I am relieved to say that yesterday went a lot better than I had expected. Mike's nurse, Joann, was a very pleasant woman who was very easy to talk to and I truly believe will be accessible and approachable through our journey together. I gained so much more knowledge about MS from her and am very thankful.
My biggest question was what does the medication do. The medication is actually a protein that already exists in our body not a foreign chemical. This protein will help to decrease further damage inflicted by his immune cells on his nerve cells. Once damage has been done, it cannot be repaired. That is what most of the research on MS is trying to find, something that can repair these damaged nerves. So the things currently affecting him like not being able to swallow solid food and increasing difficulty walking may not go away, but future problems may be decreased or delayed.
I had no idea the effect heat played in MS. Heat causes inflammation in Mike's brain which speeds up the attack on his nerve cells. He has to be sooo careful about being in heat. The only good thing that may come out of this is that Disneyland gives those with MS and their group a fast pass to the front of the line because they cannot be standing out in the heat. So Mike may become even more popular with the visiting crowd:-).
Heat is also the biggest cause of fatigue in MS. The nurse explained to me that fatigue for those with MS is not just being tired. Fatigue is exhaustion, not being able to move, and your brain telling you to lay down. I have watched Mike be increasingly exhausted over the past months, even in this past week. Joann gave me a good reminder that even though Mike may look normal, to remember that he is exhausted. Mike does a good job of trying to convince me he is "normal" or "just fine". I love that he is a fighter though, and an optimistic one at that.
The things Mike needs to be constant with to delay any new flare-ups are:
- keep building muscle
- a healthy diet-this is a tough one for him since he can't eat - includes vitamin supplements
- stay cool-also tough in our 100'+ weather but we may be able to get a lower rate with Edison
- stay hydrated
- good sleep-he has to go to bed at the same time every night
- follow up with Dr. & lab work - since medicine reduces his white blood count