Looking at the schedule, it seems to be a complete waste, nothing on any of the problems in stroke and the session 'How to achieve 45 minutes of therapy a day?' has got to be a joke. The goal should be 10-12 hours of therapy a day, including action observation, PROM, lucid dreaming, mirror box therapy, thermal stimulation, positive side effects of eating spicy foods. This is a perfect example of the incompetence in stroke.
https://www.stroke.org.uk/sites/default/files/uk_stroke_forum_preliminary_programme_as_of_08.08.16.pdf
Showing posts with label stroke forum. Show all posts
Showing posts with label stroke forum. Show all posts
Monday, August 8, 2016
Tuesday, April 12, 2016
Call for abstracts now open for UKSF 2016! - UK Stroke Forum
I suggest sending in a discussion of all the failure points in stroke. It will be rejected but somehow we have to start getting through their thick heads in stroke that absolutely everything in stroke is a failure.
http://dmtrk.net/1VKI-45OL9-DFKI5SFKDF/cr.aspx
http://dmtrk.net/1VKI-45OL9-DFKI5SFKDF/cr.aspx
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Thursday, April 7, 2016
Barriers and facilitators to staying in work after stroke: insight from an online forum
I used to post on this forum. And they use the term awareness again rather than suggesting that doctors and researchers prevent a lot of this disability by stopping the neuronal cascade of death.
Barriers and facilitators to staying in work after stroke: insight from an online forum
To cite: Balasooriya-Smeekens C, Bateman A,
Mant J, et al. Barriers and
facilitators to staying in work
after stroke: insight from
an online forum. BMJ Open
2016;6:e009974.
doi:10.1136/bmjopen-2015-
009974
ABSTRACT
Objective: To explore barriers and facilitators to staying in work following stroke.
Design: Qualitative analysis of posts regarding staying in work following stroke using the archives of an online forum for stroke survivors.
Participants: 60 stroke survivors (29 male, 23 female, 8 not stated; mean age at stroke 44 years)
who have returned to work, identified using terms ‘return to work’ and ‘back at work’.
Setting: Posts from UK stroke survivors and family members on Talkstroke, the forum of the Stroke
Association, between 2004 and 2011. Results: Stroke and transient ischaemic attack (TIA)
survivors reported residual impairments that for many had impact on work. Most impairments were ‘invisible’, including fatigue, problems with concentration, memory and personality changes. Participants described positive (eg, back at work being better than expected) and negative work experiences, including being at risk of losing the job because of stroke-related impairments. Barriers to successfully staying in work included lack of understanding of stroke—in particular
invisible impairments—of survivors, employers and general practitioners (GPs), and lack of support in terms of formal adjustments, and ‘feeling supported’.
Stroke survivors described how they developed their own coping strategies, and how workplace and
employer helped them to stay in work. Conclusions: Despite having been able to return to work after a stroke, people may still experience difficulties in staying in work and risking losing their job. There is a need to improve awareness, in particular of invisible stroke-related impairments, among stroke
survivors, work personnel and clinicians. This might be achieved through improved assessments of residual impairments in the workplace and in general practice. Future studies should investigate the effect of unrecognised fatigue and invisible impairments on staying in work following stroke, and explore the potential role for primary care in supporting stroke survivors who have returned to employment.
Friday, December 21, 2012
How etanercept is aiding stroke victims - Beware
A puff piece. Read everything, including links in this post before you go down this route. I don't trust this guy, no explanation of what the reason it works and by patenting it, no view into the method of recovery. And he will be able to stop other similar processes. If TNF is the reason, then it
should be easy to prove it works, measure TNF before and after the
shots. 5 minutes is ridiculous. But he'll get me to write about it,
providing more credulous patients for his operation.
Your stroke association should answer all these questions for you, but they won't.
http://www.sfgate.com/health/article/How-etanercept-is-aiding-stroke-victims-4128887.php
Here are some criticisms of earlier tries at using it for Alzheimers
Can enbrel cause brain lesions?
----------------------------------------------------------------------------------------------------------
From an Alzheimers forum below. Read it all.
My inclination, dear Cherie, is that this whole Enbrel thing is a scam. A way for some shady folks to con desperate people out of money. This sort of scam has been run over and over again. There are always plenty of gullible people out there. Sick people. Wanting cures for everything.
-----------------------------------------------------------------------------------------------------------------
This from a stroke forum is very telling; Notice the total lack of facts, If true this would be Nobel prize material.
http://www.healthboards.com/boards/stroke/855208-any-experience-perispinal-etanercept.html
I'd like to hear what you think of it after you've had the consultation. I took my husband, who had a stroke a few months ago, for a consultation, and we were disappointed that we were unable to see a doctor or anyone except a physician's assistant, who would not answer any questions at all(Extreme red flag - run away). Not sure what the purpose of the consult was, other than to tell us that if we wanted to see a doctor and get answer to questions it will cost $400. I've done quite a bit of research online
and continue to be dubious, in part because if it works as well as they claim, it would be all over the news. I'd love to believe it, but
---------------------------------------------------------------------------------------------------------
In one of my earlier posts on this someone anonymously replied with this comment;
Dean, this study, like most are solely authored by Dr.Edward Tobinick, Dermatologist, Institute of Laser Medicine (hair removal) who also are the same staff and home of Institute of Neurological Recovery which also went under the name Institute for Neurological Research. Tobinick began making claims in 1998 for the off-label use of the then new rhumatoid arthritis drug Etanercept (Enbrel). Tobinick promoted the use of this drug for disc-related conditions such as chronic back pain. Tobinick created his own 'patented' administration of the drug and called it DiskCure with claims of relief within minutes. Tobinick advertised the treatment and charged patients thousands of dollars for this 'unique' treatment. Tobinick self autored studies to support these claims. A few years later Tobinick played the same trick, this time it was Alzheimer's, and after a number of years of causing havoc, Tobinick would appear to have prioritized his new target STROKE and Traumatic Brain Injury. A new patient can expect to pay around $4500 for an intitial consultation and 1st injection. Etanercept (Enbrel) carries a Remember a vial of Etanercept (Enbrel) costs about $230. Just because it is expensive, does not mean it works. These scams cost some money to run. In recent years I have observed Australians being targetted successfully by Tobinick with his scams be they for Alzheimer's or STROKE etc. Here are a list of chronic conditions which Tobinick claims to treat.
Alzheimer’s Disease
Traumatic Brain Injury
Recovery after Stroke
Vascular Dementia
Frontotemporal Dementia
Primary Progressive Aphasia
Etanercept (Enbrel) carries a Boxed Warning
Challenging Tobinick's claims and practices feels like a gnat fighting on the back of an elephant, but maybe someday the past will catch up with Dr. Edward Lewis Tobinick, Dermatologist.
---------------------------------------------------------------------------
Here is the article pointing to the original research;
http://www.springer.com/about+springer/media/springer+select?SGWID=0-11001-6-1394543-0
Someone not involved with him needs to deconstruct the clinical trial to see if the data supports the conclusion.
should be easy to prove it works, measure TNF before and after the
shots. 5 minutes is ridiculous. But he'll get me to write about it,
providing more credulous patients for his operation.
Your stroke association should answer all these questions for you, but they won't.
http://www.sfgate.com/health/article/How-etanercept-is-aiding-stroke-victims-4128887.php
Here are some criticisms of earlier tries at using it for Alzheimers
Miracle Cure For Alzheimer's Disease?
------------------------------------------------------------------------------------------
Read all the answers on the next one.Can enbrel cause brain lesions?
----------------------------------------------------------------------------------------------------------
From an Alzheimers forum below. Read it all.
My inclination, dear Cherie, is that this whole Enbrel thing is a scam. A way for some shady folks to con desperate people out of money. This sort of scam has been run over and over again. There are always plenty of gullible people out there. Sick people. Wanting cures for everything.
-----------------------------------------------------------------------------------------------------------------
This from a stroke forum is very telling; Notice the total lack of facts, If true this would be Nobel prize material.
http://www.healthboards.com/boards/stroke/855208-any-experience-perispinal-etanercept.html
I'd like to hear what you think of it after you've had the consultation. I took my husband, who had a stroke a few months ago, for a consultation, and we were disappointed that we were unable to see a doctor or anyone except a physician's assistant, who would not answer any questions at all(Extreme red flag - run away). Not sure what the purpose of the consult was, other than to tell us that if we wanted to see a doctor and get answer to questions it will cost $400. I've done quite a bit of research online
and continue to be dubious, in part because if it works as well as they claim, it would be all over the news. I'd love to believe it, but ---------------------------------------------------------------------------------------------------------
In one of my earlier posts on this someone anonymously replied with this comment;
Dean, this study, like most are solely authored by Dr.Edward Tobinick, Dermatologist, Institute of Laser Medicine (hair removal) who also are the same staff and home of Institute of Neurological Recovery which also went under the name Institute for Neurological Research. Tobinick began making claims in 1998 for the off-label use of the then new rhumatoid arthritis drug Etanercept (Enbrel). Tobinick promoted the use of this drug for disc-related conditions such as chronic back pain. Tobinick created his own 'patented' administration of the drug and called it DiskCure with claims of relief within minutes. Tobinick advertised the treatment and charged patients thousands of dollars for this 'unique' treatment. Tobinick self autored studies to support these claims. A few years later Tobinick played the same trick, this time it was Alzheimer's, and after a number of years of causing havoc, Tobinick would appear to have prioritized his new target STROKE and Traumatic Brain Injury. A new patient can expect to pay around $4500 for an intitial consultation and 1st injection. Etanercept (Enbrel) carries a Remember a vial of Etanercept (Enbrel) costs about $230. Just because it is expensive, does not mean it works. These scams cost some money to run. In recent years I have observed Australians being targetted successfully by Tobinick with his scams be they for Alzheimer's or STROKE etc. Here are a list of chronic conditions which Tobinick claims to treat.
Alzheimer’s Disease
Traumatic Brain Injury
Recovery after Stroke
Vascular Dementia
Frontotemporal Dementia
Primary Progressive Aphasia
Etanercept (Enbrel) carries a Boxed Warning
rare cases of tuberculosis
risk of serious infections that may lead to hospitalization or death.
Challenging Tobinick's claims and practices feels like a gnat fighting on the back of an elephant, but maybe someday the past will catch up with Dr. Edward Lewis Tobinick, Dermatologist.
---------------------------------------------------------------------------
Here is the article pointing to the original research;
http://www.springer.com/about+springer/media/springer+select?SGWID=0-11001-6-1394543-0
Someone not involved with him needs to deconstruct the clinical trial to see if the data supports the conclusion.
Friday, November 5, 2010
getting blackballed from stroke forums
As soon as I got home from the hospital I started particpating in stroke
forums. First as a lurker, sometimes asking questions and eventually
becoming a prolific poster of answers. This behavior got me kicked off
of several forums for not following their rules.
Health Boards, ejected, No website with a forum is allowed to be posted
WEMove, warned because posting a link to a .com website.
MedHelp, warned because posted complete article, inluding attribution, copyright rules.
Stroke Survivors Advocacy Network, ejected, I think this was because I was emailing James Baranski - president of the NSA - describing how badly the NSA is missing its mission. That somehow got to the creator of the network and I was blackballed. 3 months later I tried logging in again and it worked, but my pictures and blogs were deleted, leaving my messages and some discussions intact. Well I won't be gracing them again.
I haven't given up. These are just minor irritations, they seem to have no concept of how easy it is to get an email address.
If they truly wanted to help survivors they would figure out a way to handle these minor problems. So I created this blog where I can spout off to my hearts content. So far the feedback has been good. I had saved most of my best postings and have recreated them here.
Health Boards, ejected, No website with a forum is allowed to be posted
WEMove, warned because posting a link to a .com website.
MedHelp, warned because posted complete article, inluding attribution, copyright rules.
Stroke Survivors Advocacy Network, ejected, I think this was because I was emailing James Baranski - president of the NSA - describing how badly the NSA is missing its mission. That somehow got to the creator of the network and I was blackballed. 3 months later I tried logging in again and it worked, but my pictures and blogs were deleted, leaving my messages and some discussions intact. Well I won't be gracing them again.
I haven't given up. These are just minor irritations, they seem to have no concept of how easy it is to get an email address.
If they truly wanted to help survivors they would figure out a way to handle these minor problems. So I created this blog where I can spout off to my hearts content. So far the feedback has been good. I had saved most of my best postings and have recreated them here.
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