Next Week, at about This Time, My Fundraiser Should Be Finishing

There are so many folks who need additional help with funding medical needs! I found a group who helps with that. Take a look at HELP HOPE LIVE.

They are helping me get that bed funded, and there is a lot of creativity behind this. We are doing a Star Trek Movie Marathon watch party on Facebook. We are each getting a copy of my favorite trilogy of the classic movies, watching them in comfort of our own home, and discussing it online.

A link to the Star Trek marathon fundraiser
Come to my Star Trek themed fundraiser.

Lisa PLAYS: Dungeons & Dragons

In the time of Covid 19, I’m getting to experiment with entertainments I’ve wanted to try, but haven’t taken time for. I’ve heard of Dungeons & Dragons for decades, and sort of played for a short session or two, but not enough to know whether I really like the game. So… I discovered Roll20, a virtual gaming tabletop.

I couldn’t find a group that was comfortable with beginning players that met at a convenient time. Almost all of the games lasted way too long for me! When it comes to fun things, my attention span can be shorter than what a squirrel would have on crack cocaine.

There probably are a lot of things that I don’t know about the website. I’ve seen videos talking about horrible things that the owners/runners have done for all kinds of nefarious purposes. I just haven’t seen any of that myself.

They are open to all sorts of games. After I tackle Dungeons & Dragons, I may try DIALECT or DENIABLE or one of the space-related games.

ANYHOW, I couldn’t find a group that met my needs and interests. Instead, I decided to invite a few friends and running a game myself. TALK about the blind leading the blind! Only one of my players has ever played before and I don’t know what I’m doing. This should be GREAT! I’m learning mapping skills, plotting for games instead of stories, and all sorts of other things that I didn’t know I needed to know to have a full life!

I’m also getting to explain concepts to people. For example, alignment… To a group of LCMS Lutherans… I’m just having to explain that good and evil in this game isn’t exactly like good and evil in our universe. As part of the explanation I’m using this website and this is the result of the quiz asking what my character would be if I was a Dungeons & Dragons character:

You Are A:

Neutral Good Human Cleric (7th Level)

Ability Scores:
Strength- 8
Dexterity- 9
Constitution- 11
Intelligence- 15
Wisdom- 16
Charisma- 13

Neutral Good- A neutral good character does the best that a good person can do. He is devoted to helping others. He works with kings and magistrates but does not feel beholden to them. Neutral good is the best alignment you can be because it means doing what is good without bias for or against order. However, neutral good can be a dangerous alignment when it advances mediocrity by limiting the actions of the truly capable.

Humans are the most adaptable of the common races. Short generations and a penchant for migration and conquest have made them physically diverse as well. Humans are often unorthodox in their dress, sporting unusual hairstyles, fanciful clothes, tattoos, and the like.

Clerics- Clerics act as intermediaries between the earthly and the divine (or infernal) worlds. A good cleric helps those in need, while an evil cleric seeks to spread his patron’s vision of evil across the world. All clerics can heal wounds and bring people back from the brink of death, and powerful clerics can even raise the dead. Likewise, all clerics have authority over undead creatures, and they can turn away or even destroy these creatures. Clerics are trained in the use of simple weapons, and can use all forms of armor and shields without penalty, since armor does not interfere with the casting of divine spells. In addition to his normal complement of spells, every cleric chooses to focus on two of his deity’s domains. These domains grants the cleric special powers, and give him access to spells that he might otherwise never learn. A cleric’s Wisdom score should be high, since this determines the maximum spell level that he can cast.

Detailed Results:

Chaotic Neutral – XXXXXXXXXXXXXXXX (16)
Lawful Evil —– XXXXXXXXX (9)
Neutral Evil —- XXXXXXXXXXXX (12)
Chaotic Evil —- XXX (3)

Law & Chaos:
Law —– XXXXXXXXX (9)
Neutral – XXXXXXXXXXXX (12)
Chaos — XXX (3)

Good & Evil:
Neutral – XXXXXXXXXXXXX (13)
Evil —- (0)

Dwarf —- XXXXXXXX (8)
Elf —— XXXXXXXXXX (10)
Gnome —- XXXXXXXXXXXX (12)
Halfling – XXXXXXXXXXXX (12)
Half-Elf – XXXXXXXX (8)
Half-Orc – (0)

Barbarian – XXXX (4)
Bard —— XXXX (4)
Druid —– XXXXXXXXXXXX (12)
Fighter — XXXXXXXXXXXX (12)
Rogue —– XXXX (4)
Sorcerer — XXXXXXXX (8)
Warlock — XXXXXXXXXXXX (12)


Easter in Time of Corona Virus

body wrecked in grave clothes, lying in a tomb, with the words, "and on the seventh day, God rested."
And on the Seventh Day, God Rested-Easter Vigil 2020

Yeah, I know. Easter is tomorrow and we are celebrating it rather oddly. Most of us are staying home, live streaming services from what looks like an empty church. A few congregations have found creative ways to gather, like parking-lot services.

Of course, even the smallest of these gatherings is attended by “Angels and Archangels and All the Company of Heaven,” to laud and magnify Eternal God.

Easter services are tomorrow, but I had the privilege of virtually attending Easter Vigil, a somewhat different church service. For starters, it is something of a marathon service. More Scripture is read in this one setting that some people here in one year. Several people have done a better job of explaining it than I will, here are a few of the best:

  • This is a somewhat lighthearted and definitely nerdy explanation. Don’t worry, it is not irreverent. It is a blog post compares Vigil to an Entmoot. (Even if you haven’t read Tolkien’s works, it explains it well enough for the non-nerdy.)
  • Here is an hour-long podcast from Issues, Etc. featuring Will Weedon (NOT Wil Wheaton from Star Trek, next-generation!)
  • This is a lovely hymn, AWAKE MY HEART WITH GLADNESS sung by a sweet-voiced young woman. (Yes, you really need all the verses. It’s the difference between reading as savory trilogy and reading a bumper sticker.) 😉
  • Here is the bulletin from my church2020-04-11 Easter Vigil
  • … And here is the service itself…

It’s Spinal Muscular Atrophy Month

 It's just me, my face, and I celebrating Spinal Muscular Atrophy Month

It’s just me, my face, and I celebrating Spinal Muscular Atrophy Month

I’m behind, and August has barely started! It is SPINAL MUSCULAR ATROPHY month. Yes, it is still weird to me to celebrate a disease, but celebrating people who have rich and full lives with SMA is kind of cool.

In case you don’t know much about it, here is a decent article from a reputable website:
What is SMA from Cure SMA

You can also ask any question about living with a neuromuscular disorder. Feel free to put it in my comments. I will either answer privately or publicly.

Many tools are available to make life with SMA easier now than it was when I was younger. For example, breathing treatments have kept me from several rough situations that I faced. My tracheostomy tube is one of my best friends, pulling mucus out of my lungs when I sound like I have inhaled an aquarium.

It’s better than listening to my doctors predicting my death since I was 2 years old!

Some of the things are a little bit pricey. One of the lateral turning rotation beds would be a wonderful tool for my respiratory system and preventing blood clots. Unfortunately, it costs as much as a car. Still, you have got to look at this:

Since it costs so much, I decided to treat it like a car and get a used vehicle. Then my church stepped in and is going to help with this:

Zion Fundraiser Annual Ribs Cookoff and Pie Contest Hosted by Zion Lutheran Church, Tomball, TX
1st Annual Ribs Cookoff and Pie Contest Hosted by Zion Lutheran Church, Tomball, TX

My Face Is Tired!

I’m not really in the mood to write anything today, probably because I am a little bit tired and my jaw is recovering.

Photo on

You see, I had speech therapy today. Emily (my speech therapist) is trying to help me strengthen my swallowing muscles. It was an interesting session. It started out with her massaging along my entire jawbone on both sides. It was pressure where my jaw connected to the skull, until that relaxed a little bit. Then, she worked the connective tissue and muscles down the side toward the jawbone.

Then we did some swallowing exercises. First was EFFORTFUL SWALLOW. I had to swallow fast and hard, using ALL of my throat muscles. Believe it or not, that’s tricky to do. I’m supposed to do a minimum of 30 of those per set.

Next came TONGUE HOLD. There’s two ways to do that one. When I’m alone, I need to stick my tongue out between my teeth and swallow while holding my tongue in place. I never got that one completely right, I kept giggling. The other version is to stick my tongue out and have somebody else grab it. (Only really good friends are going to want to try that, even with paper towels and gloves. This exercise needs to happen in sets of 10.

Then came JAW OPENING. It sounds like just what it is: open my mouth is wide as I can and stretch for 3 seconds. This one happens in sets of 10.

Then came LINGUAL RESISTANCE. I’m supposed to press my tongue hard against a tongue depressor, first on the left and then the right. This happens in sets of 10, too.

Finally came LINGUAL RANGE OF MOTION. I had to stick my tongue out as far as I could, and hold it there for 3 seconds. Then I had to move it all the way to the left, all the way to the right, all the way up, and all the way down. I was supposed to hold it for 2 seconds at each position. This is supposed to happen in sets of 10. (I’ll probably be quite popular among little kids and simians…)

So… My face had a workout. My face is tired. And that’s HYSTERICAL to me.

Photo on

I Hate Summer Colds!

I’ve been off-line since my last Spinraza treatment. I’m sick. I have one of those horrid summer colds!
Yesterday, my niece was helping me turn, and she had her hand on my rib cage. She said, “Your breathing feels like a cat purring.”
The sad thing is… She’s RIGHT! I had been saying that I sound like I inhaled an aquarium, but I like her description better.

Spinraza III

Landscape with Tree and Grass at Sunset
Landscape with Tree and Grass at Sunset-Photo on Visual Hunt


My Spinraza Loading Dose III is in the rearview mirror. Yes, it went well, again. While I don’t think I will ever consider a lumbar puncture to be ROUTINE, it was pretty much a routine procedure.
So far, I haven’t had any ill effects. Although today, my lower back feels “tired,” and my right leg feels like it woke up from being numb.

It isn’t pain, and I can live with that!

The progression of Spinal Muscular Atrophy is stopped, or at least slowed. (That seems to be what the literature shows, anyhow.) On Thursday morning, I was able to open and close my left hand. I haven’t been able to do that in… I don’t know how long. While I haven’t mastered that superpower in my right hand, my index finger can grip a little bit.

Saturday evening and today, I’m not quite as strong with either of those. But they are still better than they used to be.

Where do I go from here? My final loading dose is towards the end of the month. I will continue to rejoice in the life I have and any small gains that this medicine has brought me.

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Spinraza II

First Loading Dose Is in the Rearview Mirror

Spinraza Treatments: LET THE FUN BEGIN

Still Fighting a Cold

Spinraza II

The second loading dose of Spinraza is in the rearview mirror and the third dose is in front of me.

It went smoothly again. I don’t know that I will ever think of transforaminal lumbar punctures as ROUTINE, but I might be able to get comfortable with them. It’s a good thing… Spinraza isn’t a magic bullet. It’s not “one and done.” It’s a little bit more like insulin is to the diabetic.

I can live with that!

I do think I am seeing benefits. Granted, I’m not benchpressing anything yet. I have not been climbing ladders or stairs.

Things are much more subtle. I had WAY more than 50 years of muscle disintegration. It’s a bit much to expect instant superhero.

My breathing is better. I think my thumbs have fractionally more strength. It’s possible that my digestive tract is becoming more manageable.

All wins, in my book!

First Loading Dose Is in the Rearview Mirror

image of a CAT scan machine
This Helped Things Go Smoothly-a CAT Scan (image thanks to daveynin from United States [CC BY 2.0 (])
Yes… Earlier this week I had my first step in my adventures with Spinraza.

Other than getting lost and accidentally taking a tour of Methodist Hospital and the associated parking towers, it really wasn’t a bad experience.

Of course, there was some of the “hurry up and wait” that always happens with medical procedures. Of course, I was nervous… THEY WERE STICKING A NEEDLE IN MY SPINE, TAKING SPINAL FLUID OUT AND REPLACING IT WITH OTHER STUFF!

Just the idea makes the hair want to fall out!

I got changed into that fashionable hospital gown, gave necessary samples to make sure I’m okay, and equipment installed in case they needed to give me an IV med, and headed to the procedure room.

I was laying on my side and was strapped down. (Perhaps they expected me to leap around the room once they finished?)

They quickly located the spot and inserted the needle. It wasn’t COMFORTABLE, but it didn’t hurt… Except for when one of my nerve endings got touched. THAT caught my attention, but it was only for a split second.

The whole thing probably took 15 minutes. No headache, no pain… Tiny bruise that is very hard to find.

Since then, I have been dreaming all surfaces under my skin were vibrating as things slowly reawakens. Good dream!

I’m not really sure when to expect any possible changes, or exactly what to expect.

Next dose is in about two weeks…

Related Posts

Spinraza Treatments: LET THE FUN BEGIN

Still Fighting a Cold