11 things I learned... 5.5.18
Spent the day today with 200 of my closest friends at a Parkinson’s symposium here in Colorado Springs. Guest speakers- neurologists, PTs, OT’s, STs and the like, vendors and door prizes! (I didn’t win anything)
Things I learned today:
1. Now that I’m on carbidopa-levodopa I can fill out a name tag without my wife. It’s been a good while since I’ve been able to fill out a name tag that anyone else could read.
2. Food from assisted-living facility doesn’t have to be nasty (crab cakes, beef skewers, sliders all pretty decent). I’d be lying if I said I wasn’t hesitant to try it, but by golly it was tasty.
3. Most of swallowing has to do with the back of your tongue and you can increase your tongue strength through “strength training”… This will become important in the future… And counterintuitively, straws exacerbate swallowing problems… which is too bad I love straws, you’ll have to pry it out of my cold shaking hand ;-)
4. I’m the baby in this community, which is fine… I just get a little extra attention. It never feels bad to get doted on lol.
5. Start saying “care-partner” instead of caregiver; I’m a strong believer that language creates reality and I’m too young and healthy to have a “caregiver”
6. Exercise, exercise, exercise. This is pretty much the Parkinson’s mantra.
7. I need/want to get a baseline on my current cognitive, spatial, and physical capabilities. Time for me to visit a PT an OT and possibly an ST. Oh joy
8. Did I mention exercise, exercise, exercise?
9. People are as excited as I am about Shake, Rattle Be Whole... This could be big. Not big for me per se, but for the community at large.
10. The most important thing I learned, is to be kind to my wife. Kinder than either of us can imagine at this point. She too will go through a wicked grieving process like myself, but a different pace on different terms and in her own way. My challenges will become her challenges… and that my friends is not particularly fair. I also need to give her space away from Parkinson’s. Most importantly I must communicate with her how I am feeling and where I’m ‘at’ and listen to how she’s feeling and where she’s ‘at’. I could ramble on and on, this number 11 is a biggie, but I’ll leave it at this for now; perhaps to write a co-blog entry on this topic with Tami later
11. We got this.