Thru the alphabet with Transverse Myelitis: Part 2 of 3

On Sept 18, 2023 I woke up in the Critical Decision Unit at Cox South hospital and was paralyzed from the shoulders down. I couldn’t move a finger.
My diagnosis is Idiopathic Acute Transverse Myelitis. (John Hopkins says there are 1,400 cases of TM annually in the US.)

See Part 1 here

M = Mobility (and lack thereof)
The Cleveland Clinic says there are “muscle and movement issues caused by TM: loss of balance; difficulty walking (stumbling or dragging your feet); muscle spasms.”
All of those apply to me.
My Mobility will never be like it was before 9/18/23. It’s gotten better over the past nine months. But it still sucks. My mobility seems to have plateaued.
Even though I move around unaided in our apartment, I expect that I will always have a cane, walking stick, or rollator when I leave the apartment. [I’m not whining…I’m vertical and making noises.  Being immobile was a drag.]

{M-prime is MRI. TM can’t be diagnosed without a couple of MRIs: one with and one without contrast. Getting successful MRIs is challenging for someone as extremely claustrophobic as me. If I do need another MRI at some point we did learn the key: give me a shot of the strongest dose of Ativan possible…and make me promise not to press the panic button!}

[M-double prime is Myelin. When the spinal cord becomes inflamed this will damage myelin, the insulating material that covers your nerves. Loss of myelin has blocked my nerve impulses, i.e. stripped myelin has my nerve impulses screwed up. There is no medication to rebuild the myelin….and that SUCKS!!]

N = Neurological
TM is a neurological disease.
After the diagnosis and the “normal” treatments of IVIG, steroids, and plasma transfer, patients are pretty much on their own. (The Nurse Practitioner that I saw in the hospital was great.)
It becomes a matter of dealing with pain, PT & OT, and pushing oneself.
I’ve quickly learned that in the case of many neurological disorders, that after diagnosis and initial treatments the neurologist isn’t much help.
That is certainly my case.

O = Occupational Therapy
Occupational therapy, or OT for short, is a health profession that helps you or your family member develop the skills needed for day-to-day activities.
“Occupation” includes all the activities or tasks that a person performs each day. For example: getting dressed, taking a shower, cooking a meal, getting together with friends, and working a job.
I had OT twice a day for most of the 24 days I was at the inpatient rehab hospital.
Then I had it twice a week for 2 months as an outpatient.
I can’t do many of the things I used to do around the house.
But I’m not helpless like I was for 6 weeks, e.g. I dust, vacuum, get the clothes from the hamper to folded in the basket, and i can shit/shower/shave unaided. For that and more I thank the OT folks.

P = Physical Therapy
Physical therapy is a medical treatment used to restore functional movements, such as standing, walking, and moving different body parts.
It took weeks before I could stand and walk with a walker.
I left PT over a month ago as my Medicare dollars were being exhausted and I chose to save some for later in the year “just in case.”
I’m grateful to every OT and PT professional who has helped me so far.

Q = Quitting
It’s not an option.
“Don’t give up. Don’t ever give up!”
(See D in part 1)

R = Resolve
I love this description of “strong resolve”:
“To strengthen one’s resolve means to reestablish one’s determination to see something through to completion especially after having encountered adversity and having become discouraged because of it.”
Shelly and I have “strong resolve.”

S = Spinal cord
A lesion from out of nowhere “blew up” my spinal cord.
Nobody knows what caused it…i.e. “idiopathic.”
Unlike some TM patients, I’m not interested in the cause. (See T, below)
Unfortunately there is no cure.
But there is a future…& it’s a future of living our Best Life and living it with TM.

{S-prime is Showering. Before TM, taking a shower was a refreshing, invigorating and pretty quick experience. Now I use a shower chair. I can’t step into the tub. First I sit, and then I lift my legs in. It is still a bit refreshing, but it’s also work. And from start to finish takes much longer now…}

{S- double prime is Shelly Drymon, my partner in this life since 2013. I often say/write that I’m a lucky old coot. Boy, am I ever. She is Prime alright!!! Shelly is Double Prime.}

T = Transverse Myelitis
TM…The Monster…The Mother******
The Johns Hopkins Transverse Myelitis Center (JHTMC) was established in 1999 as the first center dedicated to the study and research of transverse myelitis.
From their site:
“Transverse myelitis is a neurological condition. It happens when the spinal cord becomes inflamed. This inflammation can damage myelin, the insulating material that covers your nerves. Loss of myelin often leads to spinal cord scarring that blocks nerve impulses and results in physical problems.
Transverse myelitis is a relatively rare disease. It occurs most often in children ages 10 to 19 and in adults ages 30 to 39. But it can happen at any age, and to any gender or race.
In some cases, the exact cause of transverse myelitis is unknown. In other cases, the inflammation that leads to transverse myelitis can result as a side effect of a number of other health problems, such as:
Lyme disease; Syphilis; Measles; Viral infections; Bacterial infections; Fungal infections; Parasites; Immune system disorders; Autoimmune disorders, such as lupus;
After a vaccine (very rare)”

{T-prime = THC. I was a pothead “back in the day.” I rediscovered weed when I moved back to MO in 2011.
I hadn’t touched it for months after TM ambushed me. But I decided to give it a try to help with my pains.
It has helped with the pains…and more. It seems to help me sleep. And it has helped with my mindset…which is a bit of a challenge when living with TM.}

People who I’ve known for awhile are surprised that I “sound good…normal…” when we talk on then phone.
They’ve been saying that since the first few days after I woke up paralyzed.
It was several days after the diagnosis before I could remember those 2 words. I kept blotting them out. “What was it again? Write it down for me.”
Now those 5 syllables are burned into my being.
Fuck TM.

TO BE Continued….

Thru the alphabet with Transverse Myelitis: Part 1 of 3

A = Ambushed
On 9/17/23 I woke up at home after an evening of live music from 6 bands and late night pancakes smothered in strawberries and whipped cream at IHOP. (one of the scarce 24 hour places in a post-covid world)
The next morning I woke up in the Critical Decision Unit at Cox South hospital and was paralyzed from the shoulders down. I couldn’t move a finger.
My diagnosis is Idiopathic Acute Transverse Myelitis. (John Hopkins says there are 1400 cases of TM annually in the US.)
Idiopathic = “Your guess is as good as mine”
I blame it on IHOP for TM ambushing me.

B = Bowels and Bladder
TM is characterized by “dysfunctional urethral and anal sphincter activities.”
I have had a catheter in place since the morning of 9/18/23. At this point, I am totally unable to pee on my own. (I’ve taken uncomfortable tests to confirm.)
The bowel challenges are gonna get their own blog piece. (There will be smears, potty training, charting it, and EIFs {Exercises in futility}, and more…)

C = Calls from friends
The only thing that makes me feel better than phone calls to friends are calls from friends and Visits by friends.
Unfortunately, the vast majority of incoming calls I receive are spam. (I’ve started answering some of them. There are stories there…)
Thank goodness for the contingent of friends who call to check on me…or more importantly just to chat without focusing on “how are you doing?”
[Then flip side are the “I’ll call soon” messages followed by the calls that never come. Seems like everyone has a phone, but seldom use it to make and return calls.  This sequence of events is something we have all experienced…but it seems to sting more these days…]

D = “Don’t Give up. Don’t Ever Give up.”
The late Jim Valvano, as he was dying of cancer, gave one of the most memorable speeches on March 4, 1993 at the ESPYs.
I watch that speech, or an abbreviated version, a few times a year. I took it to heart a long time ago, but those words mean more now than ever before.
Take a few moments and watch a snippet:

E = Energy (and lack thereof)
I always considered myself a high energy person.
First one up.
Last one to go to bed.
Power nap after lunch to get a boost.
12K average steps a day. 6 miles.
I did get pooped on especially active days. (A 4:20 sativa boost sometimes helped…)
Now I poop out easily. Much too easily…
I still wake up early, but usually after 7 or 8 hours of uninterrupted sleep. (Something that never happened b4 TM…and which many of my TM peers would love to experience. Insomnia afflicts many with transverse myelitis.)
I haven’t worn my stepcounter in almost 9 months. It would be depressing. And with my Tim-Conway-Like abbreviated and janky gait I hate to think how many steps it would take to walk a mile.

F = Feet
The first indication that something was wrong was the needles and pins sensation in my feet. The sensation has changed, but now I experience neurological pain in my feet and in many ways a lack of sensation. Hopefully someday I’ll be able to drive a car again…but I may not be able to use my feet to control the accelerator or brake.
I wear compression socks…and don’t have the flexibility and strength to put them on myself. (One of the many items on the long list of things that Shelly does for me daily…)
I know my feet are my contact point with the floor, but the sensation is minimal. Add in balance issues and walking is very different in a TM world.

G = Gabapentin
I take 800mg of it three times a day for nerve pain. I assume/believe it lessens the pain, which never goes away. And I won’t be stopping anytime soon just to see what the pain level might be w/o the drug.
{G-prime is for Gummies. THC gummies seem to lessen the pain even more…and they sure do enhance my afternoons and evenings. I laid off weed for months after getting out of the hospital, but it is enhancing my quality of life…so it’s here to stay.}
{G-double prime is for Gratitude. As Michael J. Fox wrote: “With Gratitude, optimism becomes sustainable.” Amen&Amen.}

H = Homebound
It’s easy to be homebound when ambulation is challenging, when you’re immune compromised, and when you have bowel and bladder challenges.
Shelly would like me to get out more than I do…but the B&B challenges are real PIAs.
Another compounding factor is that I had a mild case of covid in March and a nasty cold&fever a couple of weeks ago. My lagging energy level was even worse for the 7 to 10 days after whipping both of them.

I = Immune system
Johns Hopkins estimates that there are only 1400 cases of TM a year, so the research is limited. The jury is out on whether or not TM is an autoimmune disease.
But the fact that my immune system is significantly weakened is not a question….it’s a reality. {And it adds to my inclination to avoid enclosed public places and enjoy life in B307 and on our balcony.}

J = Just Be
I’ve been writing “Be. Just Be” on letters and cards since I was in high school. That perspective has never been more important than it is now.
Shelly’s and my life have changed significantly, but we do our best to look back at each day as having been a good one. Each evening we make sure that we appreciated the passing of time. One of us will ask the other: “was today a good day?”
Even on challenging days, the answer is always some degree of “Yes.

K = Keep on Keeping on
See “J” and “D” above.
We’ll continue to set goals…knowing that the target date might slip…or that the item might fall off the calendar.
We’ll enjoy every sandwich. (even though we only have bread in the house when we have homegrown tomatoes for BLTs…i.e. we seldom actually have a “sandwich.”)
Shelly keeps my spirits up…and pushes me to do more…and keeps me keeping on. {that leads to “L”}

L = Lucky
For the last decade+ I have closed many FB posts with “I am a lucky old coot.”
Maybe there was a better word than coot (codger…cynic…bastard??), but I considered myself lucky no matter what trials and hiccups a day or week might hit me/us with.
I still do consider myself lucky. Very lucky.
I’ll be 76 at my next birthday. No matter how fast you read, a few people in the US died b4 you got to this sentence. Some were younger than me…and younger than you.
That makes us lucky.
Some of the folks who have been in PT with me are <30 and wheelchair bound.
About 1/3rd of TM patients remain paralyzed and/or wheel chair bound.
That makes me Very Lucky.

TO BE Continued….

Not as easy as it sounds

“Sit to Stand”
It sounds so simple.
So very, very simple.
And then you get old.
Or get diagnosed with idiopathic acute Transverse Myelitis.
Or both.
I was diagnosed with TM about a week after I woke up paralyzed from the shoulders down. It took me about that long to remember those 2 words.
And lots, lots longer to be able to stand up.

“Sit to Stand” is a Physical Therapy exercise. (You can find pieces on “The Power of the sit to stand.” Google it. It is a Big Deal.)
There are measures and standards for the task. I don’t know or give 2 shits about either of them…especially the “standards.” I just know that standing up has become a very a big…and difficult…thing since that day in mid-September of 2023, days after my seventy-fifth bday.
(One factor in my perspective might be because of how far short of standard I now fall. And I gotta admit the bar seems pretty high. The chart at Physiopedia says that if you’re on Medicare and do less than 11 sit-to-stands in 30 seconds that you are below average…and a fall risk!! Time yourself.)

A “true” sit-to-stand means you can’t use your hands for assistance.
I wish!!
If the surface is high enough (and that most likely means a tall bed…but not any chair, couch, or any commode that I’ve encountered) I might be able to stand without using my hands.
Otherwise it’s a full body exercise to stand up.

I had recovered enough to attempt standing a couple of times before I left inpatient rehab on October 25.
The therapist would lower the mat an inch at a time.
When she got it as low as it would go I was screwed….standing wasn’t possible, no matter how hard I pressed on the mat with both of my arms.
Then Maddie told me that most chairs, couches and toilets are even lower.
Fuck Me!

My Dad (who will be 98 on May 26) spends most of his TV time in this low chair that is hard for anyone to get out of. (I don’t know how he does it!!)
As long as I have a chair with arms and the chair isn’t too low, getting up is doable….but it can be a struggle.
Neither Dad nor I need a lift chair. (The subject of our similar infirmities drops into many of our daily calls. That piece of furniture has never been a topic on our phone calls…at least not for either of us. We know people who benefit from and need the chair’s help…)

When I moved into The Abbey in October of ‘11 I had a dining table with four chairs…and a bean bag chair. That was all my furniture. Period.
I slept on a blowup bed for over a year…until I was talked into buying a box spring and mattress by Shelly. (I can’t imagine trying to get up from that fancy air mattress now. It would have to be “technique”…i.e., roll onto the floor, get on hands and knees… Yada yada.)

Bean bag chairs have been a pain in the ass since 1968.
I’ve owned, or encountered them, a few times.
The one I threw into the dumpster here in Springtown heard “never again” as I tossed it years ago.
WTAF was I thinking when I bought that thing?

In TM times, we now are doing lots of Adulting.
One thing we did was buy a new couch and chair.
It replaced ones that I paid 250 bucks for at a flea market back in 2011 when I moved to Springtown. We both loved those two pieces…but they looked like they shoulda been in a college student’s apartment…
(How that stuff made it from the north side flea market and finally up the two flights of stairs at The Abbey is a story for another day.)

That checkered couch&chair were comfy, and stained, and in need of covering. Since no “standard” covers would fit the oversized pair, a set of very $pendy custom covers was the only option.
Hard pass.
So instead Shelly headed for one of Ashley’s never ending sales. (I consulted from afar. She sent me pictures…)
I spend most of my time on the new couch, and it is a tiny bit easier to stand up from than old faithful was.

Whether it’s watching sports, Jeopardy, or streaming, when there is a commercial break I Stand Up. Sometimes I stay up and do some of my PT “homework.” Other times I do a few sit-to-stands.
Others I struggle to stand and cuss my legs and my pathetic glutes. (Shelly used to tease me about my “cute butt.” Transverse myelitis blew it up. Lame glutes makes standing very difficult…)

I’m sitting here listening to my first audiobook: “No time like the future…an optimist considers mortality” by Michael J. Fox.
On Saturday an acquaintance suggested audiobooks as I lamented my lack of interest in reading (which I blame on nerve pain and gabapentin).
GREAT suggestion Pat….I appreciate it.
Not sure why I picked this book…but so far it’s Great too.
The book is “A moving account of resilience, hope, fear and mortality, and how these things resonate in our lives…”

Listening to him read his memoir is gonna make me stop whining about sit-to-stand. (Don’t be a whiny bitch Steve…for cripes sake!!!!)
Fox was diagnosed with Parkinson’s at age 29. At 57 he had complex spinal surgery unrelated to Parkinson’s that threatened him with paralysis.
Seeing young folks in wheelchairs at therapy has always been eye-opening and a shot of reality too.

It wasn’t that long ago that I was “wheelchair bound.”
Today I vacuumed the apartment.
It took awhile.
It wore me out.
I had to take a break.
But first I had to stand up.
I’ll keep getting better at it.
Commercial breaks will see to that.  (And man-o-man are there a LOT of them!!!)

The TM Experience Continues

Tempus fugit…or some such shit…
When I last posted (on 11/24/23) I expected to post a week or so later about my second week in the hospital with lots of goodies from “my gizmo” (the dictaphone that I wrote about in that post).
November 24 was almost 90 days ago?!?!
WTAF have I been doing since?
I did send out a Christmas e-mail with a jib jab, news about what happened to me on 9/17 and a couple of links to songs worth a listen or two.
And I dropped 450 words on Dec 30 on Caring Bridge wrapping up postings there for awhile re my Transverse Myelitis until there is a major milestone.
Both of those resulted in some enjoyable communication with friends near and far. E-mails & calls. Good times.

But mostly the elapsed time has been spent, in no particular order: doomscrolling; streaming; sleeping (since I came home I sleep more hours a night and naps are rare now??); watching hoops; listening to music (checked out a Lot of albums nominated in various Grammy categories. haven’t watched the show in decades…but there is some good new music…don’t listen to those stodgy and close-minded who say otherwise); texting and emailing; on the phone a bit (mostly calls I initiate. The majority of my in-coming calls read “Suspected spam.”); therapy (with “professionals” and with Shelly); and wrapping my head around life with TM (it’s a 24×7 exercise).

Since I’ve been so derelict about posting to my blog (it essentially died during covid…but that is gonna change) this piece will be long (and it will bounce around like my conversations do. Be prepared for tangents… {and lots of parentethicals})
If all you care-about/wanta-know is the answer to “how are you doing Steve?”: I’m upright and still pretty normal above the shoulders (normal??).

–Not getting out much. Because of TM, no vaccines for me so I’m keeping my distance. (Plus with my TM ravaged nerves, my body doesn’t like cold at all!)
–A walker will be taking me most places for awhile, but Shelly and I do some “cane walking” (and the occasional & short “no device” walk in the apartment).
–Driving is not anywhere close to near term. (Shelly is a great chauffeur. But she likes to be driven around…and that day is coming again {hoping for ‘24})
–PT twice a week for awhile at Cox Outpatient (and exercises at home daily).
–My stamina ain’t what it used to be. I was averaging 12K steps a day b4 9/17/23. Now a quarter mile walk with my therapist requires a break and a glass of water.
-=-=-=-=
If you read on, there are a few snippets from the gizmo and a more detailed ramble, but be warned that it might verge into “TMI” (I’ve shared/subjected-people-to even more specifics on the phone…if we haven’t talked, you’re missing out!).
One thing I now talk about in my Transverse Myelitis world (that I seldom talked about with anyone before {including with Shelly! Boy-o-boy has TM changed our daily existence…}) are Bodily Functions.

Regarding the plans I had for a piece from my second week in the hospital and another from my 3 plus weeks at Meyer for inpatient rehab, it turns out that a lot of the stuff I dictated while in both the hospital and the rehab hospital was day-to-day, with a focus on people who visited or called or gave me therapy….or the meals. (I ate LOTS of salmon and asparagus and chicken potpie at the rehab hospital!)
The gizmo captured a lot of the mundane.

After that late November post, I discovered a FB group for Transverse Myelitis. I like the perspective of most people in the group: no looking back, no speculating about the cause, no wallowing in the past.
Instead focus on today and the future…living each day.
1. Day. @. A. Time.
=-=-=

From the gizmo with a tie to where I am today:

Gizmo at 7:50 am on Monday, Sept 25: “I had two successes today. One was that I was able to pick up a little thing of grapes. Drop it on my plate and pick up each grape and successfully put it in my mouth.” My doc laughed when I told him: “Heck Steve..I drop stuff all the time.” (for the first few weeks, all my eating was with my left hand. TM hammered my right side more than my left…)

“And the other success was this afternoon in PT, with Courtney. She got me to sit up on the side of the bed. And then she asked me to stand up, and I stood up four times! Hard to believe. It was shaky and I needed lots of help. Standing up was huge.”

It’s important to note that I didn’t “stand up” on the floor…I stood up on a device called the “SA400 sit-to-stand patient lift.” I used my arms to pull myself up…my legs were “just there.” They were no help. Standing up really meant that I was vertical for the first time in a week.
And “got me to sit up” meant that she helped me drag both legs off the side of the bed and helped me pull up to a sitting position.

In response to my “standing” Shelly posted this on 9/25 on Caring Bridge: “We both cried it was so great to see.” (We cried until we laughed…)
She also posted a couple of short videos on 9/22…and I’m glad I don’t know how to include them here, especially the one of my right hand. It was scary how messed up I was 4 days in.

Standing has gotten easier over the past 5 months…but it’s still not easy.
One of the exercises I’m doing in PT in Feb 2024 is “sit and stand.” (That is as simple as it sounds. Simple, but NOT easy.)
Depending on the height of what I’m sitting on, I might even be able to stand without holding onto anything.
But I can’t stand up if I’m sitting on the couch without pushing off of the arm and the cushion.
And I can’t get off the toilet unless there are grab bars. (Have you ever noticed how low the standard toilet is?!?)
Standing up uses the glutes…and TM wiped mine out.
-=-=-=
Sept 28 from the gizmo: “It was an awful day yesterday. Perhaps the worst day of my life other than when my Mom died and later when John Crudele died.”
Here’s the summary of that awful experience (I went on for over 500 words talking into the gizmo): my catheter got pulled out of my bladder and into my enlarged prostate. Severe back pain and stomach pain for several hours. Confusion on who could replace the catheter. Had my first ever morphine. Helped briefly. Shift change. Catheter finally replaced. 2000 ml of urine immediately fills the bag.
I felt like I was gonna die for hours.
If my bladder had burst, I probably would have.

[The gizmo left out the part about me telling Shelly and my sister what I wanted to have happen when I died. (I’m not sure how scared they were, but I was scared plenty…)
Cremation. No funeral. A Celebration of Life at The Rock House. A headstone and a few ashes at the Weiss Cemetery outside Doe Run, MO. Some ashes sprinkled at the Oregon coast and at Gulf Shores, AL.]

Almost five months into TM, I still have a catheter and will for the foreseeable future.
It’s right there in the wikipedia description of Transverse Myelitis: “dysfunctional urethral and anal sphincter activities.” (the latter is gonna get it’s own blog post.)
I had a uroflowmetry procedure several weeks ago. At that time, my bladder and urethra were too weak for me to pee. Hopefully that will change…
But until then, I can drink mass quantities of H2O and not worry about how many times I’ll get up at night. I can eat mounds of asparagus and not care about how much my pee stinks.
-=-=-=-=
Sept 29: “Got to the gym in a wheelchair. But my blood pressure just bottomed out. I think the last reading was like 72/40.” PT got me back in bed.
Sept 30: “Today was the first day I took any steps. Walking the parallel bars. It’s going to be a slow process.” The 10 or “steps” included a therapist in front of me clutching my gait belt and a tech following close behind with a wheelchair. (This was 13 days after we headed for the ER.)
If I hadn’t taken those few steps I wouldn’t have been moved to an in-patient rehab hospital 2 days later. It would have been to a “skilled nursing facility”…i.e. a nursing home.

On October 2, 2023 I was transported to the Meyer Orthopdeic and Rehab Hospital. The typical stay is 7 to 14 days. I was discharged 24 days later. For the first 10 days I still needed the SA400 to get from the bed to the wheelchair. It was a week before I could sit up on the side of the bed without assistance. The only time I walked using a walker was in the gym with a therapist.

I improved a lot at Meyer. I had 2 hours of OT and 2 of PT 5 days a week, and a couple of hours total on the weekends. 3 of the sessions with OT involved taking a shower and getting dressed.
Those showers were ordeals and tiring. (With time they’ve gotten easier…but I will be using a shower chair for the foreseeable future. It did get easier after the haircut that first weekend at Meyer that resulted in a 14.5 inch ponytail to donate to Wigs for Kids.)
While there was significant improvement, I was still using the wheelchair when I returned to the apartment on Oct. 25.
Now it sits in a corner, unless I sit in it on the balcony or at the dinner table. (Those chairs are too low for me to be able to stand without help…)

After Meyer I received OT and PT at Ozarks Neuro Rehab. I “graduated” from there when I was discharged from OT, which focuses on the tasks of daily living. They also work on upper body strength and manual dexterity.
RE the latter, at every exercise I let the therapist know that I never had all that much manual dexterity to begin with. I did have some upper body strength b4…but not nearly as much now. (I haven’t encountered a jar that I haven’t been able to open. Yet…)

I’m currently getting PT twice a week at Cox Outpatient. The focus is on mobility and balance. At therapy I walk with no device and a therapist hanging onto my gait belt….we’re working on improving my step length.
I’m not “tim conway” but my stride is short.
In and out of the apartment I get around using a walker. As I said before, Shelly and I practice walking with a cane or “unaided”, but I’m not ready to go it alone…or outside B-307.
-=-=-=
A few things that I didn’t list above:
–I have constant nerve pain in both legs and feet. It’s a shooting, stabbing and burning sensation. When I wake up there are always spasms. The first thing they ask in therapy is if you have pain. I’m always a 2. (If they’d ask when I’m having a spasm it would be a 7 or 8. {Dentists have always told me that I have a pain threshold…just sayin’})

–There is this “banding” thing with TM. It’s a bandlike tightness, often around the belly. I also have it around my knees. All the time around both knees. (only on occasion around the belly…) It feels like I have tight knee braces on All The Time. It’s pretty maddening!

–I’ve often posted my “Monday routine” on FB (usually with a link to a song on Youtube before and after the day’s tasks).
I was a house husband. I put out the garbage. I put away dishes. Did laundry. Stripped and made the bed. Made a run to the library&Aldi. Swept the kitchen. (Some Mondays I dusted and mopped the kitchen and bathrooms.) Vacuumed. Got in 10-12K steps. Most likely I celebrated 4:20.
I “graduated” Occupational Therapy on 1/5/24…but I can’t do ANY of those things today. I do fold the laundry. I can use a broom and dustpan. (And after a several month layoff I did come across some aged gummies and a working vape pen. )

–I don’t read as much as I did before 9/18. I’m thinking it’s one of the many side effects of the 800mg 3x a day of gabapentin. (Some of my magazines barely get touched before they’re headed to a downstairs table to share.) My tablet keeps me company awhile every day with NYT and WaPo. (I read lots of headlines, but seldom launch a story that’s more than 6 or 8 minute read.)
Gabepentin is for the nerve pain. But there is NOTHING to rebuild nerves. They’ll heal (if they ever do) on their own sweet time.

–I’ve made lots of specific goals/targets/wishes since late September ‘23. Surprisingly most of them are music related. LOL.
I’ve bought tickets to shows that I had to give away.
I hope it’s not the last time. (I like treating folks to live music…)

I’ll/We’ll keep making plans and buying tickets. Shelly has encouraged me to stop buying tickets in the near term, but she knows I’ll never really stop. I’ll just be very selective about the venue and the artist.
I hope to take in some house concerts and local shows…but I’m leary of small&packed rooms.
I don’t expect to be going anytime soon/ever to any festivals that require much walking or venues with lots of stairs.

My quantity of live music will never be the same as it has been the last dozen years since moving back to Missouri and discovering The Rock House….and having “my musical epiphany.”
But it will still Be.
Not a whole lotta people that I know have seen as much live music as I have.
I know that I am a lucky…and very Grateful… old coot.

–I’m not sure how to reply to people saying to me that Shelly & I are inspirational..or whatever it is they say.
I think we’re just a couple of introverts being very open about what is going on.
When we “were courting” we shared our picnics on FB. TM is a very different kind of picnic that we’re being open about.
But Believe me, I get choked up and sincerely appreciate every time friends (and FB friends who I may have never had a conversation with) say such nice things, make compliments, tell me they’re praying.
I don’t do the third component (crying) of a “Jimmy V Day” each and every day, but there is lots of laughing and thinking every day at our place.
Kind words and encouragement always leads to tears,

–A couple of my friends surprised me when they said something like this: “so you were really sincere with that every sandwich line?”
What the Fuck???
Of course I was sincere.
Jeez.
Enjoy the Reuben or Veggieburger….or waterfall or sunset. Eat it all up. Cherish it.

I didn’t name this blog “Things Happen” because I buy into that lame-ass “everything happens for a reason” thinking.
Get Real.
Things happen until they Don’t.
U Gotta Enjoy Every Day. (There will some Hellish days. Yeah there will be. But compared to the alternative, I’ll take alive&breathing. Thank U Very Much.)

I’m often a broken record. Sometimes it’s new and different.
But somethings never change:
Enjoy Every Sandwich.
Don’t be stingy with your hugs.
Tell them that you love them. Now.
Be. Just Be.

 

Room 849 at the Jared Neuroscience: Week 1

“It still doesn’t seem Real” ends with me being paralyzed.

This piece, and any that follow, will be getting help with excerpts from “my gizmo.” The “gizmo” is a Sony Dictaphone. {I bought one for my Dad several years ago in the hopes that he would tell lots of his stories into it, so that I would have them for posterity. He dubbed it a “gizmo” and it was only used when I was at his place. I got one for me and use it to clandestinely record our phone calls. Shhh…he doesn’t know.}
Since I wasn’t able to use a laptop between 9/18 and 10/26, I started keeping “notes” using the gizmo while I was at the hospital and inpatient rehab. {I have been keeping a journal on my laptop since 10/26/12. Wish I’d started loooong b4 that!}

On the morning of 9/18, as soon as a room was ready, they transported me to Room 849 of the Jared Neuroscience wing of Cox South. I wasn’t able to use the gizmo until the 23rd.
“They seem to know what they’re doing. But they’re having trouble diagnosing exactly what’s wrong with me? They put me on something called an IVIG* thing on Monday and on Tuesday I was getting a little use of my left hand, still nothing with my right on Tuesday and I’m probably getting some of this messed up because I’ve been on so many drugs, but not the kind of drugs I like.”

At first they thought it might be GBS. “There’s the Guillan-barre syndrome. And this other one. I have a total mind block on what it probably is…I can’t remember the name!” {I’m pretty sure I’ll never ever forget those two words now: Transverse Myelitis!}

My extreme claustrophobia didn’t help with the diagnostic process. “On Tuesday they sent me down to do an MRI and as soon as I got into the tube I pressed the button. I was freaking out. An hour later, they sent me back down. I stayed in there for like 40 minutes. I don’t think I squeezed the button, but maybe I did and it turns out that they would have liked two passes, one without contrast and one with. I didn’t do the with contrast, and came back upstairs.”
My neurological NP and hospitalist were great. They told me how important the MRI with contrast was. “They loaded me up with Benadryl and a shot of Ativan and I did it for the duration. They discovered I have a lesion on my spine, which is complicating the diagnosis. Because it might be an indication of Ms. Isn’t that lovely?” {No MS…but it was also an indicator for Transverse Myelitis!}

“The next procedure that was done was the Spinal Tap, which wasn’t painful at all in my drugged up state. They roll me up in a ball as tight as they can. Which is really hard based on the lack of mobility, especially on my right side. They sent some some of the spinal fluid to the Mayo Clinic to have it diagnosed. No MS”
I didn’t mention it on the gizmo, but about that time they started me on IV steroids for several days.
“The next treatment that began was plasma transfer or PLEX, and that started on Friday. That involved putting what they call a catheter down the carotid artery in the right side of my neck. It’s got 2 little ports and what happens is on one side they’re flushing plasma out of my body. On the other side, they’re putting new plasma into my body, and so they get about 20% of the plasma each of the 5 treatments. When they’re done you’ve had ‘an oil change’ of your plasma. Each procedure takes three hours. It addresses both the Guillan-berre and this other one, which I guess I’ll keep calling ‘the other one’ until I get can remember it.”

So those are the treatments: IVIG, spinal tap, IV steroids, IV antibiotics, Plasma transfer.
But how was I doing? The gizmo was no help for that first week. Fortunately Shelly set up a Caring Bridge site on Friday the 22nd and wrote about it there: “He can move his left hand now and has a very strong grip! He is feeding himself, taking a drink of water, and brushing his teeth with his left hand. He can pick up his left leg and wiggle his left toes. He can move his right hand, but not his right leg. With help, he was able to sit up on the side of the bed twice.”

For the first few days either Shelly or my sister Paula fed me and brushed my teeth. Four days in I was able to pick up a fork and a tooth brush in my left hand. Shelly or Paula slept every night on a couch while I was in room 849.

She also wrote: “He gives the nurses, the aids, and the docs his personal recommendations for music and tells all kinds of stories.”

All the rooms on the 8th floor were large and private. Mine had a great view. I saw lots of sunrises (I wasn’t sleeping well) and moon rises.
I had Shelly bring my laptop (with it’s thousands of songs) and Bose speaker. She had to operate the laptop to launch the playlists. (I didn’t touch a keyboard for almost 6 weeks.)
There were “concerts from” playlists from several years of bands I had seen that particular year. Several were 6 or 8 hours long from years when I saw 50+ shows and went to a few festivals. The staff started calling 849 “the party room.”

They did that even when they were responding to me pressing the call light when we thought I might have had “an accident.” Losing feeling from the mid-torso down also meant that I had no control over my bowels. (Smell was the deciding factor re pressing the call button. I had a catheter, so urinary incontinence wasn’t an issue.)
As if that isn’t TMI there is this: I’ve often told people that if I had 1000 bucks for every individual who wiped my ass in Room 849 I’d be able to buy a new Lexus.

I had some visitors. (I’m sure tahe some of them were freaked out!) I made and received a few calls toward the end of the week. Shelly read me the comments on Caring Bridge or comments to her FB posts.
I had lots of Jimmy V moments: I laughed; I thought; I cried.
I really am a lucky old coot with old friends and many that I’ve made since moving to MO in 2011.
And so ends week 1 of “the other one.” In week 2 the words “Transverse Myelitis” became indelibly etched into my memory.

 

*IVIG= “Intravenous immunoglobulin (IVIG) is a pooled antibody, and a biological agent used to manage various immunodeficiency states and a plethora of other conditions, including autoimmune, infectious, and inflammatory states. The ultimate goal of this therapy is to normalize a compromised immune system.”

It still doesn’t seem Real!?!

Eight weeks ago, on September 18, I woke up in the Critical Decision Unit at Cox South Hospital in Springfield, MO.  Five days earlier I had my 75th birthday.

I was paralyzed from the shoulders down.

I could move NOTHING.

As I tell the story, as I see my body that morning in my mind’s eye, and as I type this, it seems like a dream. A very, very Bad One.

But it was/is Very Real.

The day before had been a normal Sunday. We’d been up late the night before. Six bands kicking off Drury University’s 150 year Anniversary. Our first time seeing the Ozark Mountain Daredevils. Late night eats at IHOP. (No place in town to get midnight pie, so I had to settle for pancakes with strawberries and whipped cream.)

The 17th started with a quick stop for Shelly at the library while I washed the car with a wand across the street. Then grocery shopping.

At 2pm or so I grabbed a snack and settled in to watch the KC Chiefs with the announcers muted and Jason Isbell playing on the stereo.

As I was about to sit down it seemed like I had stepped on something. I rubbed the carpet. Nothing. I had vacuumed the day b4.

The ball of my right foot felt funny.

Half an hour later it was the same thing with my left foot.

I took a short nap after the game and didn’t stand up again until 5 when I put my shoes on to go for a short walk and to check on my garden.

My ankles and feet felt tingly. Pins and needles.

I cut my walk short.

As usual I called my 97 year old Dad at 5:30.

After the call I headed for the shower…and admired Shelly’s strawberry rhubarb pie.

(I never got a bite of it. It was 38 days until I was back in the apartment.)

In the shower the soap in my hand felt weird against my body. (I still can’t find the word for this sensation…which continues in my lower arms and from the waist down. “Weird” sums up this nerve pain…)

I knew something wasn’t right.

I cut my shower short and told Shelly that we needed to head for the ER.

My walking was getting shaky as we headed for the elevator.

{We almost always took the stairs in our 3 story building.}

Shelly got the car as I sat on a bench out front and waited for her to drive us the 1.4 miles to the hospital.

She walked me inside Cox South and quickly got me into a wheelchair.

Surprisingly the ER was almost empty.

The computer system was down.

It took 15 minutes to get a bracelet.

{You don’t got anywhere in a hospital without a bracelet.}

The delay didn’t matter in the long run..but it was frustrating.

Not too many minutes later I was being evaluated by a Nurse Practitioner.

She checked to see how far the “pins-and-needles sensation” (aka Weird) had advanced up my legs.

I squeezed her fingers. My hands were strong.

When she asked me to push her hands, I almost knocked her off her feet.

We both laughed.

That was the last thing I found funny for awhile.

They moved me to the Critical Decision Unit.

You feel like you’re in the hospital (you’re in a gown and you have an IV), but you’re not admitted yet.

They whisked me away for a CT scan…and after that things get murky until I woke up, so I’ll rely on what Shelly tells me.

But I sorta remember the 3am MRI. It should be no surprise that I had been in that godforsaken tube for only a minute b4 I pressed the panic button…and not just because of my intense claustrophobia. I knew that something was very wrong and I was scared.

After being told that I was being admitted Shelly made a quick trip to the apartment to grab a few things. She notified my sister and let her know what was going on.

When Shelly got back 30 minutes later I was thrashing about with muscle spasms in my arms and legs. (That was the last time they’d move for several hours.)

She went looking for someone for help.

I was hollering repeatedly I’m gonna lay here and die!!

They gave me some medication to put me to sleep.

I’ve already told you what happened when I woke up…this is the start of this adventure.

Part 2 in several days: My time at Jared Neuroscience.

Room 849 at the Jared Neuroscience: Week 1