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….

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