Stu’s Views on Advising a child about MS

 The information found below is an Opinion only, from Stuart Schlossman, an MS Patient

My Name: Stuart
Schlossman

Age – 64

Multiple
Sclerosis – RRMS

 Re: Multiple
Sclerosis – description to a child  (adults can learn too)

I would begin
by telling them (the children)  the basics about MS. I would ask them to imagine having a dog
and this dog biting the wire and plug that connects to your television. You
would see static or the picture would be lost.    The TV
would be like my brain and the wire is my central nervous system that is
getting damages like from the dog chewing on the wire.

 I would also
ask them to twirl around and around until they got dizzy and asked them how
they feel. Then I would tell them this is what happens to me when I get
vertigo.

 I would ask
them to run up and own on a dirt mound until their legs felt so tired it was
difficult to walk and then I would tell them this is what happens to me during
the day. But that some days were better than others.

I would ask
them to hold a piece of plastic wrap in front of their eyes and then ask if they can
see clearly. Then, I would explain to them that this view is often how I see,
especially on a hot day.

I would ask
them to ‘imagine’ grabbing a handful of tacks (yes, Only to imagine) so they could
imagine the pain felt or like from grabbing a barbed-wire fence.

I can ask
them to ‘Imagine’ being hit with a baseball bat in the legs so they could feel a sudden jolt of pain.  

I would then also ask
them to picture someone holding a pen or a sharp stick to the front-right center of
their head and pushing this or tapping it to their head so they can feel the blistering headaches I get almost
everyday. Or to imagine Walking on Broken glass so they can feel the stinging pain in my feet,

Getting away from pain for a moment: 

 I would ask
them how they might feel to have their favorite toy or game taken away from
them or ask  how they would feel, if they were ‘grounded’ for doing something wrong. They would probably
feel let down or sad.

 I would tell them that sometimes I also feel let down, (depressed), or sad..  And for many who are too fatigued to do things with friends
or family, that this could be similar to a child being grounded (without being able to use their cellphones or other gadgets)..  

 I would ask
that they squeeze each other tightly around the waist so they can feel an MS
Hug.

 I would ask
them to tie heavy sacks to their ankles and try to run and I would ask them to
sit on their hands until they were tingly or Numb so I can explain how many people with MS feel this tingling sensation.

 My gosh
how could I possibly tell you about the things I often forget.. Yes
Little ones,, Everyday I forget to do things. But even worse is when my
brain knows I want to say something but the message is not getting to my
lips…

By the way, Fatigue
is not the same as tired. Fatigue can be similar to a flashlight that runs low on
batteries.

 >>>  When the
batteries are going bad, the light is very dim. When my brain is fatigued, the
shining light inside my brain gets very dim and when this happens, I cannot
think clearly and so, when that happens, it is like the math problem that I
gave you… Understand?  

Also Many
times, people with MS, feeling like the last time they slept was three days
ago. Can you imagine staying awake for three days and trying to stay focused?
It is really not possible.

— These are just
a few of the things I can do with a child or children to get them to understand
a bit of MS  and the symptoms which I often get and which affects many.

——————————

 As for Me: 

 My followers
know that I do whatever I can possibly do in-spite of my condition with having
Multiple Sclerosis for 25+ years. Travelling around the country on a regular basis bring needed educational programs about MS resources, medications and more, to various logistics.

I tell anybody
who wants to listen that I taught my MS long ago that it needs to live my life and not
the other way around. If it does not like this condition then get the Blank out
of here.  Yes, I understand it
will show it’s ugliness, But I will not play it’s game.

I have too much
to do for others affected by MS by providing educational programs to help
people learn of the many resources and information that is available so they
too can adjust and live better, with their MS. For / with MS
Views and News, I travel the USA providing these educational opportunities to
MS patients and care partners.

My joy comes
from seeing people with MS learning and living content lives. Other joys for me
include my travels and what I can accomplish. As well as seeing family and
friends.

Once upon a time:
I was once known as an arrogant, abrasive obnoxious salesperson.
— These days, I am just known as an arrogant, abrasive, obnoxious HUMANITARIAN.

I hope this helped..  Thank you again!! 

 Stuart

 

Having some fun, mixed with my travels