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Primary Progressive MS: What It’s Like Constantly Living with It

A peek into the life of someone with primary progressive MS.

My column last week was a recap of my journey to a primary progressive multiple sclerosis (PPMS) diagnosis. This week’s column continues that theme by showing a glimpse of what it is like to live with PPMS on a daily basis.

To say that having a disability like PPMS is difficult would be a huge understatement. It is relentless, unfair, painful, debilitating, and most of all, very unpredictable. It never takes a vacation or offers much in the way of relief.

With the array of symptoms that this disease brings it is hard to keep up. Fatigue is a major player in PPMS — not just the physical fatigue, but also the mental exhaustion. I am always contemplating my every step and calculating the safest and shortest route with my rollator walker. It eventually takes a mental toll.

Imagine wanting to jump up from a chair (which I remember doing) and running to the kitchen, or whatever you want to do. Those of us with PPMS know that we are not going to jump or run anywhere — especially not without planning it out before we move.

I try to reserve my energy like it is gasoline in a car’s gas tank, to be used only on things that are a necessity. Having multiple sclerosis drains my tank very quickly, so it is always best if I have my day planned in advance. But even the best plans can go awry and I can overdo it, in which case, I can expect two days of resting to catch up.

My lack of energy coupled with leg spasms and weakness is even more taxing and painful. Plus, it can be incredibly scary, because when my leg has a spasm (whenever it chooses to do so), it can give out on me and I can fall. The only warning I have is a sharp pain and then I am on the floor. So, this symptom is a major safety concern.

Add to that the cognitive issues. This includes having trouble remembering words mid-sentence and things that just happened. Actually, remembering anything at times is very difficult. This “cog fog” added to my other symptoms can make my day very frustrating!

I can experience other symptoms as well, such as bowel and bladder problems, depression, emotional issues, vision and hearing problems — the list goes on. Due to the fact that the protective coating (myelin) on my nerves is being worn away, anything can malfunction at any time.

That is why the symptoms differ so much for each of us with PPMS. Where the myelin starts to corrode, lesions form. When many lesions appear, many areas are affected. You get the picture. That is why PPMS is so unpredictable.

Read on: Primary Progressive MS: What It’s Like Constantly Living with It

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