I guess most of us are old enough (young enough) to remember when Princess Alex was a great society beauty as well as a bastion of the Royal Family. She is still stunning of course, but now she has PMR to contend with. Today is one of those red letter days when the press sits up and notices PMR and GCA. The Mail on Sunday is running a piece today on HRH's illness:
Princess Alexandra and PMR: I guess most of us are... - PMRGCAuk
Princess Alexandra and PMR
PolywotsitPMRGCAuk team member
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Polywotsit
PMRGCAuk team member
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Princess Alex was always one of my favourite royals, always so elegant. Shame she has this, do hope she gets improvement quickly.
CelticPMRGCAuk volunteer
One of my favourite Royals too. She hasn't been well for some months and PMR was hinted at a couple of months ago so I guess she's been on steroids for a while now - I do hope she's responding well to them.
Kate - perhaps a letter of support from the Charity to her office might be most welcome?
Lovely lady, lets hope her PMR journey is uncomplicated and that she gets the right advice and treatment . I think it's a lovely idea for the Charity to contact her. No matter who you are it us great to know you are not alone.
I remember watching her wedding to Angus Ogilvie on TV. She was the most elegant of royal brides. Yes. Kate, I agree with the idea of sending her a letter of support and friendship. You can sometimes feel that you are alone with this illness until you encounter this forum and realise you aren't.
Hello Kate .Princess Alexandra has alway's been a hard working ,lovely elegant lady and I wish her well. Let's hope the PMR doesn't get too severe. Please send her a letter with all our support. I hope she gets well soon. I agree with what annodomini says that on your bad day's you can feel so alone.I he her treatment goes well. trish29
Hi Kate this is my second attempt as I have a bad Pmr day .as I stated before Princess Alexandra is a lovely lady and doesn't deserve this awful condition. Please send her office a letter wishing her well. I do agree with what annodomini says as you do feel so alone on your bad days . I hope her treatment goes well and the PMR doesn't get too severe trish29
Yes lovely lady and even being a royal with this could be isolating. Please send a letter and perhaps she would like to read the forum and not feel so alone struggling each day.
I was thinking of writing her a letter myself but think it a much better idea for PMRGCAUK to write with all our very good wishes
This might help PMR to get the recognition it deserves. Maybe if Madonna got it too....
Didn't have any effect - this post is six years old. The elderly who hobble around are simply invisible to the rest of society.
in reply to HeronNS
Caught in the past yet again!! I must check the date of post everytime!
HeronNS in reply to
Not at all. I think this is quite a relevant point. I wasn't on here six years ago but I do remember Princess Alexandra being mentioned since I joined and the same or similar comment that she might be high profile enough to raise awareness of PMR among the general public. I think you have to be a really well known celebrity, but more is needed. In Canada we have Michael Fox who set up a foundation and really raised awareness of Parkinson's Disease. I bet people with PMR simply haven't got the fortitude, even if they have the means, to do something similar.
I don't know how many people here in my little state of Oregon I've had to explain to over and over again what pmr/gca is. Please look it up. It's everywhere on the net yet no one knows what it is! I didn't know about it until I got diagnosed!
Since I was diagnosed with pmr/gca, I haven't found any notable people with it mentioned in the US. We need a celebrity also to bring awareness to this disease.
Look, I found someone. Unfortunately she died at 94:
medpagetoday.com/blogs/cele...
in reply to HeronNS
I remember reading this. I knew who she was despite it not being a programme I saw.
I have got to say I am not sure how much a celebrity brings to the table. I have fibromylgia too and even lady gaga couldn't bring research funding when she came out as having it.
HeronNS in reply to
We need a catchy new name. I was thinking about that because the other day I used the term "migraineur" which means a person who suffers from migraine. Now where's the word for someone who suffers from polymyalgia or fibromyalgia or any one of a number of chronic diseases? A sufferer from PMR would sound like some sort of synthetic substance. A polymeur!
in reply to HeronNS
😂😂😂 marketing is vitally important. When I worked I used to be good at coming up with module titles that attracted students. You have to have something striking these days.
Wow! That's incredible! Thank you!
Of course she was the only person who came up in my quick search.
You managed to get further than I did! 🙂👌
Well it's got to be better than pat butcher smoking cannabis as a headliner....hasn't it?😉
whitefishbay in reply to
Of course Princess Alex probably wanted to keep it on the low down. Seriously need some OUTTHERE female to take it on.
HeronNS in reply to
I had to look up Pat Butcher. Fictional character?
in reply to HeronNS
Sorry yes pam st Clement? She was on a programme where celebrities went to the USA. They all had health issues. She had PMR and I think GCA. She tried cannabis in every form and it helped. Think she is just on CBD at home in the UK but who knows.
HeronNS in reply to
metro.co.uk/2017/12/03/pam-...
This emphasizes the benefits of cannabidiol while simultaneously downplaying the seriousness of what it's treating!
in reply to HeronNS
😂😂😂
HeronNS in reply to
Perhaps as the enormous cohort of baby boomers completes its transition into seniorhood there will be a sea change in how the old are regarded, just as we changed the world's perception of youth. One can only hope....
in reply to HeronNS
I suspect not. Many people seem to be really resistant to acknowledging what lays ahead for them as they age. When you are young old age seems far away....then once you realise it does hit you, your chance to work from within the system is gone. The world belongs to not the next generation, but the one after!
HeronNS in reply to
You are probably right, but there is an advantage of numbers. We are already changing the way employers look on the value of older workers because even though our retirements open up spaces for new people to come in there aren't enough of them, so older workers are encouraged to stay on the job for a few more years. Baby Boomers started retiring in numbers about eight years ago, and we aren't all through the gate yet. Things evolve and there are too many of us to be ignored.
On the other hand I really want to see young people successfully run for public office because I think the newest generation to be able to vote "gets" the calamity of climate change and species extinction in a way that most of my peers and even the people in the generation immediately following me doesn't.
in reply to HeronNS
I agree on both points. Yes I big changes across the board have helped ageism start to be addressed. Not implying the next, next generation uncaring. In fact probably care lots if my two closest neices in very early 20s are examples - their friends seem to be compassionate civil minded people too. We need to watch we don't get blocked lol.
HeronNS in reply to
It's certainly true that families don't buy into business, media and political claims that Boomers destroyed the world and are responsible for burdening all future generations with our care as we languish in nursing homes. We aren't faceless statistics, but mothers and fathers who in many cases sacrificed a lot to give their children the best of childhood and good education. It was our generation which became aware of environmental damage and started movements to try and slow the juggernaut humankind launched at the beginning of civilization.
in reply to HeronNS
The world seems very weird for me at the moment. I know this may be seen as an off message couple of posts, but last weekend when my family started discussing world affairs I got quite upset and didn't want to discuss it as I know at 9pm, If I start thinking about such things and how we can shift back towards commonalities rather than differences as a global paradigm of social identity and relationships, I won't sleep.
HeronNS in reply to
My father was always (like me I suppose) a very opinionated person who relished a good political argument. But when he became ill, a terminal illness, he could not do this any more. That part of his personality disappeared. I've seen the same happening to me. Sometimes I even cut my husband off as he starts to sound off about something because I know it will trouble me too much. Maybe, just maybe, this is a gift of our illness. A not so gentle nudge into seeing life more positively. Because we no longer take good health and strength and freedom from pain for granted. I believe I've learned not just patience from PMR (still a bit sketchy, that lesson) but also gratitude.
in reply to HeronNS
Don't worry 3pm is fine for such chats 😂😂😂
HeronNS in reply to
It's only a little after 11 am here. I went away to start laundry and make "elevenses". I can't begin to tell you how often I have since becoming a PMR person avoided certain types of discussions. I even choose my tv more carefully, avoiding shows which have predominantly dark and neutral colours - compare "Death in Paradise" with "Luther" or "Borgen". I've never watched more than a few minutes of the latter two, although I like the first, and I bet it's partly the humour in "Death in Paradise", but also the wonderful sunny colours. I avoid getting involved in civic issues any more (usually to do with destroying heritage or approving stupid damaging new "developments). Figure I did my bit when I could, it won't be my world much longer, time for the next generation to pick up the torch. But I will support those who do and try to live as lightly on the planet as I can. Not easy.
in reply to HeronNS
I am glad it's not just me. I end up watching things that are light, my favourite radio station has no news. I do glance at online news - but end up on YouTube watching dogs do silly things. 🐩😂😂
HeronNS in reply to
I do like history, we get a number of shows, usually years old, from the UK, like "Time Team", or "Coast", and I watch anything to do with Ancient Egypt and confess to a fondness for "Ancient Aliens". I like science and animal shows. I'll happily watch "Where's the Midwife" but "Poldark" leaves me cold, as do others which seem kind of intense. Sounds like I watch a lot of tv. Probably a couple of hours a day. Would probably watch more if we got more of the shows like "Great British Baking Show" or "Portrait Artist of the Year", But not the news. I pick that up from the radio, the short hourly headlines report, from the CBC, and, yes indeed, from Facebook, but check the source.
in reply to HeronNS
I like my TV ...it has got me through many painful days and nights. I love documentaries on anything really. I have netflix and another TV box thing that allow me to pick and choose. I don't mind repeats of the shows I like, that's one good thing about PMR/pred 😂😂😂 I have just started watching a new syfy channel drama series about UFOs. They are using all the cases reported in the usa by the airforce pilots etc. I will get into something new eventually !
HeronNS in reply to
Oh I think I know that show - yes I like those too. And there's NASA's unexplained mysteries, where they nearly always come up with a logical explanation.
in reply to HeronNS
Yes. I always loved NASA stuff. I like the mystery such things. Part of me wants to believe and the rest sneers and want a logical explanation.
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