The National MS Society, Greater New England Chapter
presents
The African - American Experience with Multiple Sclerosis
A Day of Education & Family Activities
When: Saturday, June 5
Time: 10 a.m. - 2 p.m.
Where: Charles Street AME Church
551 Warren Street
Roxbury, MA 02121
FREE. Pre-registration is required. Lunch and activities provided.
Family members of all ages invited to attend. Limit 4 guests per registration.
African-Americans develop MS at half the rate of white Americans - one in 1,500 people, rather than one in 750. Evidence suggests that MS does not treat everyone equally and some recent studies seem to indicate that MS may take a more progressive course in African-Americans. Explore how MS affects the African-American community through informal discussions and activities for the entire family. Presentations include fatigue management, keeping cool, and staying active and healthy!
Meet other African-Americans with MS and empower yourself and your family to live well everyday with MS!
Register online now or call 1-800-344-4867! We hope to see you there!
The Invisible Symptoms of MS: Cognition, Pain & Fatigue
When: Saturday, June 5
Time: 9 a.m. - 3:30 p.m.
Where: The Shaw’s Center
1 Lexington Ave
Brockton, MA 02301
FREE. Pre-registration is required by June 1st. Continental breakfast and lunch provided.
Adult Family & friends are welcome. Limit 2 additional guests per registrant.
Dealing with the many symptoms of MS can be very difficult, but coping with the invisible symptoms, cognitive difficulties, pain, and fatigue, can create additional challenges such as:
* Why am I forgetting things? Why can’t I remember the word I want to say?”
Cognitive difficulties can be frustrating for both the person experiencing it and also for family members. Learn to understand and deal with this troubling symptom. Speaker: William Goodman, PsyD; Neurological Consultants, Bennington, VT
* But you look so well, are you really that tired?”
Fatigue is the #1 symptom reported by people with MS, getting others to understand this invisible symptom can be both frustrating and tiring! Speaker: Christine St. Laurent, RN, MSCN; former nurse coordinator at the MS Center at Sturdy Memorial Hospital, Attleboro, MA
* What is causing the pain I’m experiencing? Does MS cause pain? Is there any treatment for my pain?”
Pain is an invisible symptom, but a very real concern for many people with MS. Learn about the different types of pain, the causes, and treatments available. Speaker: Jay Rosenfeld, MD; Rehabilitation Hospital of the Cape & Islands, Sandwich, MA
This free day long conference addresses these questions & concerns while also providing an opportunity for peer networking for people with MS, adult family members and caregivers. Breakout sessions on “Coping with MS” for persons with MS and “Caregiver Concerns” for caregivers and family members will be held.
Register online now or call 1-800-344-4867!
Massachusetts Dept. of Conservation & Recreation Accessible Recreation Fair
When: Saturday, June 5
Time: 10 a.m. - 3 p.m.
Where: Artesani Park
Brighton, MA
The Department of Conservation and Recreation’s (DCR) Universal Access Program (UAP) will offer a free fun-filled day of celebrating Accessible Outdoor Recreation available for individuals, families and friends of people with disabilities. Activities will include a cycling fair with an assortment of accessible cycles available for use; adaptive recreational activities, including hiking, park quest, letterboxing, face painting, interpretive programs; a D.J.; snacks and more! Join DCR rain or shine and enjoy the accessible recreation fair, cool off in the spray pool and use the playground located in park as well. Enjoy the camaraderie while learning about DCR’s inclusive, accessible programs and resources available to people of all abilities around the state. This is THE PLACE to come FIND OUT ABOUT accessible recreation programs offered by multiple organizations in the Boston area and beyond. Pre-registration is highly recommended, especially for use of equipment. To register, call Gigi at 617-626-1294 or Marcy at 413-545-5758
* The Greater New England Chapter of the National Multiple Sclerosis Society is informing you of this opportunity as a service to our members. We neither review nor certify the content of independent programs. It is our policy to maintain the confidentiality of our mailing lists. If you choose to participate in this program, you will be registering with the Massachusetts Dept. of Conservation & Recreation.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
MS stops people from moving. The National MS Society exists to make sure it doesn’t. We are a collective of passionate individuals, moving together to create a world free of MS. JOIN THE MOVEMENT
Early and ongoing treatment with an FDA-approved therapy can make a difference for people with multiple sclerosis. Learn about your options by talking to your health care professional and contacting the National MS Society at www.nationalmssociety.org or 1-800-344-4867.
National Multiple Sclerosis Society | 733 Third Avenue | New York, NY | 10017
Thursday, May 27, 2010
Wednesday, May 26, 2010
"Is it easy to diagnose MS?"
Diagnosing multiple sclerosis is anything but easy. There is no specific test for multiple sclerosis and, anyway, it is not even certain that it is only one disease. To an extent, getting an MS diagnosis (dx) is a process of eliminating all other possibilities. Typically, people who have finally been diagnosed with definite MS will have been through several diagnostic stages which I shall try to deal with in this section. This process is often drawn out over months or years. This can be a very unsettling and frightening period for the PwMS - the uncertainty can be very difficult to deal with. Inevitably, I draw heavily on personal experience here - the fears, insecurities and other emotions that I went through may not apply to everyone and I certainly don't intend to shoehorn everyone with MS into my own stereotype.
"So what are the stages in getting a diagnosis?"
Usually, the first thing anyone does when they notice strange neurological symptoms is to go to see their family doctor. "It's nothing to worry about" - "It's a pinched nerve" - "It's the side effect of a virus" - "It's all in your head" - "It's a temporary side effect of a migraine" - "It's Conversion Disorder". These and many other labels are used to dismiss what are very real symptoms. I've even heard of, "You're an alcoholic in denial", being used to dismiss one poor woman suffering with MS vertigo.
Provided that they aren't dismissive of the patient, I don't blame the Primary Care Physicians - MS is a very varied disease with a score of different manifestations. It is common medical practice to assume the most likely outcome rather than the more malign possibilities. Additionally, MS has a score of differential diagnoses (conditions that present with one of more of the same symptoms as MS). PCPs aren't neurologists and they can't be expected to perform neurological examinations with the same level of expertise as neurologists can, nor are they as skilled at interpreting them. This is understandable - a General Practitioner will usually have between zero and six patients with MS on their books and, even then, rely heavily on the patient's neurologist for diagnosis and treatment. I had four neurological examinations in two months - one by my General Practitioner, one by a casualty Senior House Officer and two by neurologists. The difference in skill level was immediately apparent and, although the PCPs detected the more obvious clinical symptoms, both neurologists were able to detect very many more subtle deficits.
"Is this a difficult time for the PwMS?"
Unfortunately, yes. The process of misdiagnosis causes a lot of anxiety. We know that something is wrong - often we fear a plethora of malignant outcomes, including MS, which we generally do not understand at all well at this point in time. We certainly don't need to be told that we are making it all up. I was terrified during this stage - more so than when I finally got a diagnosis and had something to understand and come to terms with.
During this phase, the PwMS may be referred to specialists in completely the wrong field or sent off for tests for completely different conditions. This just compounds the uncertainty. The majority of PwMS first present with relapsing/remitting MS and have often completely recovered from the presenting symptoms within as little as six weeks or less. I was worried about a number of possible outcomes but wanted there to be nothing the matter. Nobody wants to have multiple sclerosis. A combination of my health care professionals' denial and my own enabled me to disregard the disease for many years. Each relapse was entirely different in nature to those that had gone before. Each time I was terrified and each time I apparently recovered completely. During this period, I moved location frequently and was never seen by the same GP twice which must have prevented each from building up a case history. Often times, the PwMS will start to doubt their own perceptions and to believe that they are indeed a hypochondriac. I know I did - it didn't do too much for my state of mind but, in a way, I'm grateful for those years of false freedom from the disease.
"So what are the stages in getting a diagnosis?"
Usually, the first thing anyone does when they notice strange neurological symptoms is to go to see their family doctor. "It's nothing to worry about" - "It's a pinched nerve" - "It's the side effect of a virus" - "It's all in your head" - "It's a temporary side effect of a migraine" - "It's Conversion Disorder". These and many other labels are used to dismiss what are very real symptoms. I've even heard of, "You're an alcoholic in denial", being used to dismiss one poor woman suffering with MS vertigo.
Provided that they aren't dismissive of the patient, I don't blame the Primary Care Physicians - MS is a very varied disease with a score of different manifestations. It is common medical practice to assume the most likely outcome rather than the more malign possibilities. Additionally, MS has a score of differential diagnoses (conditions that present with one of more of the same symptoms as MS). PCPs aren't neurologists and they can't be expected to perform neurological examinations with the same level of expertise as neurologists can, nor are they as skilled at interpreting them. This is understandable - a General Practitioner will usually have between zero and six patients with MS on their books and, even then, rely heavily on the patient's neurologist for diagnosis and treatment. I had four neurological examinations in two months - one by my General Practitioner, one by a casualty Senior House Officer and two by neurologists. The difference in skill level was immediately apparent and, although the PCPs detected the more obvious clinical symptoms, both neurologists were able to detect very many more subtle deficits.
"Is this a difficult time for the PwMS?"
Unfortunately, yes. The process of misdiagnosis causes a lot of anxiety. We know that something is wrong - often we fear a plethora of malignant outcomes, including MS, which we generally do not understand at all well at this point in time. We certainly don't need to be told that we are making it all up. I was terrified during this stage - more so than when I finally got a diagnosis and had something to understand and come to terms with.
During this phase, the PwMS may be referred to specialists in completely the wrong field or sent off for tests for completely different conditions. This just compounds the uncertainty. The majority of PwMS first present with relapsing/remitting MS and have often completely recovered from the presenting symptoms within as little as six weeks or less. I was worried about a number of possible outcomes but wanted there to be nothing the matter. Nobody wants to have multiple sclerosis. A combination of my health care professionals' denial and my own enabled me to disregard the disease for many years. Each relapse was entirely different in nature to those that had gone before. Each time I was terrified and each time I apparently recovered completely. During this period, I moved location frequently and was never seen by the same GP twice which must have prevented each from building up a case history. Often times, the PwMS will start to doubt their own perceptions and to believe that they are indeed a hypochondriac. I know I did - it didn't do too much for my state of mind but, in a way, I'm grateful for those years of false freedom from the disease.
Tuesday, May 25, 2010
National MS Society URGENT!
The Greater New England Chapter’s Home LINKS program is in jeopardy!
For the first time in a decade, the Massachusetts Senate Ways and Means Committee has eliminated ALL Home LINKS language and funding. We must call and let them know that we object!
Please call the office of the Chairman of Senate Ways and Means at 617-722-1630 and read the following:
May I please speak with Senator Panagiotakos about taking away Home LINKS funding for Multiple Sclerosis.
(when you reach a person or voicemail, continue...)
My name is _________ and I live in_____, and (I, my mother/father/daughter/son ??) has/have MS.
You eliminated Home LINKS funding in 4513-1111. By doing that, we will not get the help we need so that we can safely stay in our homes. People with MS want to live independently, instead of becoming house-bound or needing the emergency room, hospitals, or a nursing home. Home LINKS is the only option we have. Cutting Home LINKS will not save money. People with MS pay taxes trusting that help is available when we need it most. Please put Home LINKS back in. Thank you!!!
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
For the first time in a decade, the Massachusetts Senate Ways and Means Committee has eliminated ALL Home LINKS language and funding. We must call and let them know that we object!
Please call the office of the Chairman of Senate Ways and Means at 617-722-1630 and read the following:
May I please speak with Senator Panagiotakos about taking away Home LINKS funding for Multiple Sclerosis.
(when you reach a person or voicemail, continue...)
My name is _________ and I live in_____, and (I, my mother/father/daughter/son ??) has/have MS.
You eliminated Home LINKS funding in 4513-1111. By doing that, we will not get the help we need so that we can safely stay in our homes. People with MS want to live independently, instead of becoming house-bound or needing the emergency room, hospitals, or a nursing home. Home LINKS is the only option we have. Cutting Home LINKS will not save money. People with MS pay taxes trusting that help is available when we need it most. Please put Home LINKS back in. Thank you!!!
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Monday, May 24, 2010
Join the Global Movement
Take Action!
World MS Day is this Wednesday, May 26th. MS societies throughout the world are banded together for World MS Day to raise awareness about multiple sclerosis (MS). To be part of the global movement to create a world free of MS and make an important impact locally, email your U.S. Senators and Representative today and urge them to support H.R. 4213. This legislation includes provisions important to people living with MS that help ensure access to necessary treatment and services.
More than 2 million people across the world live with MS. Over 400,000 people in the United States live with MS. Approximately 40% of people living with MS in the United States depend on public health insurance programs, like Medicare and Medicaid. H.R. 4213 will keep these programs strong by preventing an imminent, devastating 21.2% cut to doctors participating in Medicare. H.R. 4213 would instead increase rates for 2010 and 2011 and ensure no reductions to physicians through 2013.
H.R. 4213 will also continue assistance to state-run Medicaid programs. The recession has caused many states' Medicaid programs to be strained due to reduced revenues and increased demands for Medicaid services. This extension is necessary so that Medicaid programs can continue serving people living with disabilities and other important populations.
Take action for World MS Day. Email your Senators and Representative today and urge their support of H.R. 4213.
To keep future MS activism messages out of your junk folder, add the following address to your contacts or safe sender list: MSActionNetwork@nmss.org
World MS Day is this Wednesday, May 26th. MS societies throughout the world are banded together for World MS Day to raise awareness about multiple sclerosis (MS). To be part of the global movement to create a world free of MS and make an important impact locally, email your U.S. Senators and Representative today and urge them to support H.R. 4213. This legislation includes provisions important to people living with MS that help ensure access to necessary treatment and services.
More than 2 million people across the world live with MS. Over 400,000 people in the United States live with MS. Approximately 40% of people living with MS in the United States depend on public health insurance programs, like Medicare and Medicaid. H.R. 4213 will keep these programs strong by preventing an imminent, devastating 21.2% cut to doctors participating in Medicare. H.R. 4213 would instead increase rates for 2010 and 2011 and ensure no reductions to physicians through 2013.
H.R. 4213 will also continue assistance to state-run Medicaid programs. The recession has caused many states' Medicaid programs to be strained due to reduced revenues and increased demands for Medicaid services. This extension is necessary so that Medicaid programs can continue serving people living with disabilities and other important populations.
Take action for World MS Day. Email your Senators and Representative today and urge their support of H.R. 4213.
To keep future MS activism messages out of your junk folder, add the following address to your contacts or safe sender list: MSActionNetwork@nmss.org
Friday, May 14, 2010
Federal Focus - May 2010
Urge Congress to Extend Three Important Policies to Preserve Medicare and Medicaid Services
Congress is currently contemplating a means to extend three policies that are vitally important to the care of people living with MS-preventing the reduction in payments to doctors participating in Medicare, extending the Medicare therapy cap exceptions process and continuing assistance to states' Medicaid programs. Email your Member of Congress today and ask him/her to act swiftly to pass legislation to address these issues.
Approximately 40% of people living with MS depend on public health insurance programs, like Medicare and Medicaid. Therefore, it's important that Congress takes steps to assure that these programs remain viable and robust by ensuring that the number and quality of providers and services are maintained in both programs. Extending these three current policies is essential to protecting access to comprehensive care for people living with MS and other chronic diseases and disabilities. Take action by sending an email to your Senators and Representative today!
National Institutes of Health Approved New Stem Cell Lines
The National Institutes of Health (NIH) has approved nine new human embryonic stem cell lines for federally funded research, joining four others that had an earlier approval revoked after President Obama took office. The additions bring the number of stem cell lines to 64 now eligible to be used in research using federal dollars. An additional 100 lines are listed by NIH as under review.
Following this announcement by the NIH, MS researchers released an international consensus on the future of stem cell transplantation research for people with MS. These guidelines were developed by an international panel of MS experts and are expected to help encourage more coordinated global research efforts and potentially quicker patient access to stem cell clinical trials. The consensus statement is especially timely, since small-scale trials of stem cells, such as adult mesenchymal stem cells (from bone marrow and other bodily tissues), are already underway for the treatment of multiple sclerosis.
Additional background information and the Society's position on stem cell research can be found under the "MS Research" heading on this webpage.
To keep future MS activism messages out of your junk folder, add the following address to your contacts or safe sender list: MSActionNetwork@nmss.org
Congress is currently contemplating a means to extend three policies that are vitally important to the care of people living with MS-preventing the reduction in payments to doctors participating in Medicare, extending the Medicare therapy cap exceptions process and continuing assistance to states' Medicaid programs. Email your Member of Congress today and ask him/her to act swiftly to pass legislation to address these issues.
Approximately 40% of people living with MS depend on public health insurance programs, like Medicare and Medicaid. Therefore, it's important that Congress takes steps to assure that these programs remain viable and robust by ensuring that the number and quality of providers and services are maintained in both programs. Extending these three current policies is essential to protecting access to comprehensive care for people living with MS and other chronic diseases and disabilities. Take action by sending an email to your Senators and Representative today!
National Institutes of Health Approved New Stem Cell Lines
The National Institutes of Health (NIH) has approved nine new human embryonic stem cell lines for federally funded research, joining four others that had an earlier approval revoked after President Obama took office. The additions bring the number of stem cell lines to 64 now eligible to be used in research using federal dollars. An additional 100 lines are listed by NIH as under review.
Following this announcement by the NIH, MS researchers released an international consensus on the future of stem cell transplantation research for people with MS. These guidelines were developed by an international panel of MS experts and are expected to help encourage more coordinated global research efforts and potentially quicker patient access to stem cell clinical trials. The consensus statement is especially timely, since small-scale trials of stem cells, such as adult mesenchymal stem cells (from bone marrow and other bodily tissues), are already underway for the treatment of multiple sclerosis.
Additional background information and the Society's position on stem cell research can be found under the "MS Research" heading on this webpage.
To keep future MS activism messages out of your junk folder, add the following address to your contacts or safe sender list: MSActionNetwork@nmss.org
Tuesday, May 4, 2010
The National MS Society, Greater New England Chapter
Family Fun Days!
Two dates, two locations!
Free! Picnic style lunch provided and pre-registration is required.
MS is a family affair that affects you and your loved ones everyday. Meet other families with MS in a social and informal setting. Enjoy the day with outdoor games and family activities while connecting with other families affected by MS. Family members of all ages are welcome (4 guest maximum).
June 12, 2010 (Saturday)
Hopkinton State Park
Hopkinton, MA
Click here for more details & to register!
August 28, 2010 (Saturday)
Look Memorial Park
Florence/Northampton, MA
Click here for more details & to register!
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
msnewengland.org
Two dates, two locations!
Free! Picnic style lunch provided and pre-registration is required.
MS is a family affair that affects you and your loved ones everyday. Meet other families with MS in a social and informal setting. Enjoy the day with outdoor games and family activities while connecting with other families affected by MS. Family members of all ages are welcome (4 guest maximum).
June 12, 2010 (Saturday)
Hopkinton State Park
Hopkinton, MA
Click here for more details & to register!
August 28, 2010 (Saturday)
Look Memorial Park
Florence/Northampton, MA
Click here for more details & to register!
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
msnewengland.org
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About Me
- Steve
- North Grafton, Massachusetts, United States
- Well-educated, disabled at this point with Multiple Sclerosis. I am very glad that I was able to do the things that I have been able to do over the years. had to change the picture, this one's more realistic.