I have recently created a page on my blog for all of my posts related to multiple sclerosis. If you are a new reader you may want to visit the page first to get caught up on everything and I hope this page helps others looking for information about MS to be encouraged and find comfort. You can visit the Multiple Sclerosis page here!
Zach visits Shepherd Center in Atlanta every three months, and will continue to do so for the rest of his life assuming this routine and medication regimen continues to be successful for him. Every six months the visit includes a discussion with the doctor, tests for comparisons (a walking test that they track each visit etc), and his infusion. The other two visits are a quicker check up and an MRI to make sure there are no new spots on his brain and to track how older spots are doing.
If it were up to Zach he’d go solo to all of these visits. He doesn’t like to inconvenience anyone, including me going with him as well as his mom in having to help watch our kids. However, I think it’s very important for me to be there.
The reality is we never think about Zach having multiple sclerosis. The lifestyle changes we’ve made are now just our norm. And most of them only really affect Zach and not even the rest of the family. He takes his vitamins (vitamin D is especially important), he has a good system to be able to sleep (that has been his biggest struggle – sleep!), and he’s mindful of the heat (he has cooling towels etc). Small changes. Nothing really life altering.
It’s truly easy to forget that he even has any sort of disease at all. We typically only ever think about it when someone at church comes up and says “how are you doing Zach?” And his first response is always “great!” And then it’s like ohhhhh how am I doing? as in they are wanting to check in on his health! It truly takes us a second for it to even register that they are wondering about his MS!
It would be easy to not attend these visits with Zach. It’s be less of a hassle in regarding childcare. Zach could schedule work stuff up in the Atlanta area while going to his infusions so he’d be able to maximize time rather than having to drive up and then drive home with me. It would be easier for my mindset to never think about it at all.
If I don’t go to the visits, then it’s like he isn’t sick at all in my mind because I never have to see any of it. I never have to see the huge statue out front of the man in a wheelchair. I don’t have to see the other patients and see the affects this disease has had on them. I don’t have to hear the questions, see the medicine, I don’t have to ever think about it.
And that’s tempting.
But the reality is someday he could progress. His multiple sclerosis could become something that does affect his life in a bigger way. It could be big changes rather than small ones. It could impact our children, our relationship, our daily living. And if I don’t attend the appointments now?
If I don’t keep reminding myself that this is REAL and this is something to be mindful about? Then I’m setting myself up for a HUGE blow if that day were to come where it is a bigger situation.
Zach and I both are big picture, long term thinkers and so by going to these visits now I’m making it part of my routine just as much as it’s part of his. I want to know how he’s doing. I want to be able to ask questions as they come up. I want to be prepared if things change. I want to be his biggest cheerleader, biggest supporter.
I want it to be an US THING. I don’t want him doing this all by himself. I know he’d prefer it that way, but if this does ever become a bigger thing…it won’t be able to be that way. It will take team work so why not start as a TEAM so we can always be a team through it?
My hope is to attend his infusion with him every six months. The MRI appointments are truly just getting the MRI, the results aren’t discussed until the next infusion so really those infusion visits are the real deal visits.
We have talked it out and decided to make those every six month visits a fun date night. Maybe make a list of all the restaurants we want to try in Atlanta and go through them one by one each visit and rank them or do our own little review or something. Enjoy a night away together. Make it fun. Something to look forward to, a positive routine.
Currently Zach is doing wonderful. There is no real news to report. The infusion is going very well. He switched to his new infusion a year ago and it’s been smooth sailing. In the last six months he’s had one time of feeling like maybe he was getting some symptoms – a bad migraine and just feeling out of it but he rested and was fine.
The big thing with MS is just being aware. And so much of that is on his shoulders to know because I can’t know how he’s feeling. It’s just important that I make sure he’s able to rest when he feels he needs to!
His MRI still looks great, no changes. The spots that were there are still there (as they will continue to be…once there they never go away) but there are no new ones and no concerns whatsoever. The doctors feel very confident that this medicine will continue to work and that he will never have another episode.
Which means he’ll just keep being just as healthy as he is now forever and I LOVE hearing that 🙂
Thank you for the continued prayers on our behalf. I hope all my updates on Zach are as short and sweet and positive!