I have just seen a trailer on TV for a BBC drama that will be shown on Sunday January 25th starring Julie Walters. I couldn’t believe my ears when I heard her character saying that she had Progressive Supranuclear Palsy. For those who are relatively new to my blog, this is a very rare neurological condition that my mother-in-law Alma suffers from.
The film is based on the true story of Dr Anne Turner who was diagnosed with PSP and in 2006 travelled with her children to Switzerland to end her own life. You can read more about the story on the BBC website and read what Julie Walters had to say about the role here. Just reading the story brought tears to my eyes, it’s going to be a tough one for us to watch I think.
PSP is so rare that many people are often mis-diagnosed. The PSP Association estimate that the true number of cases of PSP in Britain is much higher than is recorded and many people may not be getting treatment that they need. The symptoms vary between people and I am pleased to say that Alma is not in constant pain like some people are.
I am grateful to the Turner family who have worked with the BBC to make this film and hope that their courage helps to spread awareness of this rare and debilitating illness.
I try not to use my blog as a soapbox, but this has such a personal meaning to Adrian and me that I couldn’t miss the opportunity to help raise awareness.
(You can find out more about PSP by visiting www.pspeur.org.)
Thatis absolutely amazing. I remember seeing the story of Dr Turner going to Switzerland on the news. She was an extremely brave lady who decided to let the world share the final moments of her life.
I will definitely be watching. Thank you for bringing it to my attention. It’ll be hard ofr me to watch too. You know my circumstances and my decision has already been made.
Love
Jill
x
Thanks for bringing this to my attention as a nurse I will be watching this as it is a way of seeing things from the patients perspective. I remember seeing the story in the news too
I saw that preview too Glenda and I am right behind you, about bringing lesser known and very rare medical conditions to the public eye. My OH suffers from a lesser known condition {I had never heard of it until I met him just over 6 years ago} but the more that people know the more they are willing to help towards research into that particular condition. Sadly, the lesser known conditions rarely get grant funding either, so it’s all down to good will of the fundraisers.
Opps, I didn’t mean to ramble
I hope that Alma is as well and happy as possible!
Jx
I too remember seeing this in the news. Thanks very much for letting us know about it. I tend to let DH totally control the TV in the evenings so I usually miss what I consider to be important TV viewing but I shall certainly set the Sky box to record this one, difficult viewing though it may be.
thank you Glenda
Lynne x
You are not using your blog as a soapbox, mearly a springboard. And why not if you want to? It is YOUR bog after all.
Shirley
Maybe nobody will notice this today (Sunday 18th) The Sunday Express has an article on this today
Hi Glenda
Thank you for helping to raise awareness of PSP on your blog, my mother had it as well. I havent yet seen the trailer on TV but am so pleased that they mention PSP by name and hope and pray that this programme will do great things for PSP awareness. Here is some food for thought: PSP is generally thought to be as common as Motor Neurone Disease, but not as well known. However, there are at least 10,000 people with PSP in the UK but ONLY 4,000 are correctly diagnosed at one time, making it far more prevalent than MND.
I pray for your mother in law and please do keep up the good work spreading the word!
Much love xx
PS there is a PSP awareness group on facebook you might like to join.. http://www.facebook.com/home.php#/group.php?gid=23850850062
Hi
My Dad has PSP and I set up a support group on Facebook this time last year. There are over 130 members on there all dealing with PSP in some form or another. Its amazing that so many people from all over the world have come together to support each other and to raise money and awareness for this horrible disease.
Dad id in the final stages of PSP, and is now losing the ability to swallow. Its going to be really hard to watch but I will be there with a box of tissues and a large glass of wine. If anyone affected by PSP would like to join the facebook group for information or just a rant please feel free, I am always on the end of an email!.
Thoughts go out to everyone affected by PSP.
Amy Clifton xx
Thanks for making people are aware of PSP. I’d never heard of it before my sister, Diane, was diagnosed with PSP and she is also insulin dependent diabetic. It’s been awfully hard over the last few years to see her disappear with the disease. We try to keep a cheerful face for her sake , but it is very hard when we know that there is nothing we can do to help her. My brother-in law is her full time carer and does everything for her he is absolutly wonderful. He needs a gold star. We nearly lost her last year when she was unable to eat or drink and was very poorly till they put her peg in for her. this has made life a little easier for both her and my brother-in- law .
When I saw Julie Walters in tv , I was totally gobsmacked with her as she portrayed the disease so well.
We want to watch and don’t want to if you know what I mean as It is a thing we don’t feel we can cope with. But we have to be strong for our loved ones.
I’d like to hear what others think after we see the programm
be strong
Hello,
I hope you don’t mind me asking, but my girlfriend worked on this BBC production and I would be facinated to know if the end programme deals with the subject in an intelligent and caring way.
I do know that it was quite a difficult shoot emotionally for the cast and crew (as silly and trite as it sounds) and my GF was keen that the programme would be as sensitive and realistic as possible. (although she had no control over this)
I myself been involved with other “projects” which have taken mental illness and used them as plot devices, but have completely got it wrong or sensationalised it which angered me greatly.
I just stumbled accross this site and the feedback I read prompted me to write this.
I really hope Im not out of order in asking for your opinion, as I know this is real life for you and your families, not just a programme on telly.
if I am being presumtious just ignore me.
Just to clarify, I have nothing to do with the programme or the media, in fact Im an unemployed Door Supervisor (Doorman). And this is purley for my info as my gf wouldn’t be allowed to discuss the programme.
Indeed, I wont be able to tell her about this.
I just want to know if she was involved in a worthwhile production that served the public rather than the ratings.
And if so, its nice to know that someone you love has contributed in some way, no matter how small.
Thanks
LoK
Hi Glenda, when I saw the trailer I thought of you all straight away. I hope the program helps to bring awareness of PSP to lots of people who have never heard of it.
I hope Alma is as well as she can be, and also to anyone else suffering with it or has relatives with it, the same applies to you all.
Sue
Dear Glenda and Adrian, I’ve just watched the programme with a few tissues and blurry vision through the tears. Until now I had no clue what PSP is and my heart goes out to anyone with it, along with their families. The love, compassion and understanding shown to Dr Turner was vital and gave her the dignity she sought. Know my thoughts are with you all and Alma in dealing with this incredibly debilitating condition.
Love and hugs to you all, Susan
We have taped the show to watch when we get home from our trip. I know it will be uncomfortable, but I have heard from the PSP association that Julie Walters plays the part with great dignity. Thank you all for your kind comments and well wishes for Alma. We think she is the longest surviving PSP patient in Britain now as she seems to have a very slowly progressing version of the illness, having had it for probably 12-13 years.
Glenda
Wow I watched it and I could not stop crying. At the end I was just pouring my eys out and shouting “No don’t do it” at the TV.
She looked like she really suffered at the end…I am still crying talking about it.
I don’t think anyone should watch it, apart from the marriage t the very end it’s completely depressing and there are NO positive parts at all…very emotional. Probably wouldn’t have been as sad if Julie Walters hadn’t of played the character because it felt a little bit to me like she was dying.
What a horrible illnes, my heart goes out to ALL that suffer from it.