View Full Version : Multiple Sclerosis and caregivers

08-22-2006, 10:33 PM
Hi there. I'm kicking around a YA novel idea in which the main character's mother has multiple sclerosis. Thanks to a friend with the disorder, I pretty much know about the disease itself.

What I don't know about is caregiver's experiences with people who have it, especially a teenager. My friend's teenage sons pretty much stay away from the house all the time to avoid the issue, and when she gets really bad she ends up in the local rehab hospital. But my character is a mothering, old-beyond-her-years type, and so I need to know how someone (adult or teen) would take care of a parent with MS.

So anyone out there take care of someone with MS? Your thoughts, feelings, experiences, etc? Anything technical I need to know? I'm aware that in many cases, it's kind of cyclic, ie, gets better and worse. How does that affect things?


08-23-2006, 08:38 PM
My wife woke up one morning and discovered that she was numb from the shoulders down in 1989. She could not walk and the arms had no control, only feeling.
She called me and I awoke to her describing her paralysis. The next 20 seconds the reality of my possible future swam before me:
*We had an infant whom I would likely have to rear.
*Our great athletic togetherness was likely over.
*An income would be lost.

After 20 seconds I realized that I was being very selfish in my thoughts. The next 5 seconds I made 2 decisions.

Get her to the hospital immediately and…

…make her laugh. That’s what drew us together in the first place.

On the way to the hospital I talked about what a great opportunity this was for me to show the family how great I was, she came back with “I would be dead and they still wouldn’t think you were better than me!” I would snap back with another witty comment.
She was scared to death with the prospect of her new life but except for a good cry the day they “diagnosed” her with MS (quotations added because it is a diagnosis of elimination), we stuck it out together.

Because I was such a bad navigator she swore she would get out of that blasted wheelchair, if for no other reason but to save ankle bruises in malls.

You get the drift of our strategy. It’s the same thing when I was diagnosed with Bright’s disease when I was 9. My Mom was told I was near death and would not last the weekend. She cried, I joked it off. I laughed my way to being totally cured.

We laughed this through too. Within 2 years she was walking on her own. 5 years we played softball together again and 15 years she completed her first Disney full Marathon. She has completed 3 now and training for her 4th.

Any day now we are aware that it could come back immediately and even be worse than before and permanent. It would be a crushing blow but we would get through it again. We are not going to go down easy, at least not without a laughing fight.

09-02-2006, 07:59 AM
I have two friends who have M.S. One has a 15-yo son, who prefers to be away from the house as much as possible. The other has a 13-yo daughter who is absolutely incredible at helping her mom. The daughter particpates in M.S. events all the time and even helps others when she sees they need help. One thing I've noticed is that the husbands of each have the same ways of dealing with it as their kids. Hmmm....?

09-02-2006, 08:07 AM
Thank you both for your answers, they were a big help!