lost the man, and just stayed at the job - 29 years now. It's a good job, interesting enough and I love the folks I work with, but it doesn't do much to make the world better.
Thanks for sharing, George. It's been great for me to get such lovely responses to my request. I'm always glad to see a post from you come up, and I often read yours to my sweetheart. The mouse story still makes me smile to recall.
I was a young teacher in Dartford, Kent. I moved down from Yorkshire for adventure and was thinking of going to teach abroad. It was a Young Teachers dance and a tall, handsome stranger entered, alone, looked round the room and crossed the floor to ask me to dance. [ my grand children's eyes sparkle at this bit !! ]
We talked and danced all evening. He had just started his own " copying " business and had no money and neither had I. We used to go for long walks to talk and cuddle. Two years later we married.
He had more printing businesses, art shop and lots of good ideas. We have had so much fun following up these ideas without ever making money. He had great friends and made good relationships but, perhaps because of that, never made a fortune. However he did well enough. I stopped work to have my children as was normal in 1964. We had three children and Chris was a brilliant, energetic , perhaps a bit embarrassing , dad. He did all the sporty bits and I did the creative bits.
As the children grew older I did a Open University degree in psychology, then trained with Relate and became a relationship counsellor. As Chris had a building we adapted some rooms and had a small counselling centre.
When the children were around we camped in Europe but when they left we spread our wings. We always preferred spending on travel rather than things. We saw lots of the World before PSP struck.
We retired in our early seventies and Chris was diagnosed a month before his 80th birthday. We had just come home from Sicily and had a holiday booked in Costa Rica and a big party planned.
So we went ahead anyway and it was wonderful. Of course he had had problems for a couple of years previously but I feel I began losing him from then.
I find the holiday videos I made remind me of how he was. So I laugh and cry watching them.
We now have eight grand children and two step-grand children. My family up in Yorkshire are still close - two sisters and their off spring - thirteen grand children and we have a holiday home there, in Bridlington.
We have had many blessings. Lucky in many ways but Chris is a lovely man and doesn't deserve this PSP.
I wish this post could be pinned so we can find it back easily - I am going to try to post my dad's story - so much to do, so little time, don't we all know how that goes - so by posting here I hope I can find it back again easily. What a lovely idea!
Oh, and as long as there is some activity, it will come up on the newsfeed link under your name on the top bar. I actually love the way this site is organized. I'm not very savvy, so I really appreciate how someone has designed this site for direct connections. Dear administrator, I hope you saw that! Thanks, ec
I love this idea...so positive and supportive of this community. I have been a "lurker", mostly reading everyone else's experiences, which have benefited me greatly. Thank you all who have so openly shared your stories. My father-in-law died 2 weeks ago. I shared a bit about him at his funeral, and since you asked....he was a great guy who great up in Northern MN (USA). The "ice box" of the US! He loved sports (especially hockey), became a pharmacist, opened a business in a suburban small town and grew a life and a family with his wife. He loved and supported his community, and he loved to ski and sail. He sailed the Caribbean Ocean, Lake Superior, and the lake in his small town. He loved hiking, camping, boating, canoeing, wine....he loved life. He had an incredible work ethic, and built his business (pharmacy) literally from the ground up. He and his wife of 49 years did everything together...and she cared for him until the end. So much to say about someone who lived to the fullest.
A life well lived, indeed. How lovely that you have such fondness for and good things to say about your father-in-law. One of my sweetheart's daughters is in St. Paul. She loves Minnesota. As far as it being the ice box of America... discounting Alaska, of course, right now I think we might have a shot at the title. Some of the snow drifts around the house here are six feet high! It's been a fun winter so far!
Thanks for writing. It means a lot to me to have such sweet and interesting responses to my request. Warms my heart. Love and peace, ec
I just love your post and reading about you and your sweetheart ! What a cool man indeed ... so so interesting ! Made me smile to read how you both met!... so lovely 😊
Well as you know I'm Jude and 49. My wonderful mum is 75 and has PSP . Mum was born in Liverpool and still lives there.
Our family love music , especially mum who spent her youth going to listen to The Beatles every lunch hour in the Cavern . She knew them all having been to school with Lennon . My brothers have a music shop in Liverpool city centre still.
My mum has been on her own for 30 years now and been the most independent woman having travelled to places far and wide . Being interested in the Teracotta soldiers she went to China to see them and walk the Great Wall .... and lots more .
I have lived in Warwickshire the past 28 years but always been very close to mum. She has been the best mum and nanna to my two children!
The way it works at the moment is mum comes to stay with me for 8 /10 days then she goes back to Liverpool were she has my brothers and carers calling for two weeks and then comes back to me.
That's really fascinating, and rather thrilling, too, your mother knowing the Beatles and all. How wonderful that she has been such a traveler. Those terra cotta soldiers must be something to see in person. Sounds like a great arrangement your family has come up with. I wish you many many happy memories. I'm glad you wrote, thanks. Peace, ec
Kim and I actually met in Sunday School at a little Baptist church in Louisville, KY (USA). Some mutual friends invited her to attend and "check me out". My first thoughts were that she is just too beautiful for a nerd like me. But she loved my dark curly hair and somewhat big lips. We had one double-date with our mutual friends and then it was just us for the next 37 years. After about 3 months of dating, I proposed and then about a year later we were married. Our daughter came about 9 months after the honeymoon (we tried practicing rhythm but since we're not Catholic, we thought it just meant doing it to music). We had our son about 2 years later and then she had me castrated (well, sorta via a vasectomy).
I've worked in Information Technology all of my career, initially for a bank, and now for a large insurance company, called Humana. Kim was a stay-at-home mom until the kids got into high school, which in when she started attending cosmetology school. For about 10 years, Kim was a hair stylist and absolutely loved cutting hair, especially everyone in the family. PSP came to visit her about 2 years after she retired. She probably had PSP around 8-10 years. We made the best of it. We still travelled a lot. Anytime I had a business trip, I usually tried to bring her along. During our time together, we went on 18 cruises, mostly to the Caribbean. We celebrated our 35th anniversary a month before her passing. She died 55 days short of her 55th birthday. It's already been 7 months, but still feels like yesterday when I was tending to her every need: dressing her, bathing her, catheterizing her, feeding her, suctioning her, monitoring her symptoms, and most of all, loving her.
When we became Christians he was living and going to school in mid America. I was in Hawaii.....we really couldn't be any farther away until our beliefs brought us to the same Christian college in Arkansas.....I was a "hostess" at the school's cafeteria and he was a "three time a dayer"{breakefast Lunch dinner} I don't know when I finally saw him but I finally saw him.
He was sitting at a two seat table by himself. As I cleared tables and made sure everyone was happy, I kept looking up to see if he was still there and admiring his loveliness. My heart was dashed when the next time I looked up a girl was sitting with him! How dare she! Who does she think she is doesn't she know that I'm the girl who belongs with him??!!.....my crush meant I had to work harder to meet this young man....and I did...I noticed she did not talk much and well I loved to chat with the patrons of Patti Cobb .....and he loved to listen....so we became friends , started going to morning chapel with each other and amen! love was in the air.
A year or so later (lot's of stuff happened for the "Or so") Our friends were having a June wedding....I never gave 'wedding' much of a thought....One day we just kind of asked each other if should we get married....yah maybe we should.....went down to the jewelers; got ourselves a couple of used wedding rings (We hoped they didn't end up there again); ran straight over to the court house ...into the Jp's office as if nothing else in their life mattered and were promptly told ....."you must wait 4 days for the forms to be filed" (I can't remember why but it sure weren't Nevada where you could get married and divorced on the same day!). Our brakes screeched hard... But that's what we did. No lookin back, even when we had a chance!
Strangely enough, those 4 days ended on his parents 30 th anniversary, June 6... (also known as D-Day for some)....So on June 6th 1985, we meekly went back to the JP who, this time was very happy to see us, and performed the little "ceremony" in a dank little office amid speeding tickets and old coffee in Searcy, Arkansas ! Our life has been about that adventurous since.....but it's been good ....
Beautifully written, Mrs. B. Thanks! One thing, though. I have been to Arkansas just once, and was surprised at how interesting and beautiful what little I saw of it is, I must admit, and I have never been to Hawaii....but really...you left Hawaii for Arkansas?!?
I love this idea! I love it when people will ask what my sister did before her condition. They start seeing her in a different way when they learn about her life before PSP/CBD.
My sister lives with me now in Michigan, but we are from Oklahoma. For those of you who don't know, Beauty Pageants is a way of life for young girls in the south... the competition is stiff - there are so many beautiful and talented girls in the south. My sister was a contestant in the Miss Oklahoma Pageant - she did not win the crown, but she came back to our small town and ran the Miss Del City Pageant for 30 years. She was a bank executive, sat on the board of the chamber of commerce, and was on the school board for Del City Schools. EVERYONE knew my sister. She has two beautiful daughters (also beauty queens) and now accomplished young women - just like their mother was. She has been divorced for 15 years, so she had a very independent life for 10 years before she was diagnosed with CBD/PSP.
While Melissa is not as she was, we are lucky that we have a little of how she was still with her. She loves to laugh, and enjoys a good story. She can still move on her own, and enjoys having me dress her up for the day, complete with lip-gloss and perfume. I do not take for granted what she IS able to do... and thank God every day that she is not yet at the end stage of this condition.
Maine sounds idyllic ......... I must go on Youtube and check it out.
I have a younger sister who lives in North Carolina and I try and visit once a year usually at Christmas time. She worked most days but he husband and I used to do a weeks road trip usually down south, sadly a year ago he lost his life in a motorcycle accident.
My sister who is soon to retire wants to take me to visit places whilst I am still able........
I still owed you my story so here goes... My dad (85 this year if he gets to September) was diagnosed 4-5 years ago. He was a teacher (as was my mum), feared and loved by his pupils, who got more interested in nature over the years, became a nature guide and a mushroom specialist (up to two years ago he was on the national emergency hotline for mushroom poisoning - then it became harder for him to speak and much to his sadness he stopped with it), walking everywhere and determining rare species (also ferns and mosses) for the national Botanical Society in Belgium. Through circumstances, I was able to go back to Belgium (I had lived abroad, in the UK and the US since 1990) and spend over two years with my parents (August 2014-2016). I witnessed daily the slow relentless progress PSP makes, the frustration, the sadness it causes. I had never seen my dad cry before. It's not something I will ever forget. "I am not happy'' and I'm sure he felt much more but he was never someone to burden someone else with his problems. He was a private, confident, capable but oh so modest man, and to have doctors, nurses, PTs, speech therapists come in and take over your life... even the most private moments. And despite all that, he would make an effort to do things with me. We still went for walks, the first months with his walker - then slowly that became too hard. Then we went with the wheelchair, to the magic Bluebell forest near Brussels (I had a picture but can't post it here, I'll make it my profile picture), the botanical garden in our hometown Leuven (home of Stella Artois) and during my last visit in October, a nearby forest to find nearly 25 different species of mushrooms. He has a steady flow of loyal friends, from his nature & mushrooms days, they sometimes bring samples for him to determine, they talk about walks they're doing, keeping it alive for him. While I was there, I had breast cancer, so inconvenient - no time for that with everything else going on, I felt bad burdening my parents with that. I got great treatment and a year later, I am confident my check up (this June) will be good. I returned to the US to be closer to my two teenage kids, I felt if I was away any longer, it would create a distance I could not bridge anymore. My parents understood and helped me to build up my life over here again. Now my mum is taking care of him, not always easy, but she has a great team of professionals and friends around her, a great doctor who does home visits. Even our wonderful cleaning lady sometimes emails me when she's worried. My brother had taken a step back when I was there, but is now very much involved, we get along great, so that is a relief. I'm worried, I wish I was there for them, I miss my dad every day, but I can't be in two places like this. Well, there it is in a large nutshell - much more to it, but this will do. I treasure all the precious moments I was able to live with my dad (and also my mum, but I feel so much closer to him) those two years. It really was a gift.
I live in Bristol, UK. I was brought up in the home that my dad, who has PSP, still lives. A happy childhood, living mum and dad. My dad a salesman most of his working life. I left home at 20 to go to Florida as a Nanny to two children. Stayed 2yrs then returned to UK and found a nannying position in London. Stayed there in various different positions until I met my partner and we eventually moved back to Bristol. My parents were very happy to have me on home soil! I carried on Nannying, then had my own baby girl. (She is now 10&1/2.) By now my mum was poorly and frail, my dad cared for her for 12 yrs and she passed away nearly 6 years ago. She was able to enjoy 2 grandsons (my sister's boys) and her grandaughter so I have to be grateful for that.
Nearly 2yrs ago I became my dad's carer. He was lonely but also getting g frail and prone to falls. He could no longer drive due to sight problems and eventually it deemed unsafe for him to go out alone. 4 mths ago he was diagnosed with PSP. It all makes sense now looking back on the past year or more. I have had a difficult time with him, but now I can see why his behaviour was as it was. It's good to know what's what but very sad. I'm often run ragged and am constantly knackered, I would love the freedom I used to have and get my energy back but that will only come when my dad has gone so I can't wish too much.
Thank you for that. I sympathize entirely with the tiredness (although I don't have a child in addition as you do) and with the not being able to wish too much. It's hard. REally wishing you all the best that can be.
We are celebrating 50 years of marriage this year!!! We've been together since before senior year of high school. Rival schools - we met when Jack got a job where I worked so he could meet me. He told his friend he was going to marry me before we met. I was a car hop at A&W. We married a year after high school. Jack went into plumbing as generations of his family had before him- even in Scotland. I worked in retail and aspired to become an intimate apparel buyer. Then the four kids happened😆😆😆50 years of wonderful crazy and not so wonderful crazy has happened. Seven grandkids (8yrs to 18 yrs.) later we are now home ~~~ in the Detroit area, Michigan, US with 😕PSP. Jack is barely walking at this time. He manages to get around when first up. Lately he has not been getting his own breakfast. He has started taking naps. We've never been very good at that. We are not sad and have been doing well in my opinion. Jack has Prostate cancer, as well. I think that has had a bigger impact than having PSP. Jack enjoyed his friends and his beer and going up north. I enjoyed him going up north, too😆😆😆. I am a hobby artist(talented some say)... I'm too flighty to spend time making decisions so my painting sits abandoned much of the time. I like making stuff. Hate hate hate making food and the kitchen. I'd rather clean the garage!!!!! 😄 Our kids are close by and we are connected. Jack and I are each the eldest of 7 - I still have parents that live alone close by.
I borrowed your story idea for my high school facebook page I manage.. I sometimes pose a thought to the group and every 10 days I post our birthdays. I really jumped in last night and suggested sharing a story - they are being shy so far😃"Liking" but no stories~ We'll see how it goes~
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Every exhale is a moan.
The story behind my daughters Marathon for PSP.
IN DENIEL
