So, when I die one day, I want my brain and spinal cord sent off for research. I've been told that it's not too likely that folks would harvest any of my organs just like I can't give blood too becuase I have MS, so this is the next best alternative to give back some to my community of MS'ers. So, how does one go about this? I want to register myself somewhere, but where? Any have any leads in Canada? I just came across these fine folks in Cleaveland and it got me thinking. Does UBC have a program? Maybe I'll chat with my clinical trial folks next month about it.
Tips For College Students Managing A Chronic Disease
Tips For College Students Managing A Chronic Disease
Great article!
"(NAPSI)-College is an entirely new world for recent high school graduates. But for young people with a chronic disease, college presents even more unique challenges. Fortunately, there are ways they can manage their condition and enjoy their college experience. It's a lesson learned by Tiffany, a sophomore at Central State University in Ohio. Tiffany is a full-time, working student living with relapsing multiple sclerosis (MS). She attributes her ability to juggle it all and still have fun in the process to her positive spirit and ability to take charge of her health.
"It's not always easy, but if you're willing to make the necessary adjustments, living the life of a typical college student is completely doable. For me, taking my MS treatment is key, combined with getting plenty of rest and managing stress as much as possible," said Tiffany. "In my experience, it helps to have a 'go-to' person who can give you a hand if you aren't feeling up to attending class and need to get your assignments from your professors."
This sentiment is echoed by Vickie, who also has relapsing MS and is a master's student at Albertus Magnus College in Connecticut. To help manage their MS and stay focused on getting the most out of their college experiences, Vickie and Tiffany joined MS LifeLines®, a hands-on support network and educational community for people with MS and their families. This dynamic program, which features online, in-person and telephone services, includes resources such as:
- Ambassadors-Individuals living with relapsing MS who serve as resources to the MS community by providing guidance, support and empowerment about living well with MS;
- Registered, MS-certified nurses who are available to help people living with MS with education, training and support;
- Peer Connection program that matches people living with relapsing MS with program ambassadors to discuss issues facing them with someone who understands;
- Magazine featuring strategies for living well with MS; and
- Financial information and reimbursement services for those who qualify.
Vickie and Tiffany credit the program with helping them to get through many difficult times; now they both serve as student ambassadors for the program.
"Before joining this program, I didn't know anyone else with MS. I'm now involved with a peer chat program and have learned so much from people who have been living with this disease for a long time," said Vickie.
According to Sarah Batchelder, a nurse supervisor, "When you call MS LifeLines, you can take comfort in knowing that the person at the other end of the line is a good listener who is qualified to give you support to help navigate common challenges faced by people with MS."
Batchelder, along with Tiffany and Vickie, offer the following tips to other students trying to manage a chronic condition in college:
Be Proactive
- Meet with the campus health center in advance of the school year to inform them of your condition and find out what help is available.
- Get a referral from your hometown physician and interview campus doctors at orientation.
- Ask the school health center to keep a copy of your most recent medical records on file.
- If you feel comfortable, let select professors know about your condition so they will understand if you need to take breaks during class or reschedule a test.
Seek Support
- Seek out campus or community support groups to meet others who share your experiences.
- Consider reaching out to a local nonprofit organization such as the National Multiple Sclerosis Society to learn about available services.
Join Online Communities
- Find an online community to speak to others who identify with what you're going through and to access the latest research and information about your condition.
Learn More
For more information about relapsing MS and joining a network of support, visit www.MSLifeLines.com/college or call (877) 447-3243.
Vickie, a graduate student who has multiple sclerosis, helps other students who have MS manage their condition.
Bye Bye Epstein-Barr Virus
"(NAPSI)-College is an entirely new world for recent high school graduates. But for young people with a chronic disease, college presents even more unique challenges. Fortunately, there are ways they can manage their condition and enjoy their college experience. It's a lesson learned by Tiffany, a sophomore at Central State University in Ohio. Tiffany is a full-time, working student living with relapsing multiple sclerosis (MS). She attributes her ability to juggle it all and still have fun in the process to her positive spirit and ability to take charge of her health.
"It's not always easy, but if you're willing to make the necessary adjustments, living the life of a typical college student is completely doable. For me, taking my MS treatment is key, combined with getting plenty of rest and managing stress as much as possible," said Tiffany. "In my experience, it helps to have a 'go-to' person who can give you a hand if you aren't feeling up to attending class and need to get your assignments from your professors."
This sentiment is echoed by Vickie, who also has relapsing MS and is a master's student at Albertus Magnus College in Connecticut. To help manage their MS and stay focused on getting the most out of their college experiences, Vickie and Tiffany joined MS LifeLines®, a hands-on support network and educational community for people with MS and their families. This dynamic program, which features online, in-person and telephone services, includes resources such as:
- Ambassadors-Individuals living with relapsing MS who serve as resources to the MS community by providing guidance, support and empowerment about living well with MS;
- Registered, MS-certified nurses who are available to help people living with MS with education, training and support;
- Peer Connection program that matches people living with relapsing MS with program ambassadors to discuss issues facing them with someone who understands;
- Magazine featuring strategies for living well with MS; and
- Financial information and reimbursement services for those who qualify.
Vickie and Tiffany credit the program with helping them to get through many difficult times; now they both serve as student ambassadors for the program.
"Before joining this program, I didn't know anyone else with MS. I'm now involved with a peer chat program and have learned so much from people who have been living with this disease for a long time," said Vickie.
According to Sarah Batchelder, a nurse supervisor, "When you call MS LifeLines, you can take comfort in knowing that the person at the other end of the line is a good listener who is qualified to give you support to help navigate common challenges faced by people with MS."
Batchelder, along with Tiffany and Vickie, offer the following tips to other students trying to manage a chronic condition in college:
Be Proactive
- Meet with the campus health center in advance of the school year to inform them of your condition and find out what help is available.
- Get a referral from your hometown physician and interview campus doctors at orientation.
- Ask the school health center to keep a copy of your most recent medical records on file.
- If you feel comfortable, let select professors know about your condition so they will understand if you need to take breaks during class or reschedule a test.
Seek Support
- Seek out campus or community support groups to meet others who share your experiences.
- Consider reaching out to a local nonprofit organization such as the National Multiple Sclerosis Society to learn about available services.
Join Online Communities
- Find an online community to speak to others who identify with what you're going through and to access the latest research and information about your condition.
Learn More
For more information about relapsing MS and joining a network of support, visit www.MSLifeLines.com/college or call (877) 447-3243.
Vickie, a graduate student who has multiple sclerosis, helps other students who have MS manage their condition.
Bye Bye Epstein-Barr Virus
Great start I'd say. It might not be a so called "cure" for MS, but the less environmental factors that contribute to getting "it" the better!
"Researchers from the University of Queensland yesterday confirmed a link between the Epstein-Barr virus, which causes glandular fever and is carried by more than 90 per cent of the world's population, and multiple sclerosis, saying the vaccine, developed to combat glandular fever, could save thousands of lives.
But some doctors are cautious, warning that the vaccine has not been fully tested as a preventive for multiple sclerosis and does not take into account the influence of genetic and environmental factors which can also trigger the disease.
Previous studies have shown that people with a parent, child or sibling with multiple sclerosis are at a greater risk of contracting the disease themselves, and the further someone lives from the equator, the higher their risk, indicating that exposure to sunlight and vitamin D play a significant role.
"
Tuesday, November 18, 2008
There is no magic cure!
"Researchers from the University of Queensland yesterday confirmed a link between the Epstein-Barr virus, which causes glandular fever and is carried by more than 90 per cent of the world's population, and multiple sclerosis, saying the vaccine, developed to combat glandular fever, could save thousands of lives.
But some doctors are cautious, warning that the vaccine has not been fully tested as a preventive for multiple sclerosis and does not take into account the influence of genetic and environmental factors which can also trigger the disease.
Previous studies have shown that people with a parent, child or sibling with multiple sclerosis are at a greater risk of contracting the disease themselves, and the further someone lives from the equator, the higher their risk, indicating that exposure to sunlight and vitamin D play a significant role.
"
There is no magic cure!
I love that this has been put out there... to be aware that there really is no magic cure for MS. If there was, the whole world would know about it! Duh.
"According to them, many untested therapies being advertised on the Internet involve high costs, and do not work.
The experts say that such therapies are based on “unreliable” evidence.
Sense About Science says that people desperate for a cure are being targeted by hundreds of online advertisers.
The charity says that most online adverts and chat-room conversations testify to the “incredible” benefits of new medicines and treatments, often selling the empty promise of curing the incurable.
While some offer stem cell treatments for brain disorders for tens of thousands of pounds, others sell cures for multiple sclerosis and cancers.
However, the evidence backing the efficacy of such therapies is often unreliable, the experts say.
They insist that there should be tighter regulations to reduce unfounded claims.
“It can be tempting to believe personal stories of miracle cures, but only by using tried and tested methods can we move forward and provide people with Parkinson’s with the best available advice and treatments,” the BBC quoted Dr. Kieran Breen, director of research at the Parkinson’s Disease Society, as saying.
Lib Dem MP Phil Willis, chairman of the Innovation, Universities, Science and Skills Select Committee, said that it would be the “cruellest deception” for a patient with chronic illness if he/she was promised a cure on the basis of “empty hope not evidence”.
“This makes them particularly vulnerable to treatments that are supported only by anecdote and rumour,” said Ian Douglas, who has multiple sclerosis.
Sense About Science, the Multiple Sclerosis Society, Motor Neurone Disease Association, Alzheimer’s Society, and Parkinson’s Disease Society have now taken out a new guide to help patients recognise bogus treatments.
The new guidline is called I’ve got nothing to lose by trying it.
Hazel Thornton, a patient advocate who acts as a liaison between patients and healthcare providers, said that the guide would help people “bring a critical eye and a questioning mind to what they read and hear”. (ANI)
Wednesday, November 12, 2008
Exciting!
"According to them, many untested therapies being advertised on the Internet involve high costs, and do not work.
The experts say that such therapies are based on “unreliable” evidence.
Sense About Science says that people desperate for a cure are being targeted by hundreds of online advertisers.
The charity says that most online adverts and chat-room conversations testify to the “incredible” benefits of new medicines and treatments, often selling the empty promise of curing the incurable.
While some offer stem cell treatments for brain disorders for tens of thousands of pounds, others sell cures for multiple sclerosis and cancers.
However, the evidence backing the efficacy of such therapies is often unreliable, the experts say.
They insist that there should be tighter regulations to reduce unfounded claims.
“It can be tempting to believe personal stories of miracle cures, but only by using tried and tested methods can we move forward and provide people with Parkinson’s with the best available advice and treatments,” the BBC quoted Dr. Kieran Breen, director of research at the Parkinson’s Disease Society, as saying.
Lib Dem MP Phil Willis, chairman of the Innovation, Universities, Science and Skills Select Committee, said that it would be the “cruellest deception” for a patient with chronic illness if he/she was promised a cure on the basis of “empty hope not evidence”.
“This makes them particularly vulnerable to treatments that are supported only by anecdote and rumour,” said Ian Douglas, who has multiple sclerosis.
Sense About Science, the Multiple Sclerosis Society, Motor Neurone Disease Association, Alzheimer’s Society, and Parkinson’s Disease Society have now taken out a new guide to help patients recognise bogus treatments.
The new guidline is called I’ve got nothing to lose by trying it.
Hazel Thornton, a patient advocate who acts as a liaison between patients and healthcare providers, said that the guide would help people “bring a critical eye and a questioning mind to what they read and hear”. (ANI)
Exciting!
I just became an Aunt for the first time! Yay for Beckham's safe and sound arrival!
Thursday, November 6, 2008
A little more predictable?
A little more predictable?
Hmmm.. so would you want to know the course your disease will take? Hmmm.... I have trouble answering that question. A part of me likes not knowing where my disease will go because I can look at that with a positive light. Hmmm... Research like this could get us better therpies for the life time course of the disease though.
"MRI scans obtained from patients with MS are being used to develop measures and techniques that can accurately measure the visible and hidden damage to the brain, especially in gray matter areas and can more accurately predict the course of the disease," says Bakshi.
As a result of the findings, MRI-based measurement of gray matter damage may be used as a surrogate marker of disease progression. Physicians may therefore be able to more accurately identify patients at risk for developing this progressive disease.
MS has been traditionally viewed as a disease affecting the white matter of the brain, where messages are transferred between the brains gray matter sections, which control the processing of information. While prior research has shown that the brain's gray matter is also affected, studies detailing its effects have been limited. In addition, current therapies for MS are incomplete, raising the need to better understand disease mechanisms and the biomarkers of disease progression. If excessive iron in gray matter contributes to damage, this would open a new avenue for developing better therapies."
Excitotoxins not good for MS'ers
"MRI scans obtained from patients with MS are being used to develop measures and techniques that can accurately measure the visible and hidden damage to the brain, especially in gray matter areas and can more accurately predict the course of the disease," says Bakshi.
As a result of the findings, MRI-based measurement of gray matter damage may be used as a surrogate marker of disease progression. Physicians may therefore be able to more accurately identify patients at risk for developing this progressive disease.
MS has been traditionally viewed as a disease affecting the white matter of the brain, where messages are transferred between the brains gray matter sections, which control the processing of information. While prior research has shown that the brain's gray matter is also affected, studies detailing its effects have been limited. In addition, current therapies for MS are incomplete, raising the need to better understand disease mechanisms and the biomarkers of disease progression. If excessive iron in gray matter contributes to damage, this would open a new avenue for developing better therapies."
Excitotoxins not good for MS'ers
No more diet pepsi! Darn!
"There’s an ingredient in our food that scientists are beginning to suspect could be a cause of auto-immune disorders such as multiple sclerosis and Grave’s disease.
Excitotoxins – amino acids that, quite literally, excite the nervous system, and cause neurological damage – may be a bigger culprit than anyone has suspected, and often they’re a hidden ingredient in the food we eat.
The two most common excitotoxins are the artificial sweeteners monosodium glutamate (MSG) and aspartame, but they are also hidden behind ingredients such as hydrolyzed proteins, hydrolyzed oat flour, sodium caseinate, calcium caseinate and yeast extract. Soybean extract are also rich in glutamate.
Researchers such as neurosurgeon Russell Blaylock and others have suspected for a long time that excitotoxins can cause auto-immune disease, and their concerns have recently been supported by a study from the Albert Einstein College of Medicine in New York.
**UPDATE** Hmmm... maybe I can still have Diet Pepsi!
3. 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.
Tuesday, November 4, 2008
On the topic of sleep...
"There’s an ingredient in our food that scientists are beginning to suspect could be a cause of auto-immune disorders such as multiple sclerosis and Grave’s disease.
Excitotoxins – amino acids that, quite literally, excite the nervous system, and cause neurological damage – may be a bigger culprit than anyone has suspected, and often they’re a hidden ingredient in the food we eat.
The two most common excitotoxins are the artificial sweeteners monosodium glutamate (MSG) and aspartame, but they are also hidden behind ingredients such as hydrolyzed proteins, hydrolyzed oat flour, sodium caseinate, calcium caseinate and yeast extract. Soybean extract are also rich in glutamate.
Researchers such as neurosurgeon Russell Blaylock and others have suspected for a long time that excitotoxins can cause auto-immune disease, and their concerns have recently been supported by a study from the Albert Einstein College of Medicine in New York.
**UPDATE** Hmmm... maybe I can still have Diet Pepsi!
3. 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.
On the topic of sleep...
I've been working on the special log the sleep clinic sent me that has to be a recording of two weeks of your sleep patterns. Every morning I fill in how many times I woke up, for how long and how many hours of sleep did I get etc. So it looks like I don't usually get more than 5 hours a night. Ick. I've always wondered if I have MS fatigue or simply sleep deprivation!? Yikes. So anyways, I came across this today in my web travels... I wonder if the sleep clinic is up to snuff on sleep stuff with M Spatients. Hmm...
"Summary
Researchers from the University of Washington in Seattle report on the presence of sleep disorders among people with MS, finding them to be more frequent than in the general population. Mult Scler. 2008 Jul 16. [Epub ahead of print]
Details
Sleep disturbance in multiple sclerosis has received little research attention despite the potential influence it may have on disease impact and overall quality of life. The objective of the study was to estimate the prevalence of sleep disorders in a large community sample of individuals with multiple sclerosis. A cross-sectional self-report survey of 1063 persons with multiple sclerosis was used. . Sleep was assessed using the Women's Health Initiative Insomnia Rating Scale and Medical Outcomes Study Sleep measure.
The prevalence of sleep problems in multiple sclerosis is significantly higher than in the general population or other chronic diseases and may affect women with multiple sclerosis more than men.
Sleep disturbance should routinely be evaluated in patients with multiple sclerosis and new interventions developed.
"Summary
Researchers from the University of Washington in Seattle report on the presence of sleep disorders among people with MS, finding them to be more frequent than in the general population. Mult Scler. 2008 Jul 16. [Epub ahead of print]
Details
Sleep disturbance in multiple sclerosis has received little research attention despite the potential influence it may have on disease impact and overall quality of life. The objective of the study was to estimate the prevalence of sleep disorders in a large community sample of individuals with multiple sclerosis. A cross-sectional self-report survey of 1063 persons with multiple sclerosis was used. . Sleep was assessed using the Women's Health Initiative Insomnia Rating Scale and Medical Outcomes Study Sleep measure.
The prevalence of sleep problems in multiple sclerosis is significantly higher than in the general population or other chronic diseases and may affect women with multiple sclerosis more than men.
Sleep disturbance should routinely be evaluated in patients with multiple sclerosis and new interventions developed.