Maybe it’s permanent. Grounding that is.

Discussion in 'Medical Topics' started by denverpilot, Dec 14, 2019.

  1. denverpilot

    denverpilot Tied Down

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    I’ve been avoiding this update but friends are asking and I suppose it’s time.

    My symptoms from my spinal cord/immune system damage haven’t stabilized and have gotten worse.

    Currently the right hand is pretty much a fancy claw. Fingers don’t behave for fine motor skills. Atrophy has taken a toll. I can still drive with it but it’s a constant source of pain at this point. It either hurts from neuro “burning” or from spasticity and things tightening up. Drugs can control it but we’ll get back to that. Left hand has some atrophy on the outside large muscle and slight burning.

    Meanwhile legs have joined the fun. Numbness from top of belly down in the front, waistline to heels in back. This is on the surface and while “weird”, completely livable. I don’t know how to describe it since temperature sense is fine. Imagine you can’t feel how hard the water is hitting you but you can feel that it’s nice and warm and feel that run down your leg. It’s ... odd to say the least. But it doesn’t hurt. I “lost” my iPhone in my jeans pocket one day because I couldn’t feel it in there.

    Feet, numb all over but thankfully and oddly, toes have more touch sensation than the bottoms or tops. The good news is, you won’t cuss much if you stub a toe, but they still give enough sensation to walk. Right foot is attempting to exhibit foot drop. Physical therapist is angry at that and helping me fight it. So far we’re holding it off. Electrical stimulation of the muscle that holds the foot up and lots of evil exercises. Even just sitting and tapping toes.

    Right vs left. Right side is always worse than left. Physical therapist joked that if we cut me in half the left side will do fine. Right hand, right foot worse.

    Walking pretty much looks like Frankenstein on a bad day and I can concentrate and make it look pretty normal on a good day. Truly can almost make it look normal on a bad day with lots of concentration.

    My gluts of all stupid things are atrophying so I get fun exercises for that and get to joke that I have a lazy ass. All walking is very stiff and spasticity goes from nothing to outrageous depending on the day.

    Banding. This is a common MS thing. You can look it up. I don’t even know how to describe it other than someone wrapped you in an inner tube that’s almost too small to go around you. Can happen for me at top of belly, below the belly around the waistline, or very commonly for me around both thighs. The muscles aren’t always truly tightened but that’s what it feels like. A giant squeeze. First one around my top of belly I thought I was having a heart attack. Had so many of them now I barely pay attention to them.

    MOST of the deep sensors in muscles that tell you where limbs are are unaffected except those gluts. If you put me face down on a table and tell me to push my leg toward the ceiling. I will push fine, but the leg will wander left and right if I can’t see it or really concentrate on feeling where it is. Prioception I believe this is called? Anyway my physical therapist joked that she should have known better the first time she had me do that for glut strengthening and she about got kicked in the head. LOL.

    As usual I want to thank @bbchien for his wise counsel throughout and his latest words of wisdom are that symptoms need to stabilize. He asked if I was on an MS modifying drug and I am. Those drugs are 100% FAA disapproved of course.

    This isn’t a fight for my FAA medical anymore. It’s a fight to stay walking and working.

    Work has been great about all of this but I’ve been doing three days a week of PT and working from home A LOT in the months since my last update. I now have standing desks at both home and office and stand as much as I can at the computer. Work hours are roughly half time. Either from PT or pain or sleep loss or whatever the hell, something is always sucking away time. Everything takes longer.

    Getting ready for the day now takes at least an extra hour. Mainly being super careful in our largest shower and doing stupid stuff like putting socks on. If the legs have decided today is a spasticity/tight day, crossing a leg is done by yanking on a pant leg and bending to reach toes. Doing this with banding going on is no fun, but you know it’s a fake sensation so you just do it.

    Okay the topic I hate. Drugs. Still on moderate dose of gabapentin which does dull the hand burning reasonably well. However gabapentin blocks everything indiscriminately so sensors needed for good balance and posture and walking go into la-la land if I drug up enough to not care about the hand. Also the hand becomes more useless when it feels “good”. Far better to balance the amount and timing of the stupid gabapentin so I can walk and let the hand burn a bit.

    And like a lot of inflammatory based things, lots less burning in the morning when you first wake up, but a lot less responsive too. Usually takes a bit of opening and closing that right hand before you reach for the morning coffee cup with it. And yes, use that hand. No being left handed. Use it or lose it.

    If you sleep on an arm wrong or sit wrong and don’t notice you’re putting something to sleep, you’ll have a scare that paralysis finally came for you. It’s a creepy feeling. Have done it once to my right arm and once to my right leg. Hyperextended the knee a little that evening too. Was getting up when I realized it wasn’t moving. Sat on the nerves or the blood flow was cut off, and didn’t notice. Super super creepy.

    On a really good day a single naproxen sodium will be enough to knock down the stingy annoying right hand and go about doing pretty much anything. On a bad day, you accept the burning pain in the hand and walk, or drug up a bit more and wobble.

    It’s... a fight. A totally different fight than I expected. There’s other symptoms also. Neurogenic bladder and bowel issues. Bladder is close to normal. Bowel stuff put me in the ER in September. Doc prescribed a pretty effective drug for it and a gastroenterologist agreed with it and said everything else looked fine on the CT scan.

    Mentally still good. I mean, it ain’t exactly fun staring down a life long disability, but I’m still me and not depressed or anything. After spending a lot of time in a private patients only support group, I actually feel pretty damn lucky. This thing puts people in wheelchairs for life, sometimes in two or three days. Hell, it could still put me in one, but if I’m up and walking now, I’ll fight it.

    So far the drugs and such haven’t been awful financially. Losing work time is rough but we were always no debt people so budget adjustments made, we continue on. PT is by far the most expensive part and gets capped at roughly $6K a year.

    Jan 1 the pharmacy side of things changes so we are currently going back through all the pre-approvals for drugs already approved and such. Seems more annoying to me than the Docs. They see it all the time and have staff who spend inordinate amounts of time dealing with it who also know all the tricks. The Docs seem more than willing to raise a figurative middle finger to anybody who says they can’t treat patients however they want to. So far they’re pretty good at it.

    Like Bruce said, the critical medical thing right now is stabilization of symptoms. We go much further into the bad trend, and walking becomes a major problem and the hands both get worse, I’m in big trouble. Right now the emergency has been declared and the airplane is still flying but we have significant controllability issues.

    Other pain is related to neck and shoulder and mid back spasticity and tightness and really not significant other than super distracting at times. Dealing with the right hand takes care of it drug-wise. That and inordinate amounts of stretching. We spent a lot of time at PT on the neck and it’s pretty decent now. The focus shifted to leg weakness and balance practice as the walking got worse.

    I do balance things my wife says she’d fall over doing. Here, stand on one foot and throw a ball at a trampoline and catch it. Or balance on this teeter totter board for two minutes.

    Lately it’s squats squats and more squats on the incline machine. And ankle/calf lifts. Lots. The muscles are hanging in there and I can control them fine so far. Oh and upside down incline hamstring and glut lifts. Heel raises and standing on my tippy toes. I couldn’t do this crap when this stuff all worked right but I can do them now! Ha.

    So there ya go. Right now I don’t think I’ll fly again. Just an honest assessment of current status. It can get better, it can stay the same, or it can get worse. Only time and effort will tell. Like I said, it’s a whole new fight. Flying is secondary. Waking, driving, and such is primary.

    Karen is awesome. She’s been hanging in watching all of this like any medical professional would. Making me eat healthy. Helping me out on bad days. And joking that she’s in this for the handicapped parking and I’d better get that paperwork done! Hahaha.

    We have a test travel trip to see how I’ll do in a fairly controlled environment with good ADA support if needed, early next year. See how that goes.

    Right now Oshkosh is probably out. It’s too much walking. I know they have assistive carts and such but it’s ... a lot of walking. It’s a goal to push a bit when weather gets better and see how that much walking would go, in stages.

    So that’s about it. And for the South Park fans... Timmmmay! LOL.

    (One of the guys in my support group is named Tim and yes, he got the license plate in his state! Hahahaha.)
     
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  2. Let'sgoflying!

    Let'sgoflying! Touchdown! Greaser! PoA Supporter

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    Thanks for the update, Nate - I’ve been wondering how it was going. Envious that you can have a great attitude when dealt a tough one; pretty sure I do not come close to having your fortitude.
    Keep us in the loop, even if not flying. We are friends first; the flying stuff just got us together.
     
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  3. Greg Bockelman

    Greg Bockelman Administrator Management Council Member

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    Man, Nate. Sorry you are going through this. What Dave said.
     
  4. dbahn

    dbahn Pre-takeoff checklist

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    Yikes!

    That's a tough, tough story - but thanks for sharing.
     
  5. JOhnH

    JOhnH Touchdown! Greaser! PoA Supporter

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    When people don't know what to say, they often don't say anything. Nate, I really don't know what to say.
    After following your posts for 10 years, I feel like this is happening to a good friend. Remember, miracles do happen.
    Thanks for letting us know what is going on. Your attitude shows that you are a better man than I am. Hang in there.
     
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  6. EppyGA

    EppyGA Touchdown! Greaser!

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    Nate, thanks for the update. I am deeply saddened to hear about all of this, but you are a warrior and will surely continue to work hard and battle this thing.
     
  7. 455 Bravo Uniform

    455 Bravo Uniform En-Route

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    Thanks for letting us know. It sounds like you are getting the best care and making the most of the situation. Take care.
     
  8. kayoh190

    kayoh190 Super Moderator Management Council Member PoA Supporter

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    Appreciate the update, Nate. Really impressed with your attitude about it - not sure I’d be able to handle it nearly as well. Hang in there buddy.
     
  9. JOhnH

    JOhnH Touchdown! Greaser! PoA Supporter

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    @denverpilot
    Nate, I was just looking and I see that we have both been on POA for around 10 years, but your post count is > 4* mine. I just wonder what our respective word counts are? ;)
     
  10. Dave Theisen

    Dave Theisen En-Route PoA Supporter

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    Sorry to hear it’s gotten worse Nate. Keep giving it hell!
     
  11. Cap'n Jack

    Cap'n Jack Final Approach

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    Sorry this is happening. Wishing you the best.
     
  12. Ryanb

    Ryanb Touchdown! Greaser! PoA Supporter

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    Absolutely. I’m sorry to hear this, Nate! Glad to see you have such a great attitude and you’re keeping your chin up. Thanks for the update!
     
  13. jordane93

    jordane93 Final Approach

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    Aw man. Sorry to hear. Wishing you all the best.
     
  14. Rushie

    Rushie Pattern Altitude

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    Dang Nate. Sorry to hear you have MS, if you've talked about it before I missed it, I am on and off the board. Sorry it's getting worse and you're coming to terms with not flying. I gave up myself due to medical problems though not as bad as yours, and I still got to co-own a plane and fly right seat for years, but it looks like that might be over with for us too.

    Facing not flying anymore is very strange and sad, but as you said, walking and basic functioning is a higher priority now. It sounds like you are doing everything you can to stay functional and are getting the best care and support. Hang in there.
     
  15. write-stuff

    write-stuff En-Route

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    I join the rest with my best wishes. It sounds like a cruel existence and I am so sorry for you. Chin up, as best you can. Thumbs up from your friends!
     
  16. azure

    azure Final Approach

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    Nate, sorry to hear your condition is not stabilizing so far. It does indeed sound like full-blown MS. Have they considered switching you to another DMD? Here is hoping you can get things under better control... if not to fly again, then at least to stay fully functional on the ground.
     
  17. asicer

    asicer En-Route

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    Jeez. Hope things get better!
     
  18. Skyrys62

    Skyrys62 En-Route

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    Meet the Fokkers
    You're the coolest Frankenstein I know.

    ...and no more wondering what to do on Halloween!


    Seriously though, truly sorry this burden is upon you.

    I am glad to see you still have all of your wits about you, and choose to stay here with us, you're a true PoA member/friend.
    but even if you lose your mind, you'll still fit right in :smilewinkgrin:

    And don't forget, you can still come to a fly-in.
    (I'll make you some underwear)
     
    Last edited: Dec 14, 2019
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  19. Everskyward

    Everskyward Administrator Management Council Member

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    Your typing skills haven't diminished. What was the word count in that post? ;)

    Or maybe you are using voice assisted typing. I have a friend who was unable to use his hands very well because he had just undergone neck surgery to relieve pressure on his spinal cord. But he would text me long messages, which was puzzling. Finally I asked how he was able to text so well. He said he was using the voice feature. :)

    Seriously, wishing you the best, Nate. Health is more important than flying any day. IMHO.
     
  20. AggieMike88

    AggieMike88 Touchdown! Greaser!

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    The original "I don't know it all" of aviation.
    Thanks for the update and the CFI encouragement in the other threads.
    Let us know if there is anything us PoA mugs can do for you and Karen.
     
  21. geezer

    geezer Pre-takeoff checklist

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    Nate, we are getting together with my wife's cousin, also fighting MS, before Christmas. She has a fine husband who does what he can to keep her going,

    Without your wife, life would be near impossible, and we are pleased that the two of you are working together in this fight. Best wishes in all the small parts of the fight.
     
  22. wsuffa

    wsuffa Touchdown! Greaser!

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    Nate, thanks for the update. Tough situation - I *hope* it stabilizes or goes remissive relatively soon.

    I had to laugh at the last part - I have an in-law that has MS... before it was diagnosed, she would have episodes of numbness or difficulty moving limbs on her left side. It would go away, but come back more frequently as she got older. When the symptoms would occur (pre-diagnosis), she referred to the symptoms as "Timmy"... as in "Timmy has come to visit...". Your "Timmmmay!" reminded me of that....
     
  23. Rushie

    Rushie Pattern Altitude

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    This relapsing remitting business, I wish we could figure out what triggers flares and for that matter the “cause” in the first place. So many diseases “etiology unknown” - drives me nuts.
     
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  24. tspear

    tspear Pattern Altitude PoA Supporter

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    Nate,

    Thanks for the update. If you ever want a co-pilot and just punch holes in the sky; let me know.
    I try and get to the Denver area once or twice a year...

    Tim
     
  25. Greg Bockelman

    Greg Bockelman Administrator Management Council Member

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    Get Karen to learn how to fly. LOL
     
  26. denverpilot

    denverpilot Tied Down

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    No bites on that one yet! LOL

    She does usually drive when we are together now though. No point in adding risk. Haha.
     
  27. gkainz

    gkainz Final Approach

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    Nate - so sorry to hear the continuing progression of all the symptoms - your attitude on all this will keep you in the game - keep giving it all you can!
    Greg
     
  28. Velocity173

    Velocity173 Touchdown! Greaser!

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    Sorry to hear Nate. Great attitude though. Don’t worry about the flying stuff, just try and stay healthy. Hang in there.
     
  29. Half Fast

    Half Fast En-Route

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    Very sorry you're dealing with this, Nate. Like Churchill said, "When you're going through hell, keep going." Focus on health and don't worry about flying for now. And while you may not be PIC, I don't think you're grounded yet as I'm sure many of your fellow pilots will be glad to take you up. Let me know if you ever get to central Florida and I'll be glad to have you in the right seat for the nickel tour.
     
  30. denverpilot

    denverpilot Tied Down

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    Appreciate the kind words, all. Means a lot.

    Attitude wise having access in the modern world to support groups for rare disorders is somewhat amazing. I hate quite a bit of what the internet turned into as it commercialized but the groups thing is one very good thing. Especially private ones.

    We have a lady who’s been hiding her hand pain and condition from her employer for years just to keep their great insurance. That’s just sad.

    There’s also a lot of news passed in such groups. An interesting one lately... a case is headed to SCOTUS if it can get past an aide and likely put on to Gorsuch’s desk. It hit SCOTUSBlog recently which is a good sign.

    Guy is single, is afflicted with this disorder. Attempts to apply for SSDI. Denied. Loses job, and home. Attempts to appeal. Does it in the wrong jurisdiction unknowingly. Judge says go to the right place. Statute of limitations expired in the meantime.

    The case is whether or not the misguided attempt by someone broke without an attorney should have counted toward a reset of the time limit.

    Initial case was in 2005. Very little was known about the various cousins to MS then and still to this day none of them are in the SSDI “blue book”. SS spent way more fighting this guy than just paying him. If he wins, they really spent their time and money poorly because the precedent change is massive.

    Anyway. Thompson v Saul. Be interesting to follow. If the SCOTUS says the attempt to do the right thing by a disabled homeless guy did reset the clock, that’s huge for a whole lot of suffering people who probably shouldn’t be put through this crap in the first place.

    As an aside. The five year job loss numbers for folks afflicted with TM is nearly 100%. I’m beyond blessed to have an employer who not only can afford me being in and out business wise (because it’s just business after all) but also three bosses, two or which have had major medical issues through no fault of their own, and one who broke his back.

    It’s rare to work for people who know how much time even basic recovery from fixable things takes. Let alone folks who have their own unfixable things.

    So. Plugging along. But have read quite a few stories about folks caught between healthy and legally disabled. Lots of people grouse about those who game the system, and rightly so, but there’s lots who aren’t and fight SS for years and years.

    The entire system is set up this way. The lawyers get paid from the back pay if they win.
    Talk about screwed up incentives.

    Anyway just a side topic that I’ve unfortunately had to research.

    MS? Blue book, two limbs affected, barely a fight. Approved.

    Cousins to MS with the exact same cord damage? Not in the book. Apply. Wait up to two years. Denied. Hire a lawyer. Two more years.

    I hope the guy and his lawyer hand SS their ass.

    Without these modern support groups people ended up isolated and didn’t even know who to ask simple questions of. Today it’s kinda funny but new people show up and ask...

    “Anybody have THIS symptom?!”

    They get twenty or thirty “Yep!” Answers back in less than an hour.

    Just reading those you can figure out most of what you’re in for! LOL.

    The place is also good for venting. The most epic rant I have ever seen anywhere ever was a dude who’s had neurogenic bowel issues for 20 years. Haha. He described his “routine”
    where he literally manages to poop once a week. Drugs and all. And it’s on the family calendar. And everyone knows you leave him the hell alone for those four hours.

    He knew it was awful and also funny as hell. What’cha gonna do but laugh a little?

    Some folks get the worst symptoms or just get one really bad like him. Guy works construction, has recovered from weakness, no pain or minimal, but hasn’t pooped more than once a week for 20 YEARS. LOL.

    It’s about 50/50. Half the people in the group
    are working and afraid they’ll lose the job. The other half are paralyzed or whatever and say they couldn’t even think about working.

    About half and half on humor, too. Some folks are just sad and rightly so. I cringe when a 20 or 30 something shows up and introduces themselves. Ouch. Especially those with kids. Heartbreaking. “I’m currently on steroids and paralyzed from the chest down... it’s nice to meet all of you. My husband is great he’s taking care of the four kids...” those are rough.

    I also realize now that neurologists see this all day, every day. Holy crap what a job.

    Every week the admins post a welcome to new folks. There’s 20-30 a week.

    Spouses and caregivers are allowed in the group also as long as they agree to maintain the anonymity of patients. There’s a subgroup of patients only so patients can ask things that might scare their spouse.

    It’s pretty impressive the tech actually helps instead of just used for the usual uses of social media.

    YouTube also. People post stuff about what they’re going through. Can be interesting. Stick your “favorite” disease or disorder in the YT search engine sometime... wow.

    Sorry. Long as always. Just felt like sharing the SCOTUS thing and it requires a lot of background to even “get” what the case is about.
     
  31. denverpilot

    denverpilot Tied Down

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  32. NoHeat

    NoHeat En-Route

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    I’m impressed by your courage, Nate!
     
  33. denverpilot

    denverpilot Tied Down

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    Don’t be. Lots fighting far worse.

    And as I’ve joked with my wife... what choice do I have? Not going to lay down and give up at my age.

    Wake up with hands and legs that don’t want to work right, you pretty much have no choice but to do the most basic thing that makes us all human... adapt!

    Monkey can’t swing from tree anymore, monkey better figure out what’s edible down here on the ground! LOL.

    Little stuff. I wrap the dog leashes around the bad hand. It might hurt more but if I need the good one... and if they pull me down it’ll hurt but they won’t run off into traffic.

    Shoes. Sturdy. Leather. Good soles with some traction. Watch where you put your feet.

    Stupid stuff like that.

    Still I’m also the moron who tried to carry a 50 lb Dell server into the house alone. I was quite proud of myself at the top of two short sets of stairs. Then proceeded to trip over the server I had just set down for my victory lap. LOL

    Here’s today’s fun. Four checks to deposit. Bank has an app you take a picture... you know. App has had a bug for a while that breaks it.

    I see there’s a new app. Yay. Open, take photos then see new instructions. “Any checks without this written above the signature will be rejected. “For mobile deposit only to [Long Bank name].”

    Yeah I’m not chicken scratching that out four times with my bad hand. That’ll take half an hour. I can’t even write that small anymore. Haha. Karen is out doing Christmas gigs and I promised I would handle this errand.

    Drove to ATM 15 miles away. LOL. Easier. Adapt. Still a waste of lots of time but it got done.
     
  34. Tantalum

    Tantalum Final Approach

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    Man I'm sorry.. thanks for keeping your PoA family in the know..
     
  35. Timbeck2

    Timbeck2 Final Approach

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    Timbeck2
    I have no words Nate other than it really sucks and I'm glad you're still entertaining us with your posting.
     
  36. 1RTK1

    1RTK1 Cleared for Takeoff

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    Ralph
    Nate, you ARE the strongest person I know. Keep swinging, I don’t have to say it, but never give up.
    You are in my prayers, Merry Christmas.
     
  37. Palmpilot

    Palmpilot Touchdown! Greaser!

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    Richard Palm
    I'm in sorrow over what you're having to go through, and in awe of your positive attitude.
     
  38. frfly172

    frfly172 Touchdown! Greaser! PoA Supporter

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    ron keating
    So sorry to hear, keep up the brave fight . You are a stronger person than I .
     
  39. AdamZ

    AdamZ Administrator Management Council Member

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    Adam Zucker
    Nate let me just say how much I admire your attitude or as we say in Philly Attytude! Keep fighting the good fight and know. You have all of POA behind you! Not TM but my mother in law has MS and sometimes things suck and sometimes she is much better. I guess thats the baffling nature of neuro disorders. She finds that weather extremes exacerbate the issue so you might want to see how climate has imapacted those in your group. Thinking of you and impressed by you even though I know you say not to be.
     
  40. denverpilot

    denverpilot Tied Down

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    Yeah weather is big with the group. And of course it’s any extremes, hot or cold.

    The cold this winter just sucks away energy at an incredible rate for me. I also don’t tolerate the house being chilly as easily as I did. I used to never notice when I was working in my home office that the thermostat had kicked back on its schedule thinking we were away for the day.

    Now I notice it fairly quickly and go flip it back to Home mode. Probably add that one to the home automation. :)

    It already knows for the lights and alarms and other stuff, I just haven’t gotten around to adding the thermostat to the config for home/away.

    Scraping ice and three feet of drifted snow off the Subaru one storm was just plain hell on earth. Ha. It already sucks anyway, but my feet decided they were cold that day (both when they weren’t, and when they were ... hahaha) and my hands hurt, so... joyous. Let’s go pound on ice! Ha.

    The good news was by the time I finished the hands were numb and the feet were just cold the whole time so I got used to it.

    There’s a danger there though. I certainly wouldn’t go out for a snow hike without boots I didn’t know for sure kept feet warm. Not being able to tell if they’re actually cold is a tad dangerous. Not really dangerous for 15-20 minutes in the driveway but I think backcountry activities in snow could be hampered by needing to stick hands in boots and check regularly. Probably some of those chemical warmers handy too.

    All doable if you had to, but if you don’t have to... not that I was planning any cross country skiing to Yurts this year or anything ha.

    Folks who live south say the heat and humidity is the same for them there. So... neither seems like it would be good. LOL.

    Right now both feet feel hot for no particular reason. They do that too. Ha. You really do get to where you just ignore it, but talking/typing about it made me think about it and now I know they feel hot right now. Ha.

    You get to a point where you know the ways your body is lying to your brain and your brain really does an amazing job of filtering it out.

    Even weirder I can tell the difference between fake hot and real hot, but cold is more difficult. Probably because cold naturally numbs things.

    Neuro stuff also messes with circulation and skin. The beautiful and talented In House Wound Care Nurse says I should use more moisturizer. Then she only buys the lavender and other foo foo stuff.

    I pretty sure she’s just messing with me. LOL.

    That or she likes me smelling like a girl. Hahahaha.

    There’s also some plum stuff made with hemp oil.

    You get the choice of girly or smelling like a Boulder hippie around here, apparently. :)