mamabunny
DIS Veteran
- Joined
- Oct 11, 2012
Ugh. The spasms are the worst! I’m going to a new PT soon. Maybe they will have a solution. We moved a couple of years ago and I haven’t had PT here, yet. I’m glad you’ve found a way to stop yours. I know if they get too bad, they’ll use Botox or a baclofen pump and I’ve talked to people who’ve had good luck with both of those. Right now, I use a tens unit sometimes when my back is spasming and it helps stop them sometimes. I have mild spasticity in my bicep that the tens unit doesn’t help. Maybe the PT will.
Overall though, I am very blessed and looking forward to the next time we go to Disney. We’re talking about 2022. We usually go once a year, but my DS has some special needs and I’m not sure he would keep a mask on the entire time. Of course, if it’s for Disney, he might. DH & I might be the ones who struggle. LOL
We usually go in September and January (weird schedule, I know LOL) and we are skipping our fall trip this year. We are still hopeful for January, but unless things change significantly, we will cancel that too.
I hate it, for many reasons, but selfishly I hate it most for me. WDW is my respite; it is the one place in the world where I can go, and have fun, and not worry about needing wheels under my butt. When I am there, I sleep through the night, and my pain nearly completely vanishes. I laugh and smile all day, and my family says I am more myself than they see me at any other time. I need less medication, and I move more; my family would gladly move to Orlando tomorrow if my husband could transfer his job so that I could go to WDW regularly. Sadly, it is not possible. And, honestly, I have always been scared - what if WDW only works it's "magic" on me because it's vacation? What if it stopped working if I lived near enough that it because routine?
The TENS unit used to work for me, but over time it has become basically useless. As long as the the dry needling works, I will stick with it (bad pun, sorry) but my rhuemy has said we still have lots of options if that ever fails to do the trick.
Finding a good PT that was the right "fit" for me was tough - it took time, and I wound up going to a *lot* of different clinics before I found one that was compatible with me. The clinic I have now has a "no more pain" theory that they interpret 2 ways: First, that they want you to not have any more pain, that's the goal. And secondly, they don't want to add *more* pain along the way to reach that goal. I have been to those clinics where "no pain, no gain" is not just a motto; the last one I went to actually did damage me further. I'm so grateful that I found my current PT and that the clinic she is at is so supportive and caring of it's patients.
How old is your DS? I just found these on Amazon today; I think I'm going to try some of them to see if they help with the claustrophobic feeling that I get sometimes from wearing a mask for longer periods. I make our masks from a pattern I developed myself, and I think there should be more than enough room for that device. We'll see!