Surprise death

[rhyspeace12]

This isn't a question, but an answer. My husband died suddenly, and very unexpectedly ,in February. Last night i found a condition I had never heard of before on the internet. (I was trying to find out if maybe he had the corona virus, but there was no where he could have been exposed to it.) The only symptom my husband had was that for a few days before he died, he had a distinctively blue nose. It must have been from poor blood circulation, The condition is called SUDPAR Surprise Death in Parkinson's. There is a longish technological explanation of the disease. You can look it up, but i wanted to share it in case any of you or your families have the same shock.

[Hidden]

I heard the phrase “blue nose” in the past but not related to Parkinson’s

[2bats]

My sincere condolences for your loss.

Did your husband suffer from Raynaud’s Syndrome? I’ve had this for several decades and suspect I’ve been suffering Parkinson’s Disease since I was young. A year ago I had a CAC scan, expecting a low score as I’ve always been lean and fit. I was astonished to discover that with a CAC score of 4701 I had severe CVD - and an explanation for my poor circulation. I am attempting to reduce the coronary calcification with a LCHF diet on the basis that this is probably the only way to reverse the damage and the high probability of undiagnosed T2D associated with the CVD.

I would be very interested to know if there are other PWP out there with high CAC scores who like me are TOFI (Thin on the Outside and Fat on the Inside), to the point where it was extremely difficult to persuade my GP to refer me for a CAC scan. If you guys haven’t had a CAC Scan, I would strongly recommend that you get one. See insideradiology.com.au/coro... and watch the enlightening youtube.com/watch?v=NSPcuGj...(Not working as expected?) - Widow maker film

Best regards, Phil 2bats

[pyckle_syckle in reply to 2bats]

2bats, thank you for your informative post.

Would you please define the acronyms you cite?

Thanks...

[rhyspeace12 in reply to pyckle_syckle]

I think you mean SUDPAR Surprise Death in Parkinson's.

[2bats in reply to pyckle_syckle]

Coronary Arterial Calcium, CardioVascular Disease, Low Carb Healthy/High Fat Diet

[rhyspeace12]

No,he didn't have Raynaud's Syndrome. He seemed healthy, except for his hallucinations and psychosis if he wasn't treated with medication. His heart and lungs were okay. He was on a pacemaker, but he rarely experienced AFIB. He just seemed to wear out, but i would have given him another couple of years.

[Bron60]

Sorry for your loss

[ParkinsonSpouse]

I'm so sorry to hear about your husband's passing.

Thank you for thinking about others & taking the time to post. I never heard of 'blue nose' before & will research SUDPAR.

[Peplaugal in reply to ParkinsonSpouse]

My condolences on the loss of your husband. May you find a sense of peace.

[rhyspeace12 in reply to Peplaugal]

Thank you. I realize that 5 months later. I have gone back to remembering the core of our marriage, not being a caregiver.

[MBAnderson]

Sorry for your loss.

[Chicachi]

I’m very sad to hear of your loss

[rhyspeace12]

Thank you, peolpe are so kind. I wrote about the sudden surprise death, simply because it was such a surprise, and if it happens to any one of you, it's a clue as to what went on.

[TomandDon]

So sorry to hear of your sudden loss of your husband. Thank you for sharing about SUDPAR. Even with your loss and grief, you are thinking of others. You have a kind heart. Thank you again.

[MarionP]

Very sorry. I had heard of it, but what I heard was that it was essentially unstudied, meaning there is no reliable way to predict it or even diagnose it, so there is also nothing that one can really do about it, at least not yet. There is a little bit, but not much at all to help understand it.

Behind a paywall, one of the leaders in that field and his team recently said this, while asking for more research: "Considering these facts, it has been speculated that duration of PD, gender, severity of motor involvement, sleep disorders, concomitant cardiac and pulmonary disease, and drug treatment, particularly polypharmacy, could be possible risk..." [factors].

That's as good a starting point for creative speculation as any.

[rhyspeace12]

I found a very interesting article on it. That's why I posted myspeculation. It made the most sense of why we lost him suddenly, and in the article it said 1 out of 6 PD patients died that way.

[Hikoi]

Rhyspeace

Thanks for posting this. I had heard of sudden adult death, (SAD) but not this though I am not surprised. I think there is much unknown especially in relation to autonomic dysfunction. Also breathing and cardiac problems. I find none of these are mentioned by neuros. Probably as there is no Or little treatment to offer.

pubmed.ncbi.nlm.nih.gov/297...

[rhyspeace12]

I think you are right. I think he preferred to die this way, it was sudden and in his sleep. It was just so unexpected. Right to the end, even though he had some dementia, he was reminding my son how to fix the pump on our well.

[LindaP50 in reply to rhyspeace12]

One of the sweet moments for you and your son to remember. Very sorry for your loss. Take care of yourself.

[rhyspeace12 in reply to LindaP50]

My son had a dream/wake situation soon after his father died. He was staying in his fathers room. He woke up to see his father standing there with a big smile on his face,looking healthy. His Dad said, "Hi Gar" and my son yelled out, "I love you!" and then his father disappeared. Only his Dad called him "Gar", we call him Garrett.

[LindaP50 in reply to rhyspeace12]

Love this - thanks for sharing

[Seacrab]

I am sorry for your loss

[rhyspeace12 in reply to Seacrab]

I miss him...

[Parkie-]

Thank you for posting. As usual, even with your grief, you are thinking of sharing and trying to help others!

[pyckle_syckle]

Please except my condolences for your sudden loss in my thanks for your generous spirit at this difficult time.

[rhyspeace12 in reply to pyckle_syckle]

Thank you, I got hooked on trying to find ways to help him. I know what you are all going through.

[Pinyin]

I hope you have many happy memories to help you through this difficult time. Thank you for sharing with the community of friends here.

[rhyspeace12 in reply to Pinyin]

All of you have been so kind with your condolences. Thank you! I have a story to tell. We were married for 58 years. When we were younger and lived in Florida, we would go to our favorite beach bar on Friday nights. Right before we left we would always play a certain Tom Petty song. The morning after he died, I had to go to Target to pick up a prescription. As I stood in line, that song came on, loudly. I can't even remember hearing music at Target before. I like to think it was him.

[pdpatient in reply to rhyspeace12]

Rhyspeace, trust me, it was definitely HIM! I know that because I got a similar sign from my dad who passed away last year and I cremated him. We were in a area of severe drought and it had not rained for over 9 months. The second I finished the rituals according to ancient tradition, it rained with a vengeance. It is a belief in our culture that the GODS shower rain when good souls pass on.

[Cindyross]

I am so sorry for your loss

[rhyspeace12 in reply to Cindyross]

Thank you, that means a lot!

[sharoncrayn]

ncbi.nlm.nih.gov/pmc/articl...

(FYI /Sharon: please note the role of cardiovascular abnormalities in PD as well as SUDPAR. Correlation does not mean causation, but I wouldn't ignore it.)

"The causes of SUDPAR are unknown, but cardiovascular risk factors (∼60% of people with PD have cardiovascular abnormalities) may play an important role. Notably, one practical problem in studying the risk factors, mechanisms and prevention of SUDPAR is that the condition is relatively uncommon.

Their study revealed that four of 16 PD patients died of SUDPAR without any satisfactory causes detected by autopsy, making SUDPAR the second most common cause of death among the population evaluated ...

Human and experimental research suggest that cardiac abnormalities and autonomic dysfunction play key roles in SUDPAR ...."

Sharon

[rhyspeace12]

He had a pacemaker that was put in to test drugs for his AFIB, but really had no heart problems, so to speak. However, the blue nose tells me that his circulation was poor. He went to a Super Bowl party 2 days before he died, and had a good time..eating, drinking, cheering, talking to friends.

[Pnyldy]

Thank you for posting this important information! Praying for comfort, peace and understanding for you during this time of transition......

[rhyspeace12 in reply to Pnyldy]

It is interesting that you mention feeling peace.That emotion did just suddenly come over me as enough time passed to stop feeling so frustrated over not being able to help him.

[beehive23]

excellent info. im truly sorry about the shock your going through.

[rhyspeace12 in reply to beehive23]

Thank you. I find myself wanting to hare so many things with him.

[beehive23 in reply to rhyspeace12]

i understand ..........

[OREOLU]

May his gentle soul RIP.

[Rhyothemis]

I'm so sorry for your loss.

My daughter had blue lips during her episode of neuroleptic malignant syndrome. NMS is an adverse drug reaction ( in her case to Reglan) which results from a sudden drop in dopaminergic activity. She appeared to have 'happy hypoxia', similar to people with altitude sickness. NMS can cause pulmonary edema which comes on suddenly; the explanation for it given in the medical literature is aspiration pneumonia. In her case it seemed to resolve very quickly, also and so I have doubts about the aspiration pneumonia theory. NMS-related pulmonary edema seems more likely due to dopamine's effect on the Na/K ATPase in the lung epithelium:

pubmed.ncbi.nlm.nih.gov/162...

When they finally got a pulse oximeter on her [ this happened when she was hospitalized for intractable vomiting] they turned the monitor away so I couldn't see, but my daughter says she did see the reading and it appeared to be normal. Her lip color was normal by that time, in any case. I can't be sure that it was in fact pulmonary edema that caused the apparent hypoxia, though - it may have been localized (not from hypoxemia) - some sort of impairment of microcirculation or even mitochondrial function.

The Na/K ATPase is expressed on all cell types and as the article above points out, dopamine can have varied effects on its function depending on the tissue/cell type.

[rhyspeace12]

This is very interesting. His nose was blue over a period of about 5 days. About two days before he died, his tested got swollen. Then that cleared up.

[rhyspeace12]

I meant testes above.

[ddmagee1]

You have my deepest condolences for your sudden loss! Those of us, who have been diagnosed with PD, should probably be aware of this, but not let it scare us, and make us feel bad. I had heard about SUDPAR before, but, I believe, it rarely occurs.

[kevowpd]

Everytime i see someone confidently declare that you dont die from PD, i think of you and your story.