MS Connection Blog



Blog Summary

Are you kidding me? Another $749 out-of-pocket… just for lab tests?

It was another unexpected medical bill, even more irritating than usual because I had called the lab before the test was done to clarify the cost. The lab had assured me I would pay no more than $200, even if my insurance company failed to pick up the tab...

Perspective… and Biscuits

Blog Summary

Here are a few facts: MS takes up a bigger piece of our lives than we would like. It has given us a different perspective. But it will not take our sense of humor. Recently, my husband and I got yet another denial letter from our insurance saying they won’t cover the sleep medication that is finally working for my husband. I know he is not alone in the battle for sleep; the tossing and turning, the burning, the pain, the inability to stay asleep, and then, weighing all of that against the feeling of being hung over the next morning with every other sleep aid he’s tried...

Medicare Annual Election Period: What You Should Know

Blog Summary

The Medicare Annual Election Period (AEP), or Medicare Open Enrollment Period (OEP), has arrived. With approximately 25 to 30 percent of people with MS enrolled in Medicare, it’s important to be equipped with useful information to pick a plan that works best for you. The AEP begins on October 15 each year. From there, you have until December 7 to make changes to your plan. Any changes you make during the Annual Election Period won’t take effect until on January 1, 2019. After then, you can’t make changes to your plan unless there is a special circumstance. Here are some general things to keep in mind during this period...

When You Have MS, Politics is Personal

Blog Summary

Sincelast summer’s failed congressional efforts to repeal many provisions of the 2010 Affordable Care Act (ACA), the hashtag #IAmAPreExistingCondition has peppered countless social media updates. Current and former cancer patients use it on Twitter, Facebook, and Instagram. Asthma sufferers post it, too. Ditto for people with diabetes, mental health issues and heart ailments...

Dragged to the curb

Blog Summary

When it got dragged to the curb, my good friend and neighbor Michelle, walked across the street and remarked, “Aren’t you embarrassed that everyone will know you have furniture like that in your house?”  We burst out laughing as my favorite recliner was now perched upon a frozen snow bank, full of stains, the wood frame showing through the rips of upholstery that Flash, our cat, created. The replacement was delivered, it was the perfect color, updated style and it swiveled. It was this feature that landed me in rehab with a broken leg. Getting there was more painful than the break...

Accessing health insurance

Blog Summary

Since my multiple sclerosis diagnosis in 1997, I have been mostly uninsured. Before my diagnosis, I worked as a bank trust officer. I bought a minority share in a private business in the mid 1990’s. This did not work out, I wasn't able to get back into my former profession, and I was also unable to secure a position in a related field that would provide health insurance coverage. Being uninsured, I typically self-pay for most of my medical treatment. As a person with MS, I’m sure I don’t have to tell you how expensive this can be. Thankfully, I have been able to receive my disease modifying therapy (DMT) at a reduced cost through a patient assistance program. If this program didn’t exist as a safety net, who knows where my disease would be today without treatment to slow its progression.

Planning for the Long Term: Taking Action Today

Blog Summary

I was diagnosed with primary-progressive multiple sclerosis in 1997. "Progressive" means that the disease, well, progresses. I am now functionally quadriplegic, having only partial use of one arm. To write this I am using speech-to-text software on my iPad. I also use my iPad to control the lights, heat, music and door locks in my house. I have been a wheelchair user for 12 years. I am unable to perform any of the activities of daily living (for instance washing, dressing, toileting, eating, etc.) and am completely dependent on home aides to help me with everything. Yet I continue to live alone in my own house.

Squeaky Wheels

Blog Summary

I never considered myself an MS activist, but the lobbying efforts happening in Washington, D.C., to keep MS research funding in place along with my own personal experiences dealing with MS since 1999 has made me reconsider. I need to become more involved with the issues that all people with MS face every day—issues that range from building accessibility to health insurance coverage to the complex web of Social Security Disability, Medicare and Medicaid.   I started being an MS activist this week over my health insurance coverage. My neurologist had wanted to try IVIG infusions after I experienced complications with one of the other infusible drugs. She ordered it, but my health insurance denied it on the grounds it was not an approved treatment for MS. I appealed; they denied it again. My doctor appealed with supporting documentation and they still denied her request. Many people have used IVIG for MS. Some other insurance providers cover the cost, but not mine. So I called a local TV station with a large news staff, some of whom are dedicated to consumer advocacy issues. They have started an investigation on my behalf and are considering a story on the bigger issue of who is really making our healthcare decisions. Stay tuned! This experience and my boldness made me realize that activism has many forms. You don’t necessarily have to go to Capitol Hill to be an activist—you just have to fight for what you believe in and need. Go to for more information on health insurance appeals.  Dealing with the Social Security Administration is a whole different ballgame, but they also need to level the playing field. I was denied Social Security Disability Insurance (SSDI) three times because at the time of my application I did not have enough working quarters immediately prior to my total disability. Even though I had dozens of years of continuous employment during which I paid into the system, I was penalized for being a stay-at-home mom. The rules and regulations must be changed to address the realities of those with MS who cannot rejoin the active workforce in order to establish their eligibility for SSDI.   Loopholes in the Americans with Disabilities Act still allow businesses, municipalities and even our healthcare system to pay lip service to the goal of providing disabled citizens meaningful access to public spaces. This is one thing we can all do something about. Complaining has its benefits. Squeaky wheels sometimes get greased. We people with disabilities must, as a class of citizens, speak up even when we think no one is listening. We must. Or else the drugstore will remain closed to me and anyone else who requires an automatic door. The local government office where handicapped parking tags are issued will remain inaccessible because of concrete stairs and the absence of a ramp or elevator. Even the front door to a local MS clinic will only open to patients with the help of others. So as a group, let’s advocate for each other, by advocating for ourselves. Become an MS activist, like me.  Learn more about self-advocacy at