Mything the point: Some Thoughts on Living Well with PD

[slapdasch4]

This sort of thing is a tough sell in the sense that people running the show at PD websites are worried that submissions that aren't predictably positive or upbeat in tone might upset regular readers. In some cases, fundraising' may come into play. As noted in the piece, I'm not trying to stir up a hornet's nest; my point here is merely to bring some of the discussion of these issues back to the center.

"Mything' the Point: Some Thoughts on 'Living Well With Parkinson’s'

Any survey of publications, conference and discussion topics related to Parkinson’s disease is sure to include numerous references to the importance of maintaining a positive attitude in the struggle to coexist with this condition. The case for optimism often comes under the rubric of “Living Well with Parkinson’s.”

The LWWP claque will tell you about the importance of assembling a comprehensive disease management team of health professionals to deal with your condition. It won’t tell you about folks who have gone 20 plus years without insurance and could never dream of paying the costs of a medical entourage.

The LWWP crowd will tell you about retirement and enjoying the wonders of nature, as for example, in a recent WWW posting i read, gushing about the beauty of sunsets in the Bahamas. It won’t tell you about someone with PD, forced to continue working somewhere in the Rust Belt, with the sky ‘looking as if it had been rubbed with a soiled eraser.”

The LWWP believers will enthuse about an athlete with PD who is planning to run 20 marathons in 20 different countries. They won’t tell you about some guy with gait and balance issues, who, on a good day, is barely able to drive himself to a PD exercise class.

The LWWP adherents will tell you about the need to communicate with family and friends in order not to become socially isolated. They won’t tell you about the caregivers, husbands, wives, relatives and friends whose reserves of patience, tolerance and love are laid to waste by the challenges of living with PD.

The LWWP faction will tout the wonders of cutting edge pharmacology and invasive procedures such as DBS. They won’t tell you about the risk of long term cognitive deterioration or the chance that your ability to speak or clearly articulate will go to hell in a hand basket.

The LWWP proponents will tell you a PD diagnosis is not a death sentence. What they won’t tell you is that it is a life sentence.

Assuming there are a few of you still with me, I acknowledge that the fare offered to this point is not to all tastes. There are those whose response will be along the lines of “i don’t think this helps,” “There are always going to be people who want to draw attention to themselves,” or “If you are determined to be miserable, then you can certainly expect to have to live a miserable existence.”

These kinds of reactions miss the point by a wide margin. To my mind this whole promotion of the idea “Living Well with Parkinson’s” is arrogant and condescending in the sense that if you are not “on board,” your attitude is automatically assumed to be negative, counterproductive and not worthy of inclusion within the parameters of arbitrarily established standards of how to think about Parkinson related issues.

My personal take on having PD is that getting it is a kind of cosmic joke and one way to deal with it is through the prism of a kind of lethargic, ironic humor. This attitude may not put me in the mainstream, but it strikes me as a completely legitimate philosophical framework from which to approach many of the challenges related to living with PD.

Furthermore, my stance has not prevented me from consistently volunteering for Parkinson’s research projects, maintaining a vigorous exercise regimen, serving on several advisory boards, and writing articles and giving presentations for purposes of Parkinson’s advocacy. It’s quite possible to pursue these ends without buying into the concept of “living well” with Parkinson’s; I do these things because that’s what there is to do, not out of any overarching sense that these activities contribute to a better quality of life.

“Living Well Well with Parkinson’s?” Get outta town!! In the interests of “keeping things real,” one might be better served by the notions of “getting by” or even “muddling through” in connection to this weasel-like condition.

[crewmanwhite]

Frankly, I don't want to "love well with PD". I chose to find out what had caused my symptoms, then found strategies to reverse those causes.

I now live well without Parkinson's.

See my story and research in "Rethinking Parkinson's Disease" - rethinkingparkinsons.com/

[park_bear in reply to crewmanwhite]

Hi John,

Thanks for commenting. I have put your book on order and look forward to reading it.

Similarly to your introductory remarks in the book, a couple of people who received benefit from cinnamon have written to me privately, saying that their neurologists either attributed the benefit to placebo effect or that the Parkinson's had been misdiagnosed. My report on cinnamon here: healthunlocked.com/cure-par...

– PB

[MBAnderson in reply to park_bear]

pb,

Hmmmm.

Speaking of LWWP syndrome, I am reading "Goodbye Parkinson's, Hello Life" (by Alex Kerten.) He declares we can dance away all of symptoms - if we also have the right attitude.

Hopefully, suffering thru such books builds neuroplasticity.

I, too, have bought his book and, likewise, look forward to reading it and will do so with an open mind, but I have to say in advance I am highly skeptical that 1) he offers anything we've never heard of and, 2) that he has (had) PD and has banished every symptoms completely "With the aid of Lifestyle changes (including food, supplements and exercise), Self-love, Laughter, Meditation, Homeopathy, Aqua Hydration Formulas, Bowen Therapy, Craniosacral Therapy, Flower Essences, Counselling, and Spiritual Development, (John was completely symptom-free by April 1998.)"

I have gotten to the point in my old age (76) and 12 years in that I now believe the best we can do is slow it down and that is not uncommon and be healthy in spite of it, but no one can completely reverse it, i.e., rid themselves of PD.

Why is it that in several pages about the book and while professing their motive is to help pwp all along, except to learn how to totally rid yourself of PD, you have to buy the book?

What do you suppose the mechanism of action is for 'Flower Essence?"

He must be doing something right to have fully recovered from stage IV PD, multiple system atrophy, stage 3 bowel cancer and a "widow maker" heart attack.

Marc

[park_bear in reply to MBAnderson]

In my experience you maintain a good balance between keeping an open mind and due skepticism, so the points you have made above are duly noted. I will reserve judgment in this matter until I have read the book.

[slapdasch4 in reply to park_bear]

I feel like there is a kind of "keep hope alive" aspect for many dealing with chronic conditons. A lot of life in general seems an exercise in discovering what you don't want or need and then moving on to the next possibility. Somehow it seems helpful just having the chance to try soothing different or new even if you are initially skeptical. These may not be particularly brilliant insights,but it's what Im thinking these days.

[MBAnderson in reply to park_bear]

I'm half way thru his book and have changed my mind. His research is excellent, he is precise and not repetitive - which is refreshing.

I'll write more later, but in a nut shell, it so far it is so far the best book on PD I've read. I especially appreciate his commentary on traditional doctors/western medicine.

I take him at his word that he is living symptom free, which for being diagnosed in '95 (27 years of progressing) is truly remarkable, but I've run across nothing yet in his regime that should cause any one else to believe they will get the same results. His success at reversing symptoms puts him as 1 out of several thousand.

How are you doing on his book?

[park_bear in reply to MBAnderson]

My copy was slow to arrive and only got here a few days ago. I am in the midst of reading something else at the moment, so I have not started it yet. Glad to see your report and I look forward to getting into it.

[MBAnderson in reply to park_bear]

First, I owe Mr. Coleman an apology for dismissing his book as another LWWP book that offered no meaningful solutions before having read it. Rethinking Parkinson's does offer meaningful therapies, specified, so much so I consider it a reference book, meaning it should be referred to repeatedly to get everything it has to offer. He has peaked my interest in detoxing and Bowen and has articulated a healthy perspective on how we might think about our illness.

If his recommendations were scrupulously followed, they would greatly improve one's health and perhaps some (more recently diagnosed) would also become symptom free.

However, while (with reservations) I believe he is symptom free, (which is astounding for being diagnosed 27 years ago,) surely, not everyone will be able to duplicate his success.

That said, it is an excellent book, well researched & worth reading by all pwp.

[HekateMoon in reply to crewmanwhite]

Wow, John! What a pleasure reading you here. I have read your book and implemented some of its advice( what i can afford) like i have an awesome and Kind Bowen therapist eating as healthy as possible and ongoing for years healing a very abusive and traumatic childhood...in addition when i can afford it aquas etc...i also meditate, do chikungLike slapdasch4 says there are limitations. Living alone in a foreign very humid place with no family (i didnt have one )on invalidity pension doesnt facilitate the task, however i keep going. My network is limited and still early days for me. Will i beat it like you did? You seem like an amazing healer. Thanks for your work and blessings from Ireland.

[JohnPepper]

Hi Slapdasch4

I generally agree with what you have said but, would like to add that if you are doing HIGH INTENSITY PHYSICAL EXERCISE as recommended by the results of the study done by The Mayo Clinic in 2019, where they proved that when you walk as fast as you can for one hour, every second day your brain produces enough GDNF to replace the missing GDNF, caused by PD. I have been doing this since 1994 and have lived almost symptom-free, all of that time. When I stop the walking, for other health reasons, my symptoms return. I am now 88 years old and still in charge of my symptoms.

[jeeves19 in reply to JohnPepper]

zzzzzzzzzzzzzzzz🛌🥱

[JohnPepper in reply to jeeves19]

Are you sleeping on the job?

[AndyMu72 in reply to JohnPepper]

Hi John. In your opinion, is fast walking more effective than running? I'm still running 2-3 times a week (though often fighting off the toe curls!). Do a bit of kick boxing and yoga too.

[Hikoi in reply to AndyMu72]

I don't know if JP is exercising a lot these days. I get the impression he has slowed down.

[CRMACK1948]

Waking up thismorning in a very wet grey Scotland to your pragmatic comments I had a wry chuckle to myself.The challenges of PD are incredibly diverse depending on where on the planet we live,and the health care that is ( or isn’t) available.My husband and are are at the “ rustbelt” end of the conditions you discribe,minimum input from the healthcare professionals,and limited finances to access other kinds of helpEnough of my moaning.The stuff that is free we make good use of,voice and movement exercises from utube,a cheap homemade light coronet copied from Redlightsonthebrain,and a daily stagger down the road in all weathers.Life isn’t perfect,but focussing on being a person who happens to have Parkinsons,rather than a Parkinsons sufferer,and taking one day at a time rather than imagine what is to come means that we are still able to be happy and reasonably contented and not an embarrassment or burden on friends and family.

I do really appreciate your setting out the realities of a vicious disease,but I just wanted to say there are all kinds of levels of dealing with it,and we have found that not having the finances to access the kinds of help we read of in this forum aren’t preventing us ( both in our 70s) from enjoying all that we can,

[slapdasch4 in reply to CRMACK1948]

I don't think you are "moaning" at all. It sounds as if you have a firm grip on the realities that confront you every day. Making due with what is available to you is a life skill that not all are capable of doing. All the best.

[MBAnderson in reply to CRMACK1948]

Good for you CRMACK.

[HekateMoon in reply to CRMACK1948]

I so identify with you! Im in the neighbouring island, whose heath system is a complete disaster...keep going. Good info out there and this site is a treasure.

[beehive23]

20 yrs with pd now in hospice for it. your points are correct.

imo. hang tough.

[Bolt_Upright in reply to beehive23]

It is always good to hear from you Beehive. Hang tough and have as much Pepsi as you like (I love Pepsi).

[beehive23 in reply to Bolt_Upright]

alive and kind of kicking hahaha....glad your responsive....its the best we can hope for i fear ..yeesh..