Please accept my apologies for this morbid subject but I need the the help of this forum to give me advice advice, which is as follows:
My wonderful mother died approximately 4 months ago, where a pm was undertaken which they vaguely gave a cause of death as natural causes.
My mother was only 59 and had suffered from Parkinson's for only 7 years. When i look at the symptoms, msa and psp jump out at me, yet when she was alive, the hospital and specialists said this could be diagnosed upon death.
In the post Mortem, they took a number of samples of her brain and I asked the coroners office if they had analysed the part of the brain which would indicate psp or msa. In response to this the coroner said they had taken a number of samples but as this is a 'private matter', this would have to be funded by ourselves and we would have to go to a different department.
As you can imagine, this has left me a little bemused and I feel I have not got any closure as a result of this process. Based on the above, I have a number of questions that I hope you can help me with (I am also awaiting a response from our Parkinsons Doctor/Nurse):
Is Psp a genetic disease (research would suggest it is not)?
Is msa a genetic disease and what are the likelihood that a sibling can get it if they are genetically linked?
Does it have to be the deceased that has to be tested, or for example, can i bested in the form of a brain scan?
What are people's thoughts on getting genetically tested? My line of thought (just like my Mums), is to life life to the full and don't worry about what might be?
As usual, thank you to all the great people that exist on here, sufferers, carers or specialists!
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YipYapStaam
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This must be a distressing situation for you. PSP and MSA are considered "sporadic" diseases and not genetic. There is a rare form of PSP that is hereditary but that would be evident from family history. There are a couple of genes that are implicated in the complex process of PSP but they do not substantiate the disease as being "genetic". Thus, there is no real point in being genetically tested. Also, there are no other medical tests to definitively diagnose PSP/MSA although MRI and PET scans can assist identify the disease with clinical symptoms. Only a brain autopsy can identify if one has suffered from Parkinson's or PSP or MSA.
I'm not sure of the medico-legal aspects of autopsies but I think the coroner is the only one to receive an autopsy report. I'm guessing one has to pay for specialised tests to identify PSP etc.
Nevertheless, I cannot understand the autopsy result producing a cause of death of natural causes. This seems bizarre, especially when she was diagnosed (or misdiagnosed) with Parkinson's. I would have thought it might indicate some cause of death due to symptom or symptoms as complications of Parkinson's e.g. aspiration pneumonia or respiratory failure etc etc ( or some other cause of death from another condition). Does the death certificate say "natural causes"?
I hope the Parkinson's doctor will be able to clear up this matter.
All the best
T.
in reply to
Just seen an article that states in the UK 10,000 deaths a year are described as "natural causes" and this situation needs to change. One in five deaths may be inaccurate according to one study. Even patient's in a nursing home, murdered by a serial killer had the cause of death as "natural causes".
The system in the UK (and elsewhere) needs reform! Death certificates need to be as accurate as possible, irrespective of the cost to the health system.
Hi Strelley, thank you for taking the time to reply. I do not have the report with me but it said natural causes as a result if heart failure-basically because of a lack of oxygen, not enough blood was going to her heart. They said this was a side effect of Parkinson's.
I would have hoped from the pm, they would at least be able to analyse samples of the brain to at least say it was purely parkinsons, or msa, psp etc
Thanks for this added information about the cause of death. They do acknowledge that death resulted from a complication of Parkinson's (namely low oxygen levels that stressed the heart). However, the term "natural causes" seems out of place when the cause of death was the result of complications from a well defined disease (which was not "natural").
Please let me know if you manage to have the brain tissue examined and reported on (if not already examined) to determine whether diseases like PSP or MSA were evident.
PSP is not genetic. There are only a very few cases where members of the same family have had PSP. However, I've read that your genes may make you susceptible to PSP but that in no way means you will get it. You are right, don't worry about what you can't change. Live life to it's fullest. We all have to die of something. Jimbo
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