What would you do to manage a health condition?

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BetteTheRed

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There are good and not so good auto mechanics, hairdressers, doctors.

Also, good and not so good for individual needs. Someone who can manage my thick mane of dreads/curls is not the same one who can make an almost-bald 89-year-old look like she's got some hair.
 

Luce NDs

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Professionally ... are there ups and downs in the abstract realm? Not for the absolutes ... they can't go that far!
 

Lastpointe

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As someone who used to work in hospitals I am surprised by the inclination to toss the medical model, or medicine

I never have heard doctors or nurses refer to someone as becoming normal. I do discuss normal values

Getting someone to a normal blood sugar or hg, or temperature. We have “normals” , everyone knows there is a range. Lab work when it returns has a range that hopefully your results fall into

Diseases are considered thing to cure. Not sure what else you would insist on calling them. And surely we want to treat disease

As to your holistic life, your wealth, or family structure or whatever, that doesn’t fall under medicine. I don’t think you toss out the medical model of health care, you simply recognize that other aspects of your life don’t fall under a doctors care

On the other hand I have seen too often with my kids and husband not starting from the correct spot. An injury. Not too bad, let’s get a physio assessment and to see physio. Now I have this other problem, let’s go see a nutritionist, now this is bothering me so I have seen a chiropractor......

Eventually I say “ could you please go see your GP, let’s start at the beginning and get someone who is looking at the big picture instead of one specialty at a time”


In my nursing work in NICUs we never talked about getting our babies to a normal situation if they had issues. Lots of kids with variations of genetic disease and traumatic issues like CP. it wasn’t to become normal. It was to attain the best outcome for the child and family. And to teach the parents to cope with the situations.

Now, perhaps after discharge parents want their kids to become “normal”. Perhaps that is what happened to Kimmio but we never spoke to parents of working to “normal. “ Normal isn’t a thing, there isn’t a normal,
 
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Nobody’s tossing out medicine. At least have enough respect to try to understand what the social model view is and how and why it’s been enshrined into law in Canada and the UK and other countries. You probably didn’t even read the article I posted...and you talk about what “probably happened to me” in the third person. No idea of the lived experience of systemic discrimination, none. Hint, it wouldn’t need to be obvious ... it can be subconscious because it’s systemic. Actually it’s adult experiences of discrimination that you are not willing to learn about. People with disabilities are always discussed in the context of kids and their parents...and often not talked to on the level of other adults. It’s disrespectful of adults who have a voice. Our experiences are not respected ... but your limited professional views are not more important than people with disabilities’ voices. A nurse defending the medical model without even knowing the social model - or the medical model by contrast - points to what needs addressing.
 
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Luce NDs

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What is the best state to attain when suffering from a brute urge towards naivete?

There is an old adage that it is best for the common folk not to know ... thus potentially we don't and enter a state of ankh ... inclusive of stress and strain ... an enigma of engineering ... and the stretch of lighter modes! The Cosmological Comedy ...

One must gather the little bits assigned as chitz ... to those brutes believing learning is crap ... thus cuts in education budgets for various schooling!
 
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What makes me so mad is the power the medical profession has. Tell me this, smart people...if it’s so important to have other aspects of care looked after by other professionals, why is that not done? It’s not covered by MSP. Not only that...but if a person with a disability who is deemed to be suffering enough they can be killed by having two qualified medical professionals sign off. They are not even required to consult with other types of helpers or refer them to community services, housing services, etc. before they kill somebody! All they need is a diagnosis and two subjective medical opinions about prognosis being foreseeable death (by what...by exposure, by homelessness, by deterioration in health from social isolation, by poverty.? A doctors job is not about assessing those things...but the doctor checks the boxes. Life is now cheap...but at least it’s costing the taxpayers less.
Can’t anyone see the damn problem?
 
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The social model looks at all of that, involves other professions as well as medicine and, most importantly, the person themselves. It just means medicine is not the “boss”, it’s one of many helpful services to a person.
 

Lastpointe

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Did I say medicine was The Boss! Honestly Kimmio, I cant discuss this with you. I get that you have a disability. I get that you are frustrated. I see that you feel that the assisted death laws shouldn’t apply to you

I get that you feel discriminated against. And I agree that while policies and laws have improved there is always more room for improvements

but you also have no apparent ability to understand that people disagree with you for lots of reasons

Yes I am a nurse so that helps me I suppose see medicine and how things work from a different perspective than you. But you don’t seem to see that as someone who is not in the medical field you have a bias against it
 
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I have a problem with its enormous power imbalance relative to the people it serves.


If you don’t understand the human rights and social models and why they need to be paramount (call them lenses through which to see the context) you are on the wrong side of international law that Canada signed onto several years ago. That’s actually a fact.

“The facts don’t care about your opinions.”
 
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Luce NDs

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Esque Apism may be the only way to copy what went through your mind in a professional area where only physical doctrine is accepted ... w/o a thought!

Some joining of the abstract and absolute may be helpful ... if only for an impulsive instant in the dark ... unspeakable if you didn't see what you were doing and being done to ... bifurcation is thus BIFF'd!
 

ChemGal

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Oh,I am not saying you need to figure it all out yourself. But, we do know the direction and then we have to find the right person/ program to help us. Like I find there is plenty of physio services that don’t help at all, because they are very limited in their thinking/ basic service- you actually need to find a good one. But, that’s the case with everything. There are good and not so good auto mechanics, hairdressers, doctors.
Unfortunately, there aren't really any guidelines to follow and I do have to figure it out on my own.
My allergist was still confused as to why my allergy was actually anaphylactic without coming up with a positive test (and in the past, decades ago, I had experienced it too, but it didn't stand out as obvious, I went red and itchy without any hives, could feel my heart rate and BP increase, and felt nauseated) and I tested negative before eating the food again and then getting retested. I think it's because I just avoided foods that I thought I was allergic to for so long. But still, things are funny like anchovies which I did eat in processed foods (sauces, dressings) suddenly popped up too on the tests, and was one of the highest values.
With exercise and physical activity in general, nothing there really to follow either. A few things that are really obvious like no boxing where I'm getting hit, or deep scuba diving with pressure changes, but even that wasn't directly told to me, just that injury & pressure changes can be triggers.
 
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CANADA'S MEDICAL ASSISTANCE IN DYING REGULATIONS FALL SHORT
Related Documents
April 15, 2016
Bill C-14 Does Not Go Far Enough to Protect Vulnerable Canadians
March 29, 2016
Vulnerable Persons Standard
January 28, 2016
"Right to Palliative Care, Vulnerability Assessment & Review Board Key Pillars of PAD/VE Regime" Says Council of Canadians with Disabilities (CCD)
More on Euthanasia/Assisted Suicide
FOR IMMEDIATE RELEASE
Tuesday, September 4th, 2018
Toronto, ON - The Canadian Association for Community Living (CACL) and the Council of Canadians with Disabilities (CCD) strongly call on the federal government to strengthen the monitoring system for medical assistance in dying (MAiD). As they stand, the just-published MAiD regulations to come into effect November 1, won’t safeguard people who could be vulnerable under the system. They don’t meet the objectives of the MAiD legislation for robust protections. More work needs to be done.
We agree with the Globe and Mail editorial that Canada should have at least as many safeguards as the Oregon system for assisted death, in place since the late 1990s, and which requires that physicians collect information on what is motivating a person to request medical assistance in dying. It is not enough for a health practitioner to report vaguely that a patient has “intolerable suffering.”
We need to understand what causes that suffering, and as we know from the data in Oregon, there are many reasons - fear of burden on family, financial worries, a sense of loss of autonomy or dignity. In many cases, these factors could be addressed by the health care system and greater access to supports for patients and their caregivers. In addition, providing for voluntary reporting by patients or their representatives would help safeguard the system. The opportunity for patients to self-report their experiences and circumstances, in a manner respectful of their autonomy and privacy, would be invaluable in understanding why Canadians at the end of their lives feel they must access this system.
"Canada needs to ensure that the MAiD regime lives up to its promise of fairness and compassion. Unfortunately, we are already hearing cases of persons like Roger Foley who are being offered medical assistance in dying before they are offered assistance in living," said Joy Bacon, President of CACL.
The regulations coming into effect November 1st do provide for collecting information on whether a patient has accessed or requested palliative care and disability supports. This kind of information is a good start in understanding why people request MAiD. However, the regulations do not explicitly obligate the government to report to Parliament and Canadians on this information. Without that, we simply don’t know whether people who needed and wanted this support, and didn’t get it, are having their lives terminated under MAiD.
Health Canada has acknowledged that it was encouraged in the consultation process to require medical practitioners to gather information on “socio-demographic” factors, like the Oregon system. However, it opted instead for merely collecting the patient’s postal code. We believe this information should be enhanced to give a fuller picture of the social determinants of health affecting the specific individuals requesting MAiD.
The government's newly minted regulations for MAiD monitoring, on balance, appear to meet the concerns of physicians who don’t want to spend too much time inquiring into why a person is experiencing intolerable suffering and asking to die. But they fail Canadians spectacularly.
“The government’s unwillingness to gather robust evidence on the causes of intolerable suffering increases the likelihood of Canadians continuing to experience anguish at end of life. Not only is the government failing to carry out its due diligence towards vulnerable, dying Canadians by ignoring this vital opportunity to learn about the causes of their intolerable suffering, it is overlooking critical information that could point the way to improvements in end of life care,” states Dr Heidi Janz, Chair of the CCD’s Ending-of-Life Ethics Committee.
Whether provided for in amended regulations or additional mechanisms, further safeguards are urgently needed to adequately monitor the practice of MAiD.
CACL is composed of ten provincial and three territorial associations, with over 400 local associations spread across the country and more than 40,000 members. CCD is a national human rights organization of people with disabilities working for an inclusive and accessible Canada.
- 30 -
Media Contact:
Agata Zieba, Senior Communications Officer, CACL, azieba@cacl.ca
Dr. Heidi Janz, Chair, End-of-life ethics committee, CCD, hjanz@ualberta.ca




What I would do to manage my condition is to demand that these changes be made. As you can see, the above social model perspective doesn’t dismiss the role of medicine, it demands better of medical practitioners’ understanding of disability.
 

Lastpointe

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I would like to see a lot more money time and research into palliative care and how to support people. Another sad story in CBC on line today of Quebec man who committed suicide after being turned down three times for assisted suicide. But no mention if any other supports could or should have been available to him
 

Lastpointe

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This is a terrible situation and makes no sense to me



I think a big problem we have is that there are strongly committed people on all sides

Those who want stricter rules, exceptions, changes, those who want looser rules and exceptions, those who want to extend the right to die to children........ It is a powder keg of feelings and everyone thinks their position is correct

Personally I want more support for people so they can live their lives as fullly as possible
 
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I think extending the rules to whoever is disadvantaged by living with a health condition - including children - in society is the aim of the death lobby, because having a “voluntary” program leading up to wartime - which far right wing factions of governments and oligarchy - are putting wheels in motion for , is a good smokescreen for societal neglect that a person has no choice over, to save money for the war chest, for the “patriots”. We see the march to those ends trying to happen around the world in a bunch of ways - and I think that’s the MO, and that needs to be fought vigorously. If it’s not true at this time it could too easily go there with the “perfect storm” - so it needs to be fought. There is no good reason for all these additional “inclusions” to the right to die, without there being some ulterior agenda in play. There is an agenda. If you believe there are no powers with ulterior motives in this game, around the world, I have some swampland in Florida for you to look at. In WW2 Germany they did it in secret. Today they have manipulated the naive public via the dying with dignity lobby propaganda, and the lawyers and powers working for private companies like Dignitas - into considering it a choice - with a couple of forms for a couple of doctors to check some boxes off on, and that’s the end of a human’s life. It’s really a stretch to call that “healthcare”. It’s actually offensive. It’s killing. Let’s not whitewash. If it’s not just for alleviating suffering at the end of life for someone soon to go...it’s killing. But the “health privacy” restrictions are preventing oversight and accountability as to who is asking for it, why, and whether the doctors’ judgment was sound. And if not, can or will that ever even be determined by anyone overseeing their decisions (after it’s too late because the patient is dead)?...maybe there are some consequences for malpractice but there are no criminal ones. They should never have been allowed to do this unless they are a specific type of professional specifically working in palliative care with terminally ill patients.


It’s appalling. People, wake up!
 
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Northwind

Still knitting. Walking the path to health.
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This is an interesting discussion, especially now that I'm involved in the health care system as a customer instead of a helper.

Some of these issues were things we discussed often in my profession. If I were to work in a hospital I would want to be able to speak and understand "medical model". I would not operate under that model in my profession. I would operate under the social model, which is the main reason my profession is even in hospitals. Sadly, some members of my profession do get co-opted by the medical model.

In my current experience, I value how the doctors and nurses are operating under the medical model. It helps them develop a treatment plan and to communicate it with me. They also seem to be recognizing that I am more than the diagnosis or the body part. I have been made aware of other supports i.e. social work or dietitian in the event I need them. I get the sense that if I didn't recognize a need for these services, someone would address it if they felt the need.

I have had to make certain changes. I am getting drugs put into me when normally I tend not to even take a Tylenol unless I really need it. I've had to follow direction and allow people to basically direct my life or examine me. I know this is all for good reason ultimately. I have to budget my energy, etc and find balance more than I normally would.

I wonder how I would have handled this if I were still living up north. I might very well consider moving closer to a major centre as a way to reduce travel and to be closer to a variety of supports.
 

Northwind

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I forgot about the goal of "normal". Is that really a thing these days? I've always thought it was more about achieving the highest possible functioning. That allows for difference. Kimmio's "normal" will be different from Chemgal's or a marathon runner.
 

Mrs.Anteater

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I forgot about the goal of "normal". Is that really a thing these days? I've always thought it was more about achieving the highest possible functioning. That allows for difference. Kimmio's "normal" will be different from Chemgal's or a marathon runner.
In OT best practice it has always been the goal to be client centred and explore for the clients goals- because without motivation, not much will be achieved anyway. The other principle is to aim at the client’s baseline function and if that is not possible, to assist in compensating.
 
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