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Best ways to help a friend

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    Best ways to help a friend

    Hi all, my friend was diagnosed in June 2021 with bulbar onset after experiencing the initial symptoms of breathlessness closely followed by voice changes. The diagnosis was a long time coming which, I think is pretty common ?
    Fast forward to now and she has no speech and is unable to hold up her head. She was offered a peg tube previously but didn't want to have it while she was still eating well. This has now changed however and is awaiting an appointment to have this. It is to be done as a day case, is this usual ? There has also been an appointment arranged to try NIV.
    My friend has no family and lives alone. She has a good neighbour and I have been trying to help as much as I can, both practically and as a listening ear. I guess what I'd like to ask is, what else can I do ? How can I support her ? I'm her NOK and I want to get things right. Apologies for the waffle.
    Thanks for listening πŸ™‚

    #2
    A warm welcome to the forum Steph, sorry to hear of your friend's diagnosis.

    Originally posted by Steph55 View Post
    The diagnosis was a long time coming which, I think is pretty common ?
    Not really, but of course it can vary and is very dependent on their symptoms, competence of the GP and first specialist they are referred to.

    Originally posted by Steph55 View Post
    She was offered a peg tube [...] It is to be done as a day case, is this usual ?
    It depends on the hospital and the pressure on beds, but the majority of us would have stayed more than a day (reluctantly, I must add!)
    Is your friend able to lay flat for ~30mins without getting breathless?

    Originally posted by Steph55 View Post
    I guess what I'd like to ask is, what else can I do ? How can I support her ?
    Just by being there for her - for me, it was important that I wasn't treated with kid gloves, with pity or that people tip toed around discussing my diagnosis, but you know your bestie and will know how she'd want to be treated.

    Love Ellie xx

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

    ​

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      #3
      Steph55 welcome to the forum...best friends are worth their weight in gold. So well done you.I

      For me my best friend brings me a sense of normality...understands my struggles...makes herself available to me 24/7. She's very practical and while she's chatting to me will be ironing or sorting something out. She makes phone calls on my behalf which is a big help as my voice is hard to understand.

      She knows me well which also means she knows that I also need no fuss and there are times I need to be alone...to recharge my batteries. xx
      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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        #4
        Hi steph

        Hard to say what's best because it's your friend and you know her but obviously the diagnosis changes things. Suppose the best thing is to ask what she needs and make sure shes being honest. Try and figure out what help is available and who to ask. At first we were overwhelmed with people and then when I desperately needed help I couldn't remember who to ask.

        I think the whole emotional support thing can be difficult. Sometimes a hug makes all the difference. Sometimes just having someone being there. Thing is sometimes this causes tears and I cant figure out if crying helps or what?

        Ask her. Ask her what a treat would be. Ask her what she'd really like to do. You might not always get it right but it's nice to try.

        You sound like a great friend.😘
        when i can think of something profound i will update this.

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          #5
          Welcome to your family you never knew Steph55 we are a warm and friendly bunch. Weekends are a little quiet but don't worry about that. Take everything one day at a time and don't over think things. Stay Strong we are here for you. πŸ‘πŸ˜πŸ˜˜πŸ˜xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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            #6
            Thank you for the warm welcome, it is much appreciated 😊 Ellie, yes laying flat is okay at the moment. We were given Info about the peg and that was one of the questions that was asked. I think the reasoning behind it being a day case (Its planned to be a 4 hour stay post procedure) is the infection risk. If all goes to plan, and discharge is the same day then I shall stay at least over night at her house.
            LindaB, thank you, I like the idea of doing some practical 'jobs' while chatting. My friend is one very independent lady having lived alone for a long time. I try to do things subtley so it's not such a 'thing' . I think you're right, there's a fine line between me giving support and knowing when to step back. I need to learn the signs when she has had enough of me πŸ˜‚
            Denise, yes I think I need to encourage her to be honest with me. I'm starting to write down notes about what we've chatted about, particularly when it comes to the nitty gritty serious things. I am going to ask what a treat would be, i love that idea, thank you. Mathew55, I do feel like I am with family from reading your kind replies. I will likely have lots of questions but feel comfortable asking them here.

            Thanks all x

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              #7
              Steph55 Hi Steph. Everyone needs a β€œSteph” in their life. What a great friend you are. Keep being you, you will help your friend immensely.x

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                #8
                Piglet, πŸ’• thank you for your kindness. I'm going to try and do my best x

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                  #9
                  Hi Steph, friends like you are really important. I feel blessed to have a close circle of very good friends who take me on days out (shopping, spa weekends, theatre etc.) whilst Im still mobile and not too much of a burden to them. I stopped working due to MND and am in the house on my own for much of the week so having something planned once or twice a week is a real lifeline and keeps me sane. Little goals to aim for to keep your friend motivated and still able to enjoy life is very much key to her mental wellbeing I find.

                  Comment


                    #10
                    Originally posted by Worsleybird View Post
                    I feel blessed to have a close circle of very good friends who take me on days out whilst Im still mobile and not too much of a burden to them.
                    I can guanantee you that your friends don't think of you as a "burden" in any way, shape or form. They love you and are showing you that love.

                    If the shoe were on the other foot, I'm sure you would happily do for one of your friends as they are doing for you... xx
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    ​

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                      #11
                      Steph55 HI. I had my peg fitted in day case. Easy really. My breathing is still good.

                      As your friend thought of a lasting power of attorney? Its basically nominating someone who can legally do things on your behalf like finances, speaking to medical departments etc. If your friend doesn't have family etc maybe she could appoint you.

                      I did mine online through gov.uk and it was a lot cheaper than using a solicitor.

                      Just food for thought.
                      Diagnosed May 2021 bulbar onset als.

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