Notes from CureIous' at Stanford

[jimmylegs]

definitely gives me a pang that you still have peek's #!!
really great to hear that you've found a stellar specialist - a diamond in the rough. i'm fortunate to have connected with a supportive and collaborative specialist here. It can definitely take time and energy to find the right support.
if i knew the cure for tunnel vision, i would definitely relay!!

[CureIous]

Pangs here too. My buddy that drove me up there back then is gone now too, he was standing right there when I called her on the way back.
It is fun though to twist the young doctors arms, the ones fresh out of med school.
Awww, so cute look at you with your pretty smock. I say "Stanford" it's like saying BOO!

[CureIous]

When your orthopedic surgeon asks "what's MS", just walk out. Seriously.
You don't have to be an expert or anything, but I'm pretty sure the average Joe on the street knows say "arthritis" . Let alone a medical professional not having a CLUE about MS?

[jimmylegs]

oh that's tough for sure. i don't tend to encounter too many amusing newbies myself. have just been gradually navigating relationships and having to be patient - all while the clock keeps ticking!
speaking of which, gotta go eat. empty tummy is not impressed with the first zinc of the day lol

[CureIous]

Like it was yesterday.
Actually improving now physically vs last year, that baby that was in mommy's belly back then in 2009, when couldn't drive self there, nearly 100% dependent for simple day to day stuff, and now child #3 is coming, options are very limited, was very little hope springing eternal.

That was 2009. Desperate but resigned to fate.
2026: oh let me count the ways, God is good first off.
Holly, and my best man that drove there are gone, but replaced with the sweetest of memories.
That baby that was in belly?

He started his high school journey just a couple years ago, along with community college same time, he wants to be an electrician, he's a sophomore in both now.

Just holding on for dear life, eldest got into teaching, middle child is going into nursing, and dad here is in some ways doing better now than in 2009!

Healthwise: that's a very mixed, very busy bag, what with MS for going on 22 years, (atop aging duh) the amazing thing is things just reversed course, went from "handicap spot shopping", hoping it wasn't too far from parking spot to front door, to legit LOST the placard, and haven't kept the cane stashed in car since end of last year.
And instead of barely making it out to mailbox and back, am hopping around like a jack rabbit, even went atop 12' ladder to work on roof a little bit.

Yes, amazingly "still have MS", the ACC nerve damage due to stents pinching left side, atop the migrated stent lodged in pulmonary artery, because that caused atrophy in the trapezius muscles, the left side shoulder/clavicle is "winged", as the traps stopped supporting shoulder blade and physics took over. This is partially amenable, but you need to do the correct PT the correct way, it's very specific.

So on so forth. Yes have oodles of lesions so no surprise there, consequently however, knowing what proper venous flow is, understanding how that thoracic pump keeps our brains properly irrigated from O2 waste, and how no matter how you *feel*, MOVE.
Like best man Don used to tell me, if you can't move your legs move an arm, or a fingertip, just move and don't stop.

ALSO cannot stress enough how important it is to view oneself with the proper lenses, from 30k feet.
#1 stopped referring to self as "crippled", "old man", "broken down" etc, which is *easily* bolstered by the 6 feet thick stack of medical PAPERWORK, a mental negative feedback loop.

Instead, HIGHLY recommend John Sarno, just start in middle of book, where the doctors are talking about their Px, chapter 6 is a *perfect* starting point in this book.

Haven't seen a neuro since 2023, the old guard retired, and the NKOTB are downright scary.
When you see your new neuro broke his teeth the same time you got MS, it's almost like "pull up a chair doc, let's talk" lol.

Any one of us MS patients is more knowledgeable about the day to day, than all the degrees on wall can imagine.
*They* learn from *us*, not the other way.

Seriously thought back then, "baby is coming and how will we handle this?", now it's "yeah wait til they start driving" lol.

Am ENJOYING our kids, being a dad kicking around leading when that guidance is needed the most, and am immensely proud. Period.

Mark.

[CureIous]

Nothing better than coming alongside a 30 something, with a disabled vet dad my age with MS, just hand em a copy of Marie's book and the patient is right here to support you with knowledge, as he's also fighting agent Orange exposure during Gulf War.
Taking care of his dad is a full time job, but it's nice to give advice, with a shoulder hug, because I KNOW that sense of being forgotten.

[Sharon]

Nice to hear you are doing well Mark. I am at the stage of life that aging is a real thing. At 82, I still can get out on the golf course and hit the ball down the middle...it just doesn't go as far. The MS is retired...I deal with the leftover damage from years back. Have survived a right lung sarcoma where 2/3 of my lung was removed. It is amazing how the body can heal as I have little to no issues living with a partial lung.
We were quite the group of warriors back in 2009. I hope most are still doing well.
Sharon

[CureIous]

Doing well actually thanks for asking!

That embryo that was in mama's belly when I came up in 2009, is now taking driving lessons, is in both high school and college dual enrollment, wants to be an electrician.

Middle daughter in medical college.
Eldest a teacher. I stopped working around 11 years ago, been on SSDI for a few years.

Stent that dropped on right side is still obvious every time get an xray or CT, the fix is worse so am leaving it.
In fact saw superstar ortho surgeon today, he works with the Mayo clinic and knows all about accessory nerve damage, he said today my trapezius muscles upper and lower are atrophied, which makes a winged scapula on left side which is where the ACC nerve got pinched and didnt notice shoulder weirdness til maybe '16, which led to years of discovery.
This surgeon who is *not* interested in doing a TTT or modifued Eden-Lange procedure unless patient is 100 down, so he tailored a PT program and showed me how to activate the rhomboid and levator scapulae muscle groups which takes more mental effort than physical prowess. Its a chore but only thing that helped.
Haven't seen a neuro since 23, only one ever had retired then was lost and have been looking ever since. Still havent taken drugs, kinda pointless now, I really think I have smoldering MS, problem is when you get older and stuff falls apart, it's ALWAYS this default "must be the MS" lol.

We know more about what is an isn't than they do, that's for damn sure.

Meh, still kicking butt and taking names, would kill to be able to golf rn too though, weather today was beyond pretty. In some ways am doing better than in 2008 so that. Not 39 any more, kids will AGE you lol. I'm 140 or something.
Good to see you.
And yes, I'd do it all over again. With some minor tweaks. I've talked to maybe 3 in just tge past week, with relatives immobilized or suffering with MS, one thing absolutely 100% I tell people is ya gotta stay moving. Period.
Blood flow matters. Thoracic outlet pumps matter, even if it hurts or you think you can't, try anyways.

Highly reccommend John Sarno The Divided Mind. Wow. The brain is powerful.

[CureIous]

Hey all WHAT'S UP?
Lol. After 3 years of searching found an MS doc, takes a bit of fast explaining r.e. all that metal in IJV's and the displaced stent dr Dake wasn't interested in telling me about back then, but nevertheless, just two days ago had a foot race with my 16 year old son, who is almost my exact size now, excelling in both high school and college at same time, keeps a dad BUSY however, reason came in is this MS Dr, started when I was two years old, talk about SHARP, I have 21 MRI's at radnet so help yourself doc, he did something no neuro EVER did, put my 2017 MRI on screen, next to 2023 and went to board and wrote NEDA.
No evidence of disease activity.
Shut the front door eh?
Wish could share the pic.
I think about Holly and Oliver and everyone else all the time, has it been that long already?
The ACC nerve damage from stents on left has left the upper and lower trapezoids atrophied, that was from a Mayo associated surgeon, brilliant man, but instead of having a modified eden Lange procedure which is disfiguring but works for winged scapula on left (been that way for a decade now, misery ) OR, do PT like maniac, strengthen the rhomboids to replace what the traps cannot do anymore, it worked last year but sciatica took me out like ER 3 days level so the shoulder stuff went on hold.
Just getting back into groove that PT place is chock full of brilliant physiologists, learn a LOT from them.
Apologies for lack of paragraph breaks, doing 12-14 hour days right now just managing the chaos, but always always remember, that boy was in mama's belly when I went up to Stanford in '09, and daddy couldn't even drive up there let alone do some big surgery 300 miles away, with two kids at home, but people rallied and helped a lot, it was not a solo effort.

I miss my best man who drove me up there, he passed a few years ago, but at the time put all his grandkids in our van, and drove them to see him one last time. It was an HONOR.
He said "Mark you just get in the car and I will drive you there and back, don't worry".
He was 30 years my senior, hey I was a stranger kid hanging out with old people lol.

God bless everyone take care.
Much love,
Cureious Mark.