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Hi, my name is Nicola

TransverseTransverse Member Posts: 18 Listener
Im going into 10th month of transverse myelitis, really feeling it now.

Replies

  • steve51steve51 Community champion Posts: 6,693 Disability Gamechanger
    Hi @Transverse

    Good Evening & Welcome it’s great to meet you today.

    I am one of the Community Champion’s here at Scope.

    Please please let me know if you need any help getting around??

    @steve51
  • TransverseTransverse Member Posts: 18 Listener
    Hi, im fine with walking aids, i just feel uncomfortable, and i just cant find anything to say what it feels like if nerves are regenerating, im really wanting to get back to normal.
  • Ami2301Ami2301 Community champion Posts: 6,610 Disability Gamechanger
    Hi @Transverse and welcome to the community! I was diagnosed with Transverse Myelitis in 2018 - it's not an easy recovery. I lost control of all my limbs, my torso and was unable to move my head. I had to learn to sit up, stand up and walk again. Albeit, I can walk a few metres with a walking frame but it has taken a lot from me.

    Have you received any physiotherapy or occupational therapy? Both therapies were crucial to my recovery and I wouldn't be typing this today if it were not for them.
    Community Champion
    Disability Gamechanger - 2019
  • steve51steve51 Community champion Posts: 6,693 Disability Gamechanger
    Hi @Transverse

    Yes they do take some getting used too

    I spent ages in the early days getting used too mine.

    I don’t have that problem anymore due to my Chronic Pain leaving me wheelchair bound.

    @steve51


  • TransverseTransverse Member Posts: 18 Listener
    I have had some physio, but due to lock down its stopped, i was paralyzed for 3weeks, both legs are numb and hardly any feeling in right leg, left leg is the big problem, also my left hand, no grip. I have had a bit of feeling come back in small areas of my body, but now im feeling lethargic and aching in all joints. I dont know if its a start of sensations coming back..  
  • Ami2301Ami2301 Community champion Posts: 6,610 Disability Gamechanger
    Most of my sensations haven't come back, but this can be different for each person. My physio stopped too, but I was sent various exercises to do at home. I remember experiencing an awful lot of pain when I first started physiotherapy, but I think that was down to getting everything to work again. 

    Fatigue is very common with TM, don't push yourself too much, I know it's frustrating, even depressing. Your body needs time to recover. If you feel frustrated, please do reach out as I know how lonely it can be when you think you're on your own with this.
    Community Champion
    Disability Gamechanger - 2019
  • TransverseTransverse Member Posts: 18 Listener
    Thank you very much, how long have you had TM
  • Ami2301Ami2301 Community champion Posts: 6,610 Disability Gamechanger
    I was diagnosed with it in late February 2018, but due to being critically ill with double pneumonia I didn't find out until May the real reason why I lost all my mobility. I had never heard of TM before that. My latest MRI showed that it is improved significantly, just left wear and tear. Aside from limited mobility, it's the altered sensations that I struggle with.

    My hands feel like they constantly have rubber gloves on and the texture inside the gloves, it feels like that sensation in my fingers - very weird at first but I have gotten used to it over time. It is hard describing what the condition feels like and I still am stumped at how to explain it sometimes.
    Community Champion
    Disability Gamechanger - 2019
  • TransverseTransverse Member Posts: 18 Listener
    Has anyone heard of the Bowen therapy 
  • steve51steve51 Community champion Posts: 6,693 Disability Gamechanger
    Hi @Transverse

    Yes I did come across the “Bowen Therapy” a few years ago now when I was doing some research for myself.

    @steve51
  • TransverseTransverse Member Posts: 18 Listener
    Im thinking of giving it ago, just hope it will help, im at the point where i will try anything, 
  • steve51steve51 Community champion Posts: 6,693 Disability Gamechanger
    Hi @Transverse

    Yes I may as well give it a try myself.

    I will google it in the morning to see what’s what & I will let you know how things go!!!!

    @steve51
  • TransverseTransverse Member Posts: 18 Listener
    Morning!! It would be good to hear from someone who has tried the Bowen Therapy, just to know their experience, whether it works ect.  
  • steve51steve51 Community champion Posts: 6,693 Disability Gamechanger
    Hi @Transverse

    Good Morning.

    Please leave it with me as I am in the process of getting some info for us.

    @steve51

  • TransverseTransverse Member Posts: 18 Listener
    Brilliant, thank you, hear from you soon..
  • steve51steve51 Community champion Posts: 6,693 Disability Gamechanger
    Hi @Transverse

    No probs I will be doing some surfing 🏄🏽‍♀️ 🏄🏽‍♀️🏄🏽‍♀️🏄🏽‍♀️🏄🏽‍♀️🏄🏽‍♀️
    shortly.

    Not a good idea 💡 when you have “Balance Problems” 

    @steve51
  • TransverseTransverse Member Posts: 18 Listener
    Hahaha, i couldnt surf even when i had balance..
  • steve51steve51 Community champion Posts: 6,693 Disability Gamechanger
    Hi @Transverse

    Yes I used to look like I had been on a “Beer” when I first came out off “Hospital”

    That’s why they used to call me a “Cheap  Night Out”

    @steve51
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