Life expectancy with Parkinson’s

[blazyb]

fightingparkinsonss.com/202...

My latest post on a tough subject that is being talked about a lot so I wanted to give my personal hopefully positive view.

[MBAnderson]

when I click the link it says, "page not found."

[Oneworld23 in reply to MBAnderson]

It worked for me

[JayPwP]

I have not read the blog or the study.

Is there a cause given for reduction in lifespan of PD patients or only the association?

[beehive23 in reply to JayPwP]

im dying of PD..chest muscle rigidity leading to lung collapse and heart failure, i watched my uncle and grandfather die from pd. hang tough.

[JayPwP in reply to beehive23]

Hang on. Is there no alternative for you? DBS? CBD? Anything at all?

[beehive23 in reply to JayPwP]

dbs alleviates tremor....

[blazyb in reply to beehive23]

Thank you and i am so sorry to hear your news and send you my love and prayers

[Nalapuss in reply to beehive23]

Hi Beehive23,

So sad to read your response.

I think I’m in the same boat I struggle to breathe especially first thing in the morning and from around 7pm. Sinemet/ Entacapone don’t improve the situation as much as I’d hoped.

May I ask how you were diagnosed with stiff chest muscles - if diagnosed at all? Or do you just know in yourself that this is the problem?

Any tips / coping mechanism would be really appreciated, thanks.

[beehive23 in reply to Nalapuss]

my lungs are healthy....i could not breathe, as much as 86% of pwp will expire from respiratory issues. my lungs keep collapsing with no damage...ergo...and its responsive to levodopa....

[JayPwP]

blazyb Please would you respond to my earlier question?

[blazyb in reply to JayPwP]

I am not a medical professional but to me m it is mainly focussed on the factual statement of association and not too much on the causes although it talks about chief symptoms eg

“ The most common primary cause of death of PwP is pneumonia, which is often secondary to aspiration as a result of immobility and dysphagia. Other complications from PD such as injuries resulting from falls will also contribute to an increased mortality – hip fractures are particularly notorious in this regard . These mortality patterns are mirrored by the reasons for emergency admissions in PwP: pneumonia, motor decline, urinary tract infections and falls have been described as the most common reasons for hospitalization in PwP”

[Esperanto]

“PD, you won't die from it, but it ends badly” is often said. On my first Parkinson's Day, I immediately had an argument with a neurologist who denied a lower life expectancy in a lecture. Coincidentally, I had just read the Dutch study below, which clearly shows how many years Parkinson's can take away from you. With my diagnosis at the age of 65 as a man, that was an average of 6 years! It seems important to know, but apparently it's a big taboo.

As expected, the life expectancy for people diagnosed with Parkinson's disease was shorter than for people in the corresponding control groups, averaging 2 to 4 years. The difference strongly depended on the age at which the diagnosis occurred. At the age of 55, the 'healthy' life expectancy was about 30 years, but with a diagnosis of Parkinson's disease, it was about 10 years shorter (with an uncertainty of about 5 years up and down). At a diagnosis at the age of 75, the reduction was smaller, around 3 to 4 years with a 'healthy' life expectancy of about 12 years. At even higher ages at diagnosis, the differences were even smaller. The found differences were slightly larger for men than for women.

Lisanne J. Dommershuijsen, Alis Heshmatollah, Sirwan K.L. Darweesha, Peter J. Koudstaala, M. Arfan Ikram, M. Kamran Ikram, 2020. Life expectancy of parkinsonism patients in the general population.

doi:10.1016/j.parkreldis.2020.06.018

sciencedirect.com/science/a...

Estimated remaining life expectancy for PD

[beehive23 in reply to Esperanto]

how about stop name caklling and defining the worst of pwp....gymsack

[Esperanto in reply to beehive23]

Gymsack consistently presents a realistic perspective on the future, and I have gained valuable insights from it. It emphasizes the importance of not ignoring what is likely to come even though that's not always enjoyable and instead preparing for it to some extent. Additionally it doesn’t have to stop you from maintaining a positive mindset and making lifestyle adjustments. Personally, I have found this approach to be effective. Others may choose different methods such as brisk walking, QiGong, prayer, designing PD gloves, using NIR caps, fight against pollution, fast, process your traumas, just eat meat or taking supplements based on the last positive study. The key is perhaps to have faith in something and believe in its potential impact. Do what you can and enjoy life in the, shorter, time you have left! 😀

[beehive23 in reply to Esperanto]

how about stop name caklling and defining the worst of pwp....gymsack

[Gymsack in reply to Esperanto]

Very well said , I admire the ability to express concise well worded thought . I do not seem to have the patience or time anymore to make my ramblings shorter.

[Gymsack in reply to beehive23]

ok , Beehive

anything else ?

Why are you afraid. 100% of all the people living are going to die . Really , I think that it is probably not as important how you died as how you lived . I have not yet touched on discussing the last phase (the worst of PD ) and I probably will not, no purpose.

I am curious though what name calling you object to .

[Gymsack]

hahahahahah

you guys kill me

Look at all the precious time you are wasting worrying about how much time you have got left . Maybe spend some effort looking at the quality of that time, because many people that I knew that where my age are gone and they have been leaving for many years. healthy people that I went Jogging with ( It was a running fad in the 80' s , kinda like fast walking) and they never seemed to be sick until one day boom, dead. The guy across the street died while jogging at 55. Think about this : You may be in so much pain in another 5 years that you will wish you were dead. Stop whining , you are scaring your family.

There is a movie, Jack Lemmon , Walter Mathow and Sophia Lauren playing old friends and news comes that an old man they knew who had an ice fishing hut next to theirs has died in his sleep and their reaction is " lucky bastard".

Get up and get out and make the rest of your life worthwhile , so somebody will remember you that is what matters. not trying to lengthen the amount of time we will be a burden on society. Woops did I say that out loud.

Be happy

[Esperanto in reply to Gymsack]

I share your perspective but strive for honesty in medical information. Acknowledging that I may have around 6 fewer years to live has become a significant aspect of my newfound approach to life. It reinforces the importance of living in the present moment and embracing all that life has to offer. Indeed, life is truly delightful! ☀️