It’s multiple sclerosis awareness week again and time to spread knowledge and news about this life-altering condition. Living with it can range from being a small nuisance to being a great daily challenge. No two cases are alike and no one patient presents the entire scope of the disease. Those looking in may assume that a mild case represents the case for everyone, or that a severe case– such as Annette Funicello’s— is the norm. Not so. We are all different in terms of physical symptoms, although we are all united in our general feelings, fears, hopes, and knowledge about multiple sclerosis. Please take the time this week to become aware of what multiple sclerosis means and how it impacts patients. Althought the ideal is to be aware YEAR-ROUND.
*For information on MS Awareness Week, visit the National MS Society.
*For more information about multiple sclerosis, read MS Defined.
I’ve been busy with some new contract work and so I’m just dropping a note to report a few of the latest happenings in the month of February. Be well and please hope for an early spring!
Jen
Joan’s MS Chat Room this Friday, February 22nd:
Join Joan’s MS chat room this Friday, February 26th, from 7 – 9 pm Eastern Standard Time. Log into the chat from Joan’s blog A Short in the Cordby clicking on the coffee cup in the right margin of the homepage. Always fun and not always reverent, the chat is for anyone who would like to join (not just Delaware area MSers.) The topic this session will be “information exchange”, so if you have any news, tips, or happenings you’d like to offer (or receive), come out and join the discussion. All from the comfort of your home.
Latest about Prospective Oral MS Disease-Modifying med Fingolimod, now called Gilenia®:
Novartis International AG, the pharmaceutical company who created FTY720 or fingolimod, an initial oral disease-modifying MS medication, has been given priority review from the U.S. Food and Drug Administration, due to the drug’s potential for multiple sclerosis. Novartis petitioned for FDA approval in December of 2009, and priority review speeds up the process– if the drug is seen to be safe for use– to six months or less. At the same time the FDA will carefully evaluate whether FTY720 or fingolimod should require a risk management program to coincide with drug usage. For more information about this oral medication, see the National MS Society’s news piece.
First American Study of Venous Insufficiency (CCSVI) in Multiple Sclerosis Patients Intrigues and Spawns Further Research:
This topic I find fascinating: the idea that MS patients have an insufficient flow of blood leading away from the brain, causing abnormal flow patterns and neuron damage within the brain. My thoughts are still murky about this topic and I’m not completely convinced of the validity of the idea, but I’m happy to see that the University of Buffalo has and is continuing to study the topic. They’ve performed a large study with MS patients and healthy control patients. Ultrasound venous Doppler tests were performed and a significant amount- over 55%- of MS patients were seen to have the vascular anomaly compared with about 22% of healthy individuals. These findings are prompting more research into this CCSVI phenomenon. The U of Buffalo has had the first large study after the idea was initially tested by Dr. Paolo Zamboni in Italy. For more information about this cutting-edge research, see the University of Buffalo’s news release.
MS Strength’s Fundraiser for the MS Society Scholarship Program is Soon to Hit $100 (AGAIN):
This is my own little project and if you glance to the upper right of the homepage here, you’ll see that the funds for the second donation are now over $95. Thanks for your help and for supporting a great cause: EDUCATION. You can read about recent recipients of the MS Scholarship fund by accessing the MS Society’s scholarship page.
YES! It’s hard for me to believe it myself, but I was finally enticed by a fellow classmate from high school. I learned about our common disease through, of all places, FACEBOOK. YES!
I wasn’t sure if I’d ever join such a group: my long road to diagnosis made me settle slowly into the idea that I probably had multiple sclerosis. I wasn’t hit over the head with a drastic flare-up and suddenly changed: there was a slow progression with attacks increasing in severity and duration over the past 11 years. When I was actually diagnosed, I was going through a downward spiral of ever-decreasing employment and an uncertain future of disability benefits / no satisfying career. The last thing on my mind five years ago was to join people face-to-face and keep from bursting into tears.
My mom and I actually once attended a seminar (given by my honorable neuologist) for newly-diagnosed patients. I was in such a slump at the time and I could barely move my limbs as I shuffled, mid-relapse, into the meeting where pharmaceutical reps hawked their wares—pens, writing tablets, mouse pads, water bottles, fanny packs— and a nurse handed out a poem about what MS was akin to: believing you’re going to fast-paced, glamorous Paris and being rerouted to Bavaria. Both are great, but different. And the subtle beauty, slower pace, and depth of Bavaria becomes “the road less traveled.” Well then and there I burst into tears and made my mom get up so that we could leave. I think I might have frightened all the NEWBIES! I can laugh about it now, but at the time I was too neck-deep in my own concerns and depression and anger to want to share with others or be a source of comfort and understanding for the rest of the group.
Since being diagnosed, I’ve finalized my disability case and have found a steady– albeit slower– pace with satisfying volunteer hours, a class or two, and some freelance writing work. Things have stabilized both physically and mentally. I’ve gained insight from a social worker and have made strong bonds with online support networks. And yet I’ve had the ever-increasing need to meet others in person to support, be supported, educate, be educated, laugh with, and occasionally commiserate with. The craving to be in an ongoing group setting where I can steadily grow with other MSers. Little did I know that this need would be met with a local in-person support group through the MS Society. And that I would learn about it through a fellow classmate on Facebook. Life is STRANGE.
I joined the group in November of 2009 and we had a Tai Chi instructor (a patient’s mother) who gave us simple poses and breathing exercises to incorporate into our daily routines. We also spoke of Thanksgiving recipes and what we do for the holidays. In December the group met at a Chinese buffet and we spoke about the new concept of CCSVI. Was it a lark or would it get further research? And then this past January we met and just talked for two hours– no instructional demonstration or specific agenda. Just talk. NICE. And I have to tell you that because I’ve become emotionally and physically ready to face my fears, I have been met by a bunch of people laughing and kvetching and sharing and educating and not ONE moment of it has made me want to burst into tears.
