Category Archives: driving

A Productive Visit From a Friend; Lots of Goodness

#KennedysDisease #SBMA #Friendship

An old friend stopped by for mutual uplifting in preparation for the beginning of school.  In short, she made me realize how much I miss my former coworkers from the teaching profession.

I didn’t know my friend had a certification and focus in chemistry. I immediately moved to invite her to be part of my sinister global-takeover plot, but my wife stopped me before I could enlist her.

Electrolyte drinks are my query. The search for decent information has turned up little more than advertisements and garbage information. Five minutes into her visit and I had a protocol. My friend understood the biochemical mechanisms involved with the muscles and the electrolytes. She surmised that I should drink a 2:1 ratio of water to electrolyte drink.

I have done this twice since our visit and I can say that she is pretty close to being dead on. At least mentally, I feel better. It is an subjective analysis, but that is all I have. I know that the additional hydration is not a bad thing. Having chronic issues with my UT, that feels considerably better now, too.

Going forward, my goal is to drink one 2:1 combo per day. Attempting to increase the intake to two combos on a bad day if possible. I’ve resumed keeping my personal journal to track effects, if any, that I can attribute to the regime.

I’ve had a bad couple of weeks. However, I will make a claim that I’m on the mend again. I feel like I could go for a short drive today. Which is a feeling I haven’t had in what seems months, but, it has only been a few weeks. I take this as a good sign.

I did learn, that hot baths are off my menu. I triggered another short-term event on Saturday, just by having a nice soak. It cost me Saturday and Sunday. I probably would have felt like I do now Saturday afternoon or Sunday morning had I not soaked in a tub… but, it felt amazing. That, right up until I started twitching and having spasms.

But, I will try again, when the temperature is cool and I can drop my core temperature faster.

Although, I’ve had a few bad weeks, I remain confident that we are learning to effectively manage the condition.

In Christ,
Jay C. “Jazzy_J” Theriot

Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on –> see: irc:// You will need an IRC Client such as HexChat to connect.

2017 December 29th – Broken Wheelchair Wheel

I have always liked taking arduous vacations. That is, until a year ago.

Back in the day, as they say, I enjoyed forced ruck marching.  Basically, you have a rucksack (backpack) on your back, loaded with a preset weight (usually a sandbag) and you take off through the country and compete for time with hundreds of other people.

That was the military, but in civilian life, I continued enjoying this pursuit. I would pack my camera gear, kids in tow, and we would go trekking through the woods to some far-off (usually about a 1/2 mile to a mile) waterfall or rock-grouping.  I was able to get some pretty decent shots, but moreover, the time I spent sharing with my kids what I really loved to do was priceless.

It is obvious after today, I need to rethink my definition of a vacation before I am the death of my wife.

The day started really early.  From the five or so hours we spent in the car, I had cramps and spasms all night.  I woke us up at about 1 am, then again, screaming at 5 am.  The first was just general all-over body spasms and cramps I get every night (notice the time of this blog-post).  The second was a weird double-calf massive Charlie-horse.  All I could think of to do is to stand to put weigh on and stretch out the muscles.  This is easy for normal people.  My legs don’t always have feeling in them, so I just took a chance, steadied myself by the bed and then applied my weight.  Worked like a charm.  It stopped the cramps/spasm/whatever immediately.  I pulled both muscles in my calves in the process, but pulled muscles have become the norm, so, we’re good.

Thankfully, my wife is involved in government, and government doesn’t care if you are on vacation when a board meeting is called.  She called in and it gave me a few hours to stretch, rest and heal myself as best I could.

We had a late brunch, visited the local (beautiful) Trinity Episcopal Church in Natchitoches (I learned to spell it today!) and met with the wonderful rector.  Mother Mary took us on a guided tour of Trinity, as they were replacing the roof due to storm damage.  I worked with the cane and was able to snap quite a few photos.  Some were almost good.

Back in the wheelchair, we headed down to the riverfront (which is actually a lake).  Somewhere, along the path we snapped one of the spokes of the front-right wheel.  We were able to do quite a bit, but then on the return to our lodging, we finished breaking the wheel.  I caned it two blocks, wife pushing the wheelchair, and I resting on her shoulder for support and steadiness.

We made it. We napped, or at least, I did.  She said she dozed, but I slipped into a short coma.

Upon awakening, she noticed I was sullen and asked what was going through my mind.

I replied, “Oh, not much. How worthless I feel and how expensive it is for me to be laying in a bed five hours from home.”

My wife is my strength that I lean on too much.  She refused to let me beat myself up.  We got ourselves together and had a delightful meal on the “river,” driving there in our auto. We met people from Dallas and Galliano.  I have always loved people.  I love their stories, their individuality.  The food was amazing, the service… well, the waitress got a 30% tip.  I watched this young lady work the room.  She made everyone she served feel special.  If I could have dropped her more, I would have.  The dinner snapped me back into mental shape.  My wife knows me too well, and is very good at getting me to get me out of my way.

We returned to our B&B, played a game of Scrabble, had chocolates, did some reading, and called it an early night.

Today, will be much lighter.  We have to retrieve my step-son, now a 20-year old, he has been on a wonderlust. We are to welcome him home tomorrow.  I can’t wait to hear his stories.

Physically, I am beat.  Mentally, I am glad we made it up here.  I think we pushed my limitations and maybe extended them a bit.  I was able to see a distant land, not as distant as I am used to, but distant just the same.  We ate some really exciting dishes. And, most importantly, we escaped the routine together.

I wish everyone had a life-partner like I do. There are people out there that do.  I can see the love and dedication in their eyes.  There is a certain energy that is there.  It bonds them for life.

Thanks, and God Bless,

Jay C. “Jazzy_J” Theriot