Wheelchair? Hearing Aids? Yes. ‘Disabled’? No Way.

 Friends have commented to me that they don't consider me disabled. It will never be in my mindset.

Wheelchair? Hearing Aids? Yes. ‘Disabled’? No Way.

International Classification of Functioning, Disability and Health-based rehabilitation program promotes activity and participation of post-stroke patients

Survivors don't just want perceived improvements, they want actual improvements. Did you measure actual?

International Classification of Functioning, Disability and Health-based rehabilitation program promotes activity and participation of post-stroke patients

Ngai-Kiu Mabel Wong^{1, 2} Mike Kwun-Ting Cheung³ Yuk-Mun Ng³ Huan-Ling Yuan¹ Bess Yin-Hung Lam⁴ Siu Ngor Fu¹ Chetwyn Che Hin Chan^5*

• ¹Department of Rehabilitation Sciences, Faculty of Health and Social Sciences, Hong Kong Polytechnic University, Hong Kong, SAR China
• ²Department of Psychology, The Education University of Hong Kong, Hong Kong, SAR China
• ³The Hong Kong Society for Rehabilitation (HKSR), Hong Kong, SAR China
• ⁴Department of Counselling and Psychology, Faculty of Social Sciences, Hong Kong Shue Yan University, Hong Kong, SAR China
• ⁵The Education University of Hong Kong, Hong Kong, SAR China

The final, formatted version of the article will be published soon.

The International Classification of Functioning, Disability, and Health (ICF) model has been applied in post-stroke rehabilitation, yet limited studies explored its clinical application on enhancing patients' Activity and Participation (ICF-A&P) level.Purpose: This study gathered evidence of the effects of an ICF-based post-stroke rehabilitation program (ICF-PSRP) in enhancing community reintegration in terms of ICF-A&P of post-stroke patients.Methods: Fifty-two post-stroke patients completed an 8-to-12-week multidisciplinary ICF-PSRP after setting personal treatment goals in an outpatient community rehabilitation center. Intake and pre-discharge assessments were administered for primary outcomes of Body function (ICF-BF; e.g., muscle strength) and ICF-A&P (e.g., mobility), and secondary outcomes of perceived improvements in ability (e.g., goal attainment and quality of life).

Results: There were significantly higher levels in the ICF-BF and ICF-A&P domains, except cognitive function under the ICF-BF. Improvements in the primary outcomes predicted corresponding secondary outcomes. Firstly, expressive and receptive functions (ICP-BF) were mediated by the everyday language (ICF-A&P) which predicted patients' satisfaction with the language-related quality of life. Secondly, upper extremity function (ICP-BF) was mediated by the lower extremity mobility (ICF-A&P) predicting work and productivity-related quality of life. Content analyses showed that combined ICF-BF and ICF-A&P contents throughout the ICF-PSRP contributed to the positive treatment effects.The ICF-PSRP was effective in promoting body function, and activity and participation levels of post-stroke patients. Positive treatment effects are characterized by goal-setting process, cross-domain content design, and community-setting delivery.

Keywords: Goal-setting process1, multidisciplinary approach2, community reintegration3, resuming life roles4, stroke rehabilitation5

Received: 16 Jun 2023; Accepted: 12 Oct 2023.

Copyright: © 2023 Wong, Cheung, Ng, Yuan, Lam, Fu and Chan. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

* Correspondence: Prof. Chetwyn Che Hin Chan, The Education University of Hong Kong, Tai Po, Hong Kong, SAR China

Doctors Overwhelmingly Harbor Negative Views Of Those With Disabilities, Study Finds

 Is this your doctor? Or doesn't your doctor have to think about this because they get all their stroke patients 100% recovered?

Doctors Overwhelmingly Harbor Negative Views Of Those With Disabilities, Study Finds

The vast majority of doctors across the nation believe that people with significant disabilities have worse quality of life than others, according to a first-of-its-kind study.

Researchers surveyed 714 physicians practicing in various specialties and locations on their feelings about patients with disabilities. More than 82% reported that such individuals experience subpar quality of life compared to people without disabilities.

“That physicians have negative attitudes about patients with disability wasn’t surprising,” said Lisa I. Iezzoni, lead author of the study published this month in the journal Health Affairs and a health care policy researcher at Harvard Medical School and Massachusetts General Hospital. “But the magnitude of physicians’ stigmatizing views was very disturbing.”

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Only about 40% of doctors surveyed felt confident that they could provide the same quality of care to patients with disabilities that they provide to others, the study found.

Meanwhile, just 56% “strongly agreed” that they welcomed people with disabilities at their offices even though the Americans with Disabilities Act requires equal access to health care.

Female doctors working at academic medical centers were most likely to be welcoming toward patients with disabilities, the study found.

“We wouldn’t expect most physicians to say that racial or ethnic minorities have a lower quality of life, yet four-fifths of physicians made that pronouncement about people with disabilities. That shows the erroneous assumptions and a lack of understanding of the lives of people with disability on the part of physicians,” Iezzoni said.

The researchers said their findings highlight questions about access and quality of care.

“Our results clearly raise concern about the ability of the health care system to ensure equitable care for people with disability,” said Eric G. Campbell of the University of Colorado Anschutz Medical Campus who worked on the study.

The issue of equal access to health care for people with disabilities has come to the fore in recent times as the COVID-19 pandemic has strained hospital capacity, forcing questions about care rationing. The U.S. Department of Health and Human Services’ Office for Civil Rights issued a bulletin last spring warning states and health care providers not to discriminate against people with disabilities. And, the agency subsequently reached agreements with multiple states to make changes to their crisis standards of care guidelines in response to complaints about disability discrimination.

Those behind the new study said it’s important to add training about disabilities to medical education, something which is currently lacking at most schools. The researchers indicated that they plan to further study how doctors’ perceptions about disabilities are affecting disparities in health care.

 

Disability Lingers More than a Decade After Stroke

You mean you blithering idiots didn't know this before? Spasticity has NO cure, so the 30% of survivors that get this will never recover.
My disability hasn't gotten worse but hasn't gotten better either, spasticity and fatigue still suck. It has been 11 years now. 
https://www.medpagetoday.com/Cardiology/Strokes/68718?

But trajectory of increasing disability not as steep after MI

• by Nicole Lou, Contributing Writer, MedPage Today October 23, 2017

The increase in disability after a stroke is no one-off event, as researchers found a hastening in the deterioration of functional status lasting more than 10 years after the event.
Around the time of stroke, patients experienced an increase in disability of 0.88 points on a 12-point scale (95% CI 0.57-1.20), whereas those who had an MI gained 0.20 points (95% CI 0.06-0.35), according to Mandip Dhamoon, MD, DrPH, of the Icahn School of Medicine at Mount Sinai in New York City, and colleagues.
The slow and steady annual increase in disability more than tripled after stroke (0.06 points per year before versus 0.15 additional points per year after), speeding up worsening of functional status for many patients. MI patients, on the other hand, saw no ramp-up in their disability trajectory after their event (0.04 points per year versus 0.02 additional points per year), they wrote online in JAMA Neurology.
"Stroke is traditionally seen as a discrete, monophasic event, and functional status has been assumed to stabilize following the 3- to 6-month recovery period after stroke, unless recurrent events occur. However, we present evidence that a single ischemic stroke continues to be associated with a gradual increase in disability over the long-term after stroke," Dhamoon's group said.
"Several lines of evidence support the paradigm proposed here of progressive brain dysfunction caused by cerebrovascular injury. First, stroke is caused by conditions, including vascular risk factors and inflammation, that may have an ongoing and cumulative effect on vessel and neuronal function, including small vessels in the case of lacunar stroke and carotid arteries in the case of large-artery strokes. In addition to causing recurrent strokes, vascular risk factors cause subclinical or covert brain injury manifest as infarcts and leukoaraiosis that may reduce functional status over the long term."
A stroke's long-term adverse effects leading to accelerated functional decline may be treatable, the authors suggested.
"We showed that participants who eventually have a stroke do not have a higher slope of increasing disability before stroke than do those who do not eventually have a stroke," they also noted.
For the analysis, the investigators pulled files from the Cardiovascular Health Study. Included were Medicare-eligible individuals who expected to reside the same area for at least 3 years at the time of enrollment in the 1989-1993 period (n=5,888; mean age 72.8; 42.4% men). They excluded those who needed a wheelchair and those getting hospice care, radiotherapy, or chemotherapy.
Longitudinal follow-up averaged more than 13 years.
Disability as measured on a 12-point scale evaluating a patient's ability to perform 12 daily activities: walking around home, getting out of bed, eating, dressing, bathing, using the toilet, heavy housework, light housework, shopping, preparing meals, paying bills, and using the telephone. This definition of disability tasks are so low level they should be discarded. Most people have much higher demands like working, running, swimming, biking that need to be recovered back. The bar is set way too low. I expect 100% recovery to all previous tasks. Get there. 

Dhamoon and co-authors disclosed no relevant relationships with industry.

• Primary Source

  JAMA Neurology

  Source Reference: Dhamoon MS, et al "Disability trajectories before and after stroke and myocardial infarction: the Cardiovascular Health Study" JAMA Neurol 2017; DOI:10.1001/jamaneurol.2017.2802.

Progressive intervention strategy for the gait of sub-acute stroke patient using the international classification of functioning, disability, and health tool

You can see the ICF model here. Totally subjective. Just when the hell will stroke patients have objective damage diagnosis? Until then you can't map interventions to damage and actually create stroke protocols because you don't have a defined starting point to assign protocols. 

Access the ICF Checklist

Progressive intervention strategy for the gait of sub-acute stroke patient using the international classification of functioning, disability, and health tool

NeuroRehabilitation , Volume 40(4) , Pgs. 473-481.

NARIC Accession Number: J76607.  What's this?
ISSN: 1053-8135.
Author(s): Kang, Tae-Woo; Cynn, Heon-Seock.
Publication Year: 2017.
Number of Pages: 9.
Abstract: Study identified the processes through which stroke patients are assessed and treated using the International Classification of Functioning, Disability, and Health (ICF) model. The patient was a 65-year-old female diagnosed with right cerebral artery infarction with left hemiparesis. Progressive interventions were applied, such as those aiming at sitting and standing for the first two weeks, gait intervention for the third and fourth weeks, and those aiming at sitting from a standing position for the fifth and sixth weeks. The ICF model provides rehabilitation experts with a framework that enables them to accurately identify and understand their patients’ problems. The ICF model helps the experts understand not only their patients’ body structure, function, activity, and participation, but also their problems related to personal and environmental factors. The experts could efficiently make decisions and provide optimum treatment at clinics using the ICF.
Descriptor Terms: AMBULATION, CLASSIFICATION SYSTEMS, CLINICAL MANAGEMENT, INTERVENTION, MOBILITY TRAINING, PHYSICAL THERAPY, POSTURE, STROKE.


Can this document be ordered through NARIC's document delivery service*?: Y.

Citation: Kang, Tae-Woo, Cynn, Heon-Seock. (2017). Progressive intervention strategy for the gait of sub-acute stroke patient using the international classification of functioning, disability, and health tool.  NeuroRehabilitation , 40(4), Pgs. 473-481. Retrieved 10/11/2017, from REHABDATA database.

Lifestyle Factors May Affect How Long Individuals Live Free of Disability

Well shit, I've been disabled now for 11 years and since I can see NO hope for solving my spasticity I will be disabled for the rest of my life, about 33 more years
http://www.alphagalileo.org/ViewItem.aspx?ItemId=178564&CultureCode=en

01 September 2017 Wiley

New research published in the Journal of the American Geriatrics Society indicates that a healthy lifestyle may help reduce the duration of an individual’s disabled period near the end of life.
In the community-based study of 5248 older adults recruited at an average age of 73 and followed for 25 years, the average number of disabled years was approximately 2.9 for men and 4.5 for women. Multiple lifestyle factors were significantly associated with years of life and years of able life. Greater distances walked and better-quality diet were associated with a relative compression of the disabled period. Obesity was associated with a relative expansion of the disabled period. Smoking was associated with a shorter life and fewer years of able life.
“We discovered that by improving lifestyle, we can postpone death, but even more so, we can postpone disability—in fact, it turns out that we’re compressing that disabled end-of-life period to a shorter timeframe,” said Dr. Anne Newman, senior author of the study. “This clearly demonstrates the value of investing in a healthy lifestyle.”
September is Healthy Aging Month. 
http://wiley.newshq.businesswire.com/press-release/journal-american-geriatrics-society/lifestyle-factors-may-affect-how-long-individuals-

• Full bibliographic informationMini E. Jacob, MD, PhD, Laura M. Yee, PhD, Paula H. Diehr, PhD, Alice M. Arnold, PhD, Stephen M. Thielke, MD, MPH, Paulo H. M. Chaves, MD, PhD, Liana Del Gobbo, PhD,
  Calvin Hirsch, MD, David Siscovick, MD, MPH and Anne B. Newman, MD, MPH. Can a Healthy Lifestyle Compress the Disabled Period in Older Adults? Journal of the American Geriatrics Society. DOI: 10.1111/jgs.14314.

How I fail at being disabled - TED talk

A TED talk. I'm also failing at this, because I don't consider myself disabled. I do anything I want to do regardless of the consequences.
https://www.ted.com/talks/susan_robinson_how_i_fail_at_being_disabled?

Aging With Disability for Midlife and Older Adults

You have a good chance after your stroke of needing to know this from your doctor on how to age with disability. 

Aging With Disability for Midlife and Older Adults 

Lois M. Verbrugge, Kenzie Latham, Philippa J. Clarke

First Published February 2, 2017 research-article

Abstract

This analysis brings “aging with disability” into middle and older ages. We study U.S. adults ages 51+ and ages 65+ with persistent disability (physical, household management, personal care; physical limitations, instrumental activities of daily living [IADLs], activities of daily living [ADLs]), using Health and Retirement Study data. Two complementary approaches are used to identify persons with persistent disability, one based directly on observed data and the other on latent classes. Both approaches show that persistent disability is more common for persons ages 65+ than ages 51+ and more common for physical limitations than IADLs and ADLs. People with persistent disability have social and health disadvantages compared to people with other longitudinal experiences. The analysis integrates two research avenues, aging with disability and disability trajectories. It gives empirical heft to government efforts to make aging with disability an age-free (all ages) rather than age-targeted (children and youths) perspective.

Dozens of references cited at the link.

Becoming Disabled Roughly one in five Americans lives with a disability. So where is our pride movement?

Our fucking failures of stroke associations should be leading such a movement but NO, all they do is the 'happy talk' version. Everything in stroke is just fine because we have all this prevention information. F.A.S.T. works and tPA is the miracle drug that magically reverses the stroke completely. Total lies.

http://www.nytimes.com/2016/08/21/opinion/sunday/becoming-disabled.html?emc=edit_th_20160821&nl=todaysheadlines&nlid=68991925&_r=0

Rosemarie Garland-Thomson

DISABILITY AUG. 19, 2016

Continue reading the main story Share This Page

Not long ago, a good friend of mine said something revealing to me: “I don’t think of you as disabled,” she confessed.

I knew exactly what she meant; I didn’t think of myself as disabled until a few decades ago, either, even though my two arms have been pretty significantly asymmetrical and different from most everybody else’s my whole life.

My friend’s comment was meant as a compliment, but followed a familiar logic — one that African-Americans have noted when their well-meaning white friends have tried to erase the complications of racial identity by saying, “I don’t think of you as black,” or when a man compliments a woman by saying that he thinks of her as “just one of the guys.”

More at link.

I'm sure my friends don't consider me disabled, I'm always the last one at parties, never say no to any adventure.

A Sea Change in Treating Heart Attacks

I wonder what this would be for stroke. I know stroke dropped from 3rd leading cause of death to 5th but I bet no one has analyzed the disability leftover from strokes. We may be saving lives from stroke but I bet we have barely moved the disability interventions. So go ask your hospital how good they are in preventing disability from stroke.
http://www.nytimes.com/2015/06/21/health/saving-heart-attack-victims-stat.html?_r=0
The death rate from coronary heart disease has dropped
38 percent in a decade. One reason is that hospitals
rich and poor have streamlined emergency treatment.

A radical experiment tried to make old people young again — and the results were astonishing

What if this same idea were applied to survivors? Rather than treat us as disabled we were treated as able normal persons. The bias on stroke is so entrenched that a lot of survivors I know report that they get comments, 'You don't look like you had a stroke'. The expectation is a droopy face and slurred speech.
http://finance.yahoo.com/news/radical-experiment-tried-old-people-204944551.html
The idea that getting old means getting frail and forgetful is so embedded in our cultural understanding of aging that it can be hard to tease apart medical realities and simple biases about the elderly. But Ellen Langer, a Harvard psychologist, has long wanted to try.

"Social conditions may foster what may erroneously appear to be necessary consequences of aging," Langer suggested in "Old Age: An Artifact?", a 1981 book chapter. So-called senior moments, after all, are not only the purview of seniors. "Young nonsenile people also are often forgetful."

How many of aging's negative effects could be manipulated and even erased by a psychological intervention?

In a radical experiment in 1979 that was featured in a New York Times Magazine cover story last fall, Langer and her grad students decided to take this question as far as they possibly could.

The results were extraordinary, but the research was also so unorthodox, so small, and so lacking in rigor that interpreting exactly what those results mean requires caution.

The 'counterclockwise' study

Imagine, for a moment, living in a nursing home. Your meals are in a cafeteria, your recreation is at scheduled times, and you're surrounded by other old people, mostly strangers. You've been robbed of your autonomy, maybe even your identity — the very things that make you you may be more tied to your past than your present, and nobody expects very much of you anymore.

No matter your age, this is not an environment in which most people thrive. But Langer thought that maybe, just maybe, if you could put people in a psychologically better setting — one they would associate with a better, younger version of themselves — their bodies might follow along. "Wherever you put the mind, you're necessarily putting the body," she explained many years later, on CBS This Morning.

More at link.

What is the easiest way to hide your physical disability?

This is a test, do not adjust your computer/smart phone. I failed it.
Colgate Ad
Pay close attention to each scene,  tricky Colgate has created a very ingenious advertising  campaign to promote their dental floss. 
  But....  before I explain to you the main detail of these images, I shall  let you observe them quietly on your own.

Alright.......... now that you've had  time to quietly observe the images......

*   In the first photograph, you  might have noticed that the lady has one finger too many on her  left hand.

 *   In the second  photograph, a phantom arm is floating behind.

 *   And in the third  photograph, the man has only one ear. 
  The  campaign attained its purpose. 
  It  proved that food debris on your teeth draws more attention than  any physical defect does.

How well did you do?? 
  You  failed the whole thing? 
  
  So  did I!!! 
  So now you know that no matter what  physical "defect" you might feel self-conscious about, just stick  a chunk of spinach between your front teeth and no one will notice  anything else about  you!

Disability vs Handicap vs. Impaired

I like this reply to one of these postings.

I know a few people in wheelchairs - they all hate the term disabled because it implies one is unable to function. Handicap is the word they prefer as it implies they can function but not without a challenge. The word was changed by people who are NOT in wheelchairs, do-gooders that should butt out.

You can check out an article in BMJ here;

Impairment, disability and handicap—old fashioned concepts?

 207 pages of definition from the WHO here; I'm sure your doctor has it memorized.

International Classification of Impairments, Disabilities, and Handicaps

I prefer handicap

Disability During the Last Two Years of Life

I'm going to have to become fully able so I can get disabled in the last 2 years of my life.  The NYT writeup of it here:
http://newoldage.blogs.nytimes.com/2013/07/08/high-disability-rates-persist-in-old-age/
The abstract here:
http://archinte.jamanetwork.com/article.aspx?articleid=1710125

ABSTRACT

ABSTRACT | METHODS | RESULTS | DISCUSSION | CONCLUSIONS | ARTICLE INFORMATION | REFERENCES

Importance  Whereas many persons at advanced ages live independently and are free of disability, we know little about how likely older people are to be disabled in the basic activities of daily living that are necessary for independent living as they enter the last years of life.
Objective  To determine national estimates of disability during the last 2 years of life.
Design  Prospective cohort study.
Setting  A nationally representative study of older adults in the United States.
Participants  Participants 50 years and older who died while enrolled in the Health and Retirement Study between 1995 and 2010. Each participant was interviewed once at a varying time point in the last 24 months of life. We used these interviews to calculate national estimates of the prevalence of disability across the 2 years prior to death. We modeled the prevalence of disability in the 2 years prior to death for groups defined by age at death and sex.
Main Outcomes and Measures  Disability was defined as need for help with at least 1 of the following activities of daily living: dressing, bathing, eating, transferring, walking across the room, and using the toilet.
Results  There were 8232 decedents (mean [SD] age at death, 79 [11] years; 52% women). The prevalence of disability increased from 28% (95% CI, 24%-31%) 2 years before death to 56% (95% CI, 52%-60%) in the last month of life. Those who died at the oldest ages were much more likely to have disability 2 years before death (ages 50-69 years, 14%; 70-79 years, 21%; 80-89 years, 32%; 90 years or more, 50%; P for trend, <.001). Disability was more common in women 2 years before death (32% [95% CI, 28%-36%]) than men (21% [95% CI, 18%-25%]; P < .001), even after adjustment for older age at death.
Conclusions and Relevance  Those who live to an older age are likely to be disabled, and thus in need of caregiving assistance, many months or years prior to death. Women have a substantially longer period of end-of-life disability than men.

National Disability Insurance Scheme (NDIS)

This will never happen in the US, they would rather we be reduced as part of the surplus population. Great for Australia though. My former Senator Hubert Humphrey had this saying,
"The moral test of government is how it treats those who are in the dawn of life . . . the children; those who are in the twilight of life . . . the elderly; and those who are in the shadow of life . . . the sick . . . the needy . . . and the disabled." Our people/government just dodged a bullet.
http://www.strokefoundation.com.au/blog/?p=2428
To date, the funding for people with a disability has been a cruel lottery
The amount of support and services for people with a disability, their families and carers has depended on where they live, what disability they have, and how they attained that disability. The NDIS aims to change all of that.
The Prime Minister released the Productivity Commission’s report on 10 August 2011 and all governments agreed with the recommendation to establish an NDIS. Rather than funding based on historical budget allocations, a funding pool will be
based on actuarial assessment of need.
It will recognise that disability is for a lifetime, and so it will take a lifelong approach to providing care and support. This means that assessment will look beyond the immediate need, and across the course of a person’s life. Taking a lifelong approach also means focusing on intensive early intervention, particularly for people where there is good evidence that it will substantially improve functioning or delay or lesson a decline in functioning.
Importantly, an NDIS will support choice for people with disability, their families and carers, and put people in control of the care and support they receive, based on need. An NDIS will ensure people are no longer “shut out” from opportunities and from independence by providing the appropriate and necessary supports that allow people with disability to reach their full potential.
It will nurture and sustain the support of families, carers and friendship groups – the very communities of support that are
critical to improving the lives of people with disability.
And it will include a comprehensive information and referral service, to help people with a disability who need access to mainstream, disability and community supports.
Latest updates
The first stage of a National Disability Insurance Scheme (NDIS) will become real for people with significant disabilities in South Australia, Tasmania, the ACT, the Hunter in NSW and the Barwon region of Victoria.
ACT: the timing for the launch of the NDIS may start in July 2013 or July 2014 and take a phased-in approach.
NSW: the first stage will begin in the Hunter region during 2013-14 for eligible residents from the local government areas of Newcastle, Lake Macquarie and Maitland.
Victoria: the first stage starts in the Barwon region on 1 July 2013 for eligible residents from the local government areas of the City of Greater Geelong, Surf Coast Shire, Borough of Queenscliffe and Colac-Otway Shire.
South Australia: From July 2013, an NDIS will be launched across the State, focusing on children aged 0-5 with significant and permanent disability. By 2014 the age limit will be extended to 13 years and in year 3 all children up to 14 years. A total of
around 4,800 children with significant and permanent disability are expected to benefit from the first stage of the scheme.
Tasmania: The first stage of National Disability Insurance Scheme in Tasmania will cover all eligible adolescents aged 15-24.
This approach has been chosen because it represents an opportunity to examine and improve the range of supports that need to be in place for young people with disability to ensure a smooth transition between school and work or higher education.
As more detailed information becomes available it will be posted on the NDIS website at www.ndis.gov.au.
This story was first seen in the Synapse bridge magazine Vol 8