So many of us experience chronic illness, I think your Newsletter topic is incredibly important and a valuable niche.
The trauma of Covid-19 and a healthcare system in decline has also worsened our mental health in times of financial pressures.
Never before has our healthcare system or support system been so challenged. With aging populations, comorbidities, Long-Covid (4 million out of the labor force now with that), obesity, deaths of despair, opiod crisis - we are in tough.
Yes, I would agree, we will likely see the continual rise in levels of chronic illness is likely to only accelerate, in the aftermath of covid, and furthered if the upcoming energy and food crises as bad as some are predicting.
one of the things with Parkinson's is there is no definitive test, just a symptomatic diagnosis, which means, what?? mostly nothing I think. you have this set of symptoms and therefore you have a disease. Maybe, maybe not,
There is a smell test being developed - dogs and some people can apparently smell PD - but my worry is that is going to define PD, even it the smell isn't there for all people with PD, or is sometimes there for people who don't have it. And they have little idea what causes the smell. But yes that is the conclusion we have come to before - diagnosis labels are just human inventions, like constellations, ways to group symptoms. Our approach is to forget these labels and to look at each symptom and try to get to root causes. For example, does this symptom get worse when you are stressed - if so it probably has to do with natural survival instincts, and stress reduction approaches will help a lot. ps I started this substack because my main website is for people with pd, but I had things to say which translated much more broadly.
I particularly appreciated this final note: “develop our sense of having a right to be, the knowledge that we are enough as we are, and that we have no points to prove;” – – I’ll be working on that one!
Gary, I believe in on at outward curve after a lifetime of chronic low level grief and depression. Your list here is so affirming. Aside from a couple of technical actions (such as regarding fascia), I can now identify how I’ve integrated so many of these into my life over the last decade in particular, since I first began to realise there was a major issue. Thank you again for your work here.
I think they are quite universal arrival places for those who are healing journey. I'm talking ton Visceral Adventure about making these into a follow up video to the Cumulative Impacts movie https://garysharpe.substack.com/p/cumulative-impacts-the-movie
Gary, after following your posts since 2018 I just want to say how in awe I am if your dedication to exploring your situation in such a rounded and curious way. Seeing you grow through your articles - has been truly heartening, it’s visible in your face, you use of language, the way your articles are presented, your writing - hats off to you. Having been an avid reader around my passion for my profession, first a physio, then craniosacral therapist, evolving into a movement/hands on/somatic exploration fusion of a thing, I would say your ability to assimilate and re-present information in such an articulate and useful way is a gift. Just wanted to say… :)
Wow! Thankyou. Very encouraging and thrilling to read. Would it be ok to share this (anonymized or not) on the "feedback" section of my website? https://www.outthinkingparkinsons.com/insights
Great post, many thanks...just a wee addendum, prof Gary...it seems to this ol'mechanic, surprisingly, that many Healers, as well as patients, often refer to their ills as 'MY'(insert ailment)...geez, after a bakers dozen of m/bike crashes,ladder /roofing falls plus rArt,pleurisy,3rd deg burns,CO poisonings,paralysis,etc, it has never entered this addled brain to OWN all these accidental/ karmic stupidities.Y'all can go a lot farther by travelling light,eh? cheers
Hi Gary , I somehow have stumbled across your post today and have read so much. I feel it's just what I've needed . I'm suffering from chronic disease and suffering with dreadful pain and symptoms . I am quite fed up with the typical responses I've had over the last few years in trying to diagnose what exactly it is I have. In the meantime it has dramatically become much worse and never thought my immune system would be in the mess it's in. I agree with so much you've written.
I do believe that so much of my pain and whatever it is I've developed is from trauma, constant stress and so much dissapointment for far too long.
So many diseases similar to one another and like Parkinson's it is I feel really only a guess . I hope I can find out the answer to whatever it is I have but in the meantime will follow and try and put in practice much of what you have suggested that can help chronic disease I have so much enjoyed reading it all. Thanks so much , Chrissie
Hi Chrissie, and welcome. So sorry to hear you are suffering. I sure hope there is something in what I've shared that you can find to bring at least some relief and peace. I think just understanding ourselves and the fact it is not just a question of "what is wrong with me?" but also "what happened to me?" is a useful start in itself?
As a fellow spoonie, I really appreciate your diligence in finding solutions for yourself and distilling the information you learned to help others along a similar journey.
So many of us experience chronic illness, I think your Newsletter topic is incredibly important and a valuable niche.
The trauma of Covid-19 and a healthcare system in decline has also worsened our mental health in times of financial pressures.
Never before has our healthcare system or support system been so challenged. With aging populations, comorbidities, Long-Covid (4 million out of the labor force now with that), obesity, deaths of despair, opiod crisis - we are in tough.
Yes, I would agree, we will likely see the continual rise in levels of chronic illness is likely to only accelerate, in the aftermath of covid, and furthered if the upcoming energy and food crises as bad as some are predicting.
one of the things with Parkinson's is there is no definitive test, just a symptomatic diagnosis, which means, what?? mostly nothing I think. you have this set of symptoms and therefore you have a disease. Maybe, maybe not,
There is a smell test being developed - dogs and some people can apparently smell PD - but my worry is that is going to define PD, even it the smell isn't there for all people with PD, or is sometimes there for people who don't have it. And they have little idea what causes the smell. But yes that is the conclusion we have come to before - diagnosis labels are just human inventions, like constellations, ways to group symptoms. Our approach is to forget these labels and to look at each symptom and try to get to root causes. For example, does this symptom get worse when you are stressed - if so it probably has to do with natural survival instincts, and stress reduction approaches will help a lot. ps I started this substack because my main website is for people with pd, but I had things to say which translated much more broadly.
good plan
Excellent Article! Thank you for the reminders!
Thank you!
I particularly appreciated this final note: “develop our sense of having a right to be, the knowledge that we are enough as we are, and that we have no points to prove;” – – I’ll be working on that one!
Gary, I believe in on at outward curve after a lifetime of chronic low level grief and depression. Your list here is so affirming. Aside from a couple of technical actions (such as regarding fascia), I can now identify how I’ve integrated so many of these into my life over the last decade in particular, since I first began to realise there was a major issue. Thank you again for your work here.
I think they are quite universal arrival places for those who are healing journey. I'm talking ton Visceral Adventure about making these into a follow up video to the Cumulative Impacts movie https://garysharpe.substack.com/p/cumulative-impacts-the-movie
(First sentence should say “I believe I’m on”)
Gary, after following your posts since 2018 I just want to say how in awe I am if your dedication to exploring your situation in such a rounded and curious way. Seeing you grow through your articles - has been truly heartening, it’s visible in your face, you use of language, the way your articles are presented, your writing - hats off to you. Having been an avid reader around my passion for my profession, first a physio, then craniosacral therapist, evolving into a movement/hands on/somatic exploration fusion of a thing, I would say your ability to assimilate and re-present information in such an articulate and useful way is a gift. Just wanted to say… :)
Wow! Thankyou. Very encouraging and thrilling to read. Would it be ok to share this (anonymized or not) on the "feedback" section of my website? https://www.outthinkingparkinsons.com/insights
Great post, many thanks...just a wee addendum, prof Gary...it seems to this ol'mechanic, surprisingly, that many Healers, as well as patients, often refer to their ills as 'MY'(insert ailment)...geez, after a bakers dozen of m/bike crashes,ladder /roofing falls plus rArt,pleurisy,3rd deg burns,CO poisonings,paralysis,etc, it has never entered this addled brain to OWN all these accidental/ karmic stupidities.Y'all can go a lot farther by travelling light,eh? cheers
Good and important point!
Hi Gary , I somehow have stumbled across your post today and have read so much. I feel it's just what I've needed . I'm suffering from chronic disease and suffering with dreadful pain and symptoms . I am quite fed up with the typical responses I've had over the last few years in trying to diagnose what exactly it is I have. In the meantime it has dramatically become much worse and never thought my immune system would be in the mess it's in. I agree with so much you've written.
I do believe that so much of my pain and whatever it is I've developed is from trauma, constant stress and so much dissapointment for far too long.
So many diseases similar to one another and like Parkinson's it is I feel really only a guess . I hope I can find out the answer to whatever it is I have but in the meantime will follow and try and put in practice much of what you have suggested that can help chronic disease I have so much enjoyed reading it all. Thanks so much , Chrissie
Hi Chrissie, and welcome. So sorry to hear you are suffering. I sure hope there is something in what I've shared that you can find to bring at least some relief and peace. I think just understanding ourselves and the fact it is not just a question of "what is wrong with me?" but also "what happened to me?" is a useful start in itself?
As a fellow spoonie, I really appreciate your diligence in finding solutions for yourself and distilling the information you learned to help others along a similar journey.
Thank you, I am appreciating your articles too. [I had to look up the term spoonie, not heard that before].
I'd love to collaborate and maybe record a podcast together sometime!
I like that you are doing this. Just read this one post and I am impressed.
Thank you!
A story about Parkingson's that you might find meaningful. 💜 https://shorturl.at/yfIce
Yes there is also now a video version too https://garysharpe.substack.com/p/the-antidote-to-suffering-in-the