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    Heather R I think personally it's a good idea to have carers help with things you just cannot manage such as personal care....showering etc. initially....then add on as needed. You would have a support plan with times of calls...although there's normally an agreed give or take either side of the time. In my experience people who want more control over which carers support them and how the time is used prefer to have a direct payment. That's a whole other topic...covered on here recently too.
    If it's about help with phone calls and appointments that's more likely to be a support worker.

    Good carers are worth their weight in gold 👍
    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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      Thanks for advice, Matthew, Denise, Linda x
      Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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        Good morning to the true survivors. Brave men and women who fear nothing. I salute you. 👍🤗😘😍xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          Thank you Matt. Good morning to you

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            morning everyone.

            its a lovely day here. blue sky. no clouds
            seagulls making a noise. one, a young one i think, sounds like he needs oiling. it just makes this same noise over and over. another one was banging its beak on the roof of a new extension. no idea what was going on i thought it was trying to beat something to death but cant see anything in its beak.

            thought my cat had got something. running, jumping, rolling and acting like a cat killing machine. i walked over very apprenhensive planning to rescue some poor little mouse. have to report my hair tie survived its ordeal and is safely back in my make up bag.

            xx

            when i can think of something profound i will update this.

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              Good morning you awesome people. Following a football club is like living with MND/ASL. Learn to celebrate the good things as you don't know how long they will last. 😁🤗😘😍xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                Morning another lovely day here. Bank holiday Monday and it's not raining!
                when i can think of something profound i will update this.

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                  Morning everyone x

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                    Morning all (up at 6.40 but only just came online). 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.

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                      Morning everyone. No sun here just cloud and lots of seagulls making a noise.
                      when i can think of something profound i will update this.

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                        Good morning you lovely people. Chocolate is back in my life via a nutritional milkshake via my pump. Bliss. 🤗😁😍😀xx
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                          Good morning you gorgeous people. A pinch and a punch for the first of the month. 😁🤗😘😍xx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                            1st September. Do you remember when it was nearly back to school after that long break. The dread of going back then after a few days it was like we'd never been off.

                            morning 😘
                            when i can think of something profound i will update this.

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                              Pinch and punch back Matthew (you didn't say "and no returns whatsoever") x
                              Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                                Good morning all x

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