That's the inevitable, when the meds no longer work no matter the dose.. when the body no longer moves no matter the therapy. when the brain barely functions no matter the supplements... when the pain never stops no matter the pain killers... When the comforting words of loved ones are no longer heard... when their tears never stops
Death is certain to come to everyone but its brutally painful for PwP. Thinking of this future always sends shivers down my spine
So what's the purpose of this thread? Is it to make us sad and scared. Definitely NOT. It is to stir those interested in this topic to think, talk, discuss and research about making THE END non painful, happy and bearable
I don't claim be the most regular user of this forum, but i think what happens is that people like me and others, mostly think about the "now" only, (which is great because a better today also counts towards a better tomorrow). So by the time we get to the last painfull stage of PD, we would have slowed down so much and barely have the energy to be active on this forum again, so our fate now lies in the hands of others who may or may not have the knowledge to make life painless and happy for us....
My hope is that we can shift the discussion on this topic from a current 0% up to say 2%, maybe 3% of discussions
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Grumpy77
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By that time you probably won't have energy to do research yourself anymore... but I guess you will be in the hands of people with the right knowledge of care 🙄
Don’t feel guilty. I hope to be able to be here to help my husband when that time happens. Actually one of my biggest fears is that I go before he does.
Unfortunately, it's something that can and does happen. A close friend of my mom's died last year and that lady was the caretaker for her ailing husband. Both were in their late 70's. After she passed away, their son moved in to take on the role of caretaker. It was not planned, just happened that the son had just lost his job and could do it. Talk about the blessings of God in strange ways.
Rather than worry, why not plan for an eventuality that hopefully doesn't happen?
Working and planning towards making sure the end is not painful is a useful thing to suggest because many PwP find themselves in unbearable situations where the people caring for them have no clues what to do. And by that time they have no strength or ability to do anything about it
If only I could learn to cook healthy like she does.
I was dx in 2012. Skin cancer has been a frequent visitor. Next week I have my last (?) chemotherapy treatment. At the very beginning, the cancer doctor said my condition was treatable. I would have preferred curable.
Well grumpy, I certainly think about this. I live alone so this seems to be the topic when I get up at 2:00 a.m. to pee that jumps into my brain. Years ago after my divorce I was part of a therapy group and I remember the therapist saying, worry is not preparation and if you're going to make something up make up something pleasant. When my meds are off and it's quiet and just me and the cat my brain doesn't follow the rules. That's okay. We prepare what we can and then I think acceptance is the only way to live contentedly. We do not know what tomorrow may bring. I'm still trying to get back into meditation which I did for years but now I seem to have skitter brain.
Consciousness and Chronic Pain:"If the circumstances of a condition suggest there is nothing to be done to improve it, the only sane thing to do is to surrender fully to your powerlessness, to rest there. Anything short of this will only compound the suffering. It’s crucial to be real about this — not to tell yourself you’re fully surrendered if you’re not.
This is the case whether what you’re dealing with is chronic physical discomfort or a loved one lost in addiction.
In the case of chronic emotional pain due to an ongoing situation (your own or another’s), it’s possible to discover that anytime attention is on the immediate ordinary reality, where perhaps nothing of the larger situation is directly apparent, it’s likely the gut-wrenching worry will unwind. You realize that it’s necessary to engage the mind to remember the painful situation. When the mind is allowed (however briefly) to forget, and you’re simply doing what you’re doing right now, attuned to the immediate scene, you’re likely to find relief from the emotional burden inflicted by the constant reminder of the difficult circumstance.
Just because the mind recognizes a situation as ongoing doesn’t mean the emotional pain needs to be constant. The mind will try to convince you that to allow yourself to rest from ongoing vigilance (and the distress it causes) amounts to a kind of neglect or denial. It can seem almost irresistible for the mind to repeatedly revisit the painful thing, the way the tongue keeps touching a tender tooth.
Emotional pain occasioned by an ongoing situation need not be “chronic.”
It’s hard to imagine a more potent teacher than a chronic painful condition. What could have more potential to underscore the difference between life itself and anything the mind can introduce? What could deliver more dramatic evidence about the power and persistance of the mind, about the liberating power of surrender?
With the prospect of an uncertain outcome, maybe the likelihood of no relief, doesn’t it become vivid that the future lives in the mind? That if the mind can be allowed to rest from its panicked picture of the future, then perhaps this moment can be borne?"
I would say that you never know what might stryke you. I used to plan everything. It did not do any good and was useless at the end. Parkinson came and changed my point of view. So now I should worry and prepare and plan for an outcome that you don t know?
There is an option that most of us can take and that is to start doing Fast Walking. I was diagnosed in 1992, when I had to give up my high-powered job because I could no longer justify my salary.Two years later, I started doing Fast Walking and within 4 months I started to feel a little bit better. It then took me six yars of slowly getting better, the faster I walked. In 2002 I no longer needed medication and I have not needed to consult a neurologist.
Thanks for your comment JohnPepper. My husband walks and continues to push forward to fast walk and it helps. He also goes to the gym, meditates and sometimes practices yoga. Keeps moving and keeps a positive attitude especially when he experiences a tough day.
Thank you for your post and talking about "The Elephant in the Room".....i am petrified of end stage PD and would love to be able to take a tablet to end my life when it all gets to much.....we treat animals with more compassion than ourselves.....not wishing to upset anyone but this subject always seems to be avoided.......i realise with PD there is no "one size fits all" but for me its still the dread of the possibility of the worse end stage scenario
Even spies had cyanide pills to avoid torture when captured. Many of us will not swallow the pill while there is hope that you might get rescued before the torture becomes unbearable. For those of us that are beyond hope and swallowing the pill is not an option, you can still make your remaining life meaningful by participating in PD research projects or donating your body to science. We all got to go sometime.....and in the meantime..... live and pay taxes.
I was country head - sales and marketing with a world renowned group before I was diagnosed with Parkinson's . I quit my job voluntarily to take care of my future. High sales targets every month, looked difficult to achieve but I never gave up before trying. I failed few months but maximum months , targets were achieved.
I have learnt with experience that giving up before trying is a crime and request all in this forum to try first to win over the disease before " giving up" . Many of us will succeed.
PD is now troubling me a lot but I am not disappointed.
Have faith in your fighting skills . Probably PD might get defeated. Good luck
a complicated problem ... simple solution ... Bravo!
In my opinion just change sides, from PWP "the problem" to PWP "the solver", that's life. Life poses the problem and solves it, so just change side or point of view to solve it.
Irrespective of whether you plan to debate it or not my opinion on euthanasia will be stated whenever its mentioned and will remain the same. BTW i don't plan to debate it either
Euthenasia was recently legalised here in New Zealand and I'm so grateful that at least it may well be an option if and when I need it. Comforting thought that my wife won't have to do anything illegal which is the other option we have talked about. Death is nothing to fear when the right time comes I feel.
There is no sense trying to plan for the end none of us knows when it will come or how it will come. Live in the moment enjoy your children and grandchildren while you can, none of the rest really matters. Only you can make you happy. I wasted the first year after my diagnosis depressed what good did that do. diagnosed 6 years ago and not giving up.
No one is trying to encourage depression, in fact quite the opposite
Working and planning towards making sure the end is not painful is a useful thing to suggest because many PwP find themselves in unbearable situations where the people caring for them have no clues what to do. And by that time they have no strength or ability to do anything about it
My father who at present is in stage 5 of Parkinson’s started to wish fervently when in early stage 4, for a way of facilitating an end. He sought help from Adult Protective Services. The social worker thought initially that she could help him but then realized that PD is not considered deadly so she couldn’t. By the time he learned of Dignitas and Pegasos in Switzerland, he no longer had mental capacity. As his daughter, the guilt I have associated with this plagues my daily existence.
I signed up with Dignitas in Switzerland soon after I was diagnosed. I might not need it but I feel less burdened by the prospect of total degeneration towards the end. Death can come at any moment and it may not be PD that will take us out …
I prefer to live in the present for now. Many things may happen instead of the end you describe...including a cure or treatment that holds PD progression. Enjoying the present, gratitude for being alive and what I have in my life, I believe are likely to slow the degenerative process. Planning for a peaceful end is also a good idea, I think, to the extent that's possible...
Life is about quality, not about length. My life may not be long, but I have done what I wished for, I achieved, I helped, and I loved and being loved. I have no regret. If the day of the end is coming, I will happily choose the death pill and leave my love and happiness to the world.
Thank you RKM. As a mature adult, we all have experienced so many ups and downs in life. We need to stand high and see the big picture. PD is progressing, while we can manage under the help of drugs and supplements, we do everything we can to minimize its damage to ourselves and to our family. At the time when PD is out of control of anybody, what difference does it make if we live few days longer with every minute is a torture, compare to end the suffering a bit earlier and give back our loved ones the life they deserve to have. The end destination is the same, but with a different journey, I choose the latter to keep my dignity, to mark the conclusion to my life.
This dialogue is refreshingly honest; honest with ourselves and each other. Plan for tomorrow
Hi, Grumpy, my friend. Death can come in many different ways and nothin' we can do can make it more"palatable" if you will. Painful, painless, liberating or transitional, who knows? My uncle passed away at 85 with Alzheimer's and colorectal cancer. Did he know that he was in tremendous pain? Difficult to know.
On the other extreme, a 21 year old son of a close friend of mine jumped out of the topmost floor of a parking garage last year during Covid. He looked serene in his casket although I still cringe when thinking about or re-enacting the jump in my imagination. Oh, the impact should have been unmistakably painful. Then, I recall him in the casket lying peacefully in repose, and I take his Dad for his self consoling words, "he probably wanted to find a more peaceful world beyond. He was probably too stressed out here in this life."
The end will certainly come no matter what. All that matters is that you and I live out our lives to the fullest and make a difference if we can. Dwelling on "what if" won't help.
By the way, didn't you post once that one day you were tremoring so much that you wanted to cut off your hand? Or was it someone else? That and for some reason I recall that you live in the Caribbean😎. Just curious, it doesn't matter though, but if you do, maybe it is the"hurricane blues" again😅
Stage 5 of PD (as I read of it) is a very terrible stage and I believe if we discuss this a lot and do more research we should be able to make it more 'palatable'.
Also I can see that a lot of people have misunderstood what I wrote. Instead most People seem to think that i was being pessimistic, negative, crying in despair and like I'm trying to tell them to worry about what they can't control
But I read my post again and the message is rather a positive one, which is... At the moment there's no cure, so while we're living for today and taking care of today's problem, we should research and work towards how we can make our last days happy and as painless as it can be. Same principle as when governments tell us that while we live for today, we should also build a pension pot to make our last days happier
Now another thing entirely... "Oh, the impact should have been unmistakably painful"
Well if that parking garage is like the ones we have here... 5 - 6 storeys, concrete at the base, then be rest assured... your friend's son felt no pain. Its like being hit by a fast moving train. There is no time to feel pain, there is no time for the central nervous system to transmit pain to the brain and pain feedback to emotional body. The millionth of a millisecond required is just not there
On the other hand think of a very painful and traumatic stage 5 PD drawn out over say 5, 6 or more years. The reactions i see here generally is "whatever will be will be"
yeah my tremors were once so out of control that I felt like chopping off my right hand. These days Its still a big nuisance but I'm a bit better at putting it under control and handling the psychological aspect.
But I'm NOT Caribbean and have never been there. I'm British with African origin. I'm black British. Its amazing you still remember the "chopping off hand" thread though 😂
Very good response, Grumpy! Now that you put it this way, it makes more sense. I live in the Bay area and I am seriously thinking of talking to venture folks about funding for an idea that I have for a pharmaceutical company/startup focused on Parkinson's and Alzheimer's. Effective medical options till the end of life is definitely going to be a focus. At a minimum, our caretakers need to be able to at least know that we're not experiencing symptoms through some kind of feedback mechanism. Something similar to a diabetic blood test which is close to perfection at this point. We have not even started looking seriously at the possibilities and alas, we are not making any progress in Parkinson's awareness. Right now, all that everyone has, is verbal feedback from us patients and that too is flawed. Even after 9 years, neither my wife nor I can tell the difference between Parkinson's tremors and dyskinesia 🥵
Let's keep the dialogue going. Meanwhile, thanks for the compliment about my memory. It is the singular most source of pride for me and I am truly grateful for not losing it yet. I have what is known as eidetic memory or photographic memory. My wife says that it doesn't matter because everything can be googled now and who cares if I can remember everything exactly and regurgitate at will. I respond by saying that it is the difference between Parkinson's and Alzheimer's😅😅
Thanks again for your perspective and for initiating this discussion.
A sharp photographic memory is always a treasure for people of our age and older, so please hold on to it with pride. And keep it sharp with all kinds mental exercises as much as you can 👍🏿
It’s extremely difficult to discuss a subject, such as this, when one is in pain, most of the time, and where PD has affected seemingly nearly every system in the body, and Docs have become tired of one complaining, and lose interest in helping!
This is the more reason why we should talk about it more urgently. The fact that doctors and the the rest of the world for that matter (you will be lucky if you have family members stand with you) would have given up on us by this stage means we are more likely to die with excruciating agonizing BUT AVOIDABLE PAINS.
Thus more than ever we need make this topic one that we HAVE TO BE DISCUSSING REGULARLY so we could find solutions when the rest of the world would want to treat us as a burden they cannot deal with
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? Ciao Luca... si scherza.
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