Why do people insist on promoting the lie that PD doesn't kill?

PD kills. I am 46 and there's plenty of research to show that a PWP my age can expect to have more than 12 years taken off the normal average life expectancy. People in their, say, 70s can expect to lose a few years. The terminal event is likely to be aspiration pneumonia but the it's fatuous to deny that the real cause was PD.

I believe that it's important to know the truth so that we can live and plan our lives accordingly.

52 Replies

oldestnewest
  • I already have swallowing issues, and I've had some scary incidents with food sticking in my throat. If I were to die following such an incident, there would be no mention of PD on my death certificate. But of course it was PD that caused the swallowing difficulty and PD would in reality be the cause of death.

  • My mother has end stage Parkinson's and is now suffering swallowing difficulties. As a result we recently asked her GP to organise a SALT test for her. This is a process by which the reasons for the difficulties in swallowing are analysed by a specially trained individual. In our case this was done within a few weeks at home and involved checking how my mother's swallowing was working. We then received helpful recommendations about how to ease the swallowing problems. These are obviously individual but one which may prove useful, was to have a glass of iced or cold water 20 minutes before eating as it triggers the saliva and aids the smooth passage of food.

    I hope this is of help to someone.

  • I totally agree!!! But they say it is not from the Parkinson's but the complications.....what's the difference??? We all know that this is what it is...plain and simple so quit sugar coating it...there is not sugar coating for us at home when we are shaking or falling or choking or can't move...right!!

  • I'd rather stick my head in the sand and not worry about it !! Every day is a bonus as far as i'm concerned and sitting thinking about PD and your eventual death will turn a good day bad - and will surely bring it on quicker . Stop being so morbid and enjoy life !! I intend to despite having PD at age 46 (dxd at 40)

  • me too! My daughter had a meltdown because her friend's father had a horrible death from PD. She was crying "I don't want you to die!" I told her I'd probably die of something else. My mom's 92, I'm 71 and my PD is progressing slowly. I think. early onset folks need lots of support. Let's get together and help each other have fun!

  • I'm with you, PatV!

    :-)

  • I agree also. Did you know worry shortens our life too. It's hard not to sometimes, but start with writing down tonight all the good things that happened to you today. like being able to - see. to walk to the potty, (if you dripped, that's okay. Your bladder works!!) sitting on the john, yeah!! you made it!! Keep going, it's a fun game.

  • I agree!

    BTW: Choking can be avoided by what we now. Nervous tension can cause throat constriction. People who "die from PD" may not have had the information we newly DXed people have. I don't intend to die young (I am 59, DXed in 2009), and will most likely die of something else anyway. Meanwhile, I intend to keep living and thinking about living a meaningful life, etc while I can. Moaning about our plight will only bring us down further!

  • Metaphors are sometimes the best way to communicate. In this case, PD is like a coin with two sides. Most of the time we choose to show it "heads up". To educate, on a few occasions we show "tails".

    At 51, I and PD proud, I need to see both sides of the coin. I will strive to hold "head up", most of the time. Today, is a good day!

  • Great metaphor. I agree. Handling PD well, a positive attitude, and enjoying life are not mutually exclusive from educating the public on the realities of PD. We need their support.

  • Swallowing issues,for goodness sake,chew your food ,see a dentist,a speech therapist,but the audieNce with god is a long way off.There is no cure,I dont expect one to arrive in my lifetime,tough but ive still got a life to live.

    Your born you live you die

    You laugh you love and you cry.

    Live for the moment live for the day

    Remember you live it,

    You choose the way.

  • Great poem!

  • GREAT poem! Thanks for sharing.

  • I'm not remotely morbid and all who know me describe me as a very positive person. My question is not reflective of a morbid personality; my wish is merely to have some idea of what the parameters are so that I can live my life accordingly. I have an idea what the parameters are and I can take them into account when planning in relation to, for example, pensions.

    Others may wish to ignore them but it simply isn't right for anyone to pedal lies about this disease.

  • Thankyou for raising this isue. Of course we don't want to dwell on it but it's also not sensibleto go into total denial . I know, because I used denial for years after I was diagnosed. It's great - until the problems become so obvious you can't use denial anymore. Then you get a bit stuck. It's no good being a pessimistic misery - you just ruin your own and others' lives, but a bit of realism can help us adapt to our changed circumstances - denial can often end up in increased stress for everyone.

    I too dread the swallowing problems - and I'm afraid they are veryreal for many, not solvable by extra chewing or a dentist as a previous poster suggests.. I'm not going to explain them here - partly because I'm still unwilling myself to think about miserable things I can't change .

    As far as reduced lifespan goes - of course it impacts on our life expectation. It's very disingenuous to say that it doesn't. The good thing is that it's not a predictable decline - as in, say, Motor Neurone Disease. This gives us the fantastic opporrtunity to feel we can take take charge of the course of our own illness. However, during my recent divorce my ex husband tried to claim that PD would not affect my lifespan. The judge demanded an opinion on this from my, very experienced, consultant who, while emphasising that it was impossible to precisely predict the course of any disease gave his opinion that the most optimistic outlook was that by 72 , after a period of being unable to live independently my life 'would have ended'. (Iwas Dx nin e years ago at 46)

    My intial reaction was to see it as a challenge to prove him wrong and I still can't bring myself to think about it. I think the only way to cope is to live for the day. No one knows what tomorrow may bring!

  • Well how horrible for you that you had to given this opinion in the context of a divorce. That said, I wish i could pin my neuro down to an opinion so that, like you, I could rise to the challenge of proving him wrong. That said, again like you, I live for the day.

    As regards the public, I can't imagine that the sugar coating of the truth helps those engaged in charitable activitiies. Everyone knows that cancer can kill. If the public perceive that Parkinson's just makes you shaky, then it's not going to generate much interest.

    I'm not for a moment suggesting that we PWPs should spend much time dwelling on our mortality. I'm merely suggesting that, if we want it, we should be told the truth about our illness. It's quite ridiculous that even the Parkinson's UK website states that life expectancy should be normal!

  • .I'm with you 100% Mark! I feel that Parkinson's UK should be doing much more to raise awareness of PD and what it really involves. This doesn't mean being alll gloomy - life is what we make of it - but just a little more realistic.

    I am a fighter and I don't give up until I drop. I'm sick of being caught in the dilemma of 'do I explain to people how awful this makes me feel' - which comes across as moaning . Or do I say nothing and let them think it's just a bit of a shake - which then makes me look pathetically feeble when I can't carry on.

  • You've hit the nail on the head with your second para. I try to maintain a very positive outlook. But that does have the downside that people just don't get it when you need leeway. People make demands of me in various ways and they just don't get it when I say I can't meet those demands. They think I'm being lazy.

  • Thank you Mark1 for bringing up this topic. Thank you also, Pen1 for your input. I can totally relate to both of you, especially the remark about the dilemma of explaining how I feel and the silent demands on me, even from loved ones, on what I can and want to do, which is dependent on the PD and not from laziness. This is something that nags at me and bothers me on a daily basis, and has nothing to do with my attitude either. It all stems from a lack of understanding about this disease and yes, the mortality issue is brought up not to be morbid, but a genuine wish that PD can be taken more seriously than it is.

  • What a helpful consultant! It must have been of great comfort to you, I don't think. Anyone of us could lose our life at any time and for any number of reasons not associated with Parkinsons.

    Glad you see it as a challenge. As for choking, many people do not have this problem, so I don't see much purpose in worrying about something that may never happen. I will face it if and when I have to.

    Surely, no one can say with any certainty how long we have.

    Take care.

    Sue

  • Right on! Prove them wrong and have fun :P

  • If you were to die you would not really be bothered what it said on your death certificate. And as far as planning your life according to time left this is a non starter for a large proportion of pwp. The diagnosis has removed the element of choice for many pwp. Many find themselves unable to continue working, and only the lucky ones have a works pension to fall back on. Reliant on benefits who can afford to also save for a private pension? STop worrrying about when its going to happen just make the most of the life you have left and live everyday as if it is your last!

  • Ok , perhaps "sticking my head in the sand" was the wrong metaphor - and suggesting you were morbid , Mark,feels rather harsh , Pen , i can assure you that my period of denial ended quite some time ago but , and i may be wrong , i feel i/we can fight this ridiculous condition. I am nearly 7yrs after diagnosis (it took them 2yrs to get to this stage) and feel truly that i can feel "well" for some time to come. I know it may sound unbelievable but i have ran a full marathon evvery year since 2001 - and over the last 3yrs i have even got quicker................all because i will not give in , i won't just accept the "inevitable" because no-one really knows how to "cure" this condition or even what causes it. I accept that you may feel the need to plan for the future - but you also need to lighten up a little - life's too short.

  • You shouldn't divine that I am anything other than positive most of the time from my questions on here. But even if I were not, that's my choice! It's important n life not to tell othes how to think or feel.

  • Once again - I Apologise for any comments i have made that may not have been taken in the spirit in which they were intended . I am probably just a bit too positive at times - so , in future , i shall keep my thoughts and feelings to myself - Good day ? mine will be............

  • I think the issue here could be that in general Parkinsons does not kill. However, there are different types of Parkinsons and some of these can and do kill.

    I lost a close relative to Parkinsons almost 12 months ago so I have seen it do its worst. However, I know that this does not mean I will suffer the same fate.

    Every person is different and progresses at a different rate- some do not progress at all.

    I find, for myself, that I try not to dwell on what could happen in the future, but take each day as it comes. some good, some not so good. I make the most of this life of mine and do as much as I can, when I can. After all, all the worry in the world, will not change our future.

  • Here is a link to an interesting paper on PD life expectancy:

    jnnp.bmj.com/content/78/12/...

  • I find that article so difficult to even understand Mark, sorry, but I know we all will die............I could be in a car accident, or what ever........who knows?? I will live each day to the fullest, laugh, cry and do my best to keep a very positive mental attitude. I have done this all my life......many people have no idea I have Parkie..........I complain only to myself and my dog who happens to be a gr8 listener. I can NOT be around people who complain and are complete downers.

  • I I'm finding it hard to understand why you are so adamant that it's important people know that their life expectancy is reduced. We are well aware of the long-term effects of Parkinson's disease and I for one would prefer not to be reminded of it.

    I know what the likelihood is of a less than average life expectancy however; as was said by another respondent,anybody could get run over by a bus tomorrow, which would dramatically reduce their life expectancy!!!! Parkinson's or otherwise.

    We will all die of something, that's life. I prefer to enjoy my life now rather than dwell on the future I may not have.

    I wish everybody a long and happy life, with or without Parkinson's

    xxxxxxxxx

  • I wholeheartedly believe in living in the moment. But:

    1. Everyone has the right to know the truth about their condition. If some wish to then wrap themselves in cotton wool that's their choice of course.

    2. I am most unlikely to be run over by a bus. I am most likely to die of aspiration pneumonia.

    3. Insofar as one is able, it is obviously sensible to take PD and likely reduced life expectancy into account when making long term financial planning. Living to 70 and living to 95 involve different financial strategies.

    4. This is a forum in which to debate PD health issues; it's clearly not the forum for levity. I can't understand the logic by which certain respondents deduce I spend my life dwelling on such issues. I certainly don't. But again, it's my entitlement to talk about whatever I want.

  • A Dr from Penn told me that this is what will kill me and then told me I would get dementia within 20 years. I asked her if I could just die before the dementia kicks in - she didn't think that was too funny but so what! Everybody dies of something. That's why I do something on days I feel good. The worst thing for me is doing nothing, makes me much worse. Keep moving!

  • Strange that a doctor would be so sure you'll die of Parkinsons that she would tell you straight out that's your fate. Is she a neurologist? How does she know you won't die of something else? How did she determine you'll get dementia? I think you should get a second opinion and maybe a new doctor.

    Dementia can be secondary to PD. I face the possibility that my cognitive deficiencies will lead to dementia. I'm grateful that both neuro-psychologists who have tested me were straight with me. I'm glad I know the cause of my problems with memory, concentration, spatial judgement, forgetfulness, confusion, planning, organization, and more.

    Knowing there is a good (actually bad) chance I'll develop dementia has allowed me to plan for the care I might need. I have let my wishes specific to dementia be known verbally and in writing.

  • I cannot believe this topic! I watched my sister in law die at the age of 25 of hodgkins disease, when she was diagnosed at 21 my husband (being her closest relative) was informed that she would survive for a maximum of 5 years. We did not tell her, but she carried on living having all the treatments and surgery available, wouldn't it have been lovely if all she had to worry about was her financial arrangements should she live till 70 oe 95.

    I am NOT wrapping myself in cotton wool - quite the opposite, this is no dress rehearsal and my life is going to be lived to the full no matter how much longer that may be. We are still here and very lucky to be so - appreciate it!

  • I watched a close relative die after having Parkinsons for a number of years and I would not wish this on anyone. The death certificate stated both pneumonia and long time Parkinsons to be the cause of death.

    Having said this, I have no wish to know my life expectancy. I actually do not believe it is possible to predict this. We all have to die sometime, but I don't intend to stop fighting. I sympathise and understand how you feel about the waste of such a young life. It is something you never get over.

  • I agree wholeheartedly Alison, life is for living. And I'm incredibly thankful that I have a good life.

    No, it's not nice to have Parkinson's, but I plan to live to a ripe old age.

    An acquaintance of my husband was diagnosed with Parkinson's in his early 60s . 15 years later he is still going strong !.

    Another friend's uncle lived (and drove a tractor on his farm) with Parkinson's well into his 80s!! so I for one have no intention of giving up the ghost just yet.

  • I am sorry to hear about your sister in law. I most certainly would want to know if I had only 5 years to live. I would spend that time very differently than if I thought I had decades to live. And those of us who live decades have many more things to be concerned with than just financial planning; that was just an example.

    Not sure what you mean when you say you cannot believe this topic. Surely you're not advocating that certain topics should be taboo? It's rather sad if one can't speak openly about one's concerns about PD in an online community whose purpose is presumably to support people with PD and give them a voice! .

  • Why do people insist in promoting the lie that Parkinson's doesn't kill?

    You have to admit that this is quite a strong, emotive title, which surely you must expect some strong, emotive replies for. We all have parkinsons, thats why we are on this site, presumebly for support?

    We are all going to die, that is one thing in life you can guarantee. One thing you cannot guarantee is how long you have. Parkinson's does not kill, life does!

    Do you have a Parkinson's nurse? Perhaps he/ she would be worth chatting to about this, someone who does not have such an emotive involvement, but can maybe ease your worries.

    I have also learned not to believe everything I google about the disease, it's frightening and almost always conflicting evidence.

  • Having an idea of the rate at which your PD will be progressing and how severe some of your symptoms may become gives you a chance to manage your bucket list accordingly.

  • This sort of concern keeps most PWP's with a foot in both worlds. I want to live every day to the fullest (not foolest!) but I need to respect the kinds of deficits I MAY encounter due to PD. I don't want to have swallowing problems but I bite my lip and/or tongue regularly and it leaves me quite sore. This is a clue to me that I may be in for swallowing issues.

    I have always talked very fast and not taken time to enunciate so I believe it sometimes difficult to understand, I NEED TO BE AWARE and wake up and smell the coffee! Get thyself to the Speech Therapist. I need to arm myself with the armor of preventive strategies and LIVE WELL.

    I am a fighter by nature and I will not go without giving it my best effort. It is a constant effort. but I hope to persevere. If you bury your head in the sand, however, prevention is impossible. We need to take heed and do what we can to maintain function and to live as awarely as we can.

    We are all in this together. Life is good. Nobody gets out of it alive.

  • Some things I thought I couldn't do anymore, I learned to do in different ways. Others I know I'll never do again such as biking bowling, knitting, & tennis. I absolutely loved these activities; but there is so much more to do including using an exercise bike, and playing bowling & tennis video games. I now spend more time on the activities I can do and have begun doing things I like that I never took the time to do before.

    When I'm not active I feel worse emotionally and notice my physical pain more. I look at PD as a challenge - almost a game - to do the best I possibly can, competing only against myself. Like how quickly can I finish this? Can I do this? How accurately can I do this? How many of these can I do? Can I find a way to lessen or relieve my pain? For me, gaming it up, adds a little motivation & fun to doing as well as I can.

  • I am afraid I don't really think of dying just of living as full a life as possible while I can. This does not mean that I am wrapping myself in cotton wool, or burying my head in the sand just that I do not believe it is possible for anyone to predict how long I will live.

    Parkinsons affects everyone differently. Some need to know others do not and prefer to take what life throws at us - coping as well as we can. Don't let us forget the carers. After all, we will all die sometime.

  • Alison, Parkinson's most definitely does kill. I invite you to read this paper analysing life expectancy with PD:

    jnnp.bmj.com/content/78/12/...

    I am relatively comfortable with my own mortality. I don't have worries about this that I need to discuss with a PD nurse. I don't have a PD nurse and I doubt very much that if I did they would be able to illuminate me more than the paper linked above and other such analysis.

    The answers to my question are indicative of the fact that there are of course PWPs who are uncomfortable with the idea that they will die a premature death. I respect that, but such people can choose what they read. The sensibilities of some should not preclude others from knowing the truth. The fact is I am likely to die unable to talk, unable to walk, doubly incontinent and demented. I can live with that, and indeed it's the truth I wanted to, and found helpful to, as it encourages me to make the most of my life now. Yes, there are no certainties but I intend to plan my life according to the likely parameters. All this pussyfooting around is not helpful. If I lived my life according to the mood of the message propagated by so many, I would think PD but a minor ailment!

    I find it very disappointing how many people in the PD community choose to be offended by other people's views and/or try to tell them how they should be. As adults, we are each entitled to think and do as we see fit.

  • I read this paper as suggested by Mark and found it informative but difficult to understand. Whilst, it appears to suggest that life expectancy is reduced in people with Parkinsons, surely this is no different to people with other diseases (this is a word I do not use with Parkinsons but I could not think of another one). None of us are immortal and I, for one, am not offended by other people's views. This site is for people to express their own views and this is what we do.

  • Hi Court, as you say, plenty of other illnesses that curtail life expectancy. My perception though is that, as a wide generalisation, people are much more comfortable talking about mortality concerning other illnesses. Perhaps it's because there isn't a huge difference in life expectancy for the majority of, older, PWPs so in a sense for them it's not such a big deal. It sure is a big deal for me though to know that I in all likelihood will lose 12 plus years. Whether I have come to terms with that or not, it does make a difference to how I plan my life. No matter that I always have and always will live for the moment, I need to have long term plans (even accepting that circumstances might necessitate change to them). The fact that I might get run over by a bus tomorrow doesn't negate the importance of looking to the future in terms of, for example, finances.

  • It seems to me that this is more an issue for the early onset folk. Those of us who were diagnosed in our 60's or later will not, I suspect, have the same concerns. We will, by and large, have completed our working lives and have settled incomes without the worry of how to maximise our pensions etc. I don't mean to imply that we are all comfortably off, we know that isn't the case, but it must be a concern for those in the 40's or even earlier. For these people, some idea of life expectancy is important in planning their futures.

    I am lucky, was diagnosed at 65 and have a slow progression so that I am still mobile and driving after 11 years. I don't need to know when I am going to die, I just get on with doing what I want and what I am able to do on the assumption that I will live a lot longer. I suspect it won't be the Parkinson's condition(that is what I call it, Court) that kills me, it is more likely to be my low blood pressure and atrial fibrillation(causing a stroke), or even my own decision to pull the plug when I can no longer cope with the pain of my osteo-arthritis! But that is a long way off and it is not a concern for me at present. I have no intention of departing this mortal coil yet (got to get the Shakespeare reference in somewhere!)

    Mark, I don't think many people are offended by comments made, we all have our views and for the most part can make or receive them without offence. I didn't think your original question was unreasonable. But I thought your view was questionable until I realised where you were coming from, i.e. an early onset situation. Then I understood and began to appreciate what you were thinking.

    It is obvious from the way the posts on this question have been developing that it is a serious issue and has benefited us all from being aired. Thanks for raising it.

  • Hi Jupeter, I appreciate your post. I'm glad to hear you are doing so well after 11 years. :)

  • I'm still alive.

  • My mother has end stage Parkinson's and is now suffering swallowing difficulties. As a result we recently asked her GP to organise a SALT test for her. This is a process by which the reasons for the difficulties in swallowing are analysed by a specially trained individual. In our case this was done within a few weeks at home and involved checking how my mother's swallowing was working. We then received helpful recommendations about how to ease the swallowing problems. These are obviously individual but one which may prove useful, was to have a glass of iced or cold water 20 minutes before eating as it triggers the saliva and aids the smooth passage of food.

    I hope this is of help to someone.

  • I completely agree with keeping a positive attitude and embracing what you CAN do instead of what you can't....but here in lies the problem of ignoring/hiding from the facts of what Parkinson is capable of ..

    Most PWPs present a great front to the public, all the public really sees of the disease is some tremors and jerky movements.How can they understand just how devastating Parkinsons can be, and why a cure is so important unless we are vocal about the impact Parkinsons can have?

  • Mark1,

    I think it is important to educate ourselves about PD; however, I try to stay positive and do not wish to dwell on my mortality. Some PD days are harder than others; but I won't give in or give up!

    I agree that the public needs more awareness of PD and what it can do. Until it happened to me, I didn't know...now I do.

    Cheri

  • After having spent quite a long time trying to get people interested in promoting the awareness of Parkinsons and failing miserably, I don't know what else is left. People obviously feel strongly about this issue, but can not or will not become involved. I still feel very strongly about Parkinsons being a forgotten illness, but have to admit defeat. I hope Pen1 has more success.

  • CDC Lists Parkinson's as the 14th Leading Cause of Death in America

    Parkinson's disease is the 14th leading cause of death in the United States, according to the Centers for Disease Control and Prevention's annual analysis of mortality data. The CDC also released data this week showing there was a 4.6% increase in deaths attributable to Parkinson's disease in 2010 (the most recent year for which they have data). While the media is focusing on the fact that homicide has fallen off the list as a leading cause of death, here at PAN, we are focused on what we can do from a policy perspective to one day have Parkinson's no longer appear on the list.

    While the CDC's mortality data is a long-standing evaluation tool, what the Parkinson's community has been fighting for is for the Centers for Disease Control and Prevention (CDC) to collect and analyze data at a much more detailed level about the incidence and prevalence of Parkinson's and other neurological diseases. This will allow researchers to help identify populations at high risk, recognize related environmental factors, and, when coupled with scientific research breakthroughs, begin to establish prevention strategies. This is critical work that must be done to get the research community closer to better treatments and cures. There is legislation introduced in Congress – called the National Neurological Diseases Surveillance System Act – to create this data collection system which PAN supports. We also encourage people with Parkinson's to reach out to their Members of Congress to make sure they support it, too.

    As our population ages, legislation such as the National Neurological Diseases Surveillance System Act – coupled with strong federal funding overall for research and supportive policies for people and families living with Parkinson's disease – becomes ever more important. Between 500,000 and 1.5 million Americans live with Parkinson's, a disease for which there is no cure or treatment to stop the progression.

    parkinsonsaction.org/news/c...

You may also like...