I love research. It was my minor in grad school … even if focused on Education. So I respond to surveys, I talk to the folks that call with questions … and more importantly, I am in an NIH Level 1 Clinical Trial for Primary Progressive Multiple Sclerosis (PPMS). As we say “I’m 1 in a ½ million” living with MS, I can also add, since PPMS is about 10% of that population, thus, I’m “1 in 40,000.”
That said, I’m thrilled to be a volunteer/future staffer for this organization. We will share information, answer questions, suggest books to read … and be as helpful as we can!
Take a look around … and stay tuned for an explosion of stuff from us!
I was diagnosed with Primary Progressive Multiple Sclerosis (PPMS) on the first day of fall 2006. One of the first things I learned was that MS is a disease of the autoimmune system, with no exact known cause and no cure. There were however, injectable disease modifying drugs, DMDs. None of these (the ABCs, then the Abracadabra’s according to my neurologist), were approved for use in PPMS From that day, I wanted to know WHY multiple sclerosis happens to people. I often find that others living with MS are more curious about the disease.
I’m familiar with social media, and actively involved with Facebook and the MSStation project (8 web pages including, research, wellness, book club, author interviews … and on and on)/ However, I am more often than not discouraged to see Facebookers living with MS seemingly using FB groups to ask what seem like minor questions.
My instinct is to go to books and websites that I trust, as a researcher! On that note, included here is a list of 5 of my favorite books about multiple sclerosis, by authors and clinicians I trust. As a bonus, I’ve added a website from the National Multiple Sclerosis Society about Financial Assistance Programs for disease modifying drug expenses.
Multiple Sclerosis for Dummies.
Not makng any inferences or suggestions about the cognitive abilities of you and/or your family and friends. Get a copy. Now. Buy several (used on Amazon?) to share with folks who “just don’t get it.” We’re familiar with the yellow and black books, their format and humor! One of the best books to hand naïve folks who are trying their best to understand you and your illness.
This is my bias of course seeing that it’s my diagnosis. As we’re only about 10% of the multiple sclerosis population, much of the basic research and advice does NOT pertain to us and or disease course. This is what I call my “Yellow Bible” (again, no offense to those who don’t like my use of the word bible). Unlike other MS books/resources, this book includes side bar comments and quotes from people living with PPMS! Get your copy now!
Disclosure, my 15 year marriage is in shambles right now. This book has clarified things for me about my brain and how MS might be impacting and triggering responses that are unusual for me. On the other hand, my husband won’t read it, and is still waiting for me to “be fixed” and change. I too niss “the old me.” I’m afraid she’s not coming back. Grab a journal and answer the tough questions here. Note, this is written by an MSW who is actually living with multiple sclerosis herself.
Is this a Relapse/Exacerbation or “just’ a Symptom?
Although I have never ever in my life experience an MS exacerbation or flare, I see many questions and concerns about differentiating between these 2 issues. Randall Schapiro answers your questions and allays your fears. It’s reassuring to see MS Hug or “bugs tingling below my skin” and find the reasons for and some possible solutions to help! Another critical one for your bookshelf.
Some of us who live with Multiple Sclerosis have no interest in being part of the pharmaceutical industry. Please remember, the availability of disease modifying drugs (injections) and now oral medication for MS is relatively NEW in the disease history. Can you imagine what it was like to have MS before the invention of MRIs?
Dr. Andrew Bowling is the premier expert on Complementary Medicine and MS. If someone recommends a supplement or alternative treatment for MS, I can grab my signed second edition of the book, check the index and see ‘NO do not take Echinacea – our immune systems are on overdrive, do not increase their activity.” Bowling and colleagues have conducted meta-analytical studies and come to conclusions/advice on many complementary medicines and alternative therapies. Another “bible” to keep in your library.
Some say that multiple sclerosis is one of the most expensive diseases to live with. One of my DMDs would have cost $36,000/year (daily injections) without financial assistance. On this site, the National Multiple Sclerosis Society has compiled the contact information (phone and websites) for ALL the Patient Assistancr Programs. Bookmark this one, write a list of your meds, and see if you can decrease your monthly payments!