"You Look Healthy" Yet MS Impacts Our Lives
Oh my, we have all heard the “You have MS? But you look healthy!” And oh how that so bugs so many of us. I know we have all heard those words and wished we were healthy! I know how irritating this is, yet MS can be considered an invisible disease for a reason. For most of us, MS hides behind our day-to-day business and for some, it is very apparent.
MS misconceptions: Take a look at me
I am a mix of, "something is going on, he has a cane" and "WOW he has an issue." Primary progressive multiple sclerosis (PPMS) does play with me. I have great days, at least for me, and days that are a challenge to just walk to the mailbox and back home. Yep, an amazing two blocks and back. I’ll share how I deal with the day-to-day MS issues I face and, yes, how a laugh or just a smile can help ease my frustration.
What’s the impact you ask?
That is a great question, and I had to give this a lot of thought. Like all of us, we keep adjusting to our new normal day in and day out, and just keep moving on down the road.
The International Journal of MS Care conducted a survey of 1075 MS patients in 7 countries. The survey asked patients about the impact MS had on their day-to-day activities. Forty-two percent of survey participants indicated that MS had worsened their ability to perform daily tasks over the last 2 years. Additionally, fifty percent indicated their MS symptoms of poor balance, fatigue, coordination, and lack of sleep were their main challenges.1
Managing my daily PPMS symptoms
In my case, I have a host of MS symptoms to deal with daily, and with PPMS, it is a continual progression. Let’s look at what causes the most impact on my day-to-day activities and how I try and mitigate my lack of functionality.
The number one challenge is dealing with my poor balance or gait. Earlier in the day is best and it begins to worsen as the day moves on. I think the worsening balance is due to becoming tired as fatigue kicks in around mid-day to early afternoon. There are several ways I try and mitigate the risk - by using a cane, walking slowly, and getting up slowly. Not doing those things increases my risk of falling.
My next challenging symptom is weakness in both lower legs along with neuropathy. Dealing with muscle weakness is a three-fold approach. First, I take medication, Amprya. I also lift weights and ride a stationary bike. Combining the three helps to keep my legs stronger but doesn’t eliminate the weakness.
Unfortunately, there is no easy answer for my neuropathy other than paying close attention to the walking surface. With no feeling in your feet and without looking at the surface, your mind has no idea if it is level, slanted, smooth, or rough. This is another fall risk for me.
The third challenge is a combination of fatigue and cognition issues, which for me, are tied together. As I become more fatigued during the day, my cognitive challenges increase. I will say fatigue is a bigger challenge. Although at times, like some people with MS, I’ll go into a room to get an item for which I can’t remember what I was looking for. The way I try and mitigate this issue is to rest when needed, eat healthily, and try to sleep seven to eight hours at night.
My fourth challenge is also a combination, of foot drop (right leg) and my right leg having a mind of its own. "Mind of its own?" you ask. Yep, my brain says "lift, walk forward" and my leg says “nope isn’t happening." I either trip, fall, or just stop moving forward. Foot drop, as many know, is your leg doesn't lift and your toes just drag on the ground. The only way for me to avoid this is by concentrating on each step to avoid falling. There are several devices that you can wear that help with foot drop.
These are a few of the MS symptoms I deal with day-to-day. Like most, there are also the fun issues with spasticity, vision, hand coordination, yep, that zip-bag fun, hearing, speaking, swallowing, heat cold sensitivity, bladder, and dizziness.
Let’s now finish with a laugh and a thank you
As mentioned, I enjoy that fun time of going into a room for a specific item or task. Sometimes this isn’t an issue. Other times, it is a true adventure, and most times it’s a comedy act. Yep, that look of, 'Why am I here?' or, a 'Hi, just dropped in to visit with you.' Then, back to where you started and you suddenly remember what you were looking for. Ah, you can only smile, laugh, and know you look so healthy.
Thanks again for taking time out of your busy schedule to read my article. I look forward to hearing from you and how you manage your MS. Through sharing our journey with others, we can learn different approaches to improve our daily lives. Please pass on a little kindness to those you meet. You never know, you might change someone’s life.
Have you taken our 2023 In America Survey yet?