Recognising PSP

[Tunupup]

Sadly I lost my identical twin sister with PSP. We cannot get the disease recognised on the death certificate. Heart failure was the only recorded illness. We have been rebuffed by the pathologist and Coroner. Any comments please

[Kevin_1]

Hello Tunupup

I'm sorry to hear about your identical twin. Though I cannot really understand what that means to you as the survivor, only you know that. I do know it must so very be tough for you.

I am sorry to say I know nothing of the protocols of Pathologists and Coroners... Except they follow them fairly strictly.

You could seek legal advice?

Whatever they write on the 'paper' it does not compare with, or negate, the suffering she went through nor the care that you gave... that is a mountain of pain and another mountain of love... A long hard journey for you both. I hope you can let the pain one go a little... in time.

Maybe someone here more knowledgeable than I will chip in.

My heart goes out to you both.

Warmly

Kevin'

[aliciamq in reply to Kevin_1]

What goes on the paper counts, perhaps, toward finding a cure?!?! I was upset to see heart failure on my Aunts death cert. She fought the dementia battle .

[Kevin_1 in reply to aliciamq]

I doubt it will help find a cure as that is already in full swing. It might make a difference to the National Statistics though. Having said that the NHS gathers statistics automatically from the patient's electronic records.

I aim to have a copy of Liz's diagnosis letter to show the doctor.

[Marie_14]

I am so very sorry to hear about your identical twin sister's death. What a great sadness for you. When did she die and was it in the UK? I ask because if you have asked the pathologist and coroner to put PSP on the cert and they are refusing it she maybe dead a week or so?

I suspect if the coroner has been involved they won't do it. However she must have seen a Neurologist? I would contact him/ her and ask what do you need to do for it to be added to the certificate. It can't harm?

Certainly I know there are people on this site who have had PSP on their loved ones certs. I managed to get MSA on my husband's as it was his last diagnosis. His first was PSP with signs of MSA. I believe that was the correct diagnosis but decided to settle for getting his last diagnosis on as that too is under reported. I will leave a letter to that effect with a copy of the death certificate.

I asked in the hospital just after he died for my husband's last diagnosis to be included on the cert. As virtually nobody has heard of either PSP or MSA I told them it was very important to me and my family. I think they were concerned it might be something which might pass through families! I didn't tell them otherwise.

I know some people have donated their loved ones brains for research and of course they then get a definite diagnosis too? Sadly I left it too late and I suspect you did too?

All I can suggest is the Neurologist who may at least give you a letter saying what your sister had been diagnosed with. You can then take the certificate as it is but keep a few copies and add copies of the letter from the Neurologist to the certs? I know it's not the same as having it registered but it is the next best thing?

Sorry I can't help you more. I thought things were moving on with regards registration.

If you can't let go of it you could ask for a copy of her health records? That should explain what was wrong? It would be there for future generations!

What you need to do is remember your sister and all the good times you had. Nobody can take your thoughts away from you. I am so very sorry you are having to go through this after your loss.

Marie x

[Tunupup in reply to Marie_14]

It's been awful . We will fight on to get PSP on her death certificate. We are sure people don't know enough about this terrible disease. Regards

[Marie_14 in reply to Tunupup]

You are so right that people don't know enough about this. That includes doctors by the way. I really think your best bet is the Neurologist. However If you ring the PSPAssociation they may be able to help you. Please let us know how you get on as your experience might help others.

Hugs to you and your family.

Marie x

[Tunupup in reply to Marie_14]

Will let you know. Kind regards

[raincitygirl]

Dear Tunupup,

Sincere condolences in the death of your twin. I know how much my sister means to me. It must be an awful loss 😥

If there is brain donation, an autopsy is a way of recording the true cause of death, I believe...

Hugs tho you xxx

Anne G.

[enjoysalud]

Hi, I am so sorry. Sorry both for the loss of your twin sister to PSP and for not being allowed to having that posted on the death certificate.

How old were the two of you and where do you live? I ask because I am the 77 year old mother of a son who died of PSP almost a year ago....May 4, 2017. I reside in Los Angeles, CA, USA, as did my son.

I agree with Marie_14's suggestions.

My son's death certificate cause of death is listed as PSP.

It was VERY important to me because it is such a rare disease and I believe it is important for it to be documented. Pneumonia, heart failure, etc, are but secondary causes of death caused by PSP. In the obituaries of the Los Angeles Times I am seeing more and more of death was complications of Parkinson's. This was unheard of not too long ago. The more information we can get out there the better.

My son was under HOSPICE home care by Kaiser Permanente (health insurance HMO) . He was DX by a neurologist (originally in 2015) with Parkinson's and then re-diagnosed by a neurologist with PSP in January, 2017. With HOSPICE he was under the care of a general MD. When my son died, at home, I requested that she submit PSP as the cause. She did.

Unless it is the law in your country/state sometimes it is the "authority" personality that decides what is written.

If it is truly important to you I would research it out and follow thro on the law.

I send you wishes for strength........

[salem16 in reply to enjoysalud]

Sorry for your loss. Can you share with me your experiences of this disease. I don’t know what to expect. My husband has liquid thickened. He also has trouble being understood. I would appreciate it so much. I live in Canada. The neurologist was not helpful look up on internet passed me note. I shocked.

[enjoysalud in reply to salem16]

Hi Salem16, the best advice I can give you is for your to explore this PSP HEALTHUNLOCKED site. At the top, on the same line as HEALTHUNLOCKED in green is a search bar. write in a topic....such as "PEG" or "choking", etc. Postings on that topic will come up.

PSP among patients does NOT usually follow the same trajectory, but symptoms appear at different time lines of the disease.

My son's first three symptoms (age 52) were DOUBLE VISION, slurred speech, and FATIGUE. They appeared on a Sunday after a large Saturday R&B concert where he was the bass player. I called him on that Sunday to inquire how the concert went. His voice was slurred and he told me he had woken up with Double Vision. Others will tell you that the Double vision appeared months or several years later. He died at barely age 55 after a 2nd bout of aspiration pneumonia. I have a friend whose LOVED one was DX at 70, and at close to 79 has NEVER had a bout of pneumonia.

I suggest you get acquainted with different topics....and the symptom. Perhaps you will be prepared or perhaps your husband will be spared that particular symptom.

Good luck....Los Angeles, CA, USA

[enjoysalud in reply to salem16]

I went to your profile. It would be helpful for those who wish to help you if you were to include more on your profile. What country do you live? How old are you and how old is your husband? What is your family situation (do you have children living with you)? EtcEtc.

[Tippyleaf]

So sorry for your loss, as a twin it must be so very hard for you.

I hope your battle to change the death certificate is successful

Sending love and hugs at this difficult time

Xxxx

[LuisRodicioRodicio]

A big hug.

Luis

[bryval]

So sorry for your loss - I do know how you feel. My wife died last month and our GP put cause of death as PSP and CBD. I'm sure it says on the certificate that the primary cause must be recorded , not the final symptom. In your sisters case heart failure was caused by and a result of PSP. Check with your GP first to see if I'm right then you can go back to the coroner with something positive.

Hope you can get it settled and have some peace and closure.

Best wishes Bryan

[Tunupup in reply to bryval]

Will let you know how we get on. We are not giving up. So sorry for your lost. Kind Regards

[Lucy602]

I requested it on dad's certificate. It is listed as a secondary. PSP is usually not the cause but it is the reason for pneumonia or whatever they actually die from so therefore can / should be listed secondary if that is the case. I believe it more for statistical reasons. Maybe if they have actual records it will eventually qualify for for research funding. Sorry for your loss.

[Tunupup in reply to Lucy602]

Will let you know. Kind regards

[Ratcliffe in reply to Lucy602]

Davids death certificate is the same, primary cause was heart failure, secondary PSP. I get that as it was the heart failure that actually triggered the death, but was influenced by the PSP.

At least it was on there is my view.

Keep fighting!

[Tunupup in reply to Ratcliffe]

That has made me feel better that you had it on David's death certificate. We are not giving up. It's a little know terrible terrible disease. We think the Pathologist may never had come across it before. But we are not letting it rest for my sister's sake. Will let you know Kind Regards

[salem16 in reply to Lucy602]

Sorry for your loss. If you could find in your heart to share with me I appreciate. Neurologist not very forthcoming. My husband has liquid thickened. He hard to understand. Writing not the best.

[Artteach10]

So sorry for your loss. I hope a neurologist could help.

[Katiebow]

I also think that PSP should be recorded on the certificate, it is important for future generations of the family to know the actual cause of death of a relative. It would also give more accurate statistics of causes of death, how can you ignore such a debilitating disease and let it pass as pneumonia!

Love kate xx