Brain donation for multiple sclerosis research optimizes the chances that a cure might be discovered. It might result in a vaccine or other preemptive strike to prevent the disability from starting in the first place. As addressed in a previous column, there is a shortage…
Multiple sclerosis damages human brains, so MS researchers often study mice brains. How can multiple sclerosis be cured or prevented without studies of human brains? Researchers need the anatomical bequests of MS brains. Harvard Brain Tissue Resource Center Harvard University specifically collects and studies brains (and brain tissue),…
Accessible housing is not optional for people with disabilities. Poverty and disability too often combine for too many people. It is one thing to know this double whammy exists intellectually. To see the impact in a person packs a visceral punch that cannot be denied. Think of how profoundly…
My disability rights activism includes housing issues. Affordable housing gets a lot of attention (no solutions, but attention, at least). Accessible housing, not so much. Like the invisible symptoms of multiple sclerosis, the need for affordable ACCESSIBLE housing remains hidden. Accessibility needs to be part of the dialogue I…
Catheterization training in the hospital did not prepare me for how to manage on a daily basis. In my last column, I described how I ended up in the hospital unable to urinate at all. In this column, I will cover more details about what I learned along…
Catheterization was one of my biggest fears when first officially diagnosed with MS in 1994. As the years went by I thought I might be one of the few patients who do not experience malfunction in the urinary system. Then, in 2012, something changed. I went from having to…
The casual remark, “You seem perfectly fine to me!” bothers me (and others) because eligibility for 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…
What makes housing accessible? I thought I knew all of the features that would make a dwelling accessible. Turns out I didn’t. The Department of Housing and Urban Development report on housing stock in America has a table that covers an extensive range of…
I now introduce myself as a disability rights activist. I began to pay attention to local politics and related activities last fall. Our city redevelopment plans are charging along, without any city staffer to pay attention to the needs of the disabled. As such, I’ve been making the…
Multiple sclerosis causes debilitating fatigue. The following photographs show, without censorship, what my fatigue leaves undone. The homes of everyone I know have living rooms without sweaters tossed over the back of chairs. Their floors are not an obstacle course. They do not have piles of mail, notes, drills,…
You might think that the Fair Housing Act required multifamily buildings to have elevators, but no, it doesn’t. A multifamily dwelling of four units that does not have an elevator is not required to have one. However, the ground floor units must be fully…
The ABLE Act improvement bills were reintroduced into Congress this week and referred to committee on April 4. The bills died in committee in 2016 before an active campaign could garner enough attention in that election year. I urge all readers in the U.S. to call your representatives and senators to encourage them to…
Being disabled by MS does not have many advantages. One — free city street parking in California — is likely to end soon. In the rush to garner parking revenue, though, the lack of concurrent discussion about providing dedicated handicapped parking (DHP) is troubling. The widespread abuse…
In pursuit of an answer for breathing difficulty The MRI of my cervical and thoracic spine showed no active lesions last week. That was good news. Other…
Fatigue is the bane of my existence. Clutter qualifies as my lifestyle. If I can’t see something it may as well be lost. I spend about 50% of my day trying to find things I have put “someplace safe.” The other half I spend looking for something I just had…
Lost in the delights of the library; 10 minutes over meter limit Yes, they chalk-marked the tires and I got a ticket. I was furious. Once again,…
When the Americans with Disabilities Act was signed into law in 1990, there seemingly were as many opponents as there were proponents. All these years later, the standards and expectations of that landmark legislation have become second-nature in mainstream America. Concerns about costs and consequences were…
There are very few days left this year. But in order for the amendments to the ABLE Act not to die in committee, they need to be brought to the floor for a vote. (If you need a refresher on the ABLE Act and pending amendments, I wrote about them in…
The National Disability Institute manages the website www.ablenrc.org that has good information. I watched all the “webinars” and found them informative. A new one is going to be broadcast Nov. 15, 1:00-2:30 CST (event number 660 742 928), and likely will be archived with the rest of the webinars…
ABLE Accounts and Amendments In my previous column, I introduced the exciting new program for people with disabilities, called the ABLE Act (Achieving a Better Life Experience Act). The final bill, signed into law in 2014, deviated substantially from the original proposal and that needs to…
Disability from multiple sclerosis develops, on average, within 10 years of diagnosis. Financial catastrophe was often the consequence, until Congress passed the Achieving a Better Life Experience Act (ABLE Act) — signed into law on Dec. 19, 2014, by President Obama. This act allows you or anyone to…
In a fair world, reading books would burn the most calories, eating ice cream would be chock-full of antioxidants and vitamins, and no one would have multiple sclerosis. But, like many other people, I have MS and have to live with fatigue, cognitive issues, trouble walking, and so much more…
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