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‘Disabled? You Seem Perfectly Fine to Me!’

The casual remark, “You seem perfectly fine to me!”Ā bothers me (and others) becauseĀ eligibility forĀ Social Security Disability benefits requires proving we are not fine. In fact, we must prove that we are disabled, which is no small burden when we “seem perfectly fine.” ‘Looking’ disabled An acquaintance of mine…

Lemtrada I: This Island Couch

The latest drug media storm to erupt in Britain is “Spice,” which causes users to become living statues. Exactly a year ago, I became a living statue for six weeks, and not one reporter hassled me. That would have broken the monotony! We all have our own version…

Speak Up to Keep the Cost of MS from Costing You More

I’ve just been reminded, as someone with multiple sclerosis, how fortunate I am to have good medical insurance. Unlike most other countries, where medical care is a right, in the U.S. that care is a privilege. Here the quality of care and too often the availability of that…

Would You Share Your Info with an MS App?

A smartphone app has been designed to collect lots of information related to your multiple sclerosis ā€“Ā things such as physical and cognitive test results, MRI images, and even genetic data. The hope is that via the app researchers will be able to collect a lot of patient data…

An MS Garden Grows in Derby

Those of us with multiple sclerosis know how difficult it is to describe our journey. Words frequentlyĀ are inadequate for that task. But, at Derby College in England,Ā horticulture students and their instructors have found a way. They’ve teamed up with local MS Society branches to create a 30-foot-by-40-foot garden…

Defining Resiliency in MS and Ideas on Bouncing Back

How well do you bounce back when MS gets you down? An article called ā€œBouncing back again, and again: a qualitative study of resilience in people with multiple sclerosisā€ caught my attention because bouncing back is something I donā€™t do as well these days. I believe resilience means to be…

Taming Grumpy Gut

Many people with MS experience symptoms related to digestion. According to theĀ Pittsburgh Institute for MS Care and Research, ā€œNearly two-thirds of MS patients have at least one GI symptom that persists for 6 months or more.ā€ Some of the most common problems are dysphagia (trouble swallowing), heartburn, nausea,…

How to Survive Summer Heat Intolerance

With summer right around the corner, itā€™s time to start making plans. We all love spending time outdoors during the long hours of sunshine and warm temperatures, donā€™t we? Well, not everyone does. If youā€™re reading this, youā€™re probably living with multiple sclerosis. That…

3 Travel Tips for Easier Flying with MS

It’s the time of year for travel here in the U.S. Graduations, weddings and vacations are on all of our calendars. Air travel, in particular, can be a real pain for someone with a handicap such as multiple sclerosis. Security, aircraft seats and legroom are all becoming increasingly…

Fear the Future? Change the Way You Think

Fear of the future will likely rear its ugly head more often than you’d like when you have multiple sclerosis or any serious chronic disease. It can be difficult to keep your mind from wandering to a very dark place. Worries about how fast your disease is progressing,…

Make Some Noise: The Importance of Concerts

Pull up a chair, kiddos, and Iā€™ll tell you a sad story. Because weā€™re both musicians, my husband and I love going to concerts together. Weā€™re on a budget, so we have to be choosy about who we see and where we sit. However, there is a short…

Cholesterol Medication Shows Promise as MS Treatment

I’ve been taking a statin drug for years to keep my cholesterol low, and it’s doing a really good job. Now, there’s hope that this class of drug also might be useful for MS patients. A major trial in the U.K. is testing the drug simvastatin (used to control…

The Importance of Caring for Caregivers

“Coping with Caregiver Burnout When Caring for A Person with Neurodegenerative Disease: A Guide for Caregivers,” published in the April 2017 issue of the Archives for Physical Medicine and Rehabilitation, is intended to give better insight into caregiver burnout, and what might be…

The Hidden Costs of Multiple Sclerosis

MS is sneaky. It is expert at evading detection and diagnosis, and often brings a host of invisible symptoms that may come and go at random. MS also brings invisible costs ā€” expenses beyond the obvious medications, supplements, assistive devices, and healthcare. I am not talking about externalities,…

About America’s Healthcare Puzzle

There’s been lots of chatter on social media since the U.S. House of Representatives passed a measure last week that’s intended to repeal the Affordable Healthcare Act (Obamacare) and replace it with a new healthcare law. Lots of us with serious medical conditions are: a) worried, b) angry,…

Look What the Cat Dragged In!

Like one third of America, Iā€™m a cat lover. Iā€™ve had kitties in my house since I was a child, often in sets. Currently, Iā€™m the proud parent of two fur babiesā€”Ivan (the tabby) and Baker (the Wegie)ā€”and theyā€™re a great source of joy, entertainment and…

Losing Our Independence Due to Multiple Sclerosis

Losing our independence due to multiple sclerosis is a profound loss. With that loss comes the grieving process and inevitable change. On Grief.com in “A Message from David Kessler,” he discusses the fiveĀ stages of grief: denial, anger, bargaining, depression and acceptance. I have experienced all of these…