Other sites

People with MS and those who love them often feel trapped by the seemingly unstoppable progress of the disease. But the internet is a bounty of information and stories. These are some blogs and sites I read regularly for information and insight.

The Wheelchair Kamikaze: The Rants, Ruminations, and Reflections of a Mad MStery Patient – Marc was diagnosed with Primary Progressive Multiple Sclerosis in 2003. He writes about his life with MS with wit, intelligence, and realism.

The Carnival of MS Bloggers – features a monthly collection of posts from bloggers around the Internet. The site also hosts a bibliography of MS blogs for readers to explore. This is a wonderful resource for anyone looking to read first-hand accounts from patients and connect with others living with MS.

My New Normals - Nicole Lemelle is a former chemist and nurse, and current writer and activist. She works to raise awareness and inspire others living with MS.

Life with Multiple Sclerosis - Trevis Gleason writes short blog entries about his life with MS via the Everyday Health website. As he calls it: An opinionated look at the daily challenges of MS.

The Mighty – a website devoted to facing disability, disease, and mental illness head-on. They are writers, editors, producers, developers and more who share blog posts, stories, and videos.

MS & Progressing

I have Secondary Progressive MS which means, according to the NMSS, a transition occurs from the more inflammatory disease process seen in Remitting Relapsing MS to a more steadily progressive phase of the disease characterized by greater nerve damage or loss. During this phase, relapses become less frequent - or stop happening altogether — and people experience gradual changes in function, with or without some periods of stability along the way. 

When I was diagnosed with MS in 2011, I believe I was already on the way to having SPMS. If I had received a correct diagnosis in the early 2000’s, I think those would have been considered my RRMS years.  Who is to say that a DMT (disease modifying treatment) or DMD (disease modifying drug) taken years earlier would have staved off my disability or not? I often wonder. “What if?” After I broke my ankle in 2010 – which put me on the road to my 2011 diagnosis - my mobility continued to decline. I went from a cane to forearm crutches to a scooter to a power wheelchair within a matter of less than five years.

There is no treatment for SPMS, I take medications to control my symptoms and a variety of vitamins and supplements. Since there are so many drugs for RRMS however, the medical field has become more interested in developing treatments for progressive MS. Some have been met with success.

With SPMS, I feel things are not as easy as they used to be. I have become resigned to the fact that my current state of disability will probably not be reversed, I probably won’t walk again. I am slower. I am weaker. I need more help. I am more easily fatigued and need more time to complete the tasks that I would have found easy in the past.

Now that I am reading this, I realize it sounds like a bit of a downer. SPMS isn’t puppies and rainbows but I am finding ways to cope with these changes, including support resources and finding ways to make work and day-to-day activities easier on me.  

I am also encouraged by research that is leading to possible treatments for progressive MS on the horizon, including remyelinating agents like Anti-lingo and a dozen other promising therapies. I wonder what the future holds for MS.