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 (A thru L) 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 the phone.
They’ve been saying that since the first few days after I woke up paralyzed.  I think the gabapentin has dulled me some.  I’m not quite as quick as i was…and my memory isn’t quite as good.  Add in that I’ll be 76 in <3 months.  But I’m still pretty good above the shoulders.

Transverse Myelitis.  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….