useful lind

i am ashamed to say but haven't checked it out. let me know if you find it useful. www.gethuman. com

"I'm Ill, but who really needs to know?"

I'm Ill, But Who Really Needs to Know? By Lisa Belkin The New York Times February 21, 2008 ONE of the first decisions you make in the emotional hours after a scary diagnosis is whether to tell others. Most of us share the news with our loved ones, but what of the circles beyond, particularly those at work? Your boss? At first, Richard M. Cohen, whose multiple sclerosis was diagnosed at 25, did not tell. Mr. Cohen - whose latest book, "Strong at the Broken Places," recounts the stories of five patients with chronic illnesses - was starting what would become a hard-charging career as a television news producer when he learned of his condition. He feared he would be considered unfit. He kept his secret for years despite failing vision and shaky balance. Marlene Kahan, in turn, disclosed her condition right away. Four years ago, when she learned she had Parkinson's disease, she had been the executive director of the American Society of Magazine Editors for more than a decade. With that longevity came security, she hoped. Ms. Kahan was also afraid that the mix of symptoms and side effects from the treatments would leave her at "less than 100 percent," she said, making it seem as if she was either slacking or even sicker than she was. "I didn't want people to wonder and jump to other conclusions, " she said. Gayle Backstrom, whose fibromyalgia, a chronic pain condition, was diagnosed decades ago, understands both paths. Still she advises to keep your condition to yourself for as long as possible, because that is safer. The Americans with Disabilities Act prohibits an employer from dismissing or failing to hire a chronically- ill employee on the basis of that disability "if they are able to do the job with reasonable accommodation, " she said. But in many cases, "reasonable" and "able" and even "job" all become open to interpretation, said Ms. Backstrom, the author of "I'd Rather Be Working" (Amacom, 2002). An excellent resource for workers facing this choice, she said, is the Job Accommodation Network, a service of the federal Department of Labor. Most questions on its site, she said, come from workers, not management, and "they are looking for suggestions on how to do adjust their work without bringing it to the attention of their bosses," she said. They buy themselves custom footstools and wrist-rests, and sneak off to restrooms to take medications. To hide their condition on the worst days, they call in sick, giving a reason other than their chronic illness. Mr. Cohen did that for nearly 10 years. In "Blindsided: Lifting a Life Above Illness," he recalled an interview for a job as a producer on the "CBS Evening News with Walter Cronkite." He asked a friend, Robert MacNeil, whether he should mention his multiple sclerosis. Recalling Mr. MacNeil's answer, he wrote: "Say nothing. Your silence is an honorable dishonesty." Mr. Cohen got the job and was able to keep his secret with scrupulous attention to logistics, quietly using public transportation to conceal that he could not see well enough to drive. Years later, the executive who first hired him agreed that he had been wise to stay mum. "I am not proud to say this," Mr. Cohen quoted the man as saying, "but I don't think I would have hired you if I had known." Celeste Lee also chose to keep the details of her life from her employers for years. An autoimmune disease she developed in high school, 25 years ago, led to kidney failure. A transplant was initially successful, but eventually her body rejected the organ. That left her dependent on regular dialysis. At first, she managed it on her own with a saline bag and an IV needle. She then worked as an administrator at a Boston law firm, and because the process took 15 minutes behind her closed office door, "it was something they didn't really need to know," she said of her employers and co-workers. The timing was sometimes tricky, but life went on. She got her master's degree, was promoted, married and had a son. But after she moved to take a job at Duke University, the simpler form of treatment began to prove insufficient. She had to switch to hemodialysis, which required that she be hooked to a machine that cleaned her blood for three hours, three days a week. Shortly after, she was offered her "dream job" as chief of staff to the chief executive of the Duke University Health System. The high-paced work would require 12- to 15-hour days. For the first time, she wondered whether her illness would hold her back. She raised the issue in her interview. "At first they were uncomfortable because they thought that if they didn't hire me I would accuse them of discrimination, " she said. "But I said: 'No, we have to talk about this. It needs to be on the table.' " She got the job. Now she is on the dialysis machine at the outpatient dialysis clinic at Duke by 7 a.m. on Tuesdays, Thursdays and Saturdays. On workdays she is at her desk by 10 a.m., respectable by most standards, but hours later than her arrival on nondialysis days. She also arrives feeling "hung over" from the six-pound weight loss post-treatment, she said, another reason why she felt she had to be upfront. "On Tuesdays and Thursdays, everyone knows that I can't always be accountable for my personality, " she said. Mr. Cohen eventually also revealed all once he had proved himself. He then went on to squint his way through the Solidarity protests in Poland and the violence in Beirut, once staring down Palestine Liberation Organization guards because he could not see the guns pointed at his head. Eventually he left breaking news for the slower pace of documentary television. Now even writing books is increasingly difficult because of his worsening condition. He wrote most of "Strong at the Broken Places" with his left hand, because his right side doesn't function well. The patients profiled in his book live nationwide, so he spent a lot of time in airports. "Picture it," he said. "I am legally blind, I have trouble with mobility, I was constantly lost and under pressure to get from point A to point B. More than once I dropped everything I was carrying, because I do that, and I had tears in my eyes. I thought, 'I can't do this.' " Yet he commutes daily to his office on the Upper West Side from Westchester, where he lives with his wife, Meredith Vieira, a host of "Today," and their three children. "Barbara Walters is always asking me, 'Why do you do that?' " he said of his wife's former colleague on "The View." "Because I can. You do it until you can't do it anymore." That is Ms. Lee's mantra, too. In recent weeks her doctors have confirmed that she faces a new challenge: nephrogenic systemic fibrosing. It is essentially a thickening of the tissue or subcutaneous skin that can affect muscle and organ functions. "At some point I have to consider whether I will have to bow out of this position," she said. "But I want that to be my decision, and I won't make it until I have to."

swallowing problems in ms

i have lots of swallowing problems with my ms. anyone else? http://www.webmd. com/multiple- sclerosis/ guide/speech- swallowing

id necessary for all illnesses

http://www.happynew s.com/news/ 1112006/new- wallet-size- card-essential- life-saving- device.htm

tax rebate

IMPORTANT INFO ON GOV'T TAX REBATE PROGRAM

PLEASE READ AND SHARE WIDELY! According to the news this morning, ALL people who file a 2007 tax return and are within the income limitations, will receive a government rebate check. This means, that even though you do not normally have to file a tax return, you must file one (Federal only) to receive the rebate. This particularly applies to people with only Social Security or Railroad Retirement Income, plus some interest and possibly dividends. I repeat, Do NOT file a State return if you normally do not file returns at all. This rebate has nothing to do with the States. This also applies to Veterans who have non-taxable disability payments. Be sure to share this information with everyone you know - especially those who do not normally file tax returns. Stimulus Payments: Instructions for Low-Income Workers and Recipients You have to file a tax return - a 1040 or 1040a - to receive their stimulus payment! Also veterans and those drawing railroad retirement benefits! I thought we automatically got on the list to receive the payments! Wrong! We, who are on SS, have to file a tax report using the 1099 SSA we received in January. Read carefully to see what you need to do to get yours. Also, I heard on our local news that those stimulus payments have to be reported on next year's tax return so it isn't really free - it is considered income - a loan, you might say.] _http://www.irs. gov/irs/article/ 0,,id=179096, 00.html_ (http://www.irs. gov/irs/article/ 0,,id=179096, 00.html) Stimulus Payments: Instructions for Low-Income Workers and Recipients of Social Security and Certain Veterans´ Benefits FS-2008-16, February 2008 Some low-income workers and recipients of Social Security, certain veterans´benefits and certain Railroad Retirement benefits may qualify for economic stimulus payments this year from the federal government. In most cases, payments will range from $300 to $600 for individuals and $600 to $1200 for joint filers. Taxpayers may receive $300 for each qualifying child. Most taxpayers do not need to take any extra steps to receive the payment beginning in early May. But there are some exceptions. Individuals who might not otherwise be required to file a 2007 tax return will need to file a return this year to receive the stimulus payment. The return must show at least $3,000 in qualifying income. In other words, low-income workers who had at least $3,000 in earned income in 2007 but do not otherwise earn enough to be required to file a federal tax return need to file a return in order to get the stimulus payment. Likewise, Social Security recipients, veterans and retired railroad workers who might not otherwise need to file a tax return must do so to receive the economic stimulus payment. Certain Benefits Count toward Qualifying Income Normally, certain Social Security, Railroad Retirement benefits and certain veterans´ payments are not subject to income tax. However, the economic stimulus law passed in February contains a special provision allowing Social Security recipients and recipients of certain veterans´ benefits and certain Railroad Retirement benefits to count those benefits toward the qualifying income requirement of $3,000 and thereby qualify for the stimulus payment. This means a taxpayer who had, for example, $500 in earned income and $2,500 in any combination of the benefits described above can count those benefit payments toward his or her qualifying income to reach the $3,000 earned income requirement, even though the individual would not otherwise owe taxes on such income. For purposes of meeting the qualifying income requirement, the following benefits need to be reported in any combination on Line 20a of Form 1040 or Line 14a of the Form 1040A. Social Security benefits reported on the 2007 Form 1099-SSA, which people would have received in January 2008. People who do not have a Form 1099 may estimate their annual Social Security benefit by taking their monthly benefit, multiplying it by the number of months during the year they received the benefits, and entering the number on Line 20a of Form 1040 or Line 14a of the Form 1040A. Supplemental Security Income (SSI) does not count as qualifying income for the stimulus payment. Railroad Retirement benefits reported on the 2007 Form 1099-RRB, which recipients would have received in January 2008. The sum of veterans´ disability compensation, pension or survivors´ benefits received from the Department of Veterans Affairs in 2007. People are allowed to estimate their annual benefit by taking their monthly annual veterans´ benefit, multiplying it by the number of months during the year they received benefits, and entering the number on Line 20a of Form 1040 or Line 14a of the Form 1040A. People should note that Line 20a of Form 1040 and Line 14a of the Form 1040A are designated for Social Security. To qualify for the economic stimulus payments, these lines should also be used to include any qualifying Railroad Retirement or veterans´ benefits. For Those Who Have Already Filed Some recipients of the benefits described above may have filed a 2007 tax return reporting at least $3,000 in qualifying income. They do not need to do anything else. They will begin receiving their stimulus payments in early May. Others may need to amend a previously filed tax return to include benefits to reach the $3,000 qualifying income level. Adding these benefits on an amended tax return will not increase an individual´s tax liability but will establish eligibility for the stimulus payment. Taxpayers can use IRS Form 1040X to amend a tax return in order to qualify for the stimulus payment. Free Tax Help Available Individuals who need to file a return this year to receive a stimulus payment may be able to take advantage of thousands of free tax preparation sites nationwide for low-income and elderly taxpayers. The Volunteer Income Tax Assistance (VITA) program provides help to low- and moderate-income taxpayers. Call 1-800-906-9887 to locate the nearest VITA site. The Tax Counseling for the Elderly (TCE) Program provides free tax help to people age 60 and older. As part of the IRS-sponsored TCE Program, AARP offers the Tax-Aide counseling program at more than 7,000 sites nationwide during the filing season. To find an AARP Tax Aide site call 1-888-227-7669 or visit the AARP Web site.

partnership for prescription assistance

Help is Here Express returns to Indiana – February 12, 13, 20 - 22

The Help is Here Express – the Partnership for Prescription Assistance’s traveling education center – is returning to Indiana this month!

Trained specialists travel the country on the bus helping the public find prescription assistance through PPA. The bus is equipped with computers and phones ready to search the PPA database.

People are invited to meet PPA and Rx for Indiana staff at the tour stop nearest you and see firsthand how the program helps Hoosiers. Also, consider introducing friends to the program by asking them to join you.

The upcoming Indiana tour schedule is below.

Tuesday, February 12 10 a.m. to noon Mishawaka Location TBD Wednesday, February 13 10 a.m. to noon Michigan City St. Anthony Memorial Health Center

Wednesday, February 20

10 a.m. to noon

Terre Haute

Location TBD

Thursday, February 21

10 a.m. to noon

Indianapolis

St. Francis Neighborhood Health Center

Friday, February 22 10 a.m. to noon Madison King’s Daughters’ Hospital and Health Services For specific information on a particular stop, including times and contact information, send an e-mail to Jennifer Mahoney at Jennifer.mahoney@ borshoff. biz or call 317-631-6400.

The National MS Society-Indiana State Chapter is proud to be a source of information about MS. Our comments are based on professional advice, published experience and expert opinion, but do not represent individual therapeutic recommendation or prescription. For specific information and advice, consult your personal physician.

We are excited about having this opportunity to provide you with the latest on multiple sclerosis issues, and we hope you enjoy reading about it. If, however, you wish to be removed at any time, please let us know.

Heather Donegan Client Programs Coordinator

National MS Society Indiana State Chapter 7301 Georgetown Rd., Suite 112 Indianapolis, IN 46268 Tel 1.800.344.4867

1.317.870.2500 Fax 1.317.870.2520 Email hdonegan@msindiana. org

JOIN THE MOVEMENT www.nationalmssociety.org/ ini

ms polls

http://health. groups.yahoo. com/group/ FriendsWithMS/ polls

when a parent has ms

this article is one of many about parents with ms- the articles are from the parents' and the teenagers' perspectives. <http://www.national mssociety. org/site/ PageServer? pagename= HOM_LIB_brochure s_teensintro>

ariticle about chronic pain affecting cognitve skills

this article is important for msers to know about, since we are often plagued with chronic pain. http://news. yahoo.com/ s/hsn/20080209/ hl_hsn/chronicpa inharmsbrainswir ing

FDA recalls pain patches

for all of the ms patients on pain meds: riCara and Sandoz Inc. announced a nationwide recall of all lots of 25 mcg/hr Duragesic Patches sold in the United States. The product is being recalled because the patches may have a cut along one side of the drug reservoir within the patch which may result in the possible release of fentanyl gel that may expose patients or caregivers directly to fentanyl gel on the skin. Fentanyl is a potent Schedule II opioid medication and exposure to the gel may lead to serious adverse events, including respiratory depression and possible overdose, that may be fatal. Patches with a cut edge should not be used. These recalled patches have expiration dates on or before December 2009 and are all manufactured by ALZA Corporation.

Read the complete 2008 MedWatch Safety Summary, including a link to the FDA Firm Press Release regarding this issue at:

http://www.fda. gov/medwatch/ safety/2008/ safety08. htm#Duragesic

Update your subscriptions, modify your e-mail address, or stop subscriptions at any time on your Subscriber Preferences Page. You will need to use your e-mail address to log in. If you have questions or problems with the subscription service, please contact support@govdelivery .com.

This service is provided to you at no charge by U.S. Food & Drug Administration (FDA).

annette

link to neurologist ratings

http://msneuroratin gs.com/ratings. php i hope this helps anyone with ms or any other neuro problem.

ms support groups

i am a member of two on-line support groups and will start sharing links that are helpful. is there anybody out there interested in participating in my blog? if not that's cool, too. my ms is secondary to my depression at the moment.

depressed

i am totally depressed and can't seem to snap out of it. msers generally have bouts of clinical depression and are bipolar more than the general pop. so that's two strikes for me. boo hoo, boo hoo.... anyway will not beat myself up on top of feeling like shit.shit shit shit shit shit!!!!!