Tagged: #walking, coping with lems, Lambert- Eaton Myasthenic Syndrome, LEMS, lems symptoms, lems walk, life with lambert eaton syndrome, life with LEMS, living with LEMS, mental health
- This topic has 3 replies, 3 voices, and was last updated 7 months, 3 weeks ago by Ashley Gregory.
July 27, 2022 at 11:50 am #19999
Good morning all!
@pricewool and I have talked frequently about our LEMS walk.
It’s the walk some of us always have, while some of us are lucky enough to only experience it when symptoms are flaring.
I describe my LEMS walk as a stumble, and sometimes even a waddle. I find myself repeatedly tripping over my own feet. It’s like my feet don’t go as fast as my brain and sometimes that causes me to trip, although usually, I catch myself before I fall. For me, this problem is the greatest the week before I receive my IVIG treatments but still happens a few times a day.
How would you describe your LEMS walk?
Do you experience your LEMS walking intermittently or do you feel it’s constant?
Sometimes others that don’t know us may take our “LEMS walk” to be intoxication or inebriation.
Have you ever been accused of being inebriated due to the way you walk or fall on the ground?
Have the police been called on you because someone thought you were on drugs or drunk?
July 29, 2022 at 5:49 pm #20106Anngail NorrisParticipant
I love this forum! Sometimes I think I’m making a big deal about insignificant occurrences and then I read on here about others with the same issues and although the problems don’t go away at least I know I’m not crazy. (Well the jury is still out on that!). But yes, yes, yes, sometimes I think I’m drunk even though I haven’t had a drink in many many years. I trip over my own feet constantly. Especially at home getting up from a chair or turning around. That’s my stumble walk. But I find that when I am outside walking it helps to do a sort of waddle, although I liken it more to a penguin. Have you ever watched a penguin walk? That’s me! Recently I have started using a cane again if I know I am going to walk more than 25 yards. It helps to stabilize my movements. And I also find that walking slowly helps to control my stumbling. It’s hard to get used to walking slow but it does help. Having spent some time in a wheelchair prior to my diagnosis, I’m just so grateful that I can walk again so if I seem a little drunk, so be it.
August 3, 2022 at 7:08 am #20114Price WooldridgeKeymaster
Thank you so much for the kind words! Ashley and I love being part of these forums and sharing experiences.
August 3, 2022 at 7:39 am #20116
Hey @anngailn !
I know the feeling, I’m also tripping over my feet constantly! I started taking Firdapse again about a week ago and I have noticed a huge decrease in my tripping! Have you noticed that (if you take Firdapse or Ruzurgi)
Getting up from a chair is hard for me too, I am always searching for the “tallest chair” to sit in.
I’m so glad to hear that this forum validates your feelings/symptoms! It’s so nice to have a community to bounce ideas and issues/symptoms with each other!
I’m thankful for that too!
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