Steve,s death was recorded as PSP. My daughter was very surprised as it normally, some silly secondary cause, not to rock the boat.
This did mean, when the registrar entered it, the computer said NO! had to ring half the country, before he could get it entered as the cause of death. It is very important, the government, look at these certificates and causes of death, the more PSP, is entered, the sooner someone starts to take us seriously.
So please try to make sure, all of your support team know this, so can be ready to prime the doctor, if possible. Every bit of awareness, helps the next person.
Lots,of love
Heady
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Heady
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Interesting, B's doctor and all that I have read said that most likely death will be aspiration pneumonia (AP). Thus, AP should be the 2dary cause! If he did not have PSP , he would not get this form of pneumonia!
If and when he dies of PSP, I am going to make sure the certificate shows PSP as the cause.....
I understand your point totally, Heady ! My man's cause of death was put as Parkinson's and pneumonia, as that was all he was treated for. CBD was only mentioned as reasonable cause for his fast-track demise but diagnosis is only generally at post-mortem. This didn't happen, so Parkinson's remains main cause.
Bears out the reason for calling where a doctor works a 'practice'! It's all educated guesswork until they get results! And I am in awe of the tremendous work done by specialists who do most of the guessing, often outside the square, and give us the answers that we want to see, being faced with the symptoms and effects daily!!!
Maybe this site should be compulsory reading for all GPs, neurologists and Resthome carers!!!
Love you all! My heart goes out to all of you still fighting, but particularly to those of you who have lost your loved ones so recently!
And I have great respect for those of you at the sharp end, who deal personally with PSP or CBD openly. It helps us the carers to understand what it is really like for our loved ones who have lost ability to communicate their feelings.
Hugs to my mate Peter Jones, Australia, and Jill, and new sufferers who have joined recently.
For those who have lost their loved one, it does get better, but it takes time!!
I hope for you all that your New Year contains happiness along your journey.
Eight years ago my husbands death certificate read progressive supranuclear palsy and in brackets Psp this is what he died of and as someone said perhaps it does need advertising more as it seems not many people still do not know of this terrible illness which still has no cure. I feel so sorry for those out there suffering from this and even more for the careers looking after them.
Dear Heady, I had exactly the same problem yesterday . The Registrar had to go and "consult" as PSP is not recognised as an official cause of death. I had to give him the full works about PSP, otherwise Bug's would have been recorded as Urinary Tract Infection.
Just recording the underlying cause hides the true extent of this disease. |It also hides the fact that if it wasn't for PSP our loved ones would probably never have got the underlying illness anyway.
Perhaps this is something the PSPA could take up at Government level. Meanwhile, I will raise it with the MP.
Hope all goes well for you with the funeral arrangements. Bug's will be next Tuesday week.
Mum had PSP listed as the third cause of death on her certificate, although at the time I was disappointed to see it! Mums heart failed and I liked to think PSP didn't get to fully claim her. But totally agree that these stats needs to be recorded, far too much loss due to PSP, especially over the last few weeks
Recently I lost my twin sister. On her death certificate just states heart failure. We are being rebuffed by the coroner and pathologist to have PSP on the death certificate. Surely her sedentary lifestyle contributed. She didn't drink smoke had low blood pressure. Would love your comments
I’m so sorry for your loss. If your sister had psp then that surely should get a mention on the certificate, it’s a life limiting condition so has to be a factor surely. I hope you can find some peace, take care xx
Thanks Heady the medical death certificate from GP has "heart failure induced by PSP" in section 1 and section 2 underlying causes "PSP". The official registrar's certificate is another matter I will fight that corner after Margaret's brain donation.
Thanks for the heads up I will ensure PSP gets on that form. Another hurdle from a condition that hides away out of view. I will turn a small spotlight on it.
Tim, I'm so sorry to hear of Margaret's passing. Since Kim passed back in July, I haven't been following all the posts so closely. May she Rest In Peace and may you only have happy memories of healthier times.
Hi Tim, sorry to mention a sad and difficult topic but that's interesting that Margarets certificate stated heart failure due to PSP. My mum died of heart failure linked to coronary heart disease and PSP but they weren't listed as linked. I actually emailed the PSP neurologist at Addenbrooke's (Dr Rowe) to ask if there is a link with heart and PSP. He seemed to think if anything PSP had prolonged mums life due to reduced mobility so heart wasn't stressed!! But mum had numerous ECGs and saw cardiologists etc with no apparent issue other than atrial fibrillation identified.
Anyway I'm rambling but just wondered if there is a connection ?! Thanks anyway Tim
Just catc hing up on news sorry to hear of Margarets death, i hope it was a oeaceful calm tine gir you bith. There is so much to do and organise just now do take care of yourself.
My sister had PSP and died of heart failure and we have been refused to have the condition put on her death certificate. Surely it must have played a part. Would love you to comment
Thankyou for telling us that info Heady, I think that we would all want it to be registered as PSP both for accuracy and that loved ones left behind feel that it is acknowledgement that this disease exists and should be acknowledged. I hope you are coping OK Heady, my love and thoughts are with you.
It's weird it isn't the same in every county isn't it. I never had a problem in Kent and there was nothing else to record so his death certificate just states PSP.
Hi Heady, thank you so much for sharing this very important issue. When W's time comes I will follow your advice. You are amazing, at this difficult time for you, you are still thinking of us here. I take my hat off to you. Sending you all my Love, take care. Nanny857xx
Hi Tim I am so very sorry to hear of Margaret's passing. I haven't been on the site for a while as its been very up and down with dad. My thoughts are with you at this heartbreaking time. Lots of love xxxx
So sorry for your loss heady , PSP is taking hold of our loved ones one by one and it's heartbreaking to watch. My thoughts are with you. Your post has really made me think as when mum passed in February the death certificate read heart failure due to lung cancer. As you know my dad has since been diagnosed with throat cancer and PSP so I am not sure which will take hold of my dad first. To be honest I hope it's the cancer as PSP is taking a hold of my dads personality bit by bit and it's awful to see. I will make sure that when the time comes And if PSP is the cause that it will be recorded as such. Thank you for once again highlighting what is important. Take care x
Yes, that is very important. I asked my mother's GP to write the cause of death as PSP and she agrees as my mom had recovered from her first pneumonia more than a month ago. She just wasn't able to eat or drink (swallow problem). At the end, she was dehydrated and starve to death. But we all know the real reason is PSP.
I do want to make every effort to share more about PSP and help to educate people.
Let us all participate in our own ways to do so.
Thank you all for all your comments, sharing and encouragement for all of us along this journey!
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Hello my name is Ken Kurose. I am 39 years old taking care of my dad with psp 74 years old. 
Signs that death is near
Death wishes 
Cause of PSP....reflections:
