The role of friends and family when it comes to tracking MS symptoms

Nurse Catherine Asks…

Have you ever had someone notice that you were experiencing symptoms before you did? Maybe they noted that you were misplacing things more often, or having trouble finding the right words. This can be very helpful. Your friend or family member has given you important information that you can bring to your healthcare provider. Have you ever had a friend or family member notice a symptom before you did?

Stewart Answers: 

November 19, 2018

Tracking multiple sclerosis symptoms and progression can be very difficult. Sometimes a change in how you’re feeling is dramatic and impossible to miss. Unfortunately, I’ve found that many of my symptoms were much more subtle, and crept up slowly, so I wasn’t immediately aware of them. I unconsciously compensated for small changes I did not notice until things were more severe. That’s where others come in. 

My family and close friends all know I have MS, and my personal set of symptoms, and we occasionally talk about my condition. The subject isn’t taboo, but it doesn’t dominate the conversations either. It’s a fact of the life we live, but my life doesn’t revolve around MS.

When I was going through the Veterans Administration disability process, I was surprised to hear just how much weight a statement from one or more family members carried. When I asked about it, one of the VA representatives pointed out that someone can fake it all day at work, but the family sees the person when their guard is down and sees the impact. That has proven true for me.

My wife is my best observer and often notices the signs that I’m beginning to overheat or overexert myself before I recognize them. She was also the first to notice when I would repeat myself or pause to search for the right word. When she sees a behavioral change, she sometimes comments on it. The cause is often something other than MS, but I know she’s watching. Several years after I first showed symptoms, but before the diagnosis of MS, the “foot drop” in my right leg seemed to be shifting to my left leg as well. She also noticed that change before I did.

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