One early morning last week on my way to the bathroom, both knees suddenly buckled and I fell to the ground. I had to pull each leg out from under me and then I assessed my situation. (Note: A paraplegic gave me good advice one day when he saw me fall. He said not to get up quickly. And don't panic. Assess your situation.) My worst fear was that I fractured my right tibula and then I thought how am I going to complete the 6 mile walk test at Stanford next week for the Min-102 follow-up? I could barely stand and support myself and felt utterly petrified and vulnerable. I was advised to go to emergency and I was so fortunate that nothing was broken. (Quoting monkeybus, don't mention wheelchair.)
I have had occassions (just this morning I almost felt my left knee give out) where only one knee buckled and I fell. But two? That is too cruel. I am still building up to where I was before and did get back to the gym this week. Is this common with AMN? Have anyone of you experience this before?
Anecdote: When I was in the ER room, a nurse came in and began to put the EKG pads on me. I thought this was odd but have been so used to this because of the MIN-102 trial and thought wow, it was communicated on my medical record.) I asked him if he was sure since I had come in for an X-ray on my leg. He left and came back and removed the pads. It was then I remembered the man before me was taken to heart triage. Yep, they got the wrong patient.)
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SongStream
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Hi Steve, yes, I've been there! It has happened enough times that I remember them but not often enough to say it happens all the time!
Getting out of bed in the morning is such a complex activity these days: I need to get plant my feet on the floor, straighten up slowly as my tight hip flexors won't allow my feet to bear any weight and then I slowly inch my way to the bathroom only half straightened up.
A few times, my knees have buckled, other times my hip flexors weaken.
Yes, it's usually one side that buckles but when it's two, for me, it means that the "good" side isn't able or wasn't prepared to bear the weight of the side that buckled, so they both go down.
The feeling of incapacity I've felt is unnerving, like something really bad has happened. After such a fall, my nerves are radiating and I can't raise myself up, and I feel something must have broken. For me, it goes away after I've had a chance to get up and move a bit and then "shake it out." It will hurt and I need to assess what's going on.
How are you now? Better, I hope. Good luck with your walk test.
Julie, thank you so much for validating and offering your experiences as well! I just raised this tonight during the men's AMN conference call but no one had experience both knees, just one. Someone had mentioned using a walker and I think this might be the safest way to go and it will keep my walls clean : )
Yes, it is unnerving when you can'even pull yourself up without finding that your legs can't support you. So good to know I am not alone. Thank you.
Hey! Just want to throw in my 2 cents ... I’ve had this happen more than once. Usually both knees go out and I’m in shock trying to figure out what happened because I’m on the floor in nanoseconds. The biggest problem then is trying to move my legs. I lose all capacity to move my legs and I have to have someone move them into a place that I “might” be help someone get me up.
I was in PT once when 1 knee gave out. I was able to recover it, but I had a railing on one side and a therapist on the other arm.
I am in a wheelchair so “walking” in PT made me feel pretty good!
I maintain moving my legs to stand and balance. Sometimes these (damn) legs just give out!!
I’m glad nothing was broken! Keep going, and you’ll get support here for all - when it goes right and when it doesn’t.
Wow! Thank you so much JoAnn! And you're so right about losing all capacity to move your legs in some order to be able to get up and landing in tangled limbs within a nonosecond. I'm so glad it's not an anomaly.
Get out of bed, head to the bathroom, legs suddenly fail and I go down hard. I've said before that I've come off my motorbike so many times, I know how to fall.
Standing up is an important thing for me. Think about it beforehand, look around, check for walls, chairs, whatever I can use for balance/support. Check who is moving in the room, don't need nobody slamming into me.
Bed, chair, floor, wherever I am getting up from. Have to get my legs ready with some stretches and tension exercises.
The bus/train is the most important. Quickly standing up with crap legs on a crowded moving vehicle is a recipe for chaos. I'm sure we all know this.
Important (for me) to go down vertical, like a collapsing building, or whatever. Going down horizontal, hell of a thwack when you finally reach the ground.
That is so true. We've been conditioned prior to our diagnosis to immediately get up when signaled in some manner. This is so assuring to hear and I see the mirroring of our experiences!
I regularly go down and it used to be more from my knees going out. One way I described it was like a shooting numb. I have to be extra careful when I get out of bed to go to the bathroom at night, a couple months ago I had a night where I got about halfway to the bathroom and missed my hand support on a dresser and went down hard and scared my wife awake. Lately it is more due to balance, or lack thereof, and last night was a prime example. I was trying to get something out of the pantry and my balance went and I went down on the dogs water dishes, and of course smashed one. Scared the hell out of the dogs and made my wife come running and she tried to help me up, but I just had to lay there for a bit until I felt more ready to get up. I'm a fiercely independent person as well so it is more to my liking, and easier I find, to get up on my own. Fortunately there have not been any broken bones but that is a definite fear! I find that I am always hyper aware of my surroundings, mostly for the need to lean up against something when my balance goes.
I do hope that you don't have more of the 2 knees at once thing!!!
Please take care of yourself!
Be well and know that you are not alone with what's going on!!
You described your falls so vividly that I can relate. Dogs are sensitive to sudden noises and that I can surely relate. Part of the experience of falling includes cleaning up after ourselves.
I think we are all in the same boat! My legs gave away and I was rolling down my garden the other day! Glad to hear nothing was broke! Good luck for the 6months appointment!
There’s nothing like being in public and a very capable 70 year old asks you what happened to you as you’re trying to walk and concentrate on not falling and boom the distraction causes you to fall!! They then look at you like you’re crazy and you can’t really take out the anger you have towards them for being so nosey! Those are the worst falls! I’ve fell many times at home and without distractions it’s a lot easier to control the fall. I fell the other day while vacuuming and got a scrape on my arm from catching a window sill.
I don't understand why common decency is lost with some people. I would have said to the man: What happened to you?! I just got a Dysons cordless vacuum and I love it. The sole reason was for my safety. That cord was hazardous to my health.
I try to be as positive as I can when it comes to the elderly strangers randomly questioning why I walk the way I do! But when they cause me to potentially hurt myself it becomes quite negative and I understand that they no longer have a filter and they feel entitled. For the most part I just reply nothing and keep moving because it’s literally none of their business and although I do feel that I am being rude it’s a lot ruder to ask a complete stranger what happened to them while passing in the grocery store.
Thanks for the discussion of knees collapsing. My left knee gave out with a popping sound last December and I went down like I had been shot. I have been using a walker ever since because I can't count on the knee now. Has anyone looked into knee surgery to help stabilize the knee (meniscus repair), or is this a step on the road to reduced mobility due to my AMN and knee surgery would be useless? I would love to hear your opinions.
Hi, I had a knee replacement 12 years ago, yes it does help. My neurologist requested the surgery to give me more years on my feet. I need the other one done now but I am holding out because the surgery will effect the rest of my body. It takes a long time to recover from the surgery. I had a ligament transplant on my ankle abut 8 years ago and it took a long time and I’m sure I am not back at the level I was at prior to surgery.
Thanks, Hillary. Your feedback is helpful. I am hoping to get this knee more stable in time to get back to using a cane instead of a walker. It's amazing how many people share similar issues.
It seems that knee problems are a common problem with AMN. My mother had knee problems and ended up having to have both of them replaced. She used to say that the first thing she noticed as far as problems there was that when she jumped down off of the hay wagon that there was no give, or cushion, left in her legs. She had been diagnosed with MS when she was in her early 40s, long begore ALD was even known of.
Yes to everyone’s comments. A walker does help to some extent, as long as you take your time both before, trying not to fall, and after a fall it can help
I have been lucky that my legs have decided not to synchronize their “lapses” yet...so I’ve been able to catch myself most times. The few times I’ve crashed in public, I find I first look around to make sure no one has a phone in hand ready to record and post it to social media, THEN take inventory of my limbs and any injuries. How sad is that?! Ha! (I am sure there is something somewhere of me falling...with some lame meme about trying to walk a dog while drunk or something...oh well!)
Thanks to all who replied and shared their experiences. I wonder if spasticity contributes to knee buckling. Today, driving 26 miles to/from a doctor's appointment followed by grocery shopping had me literally dragging my feet leaving me in a bitter mood. It feels like a ball and chain is attached to my lower limbs. This got me thinking about baclofen which I had discontinued since I was only taking it for my nightly feet jerks. I never took it during the day because it makes me drowsy. Would a baclofen pump help? I'm just constantly doing hamstring stretches throughout the day and night. It's just ridiculous.
Today, I had my 5 minute allotment for my very own pity party. : )
Don't think I've ever had both legs give out at the same time but certainly a few occasions where the standing leg or the leg I had my weight on has given out, which would have a similar effect. This is one of the things that makes me so risk averse when walking... got to get the other leg down in case something goes wrong with the standing leg...
It's also the case that I generally hurt myself worse around the house compared to outside. There are plenty of things to hold on to so my concentration is not as strong as it should be and suddenly I slip or miss my hold and I am on my back on the floor. Outside I am always in a state of much greater readiness and the worst result tends to be a graze on my knee.
Good luck with the 6 month update! I hurt my left knee a week or so before my 6 month trials and in the end it went fine. 6 minutes is over pretty fast.
Thank you for the validation and encouragement! (I still hear Rich whisper in my head: Get a wheelchair! Does he not realize that spending prolonged periods seated predisposes the seat bones, coccyx and bony protuberances of the spine to pressure ulcers; muscle atrophy and low bone density?)
Also studies show that weight bearing movement and exercise, even if assisted, seems to be necessary for growth and repair of neurons in the spinal cord and brain (well at least in rats! But hey! It’s new territory...gotta start somewhere!)
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Diagnosed with AMN
I saw Ken, Aaron, and Songstream at ALD connect annual meeting today.
