March 2011Volume 29Issue 1 Covering Connecticut, Maine, Rhode Island & Vermont TABLE OF CONTENTS Snippets and Miscellany.......2-3 Notes from the Editor...........4 Letter to the Editor............5 News from MGFA National Office 6-7 Plasma Exchange/Plasmapheresis Issue 8-9 HHS.gov— —Managing Multiple Chronic Conditions ............................10-12 — Healthcare.Gov on Facebook. . .13 An MG Laugh....................13 MG Pals List................14-16 Support Group Issues...........17 Support Group Survey...........18 A Board Member is Walking......19 Agency for Healthcare Research and Quality- -Don't Let Medicines Cause Harm20-21 -What You Can Do to Prevent a Fall 22- 23 For Your Info— —Walking the Brain.............24 —Save the Antibiotics..........24 —Getting Protection Against Pneumonia ...............................24 —Less Embarrassment, More Exam. 25 —Strength Under Pressure.......25 —Health Advocates..............26 —Activity With Feeling.........26 Alarming Monitor Problems......2 CT Chapter Support Groups......2 About Our Neighbors-MA/NH......2 Donations......................3 Membership Renewal Form.......…3
Transcript
DESPERATELYSEEKING
SIGNSOF
SPRINGNo More
Snow. Please!
March 2011Volume 29Issue 1
Covering Connecticut, Maine, Rhode Island & VermontTABLE OF CONTENTS
Snippets and Miscellany...................................2-3Notes from the Editor...........................................4Letter to the Editor...............................................5News from MGFA National Office..................6-7Plasma Exchange/Plasmapheresis Issue...........8-9HHS.gov——Managing Multiple Chronic Conditions...10-12— Healthcare.Gov on Facebook........................13An MG Laugh....................................................13MG Pals List.................................................14-16Support Group Issues.........................................17Support Group Survey........................................18A Board Member is Walking.............................19Agency for Healthcare Research and Quality--Don't Let Medicines Cause Harm................20-21-What You Can Do to Prevent a Fall............22-23For Your Info——Walking the Brain..........................................24—Save the Antibiotics.......................................24—Getting Protection Against Pneumonia..........24—Less Embarrassment, More Exam..................25—Strength Under Pressure.................................25—Health Advocates...........................................26—Activity With Feeling.....................................26Alarming Monitor Problems..............................27CT Chapter Support Groups...............................28About Our Neighbors-MA/NH..........................29Donations...........................................................30Membership Renewal Form...........................…31
The Connecticut “Nutmeg” State Chapter routinely gets requests for information on physicians who are knowledgeable about Myasthenia Gravis. It is best when we can offer a number of options for folks. You can help with this. If you know a physician who is knowledgeable about MG, and is someone you would recommend, let the Chapter know. You might want to check with the doctor to make sure he/she is OK with the Chapter giving out his/her name as part of a list of options for folks seeking treatment. The Chapter would be interested in information for Connecticut, Maine, Rhode Island, and Vermont. You can send in the information to the Chapter post office box, by e-mail or call in the information to the Chapter phone.
For MG folks who are interested, and who are computer savvy, there is an informal on-line MG chat which occurs every night at 8:00 p.m. Eastern Standard time. This is a non-moderated chat, which means there is no formal “host” or staff for the chat. Whoever shows up is someone with whom you can chat! There is usually, but not always, someone in the chat room every night. If you try one night and no one is there, try the next night.
To try the chat, go to the following URL:http://irc2go.com/webchat/?net=Phazenet&room=MGravis
You should see the following:
Chatroom: Please choose a nickname and press "Continue" to establish a connection to the chat network and to join the chat room!
Nickname:
Realname:
Move your cursor to the box next to “Nickname.” Type in the name you want to use, click on “Continue.” You may get a security alert about running the application. Click on “Run.” This should get you to the chat room. Type what you want to say in the long white box right above “Public: #MGravis.”
Good luck! If you try to access the chat and have difficulty, e-mail Susan Winters at [email protected].
Members should be aware that the Chapter Phone currently is answered by Voice Mail. It does not ring through to an office or any specific physical location. Our goal is to try to make a return phone call within 24-48 hours to any message left. When leaving a message, please repeat any phone numbers, include your area code, and spell your name.
MG AWARENESS MONTH
June is MG Awareness Month. Even though there is still lots of snow on the ground, June will be here before we know it. Anyone interested in participating in various awareness activities can contact the Chapter for information, help, and support for these activities, which can include getting town, city, or state Official Proclamations, letters or articles in local newspapers, and interviews on radio or television. We ask that anyone involved in these activities, let the Chapter know so we can spread the word!
MEMBERSHIP DUES
We thank all of you who have sent your membership dues in. If you are not sure about your dues status, look in the mailing label section of the newsletter. There will be a number or a code indicating your dues status. Look for the words “Dues Thru:” followed by a code.
If there is a number, it will be the year up to which you are current with your dues. If you see “10,” you are current for 2010. If you see “11,” you are current through the end of 2011.
Folks with dues waivers will see “11.” If you paid the lifetime membership, your code will be LF. New folks who have not yet sent in dues will see the year they were added with an “n” after it. For folks who haven’t paid dues since 2008, we need to hear from you; if not, we will
assume you prefer to not continue your membership with the Chapter.
A membership renewal form can be found on the inside of the last page of this newsletter. Annual dues are $15; lifetime dues are $200.
As always, any member with financial concerns can contact Vicki or the Chapter to discuss a dues waiver. All calls will be held in the strictest confidence.
The Nutmeg ~March 2011 Page 3
Notes From The EditorBy Susan C. Winters
Greetings and salutations! What a winter this has been! I had quite a laugh when I saw a news report about a sign outside a church: ”If you are the one who has been praying for snow, please, stop —now!”
Inclement weather and the results of the same can pose quite an issue for anyone with vision and/or mobility issues. When moving is a challenge, adding some ice, some snow, and even sand and salt can make footing dicey and walking dangerous. With all the mounds of snow piled up at the edge of the roads and parking lots, vision is impaired for those with 20/20 eyesight and fully functioning eyes and eyelids. A healthy respect for these limitations is important: to ask for appropriate help and assistance to stay safe, to utilize mobility aids, and to work to stay connected when the regular ways to connect are limited by the weather.
I found that even using with my rollator (a walker with wheels and a seat), walking over tiny snow mounds was a challenge which tired me out very quickly. I am grateful for my grocery delivery service; they made it through, albeit four hours late, during a snowstorm. Since I am not getting out, except for doctor’s appointments, I am working to stay as connected as possible via the phone and computer. I am also very much looking forward to SPRING!!!!
It would be very helpful if Connecticut, and maybe Rhode Island, members would review the complete the Support Group Survey on pages 15-16. We have received several requests for an additional support group and would very much like to put the effort towards establishing one which will meet the needs of the largest number of members.
Everyone can check out Jennifer Dums’ letter on page 17. Jennifer joined the “Nutmeg” Chapter’s Board of Directors last year and will be participating in the MG WALK. For those of us who are not in the place physically to do the walk ourselves, we can support Jennifer, who is willing be the face for our MG family. Walk well, Jennifer!
As always, please feel free to contact me at my mail address (66 Songbird Lane, Farmington, CT 06032-3420) or my e-mail ([email protected]). If you opt to e-mail me, please include the word "Nutmeg" in the subject line. It will catch my attention easier and not end up as SPAM.
The Nutmeg ~March 2011 Page 4
Dear Editor,
I am writing in reference to a complication I experienced after having plasmapheresis/plasma exchange (PEX) prior to surgery.
Over a year ago prior to surgery, I had to undergo three weeks of PEX to make my body stronger because of my MG symptoms. I am unfortunately allergic to IVIG, so that was not an option. Four days after the surgery, I experienced a very severe hemorrhage and needed a transfusion of 11 pints of blood to keep me alive. Because of this, I was in the Critical Care Unit and in the hospital for two months. My family was told I wasn't going to make it. I was out of work for a year. I don't want to see anyone else endure the pain and suffering my family and I went through this past year. It has taken me over a year to recover.
I know PEX is used for heart patients who have clotting issues, as it thins the blood to ensure better flow. However, for general surgery, PEX removes the clotting factor within the blood, causing the patient to bleed. I have spoken to several doctors and attorneys and they all agree that the PEX was the cause of, and the contributing factor to, my internal bleeding. What I want to do is educate doctors and patients with MG about this potential complication from PEX prior to surgery. What are my options as far as someone I can talk with about my concerns?
Ben LiberatoreConnecticut
Editor’s ReplyDear Ben,
It certainly sounds like you have been through a whole lot recently. You mention your concerns about the impact of PEX on your surgical outcome. I hope this is something you have discussed with your doctors. It is hard when things go wrong; a better understanding of what happened can help us figure out what direction to go in and what to do, as well as be more aware for ourselves in the future.
One avenue for reporting “adverse events” during medical care is to the FDA Medwatch. The website address for them is: http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm
Another option would be to alert the Myasthenia Gravis Foundation of America’s Medical/Scientific Advisory Board. The Chair of that Board is Dr. Henry Kaminski. You would be able to write to him in care of the National MGFA Office.
We are including your letter in “The Nutmeg” so that other MG folks can be aware of your experience and be sure to discuss any concerns or questions they have about PEX fully with their treating physician(s). Fully discussing concerns and asking questions is a part of being advocates for ourselves. All MG patients have the right, and the responsibility, to be a self-advocate and to have someone be an advocate when s/he cannot. Whether it is a complication from a treatment like you, Ben, experienced, or a medication side effect, or overlapping medical issues, MG treatment can be complex. The course of having MG itself is not an easy path. We hope no one ever feels alone in facing this. Staying educated and informed as a patient is important: it is one core reason why the Connecticut “Nutmeg” State Chapter and the National MGFA office exist. Sharing our experiences, good and bad, offers benefit to all.
Susan C. Winters, Editor
The Nutmeg ~March 2011 Page 5
NEWS FROM THE NATIONAL MGFA OFFICEMyasthenia Gravis Foundation of America, Inc.
355 Lexington Ave., 15th FloorNew York, NY 10017
phone: (212) 297-2156 or (800) 541-5454fax: (212) 370-9047
MGFA Website RedesignMGFA’s new website has officially launched. We hope that you find the new design more visually appealing and easier to manage. Visit the new website.
PODCASTSTwo new patient-oriented podcasts about myasthenia gravis have been added to the MGFA website. The podcasts include a discussion about therapies for MG and a “top five” list of what a patient needs to know about living with MG. Produced by Dr. Ted Burns of University of Virginia, the podcasts feature M/SAB members Dr. Henry Kaminski, Dr. Matthew Meriggioli, Dr. Don Sanders, and Dr. Gil Wolfe.
We encourage you to listen to all of the MGFA podcasts. You should also inform your primary care doctor, neurologist, and nurse about where to find them.
As always, consult with your physician directly before making any medical decisions.
MGFA’s National Awareness Campaign
2011 marks the inaugural year of our national awareness and fundraising campaign, the MG Walk: For a World Without Myasthenia Gravis. In the first half of 2011, the walk will take place in at least seven locations across the country, including New York City, Wisconsin, and throughout the state of Florida. This effort will raise funds to help us continue to address the needs of individuals who are newly diagnosed with myasthenia gravis as well as those who have had the condition for a longer time. For more information on the MG Walk, visit http://www.mgwalk.org/
June Awareness MonthJune 2011 marks the eleventh annual “MG Awareness Month,” a nationwide movement at both the national and chapter levels, created by MGFA to raise awareness of myasthenia gravis. The goals of this campaign are to promote an understanding of the scope of this disease, and to further MGFA’s mission in providing information and support to people with MG through research, education, community programs, and advocacy. Follow what MGFA is doing for MG Awareness Month at www.myasthenia.org.
MGFA 2011 National ConferenceThe National Conference will be May 4-6, 2011 at the Tremont Plaza Hotel in Baltimore, Maryland. Conference and hotel registration is now available on the MGFA website. The theme of this year's conference is “Embracing Myasthenia Gravis,” with many of the presentations focusing on the daily management of living with MG.
Health Care Reform Provisions Effective in 2011As of January 1, 2011, Medicare beneficiaries with part D coverage will receive a 50% discount on brand-name prescriptions when they have reached the “donut hole” in coverage. Additional discounts will occur each year until the coverage gap is closed in 2020. In addition, in 2011, Medicare will begin paying 7 percent of the price for generic drugs during the coverage gap. For details on this and other provisions go to http://healthreform.kff.org or http://www.healthcare.gov/law/about/legislation/order/byyear.html
Upcoming NY Conference on Autoimmune DiseaseOn March 26, the American Autoimmune Related Diseases Association (AARDA) will be holding a conference on “What Every American Needs to Know About Autoimmune Disease” at NYU Langone Medical Center. This free conference is open to autoimmune patients, their families, healthcare providers, and the general public. Registration is required by email to [email protected], by phone to 586-776-3900 or online at http://nypatientforum.eventbrite.com. There will be a second conference on May 21, 2011 in Birmingham, Alabama. Additional information will be available in a future update.
The Nutmeg ~March 2011 Page 7
PLASMA EXCHANGE/PLASMAPHERESIS ISSUE
Dear Members of the MGFA,
In a recent issue of the journal “Neurology,” the American Academy of Neurology published an evidence-based guideline update, titled “Evidence-based guideline update: Plasmapheresis in neurologic disorders: Report of the Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology.” In that update, the authors stated that there is insufficient evidence to be able to judge the efficacy of plasma exchange for myasthenic crisis and for treatment prior to thymectomy. The MGFA and its Medical/Scientific Advisory Board (M/SAB) became concerned that this update has the possibility of adversely affecting the treatment of MG patients, and particularly the use of plasmapheresis as part of their treatment. Out of that concern, the M/SAB issued a letter to the Editor of Neurology, which can be read below.
If you are denied coverage of plasmapheresis (plasma exchange) in the treatment of your MG as a result of the Neurology Update, we invite you to contact the MGFA to let us know.
Letter to the Editor,
We applaud the efforts of the American Academy of Neurology to provide rigorous reviews of the literature to critically assess the evidence supporting diagnostic methods and therapies for neurological disorders. However, we are concerned that use of Type I evidence only and the practice parameters as provided in this paper may be misinterpreted by patients, federal agencies, practitioners and insurance companies that the absence of evidence from randomized, double-blind, controlled trials implies a lack of efficacy. The update of plasma exchange for neurological disorders concluded that evidence for the application of plasma exchange for myasthenic crisis and treatment prior to thymectomy merits a Level U recommendation.1 For myasthenia gravis, and many orphan diseases, randomized placebo controlled studies are difficult to design and perform for numerous reasons; these include ethical concerns based on standards of care, lack of federal funding, absence of economic incentives for industry sponsorship, poor infrastructure for performance of trials, and the challenge of coordinating clinical trials for a rare condition.2 Furthermore, widely accepted standards of care may prompt medical ethics boards to deny approval of placebo control arms in clinical trials, and until alternative therapies can be used as active comparators in superiority studies, advocating the Level U in this instance could do harm. We do not disagree that there is a lack of placebo controlled trials of plasmapheresis in MG. However, in the case of plasma exchange, there is a consensus worldwide that the treatment is rapidly effective for myasthenic exacerbation. The preponderance of clinical experience and published observation rises to a level that argues against the need for a randomized trial which includes a placebo (sham exchange group). Many would view such a trial design to be unethical for patients in myasthenic crisis, since treatment failure could mean death. We are reminded of the tongue in cheek article published in 2003 of the lack of randomized controlled trials of the parachute.3 We think this point should have been made in the choice of parameters used to judge treatments. While we recognize that further investigation is needed to improve treatment of MG, a randomized, shamcontrolled trial of plasma exchange, while ideal from an academic perspective to satisfy Type 1 evidence criteria, would be virtually impossible
The Nutmeg ~March 2011 Page 8
to conduct, would not be in the best interests of patients, and would likely place other important therapy questions in the field of MG on hold.
Henry J. Kaminski, MD; Gary Cutter, PhD ; Robert Ruff, MD, PhD; Gil Wolfe, MD
The appendix contains names of individuals who indicated agreement with the contents of this letter.
References1. Cortese I, Chaudhry V, So YT, Cantor F, Cornblath DR, Rae-Grant A. Evidence-based guideline update:
Plasmapheresis in neurologic disorders: Report of the Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology. Neurology 2011;76:294-300.
2 Aban IB,Wolfe GI, Cutter GR, et al. The MGTX experience: Challenges in planning and executing an international, multicenter clinical trial. J Neuroimmunol 2008;201-202:80-84.
3. Smith, G.C. Pell, J.P. Parachute use to prevent death and major trauma related to gravitational challenge: systematic review of randomised controlled trials. Br Med J 2003;327:20-27.
Michael Nicolle, London, CanadaJoel Oger, Vancouver, CanadaLawrence Phillips, II, Richmond, VAJulie Rowin, Chicago, IlLewis Rowland, New York City, NYDonald Sanders, Durham, NCRup Tandan, Burlington, VTSteven Vernino, Dallas, TXDavid Weinberg, Boston, MAAllan Weiss, St. Petersburg, FLHans Katzberg, Toronto, CanadaKatalin Scherer, Tucson, AZFinn Somnier, Copenhagen, DenmarkNils Erik Gilhus, Bergen, NorwayCharlene Hafer-Macko, Baltimore, MDDavid Locomis, Pittsburgh, PAJan Verschuuren, Leiden, The Netherlands
The Challenge of ManagingMultiple Chronic Conditions
Joanne is 78 years old and has six medical conditions that have required long-term treatment ― diabetes, high blood pressure, heart failure, emphysema, arthritis and depression. She is discouraged because she doesn’t have much energy and often can’t do what she’d like. She constantly juggles doctor visits and medications. Joanne feels overwhelmed with all of her medical issues and wishes one of her doctors would coordinate, prioritize and streamline all of her visits, medicines, tests and instructions. She knows she needs more help in preparing nutritious meals, but doesn’t really know where to
The Nutmeg ~March 2011 Page 9
turn for assistance. Her daughter lives too far away to be helpful on a regular basis. Joanne’s neighbor looks in on her frequently and is beginning to worry.
Sound familiar? Joanne and those who care about her are grappling with an increasingly common challenge ― the management of what many health experts refer to as “multiple chronic conditions.” In fact, estimates suggest that about two-thirds of older adults live with two or more chronic conditions. And the aging baby boomer population will only increase the magnitude of this challenge.
Chronic conditions are those that last a year or more and require ongoing medical attention and/or limit activities of daily living. Examples include arthritis, diabetes, heart disease and hypertension. [Editor’s note: Myasthenia gravis certainly qualifies! –SCW] Behavioral health conditions are also increasingly common and include substance use and addiction disorders, as well as mental illnesses, dementia and other cognitive impairments.
The management of multiple chronic conditions has major cost implications. Increased spending on chronic diseases is a key factor driving the overall growth in Medicare spending. And the cost of medications for these conditions can be considerable. There are also non-financial challenges faced by those with multiple chronic conditions, such as learning how to manage fatigue, emotional distress and activity limitations.
And although most individuals have more than one chronic condition, the health care system is primarily organized to provide care on a disease-by-disease basis. So when individuals see a number of specialists, the opportunity for confusion escalates. The most common example involves the use of multiple medications: the use of one may contraindicate the use of another. In short, all of this can result in fragmented care. Care coordination is often the missing link. If care is coordinated, then medical and social service providers bring their respective expertise to bear on each individual’s health problems in the most effective and coordinated manner.
The U.S. Department of Health and Human Services is focusing on this important issue with the development of a new “Framework on Multiple Chronic Conditions.” This Framework will be implemented through public-private partnerships and will be bolstered by some of the provisions in the new health reform law. For more information, read the plan at: www.hhs.gov/ash/initiatives/mcc/.
Framework onMultiple Chronic Conditions
The U.S. Department of Health and Human Services today issued its new Strategic Framework on Multiple Chronic Conditions ― an innovative private-public sector collaboration to coordinate responses to a growing challenge.
More than a quarter of all Americans ― and two out of three older Americans ― have multiple chronic conditions, and treatment for these individuals accounts for 66 percent of The Nutmeg ~March 2011 Page 10
the country’s health care budget. These numbers are expected to rise as the number of older Americans increases.
The health care system is largely designed to treat one disease or condition at a time, but many Americans have more than one ― and often several ― chronic conditions. For example, just 9.3 percent of adults with diabetes have only diabetes, according to the Medical Expenditure Panel Survey from the Agency for Healthcare Research and Quality (AHRQ). And as the number of chronic conditions one has increases, so, too, do the risks of complications, including adverse drug events, unnecessary hospitalizations and confusion caused by conflicting medical advice.
The new strategic framework ― coordinated by HHS and involving input from agencies within the department and multiple private sector stakeholders ― expects to reduce the risks of complications and improve the overall health status of individuals with multiple chronic conditions by fostering change within the system; providing more information and better tools to help health professionals ― as well as patients ― learn how to better coordinate and manage care; and by facilitating research to improve oversight and care.
“Individuals with multiple chronic conditions deserve a system that works for them,” said Assistant Secretary for Health Howard K. Koh, MD, MPH. “This new framework provides an important roadmap to help us improve the health status of every American with chronic health conditions.”
The management of multiple chronic conditions has major cost implications for both the country and individuals. Increased spending on chronic diseases is a key factor driving the overall growth in spending in the Medicare program. And individuals with multiple chronic conditions also face increased out-of-pocket costs for their care, including higher costs for prescriptions and support services.
“Given the number of Medicare and Medicaid beneficiaries with multiple chronic conditions, focusing on the integration and coordination of care for this population is critical to achieve better care and health for beneficiaries, and lower costs through greater efficiency and quality,” said Centers for Medicare and Medicaid Services Administrator Donald Berwick, MD.
The Affordable Care Act, with its emphasis on prevention, provides HHS with exciting new opportunities to keep chronic conditions from occurring in the first place and to improve the quality of life for patients who have them.
“We need to learn rapidly how to provide high quality, safe care to individuals with multiple chronic conditions. AHRQ’s investments assess alternative strategies for prevention and management of chronic illness, including behavioral conditions, in persons with varying combinations of chronic illnesses,” said AHRQ Director Carolyn M. Clancy, MD.
The Nutmeg ~March 2011 Page 11
For more information about the new HHS Strategy on Multiple Chronic Conditions, go to: http://www.hhs.gov/ash/initiatives/mcc/
Disclaimer:This publication is intended to provide the reader with general information to be used solely for educational purposes. As such, it does not address individual patient needs, and should not be used as a basis for decision making concerning diagnosis, care, or treatment of any condition. Instead, such decisions should be based upon the advice of a physician or health care professional who is directly familiar with the patient. The information contained in this publication reflects the views of the authors, but not necessarily those of the Connecticut “Nutmeg” State Chapter of the Myasthenia Gravis Foundation of America (MGFA) and the Myasthenia Gravis Foundation of America. Any reference to a particular product, source, or use does not constitute an endorsement. The Connecticut “Nutmeg” State Chapter, MGFA, its agents, employees, Directors, chapters, its Medical/Scientific Advisory Board, and its Nurses Advisory Board or their members make no warranty concerning the information contained in this publication. They specifically disclaim any warranty of merchantability, fitness for any particular purpose, or reliability regarding the information contained herein, and assume no responsibility for any damage or liability resulting from the use of such information.
The Nutmeg ~March 2011 Page 12
HHS Announces the Launch of Healthcare.Gov on Facebook
On September 27, 2010, Health and Human Services Secretary Kathleen Sebelius announced the launch of HealthCare.gov on Facebook: http://www.facebook.com/Healthcare.gov.
“HealthCare.gov on Facebook offers Facebook users a new tool to understand and stay informed about the Affordable Care Act,” said Secretary Kathleen Sebelius. “This new page is another resource that people can use to learn about and discuss health care issues that are important to them, their family, or their small business.”
HealthCare.gov on Facebook provides additional resources that allow consumers to take health care into their own hands.
HealthCare.gov on Facebook allows people to: Search for insurance coverage using our “Insurance Finder” tool. The tool asks users to fill
out two fields with basic information about themselves and the state they live in. Users are then redirected to a page on HealthCare.gov that continues with the insurance finder process based on the information provided.
Share thoughts and ideas with other members of the HealthCare.gov network. Learn more about what the Affordable Care Act means for individuals, families, or small
businesses. Stay informed with new blog posts and web chats.
To join HealthCare.gov on Facebook visit http://www.facebook.com/Healthcare.gov, and click the “Like” button at the top of the page.
An MG LAUGHSometimes, things shouldn’t be funny, but just are. This story is printed with Gabrielle Harrison’s permission. She initially posted it on the e-mail list, MG – Climbing the Hill Together (http://groups.google.com/group/myasthenia).
Last night at the dinner table, I decided to tell everyone, meaning my children and mother-in-law, that I was having the thymectomy next week and what was involved, etc. My "children" are in their twenties. My oldest looks at me with his eyes as big as saucers and says, "You’re getting your legs cut off??!!" “Thigh-mectomy” is what he heard. I about fell off my chair from laughing! Sometimes, with MG, it's hard to explain first the disease, and then the procedures and the medications, etc. But now, at least, I'll always smile when I read about "Thigh-mectomy".
The Nutmeg ~March 2011 Page 13
MG Treatment:A-Imuran/azathioprine
C- CellceptI-IVIG
M-MestinonP-Prednisone
R-RituxanS-Prostigmin
T-ThymectomyV-On ventilator
X-Plasma exchangeY-Cyclosporine
O-Other
MG Type:B-Bulbar
C-CongenitalE-Ocular
G-GeneralizedM-MUSK+
O-Other/unknown
MG STATUS:P-Patient
S-Spouse of patientM-Parent of patient
O-Other familyF-FriendX-Other
OTHER:A-Active/vigorousC-Parent with MG
D-DisabledF-Fatigue related to MG
H-Pain related to MGM-Family members with MG
P-Pregnant w/MGR-Retired
S-In school/college with MGT-Driving problems related to MG
W-Working/worked with MGX-Thymoma
Z-Zaftique (Large-sized)
REMISSION:Y-Is / Was in remission
N-No remission but hoping
MG PALS LIST
This list is for you to use if you need or want to speak with someone about MG. All the folks on this MG PALS list are interested in and willing to be contacted by anyone needing to talk about MG, whether a patient, family or friend. Folks on the list have indicated what avenue of contact is O.K. - phone, mail or/and e-mail.
These are the codes to use to look up on the list if you want to speak with someone with specific experience with MG.
MG PALS: Current information is important for people to reach you successfully. If you do make any changes to contact information, please, be sure to let us know.
Support Group IssuesWe currently have one active support group which meets every other month at St. Vincent’s Hospital in Bridgeport. Attendance has been sporadic, but we believe the value of the support group is significant.
We have received requests to create another MG Support Group in Connecticut and have been researching a few different locations and times. Since you will be the folks attending the meetings, sharing your experiences and gaining knowledge and support, we need your help in deciding the “when,” the “where” and the “what” topics.
Since all the current board members are in Connecticut, our availability to offer supports groups is centered in Connecticut. We are not forgetting our members in Maine, Vermont, and Rhode Island. If anyone in those states wants assistance in establishing a support group, please let us know. There are support group guidelines and other resources. We are keeping our thinking caps on as far as how to get the support group experience to all our members.
Connecticut Support Group SurveyIf you are interested in attending an MG Support Group in Connecticut, please take a moment or two to answer the questions on the next page.
You have a couple options for getting the information back to us.
You can mail the survey back to: Susan Winters66 Songbird LaneFarmington CT 06032-3420
You can fax the survey to the Chapter at (866) 329-8784.
You can call the Chapter phone number (866) 329-8784 and leave a message with your responses.
If there is someone you know that would like to share their knowledge with your support group, please let us know. Doctors, nurses, physical therapists, disability insurance advocates, etc. are all wonderful sources of information and sometimes just a good story to start a round of laughter.
If yes, what did you like/dislike about them?________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
When would be most convenient day and time for you? Weekday morning: 9am to 11am Weekday afternoon: 1pm to 3pm Weekday evenings: 7pm to 9pm Weekends morning: 10am to 12pm Weekend afternoon: 2pm to 4pm
Circle the town(s) to which you would go to attend a support group:Bridgeport Hartford Norwich WaterburyClinton Meriden Stamford West HartfordEast Hartford New Haven Torrington OTHER:Fairfield New London Wallingford _____________
Do you think that your family or friends would like to come with you to learn more and talk with other caregivers and supportive family members?
Yes No
Would a speaker on topics relevant to MG interest you? ? Yes Noo What topics would you be interested in?
Would you be interested in an on-line support group? ? Yes No
The Nutmeg ~March 2011 Page 18
A CONNECTICUT “NUTMEG” STATE CHAPTERBOARD MEMBER IS WALKING
Hi there! My name is Jennifer and in early 2009 I was diagnosed with Myasthenia Gravis. My symptoms came on very quickly,
beginning with a droopy eyelid. Within two months, I had experienced my first real scare; I woke up one morning feeling fine and by noon I was in the emergency room, unable to speak clearly at all.
I was put on high doses of steroids in an attempt to control the MG symptoms. Due to another medical condition, I was unable to undergo most of the typical MG treatments. After many conversations with my neurologist, we settled on trying Rituxan, a treatment option that is not yet typically used in MG cases. By the end of 2009, I had gone through a thymectomy, a crisis involving more hospital time and had begun this experimental treatment, hoping that it would work. The support of my family and friends has been so wonderful; it helps to remind me why it is so important to maintain a positive outlook through all of this.
The MG Walk is the Myasthenia Gravis Foundation of America’s (MGFA) new signature awareness and fundraising campaign. With monies raised from the MG Walks, MGFA is committed to finding a cure for myasthenia gravis and closely related disorders, improving treatment options and providing information and support to people with myasthenia gravis through research, education, community programs, and advocacy.
With the help of Rituxan and close monitoring by my neurologist I am almost medication free! Through the monies raised from the MG Walk, treatments, like the treatment I received, can come closer to being available to others who suffer from MG. A world without Myasthenia Gravis!
Fighting MG for my family is personal; my new extended MG family is pretty big. Please go online to help with the fight by starting your own team, joining an existing team, or simply making a donation. Check out the Virtual Walk where you can participate from anywhere.
If you would like to join my team, go to www.MGWalk.org and register with team Rocket at the Tri-State (New York) location. You can also email me at [email protected] *** and I’ll help you get started. Ask me about getting your name printed on the shirt I’ll be wearing during the walk if you’d like to help but cannot make it to NYC on June 16th to walk yourself.
Let’s start walking!Jennifer Dums
Connecticut “Nutmeg” State Chapter Board Member*** Please see MG Pals page for additional contact information.
Don't Let Medicines Cause HarmBy Carolyn M. Clancy, M.D.
December 7, 2010
We take more medicines than ever to maintain or improve our health. But over the last decade, many baby boomers and seniors have ended up in the hospital because the medications they expected to help them actually hurt them.Many medical problems now can be treated with medicines that were not available just a few years ago. But taking more medicines can also result in some unexpected reactions, especially for people who take several drugs. Bad reactions to medications are on the rise, according to a new report by my agency, the Agency for Healthcare Research and Quality (AHRQ).Between 1997 and 2008, hospital admissions doubled among Americans aged 45 and older for medication and drug-related conditions. These hospital admissions include the effects of prescription and over-the-counter medicines as well as illegal drugs. This increase has been driven by three types of medication and drug-related conditions:
• Drug-induced delirium, which is general confusion and agitation caused by drugs. Common causes are drugs for sleeping, nausea, and pain. Elderly patients are more sensitive to medicines than younger adults.
• Poisoning or overdose from codeine and other narcotic medicines. Bad reactions from narcotic pain medicines are especially common in older adults.
• Withdrawal from prescribed medicines or illegal drugs. Drug withdrawal occurs when someone suddenly stops or takes much less of a drug after being on it for a long time.
We're working to prevent hospital admissions due to medication use. Together with the U.S. Food and Drug Administration, AHRQ oversees a program that identifies medication problems and finds solutions.
You can lower your chance of problems with your medication. First, don't take medicine that is not prescribed for you. Also, remember that it is not safe to drink alcohol when you take medicine for sleeping, pain, anxiety, or depression.As we age, drugs can affect us differently. We may need to change medications or adjust dosages. As an active health care consumer, talk with your doctor about your medications, how they work, and potential side effects. Don't be afraid to ask questions. Many medication errors are discovered by patients.To reduce your chances of complications from medicine, use this checklist:
• Bring a list or a bag with all your medicines when you go to your doctor's office, the pharmacy, or the hospital. Include all prescription and over-the-counter medicines, vitamins, and herbal supplements. Remind your doctor and pharmacist if you are allergic to any medicines.
• Ask questions. Ask your doctor or pharmacist to use plain language. It may also help to write down the answers or bring a friend or relative with you.
• Make sure your medicine is what the doctor ordered. Many drugs look alike and have names that sound alike. Check with your doctor or pharmacist to be sure you have the right medicine. If you are getting a refill and the medicine looks different, ask the pharmacist about it.
• Learn how to take medicine correctly. Read the directions on the label and other paperwork you get with your medicine. Medicine labels can be hard to understand. Ask your pharmacist or doctor to explain anything you do not understand. Are there other medicines, foods, or activities (such as driving, drinking alcohol, or using tobacco) that you should avoid while using the medicine? For example, ask if "four doses daily" means taking a dose exactly every six hours or just during regular waking hours. Ask what "take as needed" really means.
• Find out about possible side effects. Many drugs have side effects. Some side effects may bother you at first but will get better later. Others may be serious. If a side effect does not get better, talk to your doctor. You may need a different dose or a different medicine.
• Make your medicines work for you-not against you. By taking steps to get the best results from your medicines, you can help prevent problems.
The Nutmeg ~March 2011 Page 21
What You Can Do
To Prevent A FallBy Carolyn M. Clancy, M.D.
March 1, 2011When kids fall down, they can usually get up and return to play quickly. But for older adults, falls can be serious.Among adults over age 65, falls are a threat to health and independence. They are also common. More than one-third of adults over age 65 fall each year. They account for about 2 million emergency department visits, data collected by the Agency for Healthcare Research and Quality shows. About three-quarters of those treated are women.One-third of older adults who fall suffer moderate to serious injuries, including hip fractures and head trauma. Falls often send seniors from a hospital to a nursing home or long-term care facility for follow-up care. This may be difficult physically and emotionally.While there's no simple solution to stop falls and their serious effects, there is progress. We're learning more about why falls occur and, more important, steps to prevent them.Falls happen for many reasons. Aging often causes declines in vision, balance, and strength, making falls more likely. As we age, we are also more likely to take medicines that can cause dizziness, slow our reaction time, or cause other side effects. Finally, how a person's home is set up can increase the risk for falls. Here are some things you can do to reduce the chance that you or a loved one will get hurt by a fall:
Know Your Medicines
Make sure your doctor knows which medicines you take. I can't overstate how important it is to keep a current list of all of your prescription and over-the-counter drugs. Show this list to your doctor and pharmacist at each visit. Your doctor or pharmacist can tell you, for example, if a medicine to treat blood pressure can cause dizziness and how to avoid problems. Find out if a new medicine replaces one you already take. Ask your doctor or pharmacist if the new drug will cause side effects with drugs you already take.
Ask how to take new medicine correctly. Make sure you find out how often to take it and whether you should take the drug with food. Tell your doctor if you have side effects. Be sure to monitor your heart rate, blood pressure, or blood sugar at home, if recommended by your doctor. Remember that alcohol interacts with many medicines. It can make side effects, like dizziness, worse.
Stay Strong with Exercise
Talk to your doctor before you start an exercise program. Doctors can recommend specific exercises that are best for you. Consider exercises recommended for older adults. They include tai chi for balance and coordination; walking for balance, ankle strength and endurance; and strength training, which improves muscle endurance and overall strength. Water aerobics is a good choice for people with arthritis because it is gentle on the joints. Listen to your body and know your limits. But keep in mind that it takes time to build and regain strength.
Create a Safe Environment
Have your home checked. Home assessments help determine the safety of your home and identify ways to make it safer. Suggestions may include installing grab bars in the bathtub and making sure rugs are securely fastened. Area Agencies on Aging (AAAs) can provide information and referrals to local home modification programs. Talk to your doctor to see if a cane, walker or other device can help you maintain balance. Make sure the device is adjusted for your height. Ask your doctor or hospital about a personal medical response system. Research shows that people who have fallen are more likely to fall again. Technology offers a good defense against that risk. Personal medical response systems activated by a wristband or pendant alert family or emergency services if you fall. Your doctor or hospital is probably familiar with local response systems in your area.There's no doubt about it: Falls can be serious. That's why preventing falls before they happen is the wisest course of action.
The Nutmeg ~March 2011 Page 23
Walking The Brain
U.S. Department of Health and Human ServicesHealthBeat (November 5, 2010)
Taking up walking or other moderate activity can help an older person’s body – and a study indicates it also could help the brain. A researcher at the University of Illinois at Urbana-Champaign saw that in brain scans of 65 people ages 59 to 80 who took up walking 40 minutes, three times a week.
Art Kramer looked at more than coherence among signals in individual parts of the brain. He looked at coordination among networks of the brain – the connectivity that links different parts in thinking. He found people who exercised also had better brain coordination: ``Fitness makes it more correlated, so it’s not just the coherence in the networks but the coordination among the networks.’’ The study in Frontiers in Aging Neuroscience was supported by the National Institutes of Health.
Save The AntibioticsU.S. Department of Health and Human Services
HealthBeat (January 21, 2011)
Antibiotics treat bacterial diseases, and sometimes save lives. But can we save antibiotics? Bacteria are evolving ways to evade the effects of some crucial antibiotics. At the Centers for Disease Control and Prevention, researcher Lauri Hicks says that’s partly because doctors and patients have given bacteria too many chances to evolve: “There is a perception that antibiotics are always the answer when we get an infection. Most infections are actually caused by viruses. Prescribing antibiotics for viral infections like colds is the most common misuse of these drugs.” Hicks advises using antibiotics for treatment of bacterial infections, but never for colds.
Getting Protection Against PneumoniaU.S. Department of Health and Human Services
HealthBeat (December 21, 2010)
Pneumonia is one of the leading causes of death for older people, but a vaccination can reduce the risk. The 2009 National Healthcare Quality Report produced by HHS’ Agency for Healthcare Research and Quality, or AHRQ, reports that the proportion of people 65 and older who got vaccinated rose from 53 percent to 58 percent between 2000 and 2007.
However, the researchers note this is still well below the federal target of 90 percent by 2010. Researcher Karen Ho: “If you know anyone in your family or have friends who are over 65, make sure they get vaccinated for pneumonia.” The study is in AHRQ’s News and Numbers.
The Nutmeg ~March 2011 Page 24
Less Embarrassment, More ExamU.S. Department of Health and Human Services
HealthBeat (January 24, 2011)
When a doctor checks you for skin cancer, the doctor looks at your skin – all of it. This can be so embarrassing for some people that doctors don’t always do it – to spare those patients the embarrassment.
Researcher Susan Oliveria at Memorial Sloan-Kettering Cancer Center in New York City saw that in a survey of doctors. But without screening, skin cancers might not be caught early, when the potential for cure is greatest.
Oliveria says doctors can ease the embarrassment by giving patients written material in advance. She advises patients that “they could ask their physician. They could talk to nurses or nurse practitioners prior to the actual physician screening, and also read any written materials that might be provided to them.”
The study in Archives of Dermatology was supported by the National Institutes of Health.
[Editor’s Note: A number of the medications for MG have an increased risk of skin cancer. Screening for skin cancer is an important prevention tool-SCW.]
Strength Under PressureU.S. Department of Health and Human Services
HealthBeat (November 25, 2010)
When life gets tough, here’s an idea that might keep you going: Researchers say people who faced adversity can have more resilience, which seems to improve their mental health.
The researchers checked survey data on close to 2,400 people from 2001 to 2004. They found people who had suffered some, but not intense, adversity emerged with better psychological well-being than did people who had life easier.
Mark Seery of the University at Buffalo in New York said, “Just because someone has gone through something difficult does not mean that they are doomed to be forever damaged. They may end up stronger and more resilient in the future, even if it does take some time to get to that point.” The study in the Journal of Personality and Social Psychology was supported by the National Institutes of Health.
The Nutmeg ~March 2011 Page 25
Health AdvocatesU.S. Department of Health and Human Services
HealthBeat (October 26, 2010)
Receiving serious news about your health can be stressful. You're trying to listen to your doctor and ask questions, but you can often be overwhelmed. This is where a health advocate can be helpful.
They can be a family member, friend, or trusted colleague. Dr. Carolyn Clancy is the Director of the Agency for Healthcare Research and Quality: "An advocate can help ask questions, write down information and get the resources the patient needs.”
In many cases, a patient can be concerned about the results of a health test they've taken. Dr. Clancy also recommends having an advocate for comfort purposes: "This can be great support for the patient and also help them understand their options."
Activity With FeelingU.S. Department of Health and Human Services
HealthBeat (September 20, 2010)
Physical activity raises your spirits as well as making your body better. At Boston University School of Medicine, Chris Streeter looked at 19 people who did yoga and 15 who walked, on average an hour, three times a week, over 12 weeks.
Streeter did brain scans to measure GABA, a chemical linked to mood. And she checked people’s reports of mood. She found that a 60-minute yoga session correlated with increased GABA levels: "Higher GABA levels were associated with reports of better mood. GABA levels were negatively correlated with anxiety, which means that, as GABA levels went up, reports of anxiety went down."
People who did yoga got more benefit than people who walked.
The study in the Journal of Alternative and Complementary Medicine was supported by the National Institutes of Health.
Imagination is the highest kite one can fly.~Lauren Bacall
The Nutmeg ~March 2011 Page 26
FDA Patient Safety News – January 2011
Alarming Monitor Problems
An FDA article in the journal Nursing2009 describes problems that can arise with the use of alarms on patient monitoring equipment. From 2005 through 2008, FDA received 566 reports of patient deaths related to the alarms on monitoring devices. Part of the problem is that alarms can very easily be disabled or silenced. Also, it is easy to overlook onscreen symbols indicating that an important alarm feature is not turned on or available. In many of the FDA reports, users were not familiar with how the monitoring equipment worked, or hadn't checked the monitor's alarm status.
In one case, a patient on continuous cardiac monitoring experienced ventricular fibrillation and died without her monitor sounding or displaying an alarm. It turned out that although the monitor detected the problem, its dysrhythmia processing had been turned off.
And in another case, an infant died when staff members did not notice a visual alarm on the screen of the perinatal monitor, warning that the child's heart rate was outside the defined parameters. The equipment had not been set up to provide audible alarms.
Here are some of the things FDA recommends to avoid alarm-related patient injuries and fatalities:
• Do not silence alarms without first checking on the patient.• Make sure that all patient alarms are appropriately activated and not suspended, that
dysrhythmia detection functions are available and appropriately activated, and that the alarm volume is high enough to be heard outside the patient's room. Perform these checks when assuming care of patients from colleagues, after shift changes, and after patients are transferred.
• Become familiar with all monitor functions, especially dysrhythmia alarms and icons on the screen, and the meanings of various alarm sounds.
• Make sure that new staff members, including travel and float nurses, are adequately trained on the unit's monitors before they care for patients.
[Editor’s Note: Some of this article is on the technical side, but I have included it here as a reminder of OUR role as a patient or family member of a patient. We can be aware of what we should expect from medical staff as a part of our care. -SCW]
The Support Group currently meets on the 3rd Sunday every other month at St. Vincent's Hospital, 2800 Main Street in Bridgeport from 2 - 4 p.m. Family and friends are encouraged to attend. For more information: call (866) 329-8784 (toll free) or email [email protected].
Please note: the meeting locale has been changed to the hospital cafeteria on the 4th floor ("Level C"). Since it is closed at the time of the meeting, go in the cafeteria exit door.
The schedule of meetings for 2011 as of this time is as follows:
March 20 May 15 July 17 September 18 November 20
DIRECTIONS TO ST VINCENT'S HOSPITAL
St. Vincent's Medical Center is conveniently located on upper Main Street, in Bridgeport's residential north side neighborhood with easy access from the Merritt Parkway (Route 15) and Interstate-95, as well as the Route 8 & 25 Connector. Blue "H" hospital signs also lead to our 10-story, white landmark building.
From the Merritt Parkway: Take Exit 48 (Main Street); proceed two miles south to St. Vincent's campus, on the left.
From I-95: Take Exit 27A onto the Route 8 & 25 Connector; take Exit 4 Lindley St.); turn left onto Lindley and proceed three blocks to Hawley Ave.; turn left onto Hawley and to the Medical Center on the right.
From the Route 8 & 25 Connector (southbound): Take Exit 5 (Boston Ave.); turn left at end of ramp and proceed to Summit St.; follow Summit to Main and turn left; Medical Center will be on the left.
Parking: Ample parking is available in St. Vincent's Hunting Street Garage. Parking is available at the Hunting Street Garage. Please bring your ticket in with you and have parking tickets processed at the central cashier located in the Main Lobby Patient Information Desk. Patient validation must also be processed at the Central Cashier Area.
The Nutmeg ~March 2011
St. Vincent's Medical Center2800 Main StreetBridgeport, CT 06606-4201(203) 576-6000www.stvincents.org
ABOUT OUR NEIGHBORSThe Massachusetts/New Hampshire
Chapter of MGFA
Given the geography of New England, some of the Massachusetts/New Hampshire Chapter's activities might be of interest to some of our members … and easier to get to.
The Massachusetts/New Hampshire Chapter meets bi-monthly at the Newton-Wellesley Hospital in Newton, Massachusetts. These meetings take place on Sunday afternoon from 2 - 4 p.m. Meetings consist of a general question and answer session with one of their Medical Advisors, usually followed by a guest speaker. However, sometimes they just chat! For more information, please call 508-435-3808 or check their website at:
Sunday, March 13, 2011 2 - 4 P.M. Sunday, May 15, 2011 2 - 4 P.M.
Sunday, September 18, 2011 2 - 4 P.M.
NEWTON WELLESLEY HOSPITAL MEETINGS (NEWTON, MASSACHUSETTS)
Directions to Newton Wellesley Hospital:Take Exit 21 off Route 128 and head East on Route 16. Hospital is on your right. Follow signs for Emergency and go up the hill. The Allen Riddle Building is on your left. You may park across from the building, in the Thrift Shop parking area, or in the lot immediately to your left at the bottom of the hill. There will be no charge for parking in this lot.
In Memory of Fred TuenneckeCeline and Russell Teagarden
In Memory of Maureen WalshRaymond Walsh
In Honor of Susan WintersBetty Gerner
Marianne Schustek
To The ChapterGilbert Bashaw
Jack CohenJean Devine
Mary DonahueEdward Dunford
Jose EguiaEllen Gaddis
Marie LatimerPhilip Lawrence
John McCormackErnest OuelletteCharles Perry
Paulette PszonowskyR & W Family Foundation Inc.
Barbara RodmanAnne RubinEnio Susi
Robert Wolfe
We apologize for any typographical errors or omissions. Please contact us to correct any inadvertent mistakes; we will gladly fix them in our next edition.
We are truly grateful to those individuals and families who have donated in honor or in memory of loved ones and friends. The CT "Nutmeg" State Chapter, MGFA, is a volunteer, 501 C (3) non-profit organization whose sole purpose is to assist the myasthenics and medical community of the state. Donations are tax-deductible to the fullest extent of the law. We are thankful to all those who remember us in their giving. Please be aware that individual acknowledgment notes are sent out for the donations we receive. Please feel free to contact the chapter with any questions or concerns about this.
The Nutmeg ~March 2011 Page 30
Donation is from:
Name: _____________________________
Address: ___________________________
___________________________________
Please send Acknowledgement to:
Name: _____________________________
Address: __________________________
___________________________________
CONNECTICUT "NUTMEG" STATE CHAPTERMYASTHENIA GRAVIS FOUNDATION OF AMERICA, INC.
MEMBERSHIP RENEWAL FORM FOR YEAR 2011
Name: _____________________________ Patient Relative Friend Other Family Member Professional
Address: ___________________________
City: _______________________________ State: _____ Zip code: _______________
Enclosed is my Annual Membership Dues of $ 15.00 Enclosed is my Lifetime Membership Dues of $ 200.00 I am enclosing an additional donation of $ ____________Total Enclosed $ ____________
Dues waiver requested Please remove me from mailing list
I WOULD LIKE TO RECEIVE “THE NUTMEG” VIA Regular US Post Office mail E-mail
Please make checks payable to: CT "Nutmeg" State Chapter, MGFASend to: CT "Nutmeg" State Chapter, MGFA
P.O. Box 91Clinton, CT 06413-0091
Donations to our chapter are a nice way to honor a special person you know while contributing to a good cause. If you would like your donation in honor of or in memory of someone, we will send an acknowledgement (no amount indicated). Please complete the following:
In honor of: ______________________________________________________
In memory of: ____________________________________________________
