The Life Well Lived

On some days, a single rainbow just doesn't say enough. This day ordered a double. — On some days, a single rainbow just doesn’t say enough. This day ordered a double.

This past week, my family and I went to Jamaica, to FDR which is our favorite family resort (for what it worth, TripAdviser.com has had them as the top family destination in Jamaica for years). For a family with medically fragile children, this place is a life line. Their nannies take excellent care of the medical and non medical children, and the resort is the perfect size. It’s big enough the parents can do things without the kids and small enough parents and kids can find each other whenever needed. We went last year, and we could not wait to get back this year. It’s the land of double rainbows where the pots of gold are smiles and free moments with spouses.

We were a little worried when the passport request for K was denied 12 days before we were to leave. However, the Maryland Department Social Services (DSS) office in Baltimore city came through in spades. We called our worker when we got the package returned to us Saturday. Sunday she came to our house and picked up the package. Monday afternoon, she brought the package back to us with the requested paperwork signed by a judge and notarized and other paperwork approved by DSS lawyers to meet the requirements of the State Department’s letter refusing the first application. For all many rightly bemoan bureaucracy, Baltimore DSS did well by us to get the passport reapplication accomplished quickly.

When I look back, I cringe thinking how much K would have missed out. She had her own nanny on the trip, and she thrived. People were amazed after the first day whenever we said she had problems seeing. We all watched as the first day we had to tell her “step” whenever there was one upcoming, but she quickly memorized the place and took off. She loved the pools, the beach, and even the water-slide. Watching her go from scared of sand to crying whenever it was time to go back to the room was a joy. I have never seen her so happy.

As for the rest of us, we got what we wanted too. Whether it was A getting a group of adults (the nannies) to play Parcheesi, O getting to hunt hermit crabs and play Foosball, or J and I getting to have quiet dinners alone to reconnect, we all got a much needed break.

That’s not to say there weren’t bumps along the way. When are there not? I can not for the life of me explain why A loved the water slide on alternating days with fear being the dominant emotion every other day. I still have no idea from where our kids drew their limitless energy rejecting sleep half the nights there.

However, the good days were so good, and the ability to rest and relax let me enjoy physical activity levels I have not had in years. When a day can start pushing K on a 5k run through the hills followed by a longer bike ride after breakfast, then some thing is going well. To have both of those things not tire me out for the rest of the days activities is an awesome testament to the value of the workouts I do most days at work and the efficacy of Tysabri thus far in controlling the physical symptom progression of my MS.

I liked our date dinners on pier. J and I rarely get time to go out alone. Thank you FDR.

After years of reading about MS, I found myself unable to answer a very basic question. What exactly is attacked by our nervous system in MS? As I was trying to define how MS attacks, I realized I didn’t know the answer to a very basic question. With MS, does our immune system target our nerves or “just” the myelin sheaths? I’ve used this for a basic understanding for years: http://www.ms-gateway.com/my-life-with-ms/introduction/what-is-ms-179.htm

The link says, “demyelinated axons, however, cannot conduct electrical impulses efficiently. When nerve fibres have been stripped, i.e. have been demyelinated, they may begin to “short circuit” or fail to properly transmit signals within the nervous system. Thus, when myelin sheaths are damaged, impulses are slower than they used to be. Messages then have to be passed on along the entire length of the nerve fibres which is much slower than if impulses could still jump from node to node.
Transmission is slowed or even blocked.”

I was then looking at http://www.unm.edu/~jimmy/myelin_sheath.jpg which gives a great graphical representation of the myelin sheath and a cross section of a nerve.

Given that the impulses travel more readily by jumping along the outer membrane of the myelin sheath and often fail completely without the myelin, why do we think our nerve signals ever naturally travel the length of the nerve fibers instead of traveling along the outer membrane of the myelin sheath?

Heather on Patients like me gave me the answers I was seeking. We have unmyelinated nerves which conduct signals. I finally got the an answer which fits in my head too when Heather explained the signals traveling faster when hopping from point to point. Now I picture my nerve signals like a kangaroo. I imagine timing a walking kangaroo in a race against a hopping one. I can also look at footsteps in the dirt. When we run, our steps are further apart. With these two images in my head, I can understand how a signal might travel faster jumping between the nodes in the myelin sheath.

Thread on Patients Like Me: https://www.patientslikeme.com/forum/ms/topics/125826

Our Family's Stories of Growing Up

The Life Well Lived

Double Rainbow Days

Like this:

Hop, Walk or Run?

Like this:

Our Family's Stories of Growing Up

Share this:

Like this:

Share this:

Like this:

Our Family's Stories of Growing Up