No announcement yet.

This is me.

  • Filter
  • Time
  • Show
Clear All
new posts

    This is me.

    Hi guys, please bare with me as I don’t really know how this is going to come out. I’m Georgia, 23 years old. My mum got diagnosed with MND on August 27th, a day I will never forget, from the get go I have wanted to fight back! The day after mum got diagnosed me and my sister set ourselves a challenge to do the Yorkshire 3 peaks which we did on the 24th of October and we raised £4,800+ for MNDA which we are so proud of. However, I’ve now hit the ‘nobody understands’ phase, people ask if I’m ok and I reply “yeah I’m good thanks, what about you?” because it’s easier but really I’m not ok. I have so much to think about and process. Weeks/months have passed and reality is beginning to hit, my mum is struggling to talk and walk and all I can think of is some day soon I’m going to hear my mums voice for the last time. That breaks my heart. I’ve stopped talking to my friends about things because nobody can relate which is why I’m here, I hope I can talk to somebody living with MND or in the same situation as me as I’m finding it really hard to be the ‘strong one’ in the family/ day to day life. Ive just taken a promotion at work, we are looking to move house, something more suitable for mums needs, I feel like I have so much going on and just some support or somebody that understands would be so nice! This is such a cruel disease, something I’ve had to get used to the hard way I guess. Any advice for what’s to come would be appreciated,
    all my love,

    Georgia x

    Hi Georgia, I have MND and I live alone but my mum got Altzimers and lived for three years with it. That taught me that it's the carers who suffer more than the victim. We are always here for you and ask or say anything cos we understand and have thick skin. Stay Strong Matthew x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


      Hello Georgia,

      First of all congratulations on your promotion and try to absorb yourself in the new role if you can. I know how my diagnosis affected my daughters but like me they have learned to live with the situation and get involved. Like you they have raised money for the charity and their fitness levels have improved. Even though my voice has all but gone the girls have learned to translate what I am saying and we have some hilarious episodes when we video chat. Technology allows us to communicate via an app and if your mum’s voice is unable to record for voice banking you could act as a substitute rather than using the robotic prerecorded voices.

      I can’t advise you what to expect as everyone has different symptoms and rates of progression which is why this disease is so difficult to treat. What I can tell you is that if you have a question then someone on this forum will know the answer.

      Try to remember one thing that will apply to your mum and the whole family. Don’t dwell on the past (other than happy memories together) and look to adapt for the future. There is often an opportunity that presents itself whether that be raising funds and awareness or helping the MNDA in their campaigns to improve the quality of life for us all. Stay in touch and we will help you through this.

      Best wishes,

      I’m going to do this even if it kills me!


        It's not easy being there for your loved ones. So many emotions boil up and you feel so useless and frustrated. Don't give up on your friends they probably don't understand but they will be worried for you and probably don't know what to do to help. I found that at the beginning my feelings were all over the place and then we took each day at a time. Now and again, like at the moment, I feel like everything is getting me down. I have to pull my socks up and soldier on because that's not helping. We are all here for you. We talk, laugh and complain. There are wonderful people here who are all going through the same journey.
        big hugs from Denise xx
        when i can think of something profound i will update this.


          Hi Georgia,

          A warm welcome to the forum. It sounds like your mum is really lucky to have your support and love. The diagnosis is so overwhelming and there's such alot to take on board. Because progression is so unique and unpredictable its hard to make practical plans.

          Its good you've posted because there is always someone on here who understands and can offer support. Keep talking to your friends as I'm sure they will want to help you and take care of yourself too.

          Well done for your promotion and for raising funds, You should feel very proud of yourself.
          Love Debbie x


            Oh Georgia, you're so young to have to bear such an uncertain few years - I'm sorry about your mum's diagnosis, she clearly means the world to you.

            Is your mum linked in with her local hospice? They usually offer counselling to family members, it'd be good to talk about how the diagnosis is affecting you. (It'd probably be over the phone for now and don't be put off by the word 'hospice', they are great places) Or phone the MND Connect Helpline and have a chat with the lovely staff.

            As Debbie said, we all progress differently, but with enough similarities between us as to answer any (most) questions you may have.

            Who takes care of you, Georgia? It's important to look after yourself too!

            Love Ellie.
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


              Dear Georgia
              It was probably very hard for you to make that post. I and indeed we all feel for you. You will have wonderful support here. I sincerely hope you have a very close personal friend who you can be open and honest with. We all have good days but we also have lousy days. Don’t be afraid to say how you feel.

              Whatever questions you have people here can help you.

              Take care Richard


                Hi Georgia

                oh I completely understand how you are feeling, it’s a carbon copy of my journey over the past 12 months. My Mam was diagnosed in November last year. Mam is now in the final days of her MND fight. I felt like you did at your stage now, you change as a person over the time, the anger, the acceptance, the wanting to scream and swear when someone asks how your Mam is with a sympathetic head tilt. I would suggest try not to think of the future and take each day now as a gift. Thinking back I was in such a state early on thinking I was going to lose Mam that day when looking back she was relatively well, especially compared to now. Make sure you talk to close friends and family and vent! I found swearing brilliant. Also take some time away if you can, even just a day or so, it’s hard I know but it will help. You sound such a strong person which you will need to be at the later stages. this forum is great and the people are fab for any advice. Feel free to contact me privately if you want to Georgia.

                Lesley x