I know many have recently lost a loved one to PSP or CBD, so I apologise for any possible insensitivity on my part as I discuss this subject.
Raising awarenss of PSP/CBD is important and this should apply to accurate information on death certificates. The site CurePSP has surveyed this area, along with a couple of research papers.
I was wondering if those on this forum could indiacte whether PSP or CBD were mentioned on their (clinically diagnosed) loved one's death certificate, either as a direct cause or as a complicating cause (e.g. aspiration pneumonia). Where a comorbidity was the cause was PSP mentioned anyway?
Out of interest, a survey from England and Wales 1993-2000 (plus subsequent review) found that the numbers describing "Progressive Supranuclear Palsy" on certificates were affected by 1. A different name, "Progressive Supranuclear Opthalmoplegia" or "Steele-Richardson-Olszweski syndrome". 2. A wrong code, that caused PSP to be named under "Motor Neurone Disease" ( so when numbers were corrected from 2002-2008, they rose for PSP from 57 to 1435).
How involved were forum members with the registering doctors with respect to having Progressive Supranuclear Palsy written on the death certificate?
Again, sorry if this is still "a raw" subject for many.
Thanks for raising the question, Strelley. It's an important issue, and something we should be aware of in advance. We need better statistics. Easterncedar
Funny you should mention this...my mum passed away on 1st May and it was already cited on the death certificate as a complicating cause. The causes of death were cited as respiritory failure, aspiration pneumonia, PSP and c-diff.
I had to take a step back from the forum for awhile, after loosing Mum it was just too raw and upsetting. First day back, wanted to check in with my friends first, I was very saddened to see Jim's news, I've messaged him privately. Also written to Gramps aka Peter Jones. How are you my lovely? Your wife? Pm if you'd rather sweetie as you sounded quite low the last time we chatted.
Anyhow to answer your question. I wasn't approached at the hospital or by any other means with regard to mums death certificate. Reason of Death states PSP. Nothing else at all. Death certified in Wales September 2013
Look forward to catching up my lovely, please also send my love and hugs to your lovely wife
Thanks for this post. Good to hear from you again. I do understand about your feelings with the loss of your mum. It's hard and time does help somewhat.
My wife slowly progresses with this disease, but I am pleased after about 5-6 years she is managing to still eat reasonably and enjoy the company of family and friends (her voice can be so soft and her thought processes so slow that having a conversation is sometimes difficult. She tires at the least activity. Terrible fatigue, but sleeps well ...so I can sleep too!).
Thank you for raising this. When Mum died two years ago my sister and I were both concerned that the death certificate merely stated pneumonia- signed by a local GP who attended the Care Home.
My sister's daughter-in-law is a GP and she suggested the certificate could be amended but we didn't know if this was possible and didn't have the energy to find out.
Dale died "suddenly" (to me, anyway). I hadn't made any arrangements for autopsy, nor did I think about it at the time of death. We had only been in this new state a little over three months, and he'd only seen his new internist once. Nonetheless, Dale's cause of death on his death certificate reads, "Progressive Supranuclear Palsy."
On March 27th, after two weeks in which he was unable to swallow more than a few meager bites of food each day, my husband lost his battle with this horrible disease. His death certificate lists progressive supranuclear palsy and failure to thrive as the causes.
Strelley, I'm awaiting my dear wife Sharyn's death certificate now. Don't know what the cause of death will be but hoping it's PSP. I'm hoping it arrives today. In my state if everything is in joint names you don't need a lawyer or go through probate. I just take the death certificate, my ID, and the Will to the courthouse and it's a done deal. However, if you have even one asset that is not in joint names you must go through probate which usually means a lawyer and associated fees. Not sure how it works in the UK or Australia. I did the same procedure with my first wife of 31 years who passed due to CJD. No probate or lawyer required. Something to think about for others on the PSP path. Jimbo
My father's death certificate says 1. Pneumonia then 2. Parkinsonium Syndrome,Dementia, Small Vessel Disease of Brain. ! No mention of PSP.
I took no notice of this as the death was certified by the doctor who had left Dad moaning and crying out with pain as he struggled to breathe; and after the death had happened and I questioned this idiot, he said 'How could I tell that he was in pain, he cannot speak!' I just had to get out of that place as quick as I could and make sure arrangements for the tissue donation were carried out correctly and successfully. I will get the death certificate altered if need be when results come through. I do not understand how these Dementias can be specifically named without a brain biopsy. Naturally I made an official complaint against him but have had no official outcome or response from them. Am I surprised? No, I don't think so!
My mother died there 5 years ago, they made a 'pigs ear' of that and I got her certificate changed! Good old NHS, unbelievable! It is so important that cause of death is recorded accurately. My friend's relative in Scunthorpe died in the throes of C.Difficile and this was not mentioned on the death certificate. It was at a time when these hospital bugs were rife in this country and my friend was convinced that the hospital was purposely trying to 'doctor' the records for official purposes. My friend was so upset at the death of her uncle and she is of a rather gentle disposition and so said nothing, but she is not stupid and put 2 and 2 together.
My late husband's cert has CBD on it. When he was diagnosed with CBD I got the book from the PSP assoc and passed it on to our GP for her to read. She then ordered one for the surgery and made sure that all staff were aware of the condition as no one had ever had to deal with it before. I only asked her to put CBD first for statistics so it got recorded properly.
When I received Bill's death certificates, after all we had been through, I was infuriated that they stated cause of death as "Parkinson's Disease." Our doctor who signed it knew different. I suspect an office nurse filled the form out and just asked him to sign it. Maybe I'll get around to having it officially changed, but for now I just don't have the energy.
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hug sand xxxx
Death Notice
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Impact of family death on PSP
3rd month after death
Death because of Aspiration 
