What to expect when you’re not expecting…


As a seventeen-year veteran MSer, I am sometimes asked to give advice to the newly diagnosed.  Sometimes I am the one to welcome the recently initiated into the fraternity or sorority of MSers.  Questions get posed to me all of the time typically asking the same queries in different forms.  Is MS a death sentence?  No.  You have MS, how do you look so good?  Oil of Olay.  What now?  Hold. 

Then one gentleman’s query put me in a quandary.  He asked: What should I expect from an MS life?  I thought for a moment and came up with this answer.  This is the way that I look at it, and it is my opinion.  My explanation had elucidated our strange medical condition in this simple sentence.  With Multiple Sclerosis you must expect anything and be ready for everything. 

There are a plethora of variables that make planning for MS an impossibility.  Just to give you an idea of some of these issues: age, how healthy you are and your geographic location just to name a few.  Multiple Sclerosis neophytes need to know although there are many similarities there are even more differences.  If you ask any ten people with MS, you will see commonalities in the indications.  However, the impact of these symptoms on their lives can vary drastically. 

People will gladly share their stories and how they dealt with the adversities that they faced.  The problem is that you will not understand until you experience that symptom.  However, even if you have the exact same sign, your body will likely respond differently.

All of that being said focus on several things in your new MS life.  First and foremost keep your bodies moving!  Keep as active as you can by moving anything that you can for as long as you can.  No matter if it is running, walking, swimming or something in between stay in motion.  I always say that if you sit still for too long, you will rust.  A rusty pair of scissors does not work correctly and neither will you.  I went for nearly ten years without moving, and I deteriorated so much that I am currently in a wheelchair.  Learn from the mistakes of others.

Food is life, but the wrong food can be the opposite.  There are plenty of MS focused diets to choose from.  It is more important to pay attention to the similarities of those diets and not the differences.  They all tell you to eat reasonably and smartly.  Portion control is imperative just like not overdoing the unhealthy food.  Although many argue what they look like health and wellness are both critical.

When something unexpected happens, do not panic!   Someone has gone through it before you, and they will deal with it after you as well.  Remember that life with Multiple Sclerosis is the new normal so adapt and overcome.  Do not give up doing things but find a workaround for you.  Wear a cooling vest or carry a notepad for reminders just do not deprive yourself of life.  Take it one day at a time.

No matter what happens, keep a positive attitude and always wear a smile.  When you need help, and you will require help, people will be willing to assist you if you are smiling.  Grumpy Gus’s get a bitter rejection when assistance is needed the most.  Learn your limitations but never give up.  Live your life to the fullest using any adaptations required.  Do not ruin a good today thinking about a bad yesterday, let it go.

Build a stable support system filled with family and friends who are supportive and understanding.  Find a Multiple Sclerosis support group and in that group find an MS buddy.  Stress and MS are mortal enemies so do not let them use your body as a battlefield.  Avoid stress but if you cannot avoid it find ways to manage your stress.  Meditation, music or religion might help.

These are some of the most important facts for those new to MS.  Experience removes fear and builds your MS confidence.  Remember: today you are better than yesterday but not as good as you will be tomorrow.


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