Quite pretty isn't he? I've been playing when I should be packing, or worse, cleaning! We have friends coming to house sit while we're in Paris this weekend (OMG we're going to Paris!), so they'll probably be less than impressed with the sink full of washing up and possibly won't quite understand that creating pretty papers is much more interesting.
Well you'll be pleased to know that I plan to blog from Paris, giving you the low down on the state of the pavements, the cost of a croissant and chocolat and the real deal on how small the Mona Lisa actually is...
But in the meantime, it's time for a bit of unashamed awareness raising.
The above paper is being dangled teasingly before your eyes, but is not available as a download for free. You see, like many people, we are watching a loved one (Adrian's mum) suffer from a debilitating illness and it's one that's so rare, most medical professionals have never heard of it, let alone the general public. It's called Progressive Supranuclear Palsy - yeah, just trips off the tongue, doesn't it. We call it PSP for short.
Alma was diagnosed over eleven years ago and has already outlived the normal life expectancy of 5-7 years from diagnosis. She's a stubborn little fighter and we love her for it.
Now I'm not asking for sympathy - everyone has their own crosses to bear and how you meet that is what makes you who you are. I'm not asking for money either (though I will point you in the right direction if you feel that way inclined). What I am trying to do is raise awareness for a rare disease because many people are often mis-diagnosed. I just heard of a man today who was being treated as a stroke patient when he is actually displaying classic PSP symptoms.
My objective here is simple. The PSP Association have an annual Awareness week which starts on April 5th. They are encouraging their supporters to have an "Afternoon Tea for PSP" to help raise national awareness and publicise the work of the organisation. We are having our 8th Birthday celebration open days at Graphicus on April 4th and 5th, so we are holding our very own Afternoon Tea Party to help to raise awareness and funds in a fun crafting way. (There'll be cake too!)Between now and April 5th, I want to get as many comments on this blog entry as I can. On April 5th, if I have over 100 people's comments, I will make the above paper a free download for everyone and I will also pick ten names at random to receive the brand new CD that this paper will feature on.
So please leave a comment (have you heard of PSP?). If you are a regular reader and don't normally comment, now is your chance. You can use the little envelope symbol at the bottom of this blog entry to email the link to this page to your friends and encourage them to come and leave a comment too.
We feel very fortunate that Alma's condition was recognised early and though there is no cure, she was given treatment which may be why she is one of the longest surviving PSP patients in the country. If you work in the medical profession, or know someone who does, you could be that person who makes all the difference.
We would love to see you at our open days, but if that's not possible, then I would encourage you to spend some quality time on April 5th sharing a cup of tea with someone you love.
More information is available from www.pspeur.org.
The PSP Association is a Company limited by Guarantee. Registered in England. Registered number: 2920581. Registered Office: United Scientific House, 215 Vauxhall Bridge Road, London SW1V 1EJ.
Registered Charity number:1037087
125 comments:
What a brilliantly novel way to raise awareness for PSP.
Good luck.
Hi Glenda,
I wish you luck in your awareness campaign. It saddens me to think there are so many people who get the wrong diagnosis and there never seems to be enough money or resources to help.
Have a lovely time in Paris I've always wanted to go!
Margaret
Thank for heightening awareness of this disease. I wish you all the best with it.
Ros
Glenda & Adrian,
I know what its like to live with a incurable condition (I have MS) and although I am fine at the moment I know it will become more debilitating as life goes on.
Any awareness that can be raised for any kind of illness is brilliant, but it is even more so when it is such a little known illness. I had never heard of PSP til u mentioned it.
Having a tea party during your open weekend it a fabulous idea. Who can resist cake????
My friend and I are hoping to come to the open weekend and we will eat cake with the best of them! Its not naughty if its for a good cause!!!
Love to you both and your families, but especially to Alma.
Jill
xx
Hi Glenda
I haven't heard of this disease, and I thank you for bringing to everyone's awareness. We are lucky to live in a time where medical science is helping a lot of people survive, when in the past they would have not.
Alma sounds like a strong little fighter, bless her. Thank goodness she has family like you.
Have fun in Paris - there is a sweet little paper/card/stamp shop, right in the centre of Paris, close to The Ritz and the Park Hyatt hotels (both gorgeous to visit). I can't remember the name of it, as the last time I was in Paris (in October) it was being refurbished (how annoying was that!!), but think it is on rue Daunou, between rue Volney and rue de la Paix.
I found a couple of sweet stamps I have never seen before, and some different papers.....but then again you have everything so gorgeous in your store, it might be dull - let me know if you find it, or any other places as I visit Paris often.
Best wishes
Sharon
Hi Glenda
Thank you so much for blogging about PSP. As you say it is a truly dreadful disease which is frequently misdiagnosed causing additional misery for people with the disease.
I hope your other blog readers will be inspired to look at our web site (www.pspeur.org) then to tell family and friends about PSP, for it is by raising awareness that we will help people to receive the correct diagnosis, care and support. Hopefully, also, through fundraising initiatives we will raise the money to pay for more research that will ultimately produce a treatment, for currently there is none - the only cure being tragically - death itself.
Best wishes
Jane
(Jane Hardy, CEO of the PSP Assn)
Hi Glenda,
I have heard of PSP - as a former Orthoptist (now Traditional Sweet Shop owner and avid crafter) I have examined patients with this condition so fully endorse your awareness campaign. I lost my Mother to Alzheimers 12months ago which is another illness that would benefit from more resources to aid research.
Enjoy Paris and good luck!
Rosanna
I'd never heard of PSP before reading your blog, so I'm grateful to you for spreading the word in this way. Hats off to Alma for defying the odds - long may she continue.
Love
Anne
Glenda I am sorry to hear that Alma is suffering from this awful disease which I had never heard of. Neurological and brain diseases are notoriously difficult to diagnose I know as symptoms can be signs of so many different illnesses ad guess PSP is no different. They are all very debilitating and it is awful to see the progression in a loved one as I know from personal experience but I think it's great that you are raising awareness via your blog and the tea party, good luck with that and above all I hope you have a wonderful well deserved break in Paris. the paper is beautiful and at first I thought you were going to say it was available as a download in return for a donation to a PSP fundraising charity (if such a thing exists?) but getting over 100 comments is raising awareness which can only be a good thing, good luck Glenda!
I have to say I have never heard of PSP, so good luck with raising awareness of this disease.
have never heard of psp, but symptoms seem very like those of a friend - stroke was diagnosed, but 6 weeks of tests have come up blank, so will pass on details to her in hope that it may help. Good luck with the open weekend,and to Alma; enjoy Paris
Hi Glenda and Adrian,
I'm so sorry to hear your sad news. I can empathise with you as sadly in february 2003 I lost my darling son aged just 12. We battled though his little life, coping with his severe disabilities and complex medical problems. He came to the point though when he had just had enough and we made the very diffcult decision to let neture take it's course, sadly he left us just 2 weeks later laid in my arms, with a great deal of dignity. Like you I believe that we all have our crosses to bear, hard as they may be sometimes. I also have lost count of the times I have been told that time is a good healer, personally I don't think it is, I don't feel any different than I did on the day he died, I think that the you just have to learn to live life a very different way. The world does keep turning and life has to go on but there are and will be days when you just don't turn with it. My reason for carrying on is my daughter, she too has lost her brother and is such an inspiration to me the way she deals with her loss.
There are so many dreadful conditions and dieases but I think, whatever the cause, it is a time when we can all unite and support one another, in no matter how big or small that form of support may be.
I wish you all the very best in your quest for 100 cmments, I think you'll get them and some!
My thoughts are with you
Hayley
Glenda, so sorry to hear about Adrian's Mum, it's awful when a loved one is ill. Love the paper, my favourite colours. I was wondering only yesterday what you were going to call the new CD. Was trying to think of two word combinations starting with the same letter. Maybe you could run a competition to name a future CD! Have a great trip, regards, Judith Smith.
Hi Glenda
I have never heard of PSP and wish u lots of luck in raising awareness of it. I really wish I could visit u on your open days but sadly I live too far away unless I could work on my husband with promise of cake.
Have a lovely time in Paris but don't tire yourself out before u get there.
Luv u lots Dot
Well done Glenda for helping raise awareness of PSP. There are so many horribly debilitating diseases out there with so many families often caring and carrying the burden alone.
I also have an neurological condition which at the moment is still undiagnosed. It has left me unable to eat (I'm fed through a feeding tube into my stomach) which is pure torture when I'm hungry day in daily. I also have an ileostomy (small bowel removed) and a urostomy (bladder removed). My only sure prognosis is that I will deterioate further.
What keeps me sane? My love of card making and scrapbooking. It brings me such happiness, its therapeutic effect can never be underestimated. Blogs, like yours Glenda are a fantastic treasure trove of info and a lovely community of like-minded friends.
So in closing, I wish you well Alma, you obviously bring much joy to your family.
Sharon x
Hi Glenda & Adrian
Hope you're having a well earned fabulous weekend in Paris.
I can see already that your awareness campaign is proving successful. I myself had heard of PSP because I work in the medical records dept of our local community hospital and by the very nature of my job occasionally have to read bits of notes.
However I do know more now because of your blog as it prompted me to use the link to the website. Once again, I feel very lucky that so far in life I have not had to face this particular type of heartache.
My very best wishes to you and Alma who must be one tenacious lady.
Lesley GG197 XXX
Hi Glenda
What a lovely paper - can't wait to see more! Hope your trip is fantastic and hope you have fun - I will look forward to reading your blog from La Belle France.
I have heard of PSP - I was a medical secretary for quite some years and during that time worked for a Neurologist at Kings College Hospital in London. It is a terrible disease and I really empathise with your mother-in-law. I wish you success with your campaign and hope you manage to achieve your goal.
Looking forward to your blog, hopefully free download (!) and chance of draw for free CD.
Best wishes
Barbara
Hello Glenda,
Sorry I haven't been on for a while but I've been helping a very dear 85 year old lady who single handedly looks after her 87 year old husband who has severe parkinsons, but due to a fall herself she was unable to cope with everything.
I totally empathise with your awareness campain for your loved one - Alma, and yes you are 110% right to bring it to peoples attention through your blog or work. I'm so glad to hear that she is a fighter and she sounds like one of those people that no matter what - she doesn't let it get the better of her and hopefully still has a great outlook on life no matter what fate has dealt her.
After loosing my own Mum the other year after several years of illness and me caring for her, she too was a fighter and I miss her so dearly - she always brought us up to remember there is always more important things in life than having to have a new car or the latest designer sofa.
I give my time and craft goodies freely to a lot of the elderly people around me, more so to Viv , mentioned at the top, who looks after her husband in very difficult circumstances - as for just a few hours a few times every week it allows her to escape her very hard tiresome routine and forget her troubles just by letting her make a few cards or a scrapbook page, just to see her face enlighten is something money could never buy, also the stories she tells me about when she was dating in the war and going out dancing make my eyes and mouth agasp !!! Things such as making French knickers made from the silk from shot down barrage balloons !
Can I just say that Haley's ( HMG101190 ) post is both admirable and endearing and my heart goes out to her and her family.
Why not add 50p or whatever to your CD's with the PSP logo to show that an amount for every CD sold will be donated or via your internet sales as an optional donation to the PSP charity , I would donate.
When I book my holidays there is an optional £2 donation (pre ticked) to the childrens fund and I've never unticked it. Many companies do this now-a-days, you go shopping and see it everywhere, X amount of this item will be donated to the X charity.
OK now I'm babbling on so I'd best sign off .......
Thinking of Alma, Adrian and yourself xxx and hope you two are having a wonderful time in Paris.
P.S. - Wonder what you'll be bringing Basil & Sesame back ?
Deby GG120
This is the first time I have left a comment despite being an avid reader of your blog and an ardent admirer of your style.
I had not heard of PSP previously - so well done for bringing it to the attention of a wider audience. Let's hope that in doing so it will enable faster diagnoses to be made. Alma sounds like an inspiration - I wish her all the best.
Have fun in 'Gay Paris'....I don't suppose they call it that anymore!!
Clare
I can't think of a nicer way to raise awareness than to sip some tea (my fave drink) with someone I love. I will definately try to do something to raise awareness of PSP..
Thanks Glenda
Hello Glenda & Adrian
Hope you are having relaxing time in Paris - you both deserve it.
I agree with all the comments regarding this terrible disease and anything that heightens awareness and brings it to the forefront - can only be good
Caroline (Caro - JS Forum)
You're well on your way towards your 100 comments Glenda. Good luck with your awareness campaign for PSP. A special best wishes to Alma and long may she fight the good fight.
OH come on people there were only 21 comments when I checked them out this time surely we can do better than this. I am sure there are more than 21 people reading Glenda's blog and it doesn't take 2 minutes to leave a couple of lines.
I have a number of complaints myself and though mine have all been diagnosed early and treatments put in place I do still have bad days and just knowing that people are aware of my struggle and care about me hepls a lot. I have great admiration for Alma and her family who obviously do care a great deal. It's hard to watch someone we love struggle and to know there isn't anything we can do but be there.
Illness like this can strike anyone at anytime, who knows who it will be tomorrow so come on lets get that 100 comments for Glenda and her family, she does so much for us, I will be haveing my family and friends over for tea (or in my case iced grapefuit juice) for PSP and I will take a cake to my craft group and see if anyone there has heard of it.
Best ot luck Glenda, Adrian, Alma and family
Luv u lots Dot.
Hi Glenda
I have not heard of PSP and went to the site to learn what it was about. I will also be asking people at work tomorrow if they have heard of it and showing them the site.
Good luck with reaching the 100 posts I am sure your readers won't let you down. As much as I would love to join you on the 4th and 5th you are too far away but maybe one day. I will be spending time with a friend on the 5th so will make sure I mention this to her.
Love to Alma and you both.
Don't work to hard in Paris.
Lorraine
Hi Glenda,
Its good of you to raise awareness for PSP. I have Sarcoidosis which is another illness that no one knows much about, so its good that your doing this.
Hope you had a good time in Paris
Lorraine
Every day extra is a gift to you, Adrian and Alma, it is the chance to make memories that will ease the pain when Alma is gone and bring smiles and joy not sorrow and regret when you remember her.
The paper is beautiful, but then I expect nothing less. Thankyou for sharing the preview and am looking forward to seeing what else is on the next CD.
Regards Jane
Dear Glenda,
Thank you for bringing PSP to my attention, I, like many, had not heard of it before. Every best wish to Alma, and support and empathy to you and Adrian, and your family. I can understand the strain of having a loved one so ill, I have two close relatives suffering from incurable conditions and the stress and emotional rollercoaster take their toll on everyone. It can make such a difference though to know that there is support from the wider community, and I hope that you and Adrian can draw comfort from the good wishes you receive from your fellow crafters.
I know that you have said that you don't like to be known as a 'celebrity', but being well known has made it possible to spread the word of this terrible condition, which can only help to galvanise more support. And in any case, celebrity or not, bottom line is that you come across as a really nice person who enjoys crafting and that is what I think most of us think of when we see you on TV, not that you are a 'celebrity, but more that you are one of the gang :)
All the very best of luck on reaching 100 comments, have a good time in Paris, and I'm looking forward to the next Guild newsletter very much :)
Take care,
Jo GG196
XX
Good luck with your open day, thanks for bringing this to our awareness.
Glenda, Sorry to hear about your mum in law. I'd never heard of PSP either . I wish you all the best collecting your 100 comments.
Regards
Deborah
Good luck with reaching 100 comments and best wishes to you all. Di
Always thinking of you both, and full of admiration for Alma's tenacity.
Could you call your next CD "PSP: Pretty Super Papers"?!
I'm sorry to hear about Alma and I've never heard of PSP 'til today. I shall be joining you for tea and cake on your open days as we've booked a weekend up there.
I think it's a really good idea to add a donation to the price of the new CD and raise money and awareness at the same time.
Enjoy Paris!
Lynn x
I wish you all the best,
a diagnosis is a start. I looked at the website, more awareness raising.
It took us several years to find out what was wrong with my Dad, which did not improve his prospects.
We didn't realise how easy it was to change your GP, and how different a surgery a few hundred yards away could be!
We tended to see what he could do, it was interesting to see others concentrating on the problems.
Funding, help and awareness seem to vary very much between diseases.
GG200
Hi Glenda and Adrian,
Reading the commnts made me feel so sad seeing what some people have to endure - it's so good that crafting obviously helps.
I had never heard of PSP but intend to be with you on your Saturday Open Day (please keep me away from the cake!), and will support you there.
Good luck,
Barbara
hello Glenda,
i have never heard of psp before but waht a lovely way to make people aware of it,
i hope to be able to come to your birthday weekend, everything allowing,
i hope you have lots of fun in Paris, i feel so jealouse!!!
what a great way to raise awareness,
i wish you every success,
best wishes all especially Alma.
I have never heard of PSP before and admire you for raising awareness. Good Luck.
Norma
Best of luck with your awareness campaign, and best wishes to Alma, hope she keeps fighting!
Good luck with the open day
Kind regards
Christine ( France )
Dear Glenda and Adrian
I had never heard of PSP before so thank you for letting us know about it. I wish you success in your afternoon tea party to raise awareness - wish I could be there too but as I can't I'll raise awareness via my friends and family. Best wishes to Alma and and I hope she continues to battle the illness.
Love Jenny x
I'ne not heard of PSP, and from reading some of these comments neither have a lot of people, so anything that raises awareness is an excellent thing.
Mmmmmmmmmm open day with tea and cake. Then I see in Paris there was more tea and cake. Should this blog be renamed Cakeylicious?
All the best for the event
I wish I could come to your tea party, but I live too far away. I shall be raising a cuppa to you and Alma on the day. Thanks for making me aware of PSP, I hadn't heard about the disease till now.
I am a Medical Secretary but hadn't heard of PSP. Thank you for raising awareness for this condition. We all think we have difficult lives to lead but not compared to some. What a wonderful way to raise some funds. Wish I was near you as I would come and visit. Hope it all goes well and you have a wonderful visit to Paris. My husband took me there for my 30th but I would love to go back.
Take care of yourselves and Alma
the friend I passed the psp website details to has just emailed me to say she thinks her neurologist knows about psp from the questions he asked her - she has just heard that he has definitely ruled out a stroke, but the cause of problems isn't known yet - she will mention psp to him anyway at next appointment, and is v grateful for the info.
was surprised there aren't 100 comments yet - will nag all my crafty friends with computers to log on to your blog!
that cake was something else - reckon I definitely put on inches just by looking............
Hiya Glenda,
Your blog was the first that I've heard of PSP. Good luck and all the best!
Kate
I personally had never heard of PSP either. What a brilliant way to raise awareness. I wish you luck with it and hope that you enjoy your break in Paris - what a beautiful city :) My boyfriend proposed to me there on New Year's Eve so it has even dearer memories for me :)
Jenny M [sweetness24jm]
I personally had never heard of PSP either. What a brilliant way to raise awareness. I wish you luck with it and hope that you enjoy your break in Paris - what a beautiful city :) My boyfriend proposed to me there on New Year's Eve so it has even dearer memories for me :)
Jenny M [sweetness24jm]
Like so many other people I had never heard of PSP either. Well done for coming up with this idea to raise awareness, I was motivated to attempt to post a comment again after having problems logging in recently.
First time I heard of PSP. I will try my best to pass the word around. What can be better than having tea with a friend to support the cause.
Thanks making us aware. Best wishes to Adrian's mum. Where there is will there is a way!
So sorry to hear about Alma. My Dad is in a poor state so I know how hard it is to bear for those who love her. I had never heard of PSP so I have now visited their website and informed myself. I hope you get lots of people for tea on the day.
Hi Glenda, happy to help raise awareness of this sad disorder and I hope your MIL is enjoying some quality of life. I've never heard of PSP before - it sounds terrifying. You are right, we do all have our crosses to bear but we don't always do positive stuff like this to help ourselves, and in doing so, help others. I wish you every success with your tea party and I hope you achieve what you set out to achieve - you've already alerted at least 47 of us to this! Good Luck to you all! x
What a worthy cause to highlight on your blog, Glenda. I really hope we can help to make a difference. I'm currently working on arranging to get myself up your way for one of your open days. Tea, cake, crafting and supporting PSP all in one - it should bring out the best in us all!
i too have never heard of PSP well done for making awareness of it wish i could be there on your open day kepp up all your hard work and have a great time in paris
Hello Glenda
An excellent idea for raising awareness. It can be quite frustrating when the mediacl profession seem to miss things, but really it is a testament to how much information is available to everyone now and how quickly we can rereash something that is important to us.
Good Luck with Adrian's Mum.
Have fun in the shop tomorrow. Hope to get there soon.
I have never heard of PSP thank you for bringing it to our attention. Wishing you luck in your campaign.
Jayne
Hi Glenda - Hope this helps towards your hundred - I just love your "stuff" your ideas are inspirational.
Cathy
Never heard of it but know I have so well done Glenda.
Love Cynthia x
I had not heard about PSP, thanks for raising awareness - I will certainly share a cuppa with my loved ones.
What a wonderful way to raise awareness of this disease - well done.
Hi Glenda and 'the Boys'!
Thanks for your info about this condition - I hadn't heard about it before either. I do know how hard it is to have a parent suffer and to see them unwell, thinking of Adrian and Alma. Lost my lovely Mum in 2006 - she'd had Parkinsons for over 15 years - another debilitating disease.
Any publicity these conditions get is very valuable.
Have a great time in Paris.
Regards xxsue
ps Keep Adrian away from the Patisseries!
Hello Glenda,
I wish you all the luck in the world with your campaign. I will toast you with tea on the day.
Susan, 1 dog 6 cats.
Hi Glenda,
So sorry to hear that Adrians Mom has been diagnosed with PSP.I must admit I had never heard of it before today.It's good that You have been able to raise awareness to this terrible illness in this way.I hope now the correct diagnosis has been given, it can be controlled.
Hope you have a wonderful time in Paris.Its my favorite City.
Thanks for "sharing" I hope this helps--knowing something exists is a step towards doing something about it. kathy
Hi Glenda
I too was not aware of PSP. I will check out the website later. Well done you for coming up with a great way to raise awareness and hopefully some funds too. I have just had a "scare" with my lovely Mum but fortunately she's fine now. Mums are very special.
Thinking of you
Chris Kelly
Hi Glenda & Adrian
I too was unaware of PSP. I am going to check out the website later. I am sure you will get 100 comments and well done for coming up with such a good way of raising awareness and hopefully some funds.
Chris Kelly
Good luck with this - it was certainly a disease I had never heard of.
Hi Glenda,
No I hadn't heard of PSP, but my sister had a condition called Mutiple Systems Atrophy which sounds kind of similar. Most people haven't heard of that either, so was astounded when the illness was featured on Holby City recently.
Raising peoples awareness of rare conditions is so important in order to collect money for necessary research.
I thoroughly endorse the idea of adding 50p to the price of your next CD for this purpose.
My very best wishes go to Alma, she must be such a strong spirit to continue to fight this dibilitating illness.
Thank you for bringing PSP to my attention, I, like many, had not heard of it before. Every best wish to Alma,and good luck with campaign
good luck with your campaign for psp never heard of this before and give my kind regards to Alma
Have never heard of this illness before. wishing you lots of luck in raising the awareness. Best wishes to Alma.
Good luck with your awareness campaign, Glenda
Love Denisexx
Hi Glenda
I am not one to postnormally, but thought I would just to say that I think this is a lovely way to raise awareness for PSP and also to send gentle hugs to Alma.
Love and hugs
Kate (kittikat)
Have to say I have never heard of PSP, so good luck with raising awareness of this disease.
Geraldine
Good luck with this Glenda. I run a support group for people with Vasculitis which is another little known disease and also needs awareness which what we fight to do.
Hope all goes well.
Tina
Glenda this is something I have never heard of and wish you luck with your efforts to raise awareness of it. If by your efforts you help just one other person to live a longer and better quality life then it is more than worth it.
I can't make it for your open day but will have a cuppa with someone special and be with you in spirit.
Best wishes to Alma and you all.
Jenny x
Thanks for raising awareness of this awful illness, and sharing Alma's fortitude throughout. Please send my hugs to her and the family, and anyone else who needs one.
Hello,,I,m one person who has never heard of this disease,Good luck with raising more awareness of it,,
Like so many I hadn't heard of this till now.
Good luck and very best wishes for the open day/tea party.
Hugs
San x
Glenda, What a wonderful way to make people more aware of PSP, I myself had not heard of it until I read your page.Please forward my Good Wishes to Alma and I hope yout tea Party is a Huge success. Hope you are enjoying your break in Paris after all your hard work this season. Lots of Hugs Rita xxxxxxxx
Sorry to hear about Alma's PSP she sounds a lovely lady with a lot of determination. Thank you for telling us about it must say I have never heard of it before.
I hope you get lots of comments and the tea party goes well, shame it's too far for me to come.
Eunice
good luck with your weekend,
i hadnt heard of psp but i think that it is often the case that we dont hear of things until it affects us or someone near and dear,
i hope Alma continues to defy medics
Nikki in Hull
Hu Glenda
I've never heard of this.. but anything that raises awarness of the lesser known diseases gets my vote
Hugs
Ida xx
good luck with your campagign glenda, best wishes to your family.
have a great time in paris.
chell
Hi Glenda, what a wonderful way to raise awareness of this distressing condition. If everyone who read your blog were to tell two other people about psp & each of them two more etc. etc. the whole world would know within weeks. Good luck with your campaign.
Enjoy Paris (I did last month!!)
Kate (maccasmum)
Thanks Glenda for bringing this terrible disease to our attention. After reading about it I now think that my Mum may have had it, but was diagnosed with Parkinson's disease, she had all the symptoms. Well done I hope you succeed in getting all the comments you need.
Best wishes'
Hilary
Hi Glenda, what a wonderful way to raise awareness of this terrible condition. If each person who reads your blog tells two more people about psp & they in turn tell two more - well the whole world will be aware of it in a couple of weeks!smum)
Good luck with the campaign & enjoy Paris (I did last month when we went!!)
Kate (macca
I had never heard of this either. What a great way to raise the awareness.
Hope you have a great time in Paris.
Well done Glenda and thanks for bringing this disease to our attention. I now think my mum must have had it, but was diagnosed with Parkinson's disease. Good luck with everything you do.
Best wishes,
Hilary
having never heard of this condition but losing a loved one to stroke (my mother) i know it cannot be an easy for your mil.i hope you have a great open day and raise heaps!! keep up the superb craft work that you do and i wish you and yours well take care - libby
I had not heard of PSP either. Well done with wanting to raise awareness, I know you will succeed. Wonderful for your Mother-in-Law to have your support too.
Wishing you all the best.
Looks a great CD Glenda. Again!
Elaine
Thank you for telling us about PSP Glenda and hope that so many people becoming aware through your blog is of help to those who are suffering.
Jo (Grumpy Old)
Hi, I have never heard of PSP before, i am pleased you are making people aware of this terrible condition, Diane Boam
Hi Glenda,
I had never heard of PSP before, thank you for raising awareness of it. I wish you success with your tea party, sadly I live too far away to come to it.
All the Best to you, Adrian and especially Alma.
Pearl x
Good luck Glenda and Adrian with your awareness campaign and best wishes to Alma
Sue
Hi Glenda,
What a great way to make people aware of this disease. I had never heard of it, as I suppose none of us had. I only wish I could join you, but S Wales is a little too far to make it possible.
Have a great time, I will raise a glass to you all.
Paula x (WelshPaula)
Good luck with raising awareness of this awful disease Glenda. I'm sure you'll reach your target!
Alison
Good luck with the campaign. I hadn't heard of PSP before. I know only too well, from illness in my family, how important it is to promote awareness of and research into this and other such diseases.
Good luck with the fund raiser on the open day.
Have a nice time in Paris Gail :)
Hi Glenda,
I've not heard of PSP either.
I wish you well in your Awareness Campaign, not sure where you ae located but gonna check it out and see if i can get there
Best of Luck
Teejay
Hello Glenda . sorry i have not heard of the illness before reading it here on your blog. Well done for what your doing . Wishing Alma all the very best. I dont drink tea but would love to share a coffee or two with a friend on April the 5th also a day i will be rembering my beloved Grandad who passed away many years ago now .
Our loved ones are very special
so thank you again for giving us a reminder how special . Enjoy Paris . Can not wait to see what the new cd is .
luv Tracy ( aka craftymum
J.S. FORUM ) xx
Hi Glenda, thank you for raising my awareness of this terrible illness.
I wish you fun and success at your Afternoon Tea Party next month.
Hugs,
Ang x
Hi Glenda, I have heard of PSP,my Daughters partners Mother has been diagnosed with it last year.
At first it was thought to be Parkinsons disease, but after numerous tests PSP was given as the diagnonsis. She is on drugs at the moment and seems to be coping ok for now.
It is so good that you are making others aware of this dreadful disease.
Eli xx
Hi Glenda, I have not heard of PSP but this is a wonderful way of raising awareness.
There are so many diseases and syndromes around that are largley unheard of and therefore get little money for research. My husband and 2 of my children have Marfan's Syndrome, which is another incurable illness that is not very well known and although my hubby was diagnosed with it in 1977 he wasn't told until his brother was also diagnosed in 1989. The reason? 'Because there was nothing they could do about it'. Fortunately, now it is becoming more well known and some research has been done they monitor the condition and can use intervention tactics to help extend the life expectancy of a sufferer.
I wish you all the best with your campaign.
Stephanie
Hi Glenda
I have never heard of PSP but think this is a very good way to raise awareness. I wish you lots of success with it.
Also sending some good vibes for Alma. I've always loved that name. My grandmother was Ettie Alma.
Bon Voyage for your trip to Paris!
Hi Glenda.
Never heard of PSP. Good luck with your 100. Happy Birthday celebrations and enjoy Paris.
Isla
Thank you Glenda for bringing to our notice about PSP. I have never heard of this condition before. Good wishes to you & Adrian,
& Alma. Take care all of you
I have to say I had never heard of this before but totally agree that these types of illnesses should be brought to people's notice.
I wish you all the luck in the world with your endeavours and plase send my best wishes to Alma.
CarolPG
Hi Glenda
I am so sorry to hear about Alma. I have not heard of PSP so thank you for the information. I wish you every success in your awareness campaign and good luck for your tea and cake day. Sadly I will not be able to come but I am sure someone will be able to have a piece of cake for me! Good luck.
Enjoy Paris and have a lovely time. (Did you manage to get the washing up done before you left???)
Lyn
never heard of PSP before and good for raising awareness. Good Luck.
Debbie
Hi Glenda
I think you are doing a wonderful thing trying to raise awareness of PSP. I know my brother went through a lot of different diagnosis before they found out what he really had (not PSP but Charcot Marie Tooth syndrome) and with greater awareness there can be more chance of finding ways to help sufferers. Good luck
Cat
Hi Glenda
What a great idea to tell people about this rare disease musr admit I have never heard of it either.
Mind you I had never heard off LAFORA BODY DISEASE which my son in law was diognosed with about 8 years ago, he was 35 at the time and my daughter was told its usually teenagers who get and they have died my thier 20's so at the time he was one of a very few to get the disease at that age so they had no idea what the out come would be .
I wish you luck with your Afternoon tea for PSP and hope every one enjoys them selves in the process.
Thinking of you.
Ann
Hi Glenda Fabulous idea to combine crafting with raising awarness.
You can reach so many more people.
I,m a nurse so will now look up some info on this awful disease which I had never heard of(well I will after a sleep as I've just finished a night shift).
Good luck with the afternoon tea sadly it is when we are on holiday,
but I hope you have a great time.
Carole Shehata
Hi Glenda,saw the link to this on Joanna Sheen's forum,like a few others have said a lovely way to highlight awareness of this disease.
I know from personal experience how important a quick and correct diagnosis can be (i must add not of this disease),
Well done Glenda,and best wishes for Alma and your father-in-law,
Sandra
Well done in bringing this to the attention of people. Good wishes to you and your family.
Christina H
I was not previously aware of PSP, but wish you luck with getting knowledge to a lot more people, especially for those who need correct diagnosis.
Enjoy Paris - I'm off there in May too. Popular place!
Joyce
Good Morning, I am happy to support your cause. We have charity fund raising days at work and it is always good to offer a perhaps not so well known suport group. I will take this one forward and who knows we could all be eating cake or doing something silly in the near future for PSP.
Best wishes Jackie, Warwick
I'd never heard of PSP so I've certainly learnt something through your article. Hope you manage to raise loads of money & good luck to Alma
I have to say I have never heard of PSP. I am an avid reader of Glendas blog so am very keen to support your awareness campaign. I dont very often post although I have written up several comments, but give up when I can't sem to sort out the technical bits!. However this has spurred me on to persevere!! Good luck with the campaign.
Jill GG108
Hi Glenda
Thank you for bringing this illness to our attention, I wish your MIL the very best for the future.
Have a lovely time in Paris, easy on the croissants!
Nina
I have NOT heard about this disease. What a great way to make people aware of this disease.
Would love to have a cup of tea with you but I live in California!!
My daughter has always wanted to go to Paris...do have a successful trip.
Georgia
Thanks for making me aware of this awful disease. I wish you luck in your campaign.
Thank you for letting me know about the condition PSP. I have never heard of this condition before. I wish you and Adrian all the best with your awareness raising campaign, and also best wishes to Alma who seem to be a brave and wonderful woman. I hope that more research can be done into this condition and also that more training can be given to doctors and health professionals to help them diagnose this condition in the early stages. Good luck and good wishes to you all.
My Mum had PSP and died in 2004. Initially, she was diagnosed with Parkinsons but I could see it was something worse and actually diagnosed her myself (I was a fan of Dudley Moore and saw the similarities)
As you say, the majority of people haven't even heard of this, including most of the medical profession, and it was an uphill struggle all the way.
Anything that raises the awareness of PSP is good as it seems that more and more people are being diagnosed with it but lots more are told they have other things which is not good. JANET
Janet, I'm so sorry to hear your Mum died from PSP. It is a cruel illness and it's more painful for my husband to watch his mother go through it. Best wishes, Glenda
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