Provided by Colleen in Upstate NY - Again my thanks to Colleen...
Information for YOU ( the MS Patient) to provide to others around you...
Having MS means many things change, and a lot of them are invisible.
Unlike having cancer or being hurt in an accident, most people do not understand even a little about MS and it's effects on us; and many of those who think they do
know are actually misinformed. In the spirit of informing those who wish to understand...
These are the things that I would like you to understand about me before you judge me:
Please understand that being sick does not
mean I'm no longer a human being. I have to spend most of my day in considerable pain and exhaustion and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, and work, and my family and friends, and most of the time I'd still like to hear you talk about yours too.
=============================================
Information for YOU ( the MS Patient) to provide to others around you...
Having MS means many things change, and a lot of them are invisible.
Unlike having cancer or being hurt in an accident, most people do not understand even a little about MS and it's effects on us; and many of those who think they do
know are actually misinformed. In the spirit of informing those who wish to understand...
These are the things that I would like you to understand about me before you judge me:
Please understand that being sick does not
mean I'm no longer a human being. I have to spend most of my day in considerable pain and exhaustion and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, and work, and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Correlations of Perceived Deficits Questionnaire of Multiple Sclerosis Quality of Life Inventory with Beck Depression Inventory and neuropsychological tests
Source: http://www.rehab.research.va.gov/jour/06/43/1/lovera.html
Jesus Lovera, MD, MSPH;1-2* Bridget Bagert, MD, MPH;3 Kyle H. Smoot, MD;2 Katherine Wild, PhD;2 Rachel Frank, BA;2 Kristin Bogardus, BS;2 Barry S. Oken, MD;2 Ruth H. Whitham, MD;1-2 Dennis N. Bourdette, MD1-2
1Multiple Sclerosis Center of Excellence West, Portland Department of Veterans Affairs (VA) Medical Center,
Portland, OR; 2Department of Neurology, Oregon Health & Science University School of Medicine, Portland, OR; 3Department of Environmental Health, Harvard School of Public Health, Cambridge, MA
INTRODUCTION
Patients with multiple sclerosis (MS) can experience deterioration in their quality of life (QOL) in physical, cognitive, and emotional domains. Instruments that measure the impact of MS in health-related QOL have been developed to capture the impact of the disease on other domains besides physical disability. The prevalence of cognitive dysfunction in people with MS has been estimated to be between 45 and 65 percent [1-2].
Cognitive impairment in people with MS is associated with decreased employment and social interactions [3].
Instruments for measuring QOL in MS should include useful scales that measure the impact of cognitive impairment. The MS QOL Inventory (MSQLI) is a modular MS-specific health-related QOL instrument consisting of a widely used generic measure, the 36-item short form Medical Outcomes Study Health Status Questionnaire that is supplemented by nine symptom-specific measures [4].
=============================================Source: http://www.rehab.research.va.gov/jour/06/43/1/lovera.html
Jesus Lovera, MD, MSPH;1-2* Bridget Bagert, MD, MPH;3 Kyle H. Smoot, MD;2 Katherine Wild, PhD;2 Rachel Frank, BA;2 Kristin Bogardus, BS;2 Barry S. Oken, MD;2 Ruth H. Whitham, MD;1-2 Dennis N. Bourdette, MD1-2
1Multiple Sclerosis Center of Excellence West, Portland Department of Veterans Affairs (VA) Medical Center,
Portland, OR; 2Department of Neurology, Oregon Health & Science University School of Medicine, Portland, OR; 3Department of Environmental Health, Harvard School of Public Health, Cambridge, MA
INTRODUCTION
Patients with multiple sclerosis (MS) can experience deterioration in their quality of life (QOL) in physical, cognitive, and emotional domains. Instruments that measure the impact of MS in health-related QOL have been developed to capture the impact of the disease on other domains besides physical disability. The prevalence of cognitive dysfunction in people with MS has been estimated to be between 45 and 65 percent [1-2].
Cognitive impairment in people with MS is associated with decreased employment and social interactions [3].
Instruments for measuring QOL in MS should include useful scales that measure the impact of cognitive impairment. The MS QOL Inventory (MSQLI) is a modular MS-specific health-related QOL instrument consisting of a widely used generic measure, the 36-item short form Medical Outcomes Study Health Status Questionnaire that is supplemented by nine symptom-specific measures [4].
February 19, '09: Interesting Tid Bits of Information (not MS Related)
Interesting Tid Bits of Information provided by our own Shmoozin' with Susan
Some interesting information I thought I'd share that was sent in my Prevention Magazine email........
What Causes Goose Bumps? (I found this interesting)
Goose bumps (scientific name: piloerection) pop up when you're cold or afraid. A tiny muscle at the base of each body hair contracts; together, they appear as naked bumps on the flesh. They made sense eons ago, when humans still had a natural "fur coat." Back then, fluffing your ruff would warm the body by trapping an insulating layer of air between the hairs. And standing your hair on end was intimidating to predators or enemies (picture a cat facing off with a dog). Evolution has since stripped humans of their pelts. Now goose bumps are, of course, no medical issue. If you're uncomfortable showing off your vestigial physiognomy (boy that was a big name!), dress warmly, place yourself in calm environments, and avoid horror flicks.
=============================================Some interesting information I thought I'd share that was sent in my Prevention Magazine email........
What Causes Goose Bumps? (I found this interesting)
Goose bumps (scientific name: piloerection) pop up when you're cold or afraid. A tiny muscle at the base of each body hair contracts; together, they appear as naked bumps on the flesh. They made sense eons ago, when humans still had a natural "fur coat." Back then, fluffing your ruff would warm the body by trapping an insulating layer of air between the hairs. And standing your hair on end was intimidating to predators or enemies (picture a cat facing off with a dog). Evolution has since stripped humans of their pelts. Now goose bumps are, of course, no medical issue. If you're uncomfortable showing off your vestigial physiognomy (boy that was a big name!), dress warmly, place yourself in calm environments, and avoid horror flicks.
January 12, '09: Living with Advanced MS
Living with Advanced Multiple Sclerosis
Multiple sclerosis is a progressive disease for which no cure has yet been found. Although we have treatments to manage the disease course, they are only partially effective, which means that some people’s MS will worsen in spite of everything they and their doctors do to try and prevent it.
Many people ask themselves “Why did this happen?” (Did I choose the wrong doctor or the wrong medication…did I follow the wrong diet or the wrong exercise program…did I get too stressed out at my job?). But the fact is, MS progresses because that is the natural course of the disease.
While researchers are working to identify new and better strategies to stop that progression, people whose MS has become more disabling—and their family members and friends—need information about how to manage the challenges they face.
Continue reading this article from the Originating source of the National MS Society
=============================================Multiple sclerosis is a progressive disease for which no cure has yet been found. Although we have treatments to manage the disease course, they are only partially effective, which means that some people’s MS will worsen in spite of everything they and their doctors do to try and prevent it.
Many people ask themselves “Why did this happen?” (Did I choose the wrong doctor or the wrong medication…did I follow the wrong diet or the wrong exercise program…did I get too stressed out at my job?). But the fact is, MS progresses because that is the natural course of the disease.
While researchers are working to identify new and better strategies to stop that progression, people whose MS has become more disabling—and their family members and friends—need information about how to manage the challenges they face.
Continue reading this article from the Originating source of the National MS Society
*******************
December 23, '08: Corpus callosum damage and cognitive dysfunction in benign MS
2008 Dec 9. [Epub ahead of print] - Pubmed
summary:The authors used MRI techniques to study an important white matter structure commonly affected in MS in people with a long disease duration and little physical disability. They found an association between damage to this structure and cognitive function
Mesaros S, Rocca MA, Riccitelli G, Pagani E, Rovaris M, Caputo D, Ghezzi A, Capra R, Bertolotto A, Comi G, Filippi M.
Neuroimaging Research Unit, Scientific Institute and University Ospedale San Raffaele, Milan.
=============================================
summary:The authors used MRI techniques to study an important white matter structure commonly affected in MS in people with a long disease duration and little physical disability. They found an association between damage to this structure and cognitive function
Mesaros S, Rocca MA, Riccitelli G, Pagani E, Rovaris M, Caputo D, Ghezzi A, Capra R, Bertolotto A, Comi G, Filippi M.
Neuroimaging Research Unit, Scientific Institute and University Ospedale San Raffaele, Milan.
December 10, 2008
Help the Obama Administration Frame Comprehensive
Health Care Reform More Info
As the Obama Administration and the 111th Congress prepare to convene, we have an early opportunity to make an impact on the discussion around comprehensive health care reform.
President-elect Barack Obama recently sent out a call to action for all Americans. The incoming Administration wants you to engage your family and friends in a dialogue about comprehensive health care reform.
=============================================Help the Obama Administration Frame Comprehensive
Health Care Reform More Info
As the Obama Administration and the 111th Congress prepare to convene, we have an early opportunity to make an impact on the discussion around comprehensive health care reform.
President-elect Barack Obama recently sent out a call to action for all Americans. The incoming Administration wants you to engage your family and friends in a dialogue about comprehensive health care reform.
November 24, '08: MS Related : "Study Shows the Shocking Cost"
Study Shows Shocking Cost of MS
Monday November 24, 10:08 am ET
Source: Multiple Sclerosis Society-UK
Yahoo Finance
LONDON, November 24 /PRNewswire/ -- A study of people living with the devastating effects of multiple sclerosis (MS) has shown the true economic cost of living with the incurable, life-long condition.
The independent research is one of the largest ever studies into the financial impact of MS and has revealed that the cost of being diagnosed with MS is on average nearly GBP17,000 per person. Care provided informally by families accounts for more than 70% of this.
( GBP = British Pound Sterling)
GBP17,000 (currently) = $ 25,479.51
Convert Pounds Sterling (GBP) and United States Dollars (USD ...
=============================================Monday November 24, 10:08 am ET
Source: Multiple Sclerosis Society-UK
Yahoo Finance
LONDON, November 24 /PRNewswire/ -- A study of people living with the devastating effects of multiple sclerosis (MS) has shown the true economic cost of living with the incurable, life-long condition.
The independent research is one of the largest ever studies into the financial impact of MS and has revealed that the cost of being diagnosed with MS is on average nearly GBP17,000 per person. Care provided informally by families accounts for more than 70% of this.
( GBP = British Pound Sterling)
GBP17,000 (currently) = $ 25,479.51
Convert Pounds Sterling (GBP) and United States Dollars (USD ...
***************************
November 17, '08: MS Related: Forget the Diet Coke Myth
Diet Coke and MS: The Multiple Sclerosis Foundation has debunked the notion that Diet Coke can cause or worsen multiple sclerosis symptoms. Its verdict is backed up by the Food and Drug Administration and other organizations. The notion that Diet Coke can cause neurological disorders may be based on an observation years ago by the Centers for Disease Control and Prevention, which found that aspartame seemed linked to mild neurological problems.
this information was obtained from: Chron.com
=============================================this information was obtained from: Chron.com
November 13, '08: MS Related and NOT - Rigged Clinical Trials: Drug Studies Favor the Pharmaceutical Companies
Here Is something that MIGHT
( or Might NOT )
Shock You
Global Research, November 7, 2008
Orthomolecular Medicine News Service - 2008-11-05
If you have often suspected that drug studies are rigged by the pharmaceutical manufacturer, you are right. "Drug studies skewed toward study sponsors," reported The Washington Post. (1) "Industry-funded research often favors patent-holders, study finds." Specifically, the American Journal of Psychiatry study authors said, "In 90% of the studies, the reported overall outcome was in favor of the sponsor's drug... On the basis of these contrasting findings in head-to-head trials, it appears that whichever company sponsors the trial produces the better antipsychotic drug." (2)
Click, to: CONTINUE READING
October 22, '08: Avigen's lead drug fails mid-stage trial, shares sink
Reuters
Tue Oct 21, 2008 12:31pm EDT
By Suzannah Benjamin
BANGALORE, Oct 21 (Reuters) - Avigen Inc., said its lead drug for the treatment of spasticity associated with multiple sclerosis failed to meet the main goal of a mid-stage trial, sending its shares plunging 84 percent to an all-time low.
Two analysts said Avigen may discontinue development of the drug AV650, or tolperisone, which was the most important value driver for the biopharmaceutical company that investors focused on.
"We are somewhat surprised with the outcome of the multiple sclerosis trial, given the prior clinical data and the fact that AV650 is already a marketed product in Europe as an antispasticity agent," Oppenheimer & Co analyst Brian Abrahams said.
=============================================
Tue Oct 21, 2008 12:31pm EDT
By Suzannah Benjamin
BANGALORE, Oct 21 (Reuters) - Avigen Inc., said its lead drug for the treatment of spasticity associated with multiple sclerosis failed to meet the main goal of a mid-stage trial, sending its shares plunging 84 percent to an all-time low.
Two analysts said Avigen may discontinue development of the drug AV650, or tolperisone, which was the most important value driver for the biopharmaceutical company that investors focused on.
"We are somewhat surprised with the outcome of the multiple sclerosis trial, given the prior clinical data and the fact that AV650 is already a marketed product in Europe as an antispasticity agent," Oppenheimer & Co analyst Brian Abrahams said.
