By Matt Cavallo
I have been living with Multiple Sclerosis for eight years now. I have not had a major relapse since 2010. Today, I am living the life that I always wanted despite having MS. I am able to work fulltime, have a loving home life with my wife and kids and participate in activities like coaching my son’s baseball team. One of the reasons that I believe I am doing well battling this disease is because I am always seeking to increase my education and understanding of the disease.
Understanding Multiple Sclerosis and all the available options for chronic illness management is paramount to being successful despite having MS. Now, more than ever, the landscape of available options is changing due to advances in medicine and tireless research. Educating yourself on the MS pipeline will make you better equipped to continue your fight.
So, where should you go for resources? Your first and best resource is your neurologist. Each MS patient is different and your neurologist knows your story better than anyone else. I see a neurologist who specializes in Multiple Sclerosis and stays up to date on all the latest MS breakthroughs and research studies.
Second, get involved in community events. Patient education events are held all over the country and have excellent information for patients. For example, the MSAA has a calendar of community events. Other organizations like the National MS Society or pharmaceutical companies also hold similar patient educational events.
Third, seek out evidence-based printed material. The Internet can be a great source of information, but how do you know that what you are reading is coming from a credible source? I frequent support groups on Facebook, Twitter and other online outlets, but how do you know that the information that you are receiving in those groups is valid? Sadly, there is a lot of misinformation on the Internet and social media sites. Listening to advice from unreliable or irresponsible sources can actually be detrimental to your health. My favorite online reference for MS is Healthline.com, “What do you want to know about Multiple Sclerosis?” This is a one stop shop to get high level information on the cause, types and treatments for MS.
Another publication that I love is The Motivator. The Motivator is published twice a year by the MSAA and covers vital issues for people living with MS. You can have the print version of The Motivator mailed to you or read it online.
Staying educated about Multiple Sclerosis will put you in a position to live well despite your condition. Taking advantage of the resources available to you will ensure that you are up-to-date with the latest, most accurate information. Establishing an open, honest and trusting relationship with your neurologist is vital to your overall health. They should be your go-to before making any health-related decisions. Patient events and literature can provide you with useful information as long as they are from credible sources. If your resolution for 2014 is to take control of MS then it all starts with educating yourself on how to fight the disease.
Happy Holidays Everyone!
Resources
http://support.mymsaa.org/site/PageServer?pagename=Calendar_of_Events
http://www.healthline.com/health/multiple-sclerosis
https://mymsaa.org/publications/motivator/
*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/
I just had an MRI SCAN yesterday and found out that you can help by paying it in full once a year. I went to Hope in Vero Beach. I had the MRI there. And the tech that was doing it told me about this. I have Medicare and am disabled. I’ve been out of work four years.
I also was wondering if you can help me find out about on how I can get an air conditioner because I live in Vero Beach and of my condition I need one. The one we have is on its last thread. They told me it will cost $7000.00 which I don’t have extra money to sign up for another loan. I know that MS associates can’t help me in this but wondering if you might be able to get me advice to where I should go to check this out. Thank you.
Lisa,
Thank you for your comments and inquiries. We do have an MRI assistance program here through the MSAA, but unfortunately you would have to apply for the program’s assistance before having the MRI test completed. For more information about the program and other resources for your inquiry of air conditioner assistance, you can contact the MSAA Helpline at (800) 532-7667, x154 to discuss your inquiries further. Thank you again.
Lisa- one of the best things that happened for me re Heat and a/c was learning that power companies (LADWP, SCE) offer assistance to people with MS. You print the easy form from their website, complete it, have your doctor sign it…and send it off. Within 1 or 2 months, you’ll see a drastic improvement to your power bills. I know it helped me SOOOOO much this past hot, hot summer!