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    I know that no one will answer until tomorrow but I will forget my question by then so I ask it today. For the last day or so I have had pain in my thighs, like stiffness, how long have I got left walking? Love and stay safe Matthew x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    Hi again Mathew, every mnd sufferer has a different journey but I can tell you my experience of leg stiffness (mine mainly lower legs). I’ve had stiffness in my lower legs for two years approximately and I’m still just about wobbling around our flat with my 4 wheeled walker. This is despite my neurologist telling me to always use my powered wheelchair. It won’t be long for me to stay on my feet but I will for as long as possible. I don’t have stiffness in my thighs yet.

    You’ll likely receive other personal experiences but don’t expect to be exactly the same as any of us.

    Take care, love 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.


      Thanks Lynne, it means so much to me that people like you are around. x
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


        Hi Matthew,

        As Lynne said, progression is different for everyone and almost impossible to predict. When I first met my MND nurse she said that everyone she knew with MND was on a different journey.

        Although MND is progressive I do have good and bad days. I used to think if I had a bad or a weak day it was the MND affecting me and getting worse but the next day I can feel stronger. I sometimes get unexplained aches and pains especially in my legs, which are most affected but as far as I know this isnt a sign of progression.

        Don't be afraid to get any ache or pain checked out by your GP incase there is an unrelated reason for it.

        Take care and stay safe,
        Love Debbie x


          Love to you too 😊
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


            Hi Matthew

            As everyone has said, MND is a very individual disease and no two people will have the same experience of symptoms or progression.

            MND is a gradual progression so things wouldn't change overnight and it would usually become clear when your legs are becoming more affected. If your walking is becoming affected then it would be good to get an assessment from an Occupational Therapist (OT). They can assess your walking and should carry out regular assessments so that if your walking were to become harder, they can provide any equipment that you require.

            If you don't have an OT, you can request one by contacting the Adult Social Services Team at your local council.

            Best Wishes

            MND Connect Adviser
            MND Connect
            Contact us on 0808 802 6262 or at [email protected]