denverpilot
Member
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 ***. 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.)
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 ***. 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.)
