Primary-Progressive MS Ask Me Anything – A Recap

Last week, MSAA held its third and final Ask Me Anything session of MS Awareness Month 2018!  Focusing on the topic of Primary-Progressive Multiple Sclerosis, MS Expert Steven Bromley, MD spent one hour answering 19 questions from our Facebook followers.

Some of the most popular questions from the AMA with Dr. Bromley include:

  • Is secondary progressive MS treated differently than Primary-Progressive?
  • What is the feedback from any of your patients who have now had their 6 month full dose of Ocrevus (after already having the first 2 half doses 6 months prior)?
  • Why does it hurt so much when I walk?
  • Is B12 injection helpful for MS fatigue?

Find the answers to these questions and many more on MSAA’s Facebook page or on the official transcript.

Share

Healthy Living with Primary-Progressive MS

It’s hard to believe we are headed into the last week of MS Awareness Month.  This week we will be focusing on Healthy Living with Primary-Progressive MS.  I know sometimes you may feel overwhelmed and discouraged by the lack of medical advances for PPMS patients.  Please know that according to MSAA’s website, MS research and medications have been making leaps and bounds over the past few years.  While scientists may need several years to accomplish such large goals, today’s approved drugs for MS are effective in slowing down disease activity for individuals with relapsing forms of the disease. This has been a dramatic step toward a cure.  Plus, with studies now being directed to PPMS as well, researchers believe it will only be a matter of time before individuals with PPMS may also have access to several effective disease-modifying treatments.  One medication — Ocrevus™ (ocrelizumab) — has been approved by the U.S. Food and Drug Administration (FDA) for the treatment of PPMS as well as for relapsing forms of MS.  Ocrevus was made available to MS patients starting in 2017.  MSAA’s website has several articles about this new medication and we recommend you talking to your doctor to see if this medication could work for you.

Outside of medical advances, it’s also a good idea to develop healthy habits to combat MS.  Taking care of your overall health can improve your quality of life.

Here are some basic tips for a happier and healthier lifestyle:

  • Choose a diet rich in nutrients and vitamins.
  • Get regular exercise to help strengthen muscles.
  • Practice gentle exercise programs like tai chi and yoga to help with balance & flexibility.
  • Join a support group
  • Talk to family and friends about what you may be going through
  • Stay positive

Additionally, some people find that massage and mediation help to relieve stress and anxiety.  Assistive devices that can help you maintain your independence and freedom are important too.

Also, it is important to stay current on new developments in the MS community.  It is recommended that you educate yourself and join organizations that can provide you with information about PPMS and MS medical advances. One such organization is the Progressive MS Alliance, http://www.progressivemsalliance.org/

Finally, please join MSAA and Steven Bromley, MD for a live “Ask Me Anything” event exploring Primary-Progressive MS on Tuesday, March 27, 2018 from 6:00 – 7:00 pm Eastern. This online event will be hosted on MSAA’s Facebook page so please follow @MSassociation on Facebook and log in for the AMA on March 27, 2018 at 6:00 pm Eastern.

Share

Spring Resiliency Reminders for MS

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.

april blog pic

“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.

Share