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Suzannah

Distinguished member
Joined
Mar 19, 2014
Messages
132
Reason
DX MND
Diagnosis
08/2014
Country
Uni
State
TEXAS
City
Deep in the Heart of
Hi all,

Well, after almost 3 months of waiting, my evaluation appointment is finally in sight. I will be heading to Houston next week to have all my testing done. But in the meantime, *this* week I'm on vacation in Colorado with my family. It is the first real vacation I hsve taken in at least 3.5 years.

I was worried about being able to keep up, but so far so good. Yesterday we hiked for three hours, two straight uphill and one hour straight downhill. I've been an athlete my entire life and am very fit, but I have bad spasticity and foot drop in both legs and was worried about tripping. My legs started coming unhinged towards the end, but I didn't fall.

The thin air and the cool temps (I'm from Texas) have been doing really good things for my body, and my chronic pain issues have eased up. I've been having to take a ton of sleeping medicine lately because of pain and spasticity, but here I've only needed to take my nightly Baclofen.

The best part is that being up here has allowed me to forget all of the rest of this stuff for a little while. I've been thinking about motor neuron diseases pretty much every moment of the day since I first went to the neurologist back in Feb. To be able to disengage, even just for a little while, is a great gift. I figure after next week, I may have the rest of my life to worry about it. Every now and then I start to panic a little when I think that this might be "the last time! " I might be able to do something, but then I remind myself what you all here say all the time, just to enjoy this time and the abilities that I still have now.

Suzannah
 
>I'm on vacation in Colorado with my family

after living 22 years in Colorado, we moved from Heaven .... to Houston :)
 
Have a great vacation Suzannah! Sometimes it is nice to have a change of scenery for your mnd and body.
 
One thing ALS teaches us is that each and every day is precious. Doesn't matter whether one does or does not have ALS or any other affliction... we should have learned this lesson much, much earlier in life. So go and enjoy that time like no other before it...

Jim
 
Have a fabulous time. And when you get home plan the next vacation!
 
Agree with all, Suzannah. Enjoy your time in Colorado!
 
Have a wonderful time!

Debbie
 
Enjoy your time, was just out in Santa Fe. Love the SW
 
It was great! I got back last night after 5 hours on a shuttle, 3 hours in the airport, a 2 hour flight, and an hour bus trip. Whew!

I'm really glad I went. I was pretty worried beforehand, because I wasn't sure how my body would react. But I was able to do everything pretty ok. Also great was that I SLEPT. I usually hate going to sleep because of pain and spasticity that make all my limbs go rigid and it takes forever to actually fall asleep. But this past week, I just got in bed and went to sleep like a normal person. I've been in a bad pain -> bad sleep -> more bad pain cycle for a while now, and being able to get several nights of good sleep in a row finally threw me out of it.

My favorite part was going to the hot springs. So.awesome. It felt so insanely good I could barely drag myself away when it was time to go.

I came home a couple of days earlier than everyone else because I wanted a few days to just chill with my kitty cats and mentally gear up for all the testing next week. It was so nice to have a week free of not worrying about this stuff too much. When I was in the security line at the airport, I got not one but three calls from the hospital. I thought, "Well, back to reality now, I guess."

And yes, I'm already planning my next trip :)

Suzannah
 
So glad you had this trip. Much better than hanging around waiting for the appointments. Good luck with them! Sounds like you need a hot tub?
 
>Sounds like you need a hot tub?

not in TX! the pool is at 92f right now :)
 
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