Explaining MS

Here is my biggest parenting beef with MS. 

It changes too much.

Now, I don't mean how it changes my life or parenting style. I mean how I can be "okay-ish" one minute and later I can be "not-okay"

 If it is hard for me to deal with the surprise of when and how my body will work and feel how can I prepare a little kid for what is in store?

Many days when I am home, my get-away sticks are fine. Ya, it's rare that my right foot and lower leg feel fine, but very often at home my mobility seems close to my current baseline. Once I'm out and get going the fatigue sets in and then the pain. 

Many days when I am home, as my mobility improves my mental capacity seems to deteriorate. My word finding get worse and my short term memory crawls to zero. 

I may be able to walk to the kitchen fine, which is a good thing because I'll have to go four times before I remember what I went in there for.

Parenting with MS.  How to explain Multiple Sclerosis to Little Kids 

How do you explain to an adult, nevermind a child, that MS doesn't follow a simple track?

Fluctuations which are sometimes called pseudo relapses or flares are part of MS. What many people don't understand is that these fluctuations can be throughout a day. Often environmental factors can impact how I am feeling.
Standing outside in the cold: I feel pretty good. So why do I bring my cane or crutches? Because if where I am going is hot inside the quick temperature change can make me unstable.

It's common for Multiple Sclerosis symptoms to come and go.
What is not common is people, adults or kids, being able to understand these fluctuations. The changes are most likely related to impaired electrical conduction through chronic multiple sclerosis scars or old damage. The fluctuations can also be due to an inflamed lesion that is more aggravated by my fatigue or a change in core temperature. Other things that are going on within and outside of me, both physically and psychologically, can bring on symptom fluctuations.

So beyond the visibly obvious (mobility) there is the mental aspect.

I love the explanation in WebMD (link)

Here are two of the Signs of Impaired Thinking in MS that I relate best to.

  • Struggle to find the right words to say
  • Forget things you need to do or tasks already done

There is nothing weirder than forgetting you already did something. It's way worse than when you forget what you are planning to do.

Here is what we know: If lesions develop on parts of the brain that process memories, it can lead to memory loss. Memory loss is one of the most common cognitive changes in people with MS. (Healthline)

Healthline.com had some different potential signs of memory loss. My favorites are:

  • forget where you put your car keys, phone, or wallet
  • forget to complete daily tasks
  • forget where you’re going, when you’re driving or walking
  • have difficulty finding the right words for everyday objects

So beyond finding the right words conceptually there is the issue that sometimes speaking itself can be a challenge. When I am fatigued and my word finding get worse so can my stutter. It's actually pretty common for people with MS to experience difficulty speaking. Interviews with Selma Blair have brought light to it.  Most people would never even notice my speech impediment. I do because it comes and goes and when I am fatigued or having problems with word finding it's a lot of work to control. It is likely at some point as the Mini gets older she will start to hear it. But for now it seems to be for my ears only.


How to Explain MS to Children

I love the book "Some Days" by Julie A Stamm. It really reflects so much of my life with my daughter.
I just got to story and I'm glad read it the first time alone because it mentions chocolate chip pancakes- which made me cry. 

Order your copy of "Some Days: A Tale of Love, Ice Cream, and My Mom’s Chronic Illness" by clicking on the book cover to the left. 


Now I don't know if I have a good answer for this dilemma for daily life but so far here is my approach:

Explain as little as possible using words about how I'm feeling. I have decided to let my body just show her what she needs to know. She doesn't need to know about my level of pain or numbness.

  • The Mini sees that sometimes I walk funny, use a stick or forearm crutches. I don't need to get into the details on why. She knows I have something called MS. She knows she can not catch it. 
  • I forget things. She reminds me. All. The. Time. She gets that I may go to get "it"  3-4 times before actually getting whatever "it" is. I don't need to try to explain about the issues in my white matter every time I forget something.
  • I drop things. Many things break. She can see the broken or dented thing. She doesn't need me to break it down for her. She knows to move away from broken things that could cut her. She also knows sometimes I want help. And sometimes I don't. She knows I will tell her.
  • She knows sometimes hair brushing and braiding takes a long time. She doesn't seem to care that it's because my hands aren't working. She seems to like the extra time being my sole focus.

 This is not to say there aren't teachable moments. 

I do take advantage of times when I think she would benefit from an explanation, but those moments are pretty few and far between.

"What's wrong with your mum?"

I hope one day she will say...

"She has MS. It means she has holes in her brain. But she is a great mum" 

Because that is all I can hope for.