The MS Rollercoaster

If you check my last post, you'll see that it was written less than a week ago and that Jeanne was doing incredibly well compared to her normal baseline.  But that was then.  Yesterday, Jeanne awoke with a temperature of 104.5, and we ended up at the Long Beach Memorial emergency room.  Today, I'm writing this post from Jeanne's hospital room.  What a perfect illustration of the rollercoaster that so many families are on as they strive to deal with the unpredictability of multiple sclerosis.

When you look at other neurological illnesses, like Alzheimer's or Parkinson's Disease, you find patients and their families struggling against serious symptoms.  But at least they can predict with some certainty what those symptoms are likely to be.  If you meet 10 people with MS, you are likely to find 10 different sets of symptoms.  You're likely to find 10 different rates of progression.  And you're likely to find 10 other families all on the same MS rollercoaster.

Jeanne is doing a bit better today than yesterday.  Once her lab work comes back, we should have a clear idea of what sort of infection she is fighting.  We'll feel some relief.  And we'll wait for the rollercoaster to take its next sharp turn.

Comments

[Dena Loverde]

Hi Jon,

I too, am a caregiver for a MS patient. My husband, Jay, was diagnosed almost 8 years ago.

The roller coaster analogy is perfect. Earlier this week, I came up with an addition to the analogy.

The MS patient is in the first car of the roller coaster strapped in. Many cars back, is the caregiver, not strapped in, and hanging on to the bar in the car (you know, the one that PREVENTS you from falling out?). The roller coaster is moving at high speed and while the MS patient is living the ride, we, as caregivers, are in the back, being thrown about mostly outside the car hanging onto the bar for dear life. We have no view into where the roller coaster is going. The MS patient can sometimes see (they get feelings that turn into exacerbations ) but we can not see anything.

I'm having Jay sketch this out for me. He's an artist and I think I'd like to hang it in our office - for both of our sakes.

-Dena.

[Melissa]

You are both so right. My husband has MS, and the uncertainty and unpredictable nature of the disease is the most concerning to me. We have 3 kids, my husband is working on his doctorate in Education. Once, while working on his dissertation, he got optic neuritis and went blind in one eye. His temporary blindness prevented from working on his dissertation as he got headaches from trying to concentrate with his one good eye. He is now weeks away from finishing his dissertation and now he is having an exacerbation that affects his left hand and arm. I can't help but worry about the future. I work full time already and keep very busy, how will I be able to keep up with everything if he becomes disabled? How do you deal with your anxiety over what the future holds?
Melissa

[Silvia]

I hate MS. I still ask why? Why us? But now I know there are so many of me, and us. My husband was diagnosed 04/2008 with PPMS. I'm scared of the rollercoaster ride, I much rather sit with him in the front, don't want to be alone in the back. This Christmas his dad had a scooter delivered from Costco. A depressing present, but I'm sure one day it will save us a lot of money. It's still in the box in the garage, and I know Curt will fight it to have to open that box.
It feels good to hear from others with the same problem.
Silvia