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    #1

    Flail Leg

    I think my husband is developing this, does anyone know much about it.........I've looked on Dr Google and cant see too much about it other than the really in-depth stuff,

    He no longer walks but suddenly whilst sitting one of his legs just has a mind of its own and falls to the side, I have been strapping his legs together when he gets on his scooter as he cant get close enough to the bed because his legs splay out too far.

    He has an app with the Neuro next week so this is a question for them but just wondered if anyone else has this especially with the PMA version.

    Thanks

    Sue
    Husband Albert diagnosed PMA Feb 21
    Tags: None
    #2
    Hi Sue,

    After a second opinion my ALS diagnosis was changed to flail leg PMA. I agree theres not much to find on Google apart from medical papers.

    I can't move my legs at all but they can move themselves. They are in a different position in the morning even though I'm unable to turn over or move.. so strange! My feet often turn in. Stuart used to tie my legs together in my powerchair ( no jokes.. we'll be banned !) to stop my feet falling off the edge but I now have a footrest that supports them . Its padded so it doesn't hurt when my feet roll over onto their side.

    Are you seeing the wheelchair specialists when you go to clinic next week? . The wheelchair centre is attached to the MND clinic at Seacroft and the staff are brilliant. They don't seem to mind that I'm always asking for adjustments to my chair... I have been told I'm on the naughty step, however.

    I've an appointment on the 13th at clinic but if yours is next week it sounds like I'll miss you☹ Hope you've managed to get your blue badge sorted for parking.

    Love Debbie x

    Comment

      #3
      Sue, whilst PMA and Flail Leg syndrome are both LMN disorders, they are different, although subtly so.

      I think it's to do with onset site and symmetry, but both are often either misdiagnosed and subsequently reclassified.

      Good luck to you both next week.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
      ​

      Comment

        #4
        I don’t have flail leg, but when I get in my wheelchair or commode my left leg sticks right out in front until it relaxes, the amount of times I’ve smacked it into the doorway 🤦🏼‍♀️
        Janette x

        Comment

          #5
          Thanks for the responses, Debs Albert already has a blue badge but its no good to him now as I cant get him in the car - he has patient transport - of course I can't travel with him (Covid) so I follow in the car but its against the rules for me to use the badge as he's not actually with me!

          I'm trying to find out further info on next weeks appointment - it was a phone call out of the blue - he never asks the right questions - I don't think its the MDT meeting the caller simply said "Neuro" so I have no idea what that's about. His actual MDT meeting is supposed to be the 20th, talk about confused (Me)

          thanks
          Husband Albert diagnosed PMA Feb 21

          Comment

            #6
            Hi Sue,

            What a pain that you cant travel to clinic together! We always make a list of questions together before we go to clinic. Stuart usually has more questions than me and I don't want him throwing up any surprises !

            They phoned me from neurology at Leeds to see if I wanted an appointment last week so maybe that's what they're doing.Im waiting to see the respiratory consultant aboout the blood thinning injections i have daily ( I want to change to tablets 🙏, ) He doesn't attend every clinic.

            I hope you don't have to go twice and can get sorted in one visit! I'm sorry to miss you,
            Love Debbie x

            Comment

              #7
              What a nuisance Sue that you have to follow in your car. Is that an adapted car or not? I was just wondering if you can’t get Albert in the car with his wheelchair or transferring to the passenger seat of a normal car. If it’s a normal car have you both considered changing to an adapted car? Please excuse me if you’ve already discussed this. My memory isn’t so good recently. I hope this is due to tiredness. Love Lynne x
              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

              I'm staying positive and taking each day as it comes.

              Comment

                #8
                Hi Lynne,
                No I don't have an adapted car other than I have just sold the one I had that had a hoist in the back so I could get the mobility scooter in, but Albert can no longer get from the scooter to the car seat...........last time he tried he ended up on the floor and it took medics hour and half to get him up as he fell between the open door and the seat - awkward position and he was on his knees all of that time.

                We were told to use patient transport from that time, he has no desire to go out anywhere other than hosp appointments, I'm hoping as the restrictions are eased "Carers" will be allowed to travel with the patient, the daft thing is if they send an Authorised taxi for him I am allowed to travel with him but if the taxi firm is not booked for the return trip and they use an ambulance I cant come back with him! One way ticket to the moon!

                Thanks
                Husband Albert diagnosed PMA Feb 21

                Comment

                  #9
                  Does Albert get the higher rate PIP? If so you could look for a Used WAV and use his Mobility component towards the car. A deposit would still be required I’m afraid but it’d be well worth it if Albert gets a motorised wheelchair loaned to him from Wheelchair Services and then he could drive up the ramp and you secure his wheelchair and then off you go like happy campers. Lynne x
                  ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                  I'm staying positive and taking each day as it comes.

                  Comment

                    #10
                    Thanks Lynne, yes he does get full mobility rate PIP but we decided against it, See Richards post on another thread - we thought the same and not only that whenever anything happens to Albert I would have to give the vehicle back straight away, leave me without anything and it could then also affect my current no claims bonus to a degree.

                    It also puts all the onus on me driving and whilst I have been doing so for 45 years its not something I have ever had any pleasure in doing.
                    Husband Albert diagnosed PMA Feb 21

                    Comment

                      #11
                      Glad sue feels same about driving as me.
                      when i can think of something profound i will update this.

                      Comment

                        #12
                        When I got my WAV I had another Motability car with a hoist (Ford) and we also had a Ford Focus family car. So I swapped my Motability car for a used WAV and after a few more my husband part exchanged the Focus and got a 30 month old Ford Fiesta for mainly his own use (he was still a personal tutor then so needed a vehicle other than my WAV. He’s not working now but still goes out on his own). I paid about £1400 deposit. My husband didn’t need to put anything up front and his payments were less. So his no claims bonus wasn’t effected by our change of car. Lynne
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                        I'm staying positive and taking each day as it comes.

                        Comment

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