Over on MultipleSclerosis.net, we recently shared an article by Dianne Scott about fighting the secondary progressive stage of MS (SPMS). Her words generated a lot of discussion in our community about how MS looks from the outside compared to how it can feel from the inside! The many thoughtful responses added so much to the article and the conversation about life with MS that we decided to compile some of the comments and share them here. Continue reading
If you live along the east coast, like most of us do here at MSAA, signs of spring are showing. We have battled another harsh New England winter and are looking forward to the first signs of spring. Spring has always been my favorite time of year; to me spring flowers represent resiliency. The tiny buds fought the tough winter to show their beauty to the world once again.
“Resilience is very different than being numb. Resilience means you experience, you feel, you fail, you hurt. You fall. But, you keep going”. — Yasmin Mogahed
Having a diagnosis such as MS can inspire and drive an individual to find the resiliency that is buried within. For those with Relapsing Remitting MS, the ebb and flow of life between relapses is proof of the resiliency that exists. For those with more progressive forms of MS such as Secondary Progressive MS or Primary Progressive MS, the daily adaptation and adjustment to a new lifestyle is also proof that resiliency exists. Recognizing and acknowledging that change isn’t always a bad thing and learning to be OK with the new normal is also proof that resiliency exists in MS.
Share the ways you have remained resilient with MS in the comments below.
You may have heard of one of the latest trends in social media discussion forums, called “Ask Me Anything”, or “AMA”, popularized by websites like Reddit. An AMA is a common chat topic or general discussion forum thread in which people ask someone who is an expert in a certain area questions relating to his or her life or expertise. Last month, MultipleSclerosis.net hosted our first AMA event on our Facebook page, and it was amazing! The event was hosted by our team of moderators in honor of MS Awareness month, with the goal of providing a set time where members of our community could ask our team anything about MS symptoms (our chosen theme for this particular event). The results were tremendous! Our first AMA prompted over 240 posts in just one hour – including questions, comments, and replies – which averages out to about 4 posts per minute!
Though the main theme of the AMA was MS Symptoms, a wide variety of topics were discussed, including rights at work, discontent treating physicians, how to provide support to relatives and loved ones who have MS, how to manage fatigue, what it means to have secondary progressive MS, and what to do upon first receiving an MS diagnosis.
Our moderators and team answered the community’s questions based on personal experience as well as the wealth of articles on MultipleSclerosis.net. Here is a brief summary of some of the topics that were discussed!
I’m unhappy with the treatment I’m receiving from my current neurologist. One place to start is by taking a look at a registry of MS experts here. The National Multiple Sclerosis Society may also be able to provide recommendations for practitioners in your area. Additionally, attending patient meetings can be very helpful for coping with many aspects of having MS, and they also serve as a great source of information like names of good doctors.
What can I do to manage my MS fatigue? Believe it or not, exercise actually helps some people with MS manage their fatigue. – It stimulates certain chemicals in the brain to make us feel better. Working full time while taking care of one’s family is exhausting for MSers. Another idea would be to try meditation or yoga for its calming and healing effects.
What are my rights at work with regard to disclosing my condition, and receiving the support that I need? The ADA requires an employer to provide assistive equipment/aids so someone who is disabled can continue doing his or her work. It also prohibits the employer from firing someone for being disabled, but does not protect you from termination if the employer cites other reasons. It is also important to contact someone in your Human Resources (HR) department if your company has one. Those who work in HR are experts in this subject. Our expert, Cathy, also wrote a great article about helping those who are disabled look for work.
How can I be helpful to a loved one who has MS who lives far from me? One of the best ways to provide support is to be there for loved ones when they need to talk, and show an interest in how this is affecting her or her life. Ask her how she’s doing, and listen to her response.
What is secondary progressive MS? Secondary progressive MS is a type of MS. While relapsing-remitting MS is the most common type of the condition, secondary progressive MS impacts many in the MS community. Here is some more information on SPMS.
What does it mean to be in remission? Being in “remission” doesn’t necessarily mean that your symptoms completely disappear (some people will return to feeling exactly as they did before the exacerbation began). Stephanie wrote a very comprehensive article on relapses and remission in her MS 101 on understanding relapses.
Where should a person who was just diagnosed with MS start? You should start with a request to see a neurologist– preferably one who specializes in MS – and have a complete workup of your history and an MRI. Unfortunately, it can take a long time to find answers.
We truly appreciate all of our community members who participated in our first AMA, and of course our amazing team of moderators who were feverishly responding to all of the questions during a very exciting hour! We will definitely be hosting more AMAs in the future, so we will keep the community updated when we have the next one scheduled!