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    Hello from Lancashire

    My lovely wife was diagnosed MND last week. On here to listen, learn and educate ourselves on what lies ahead. We're both early 70's and have our first home visit from an MND nurse tomorrow.
    This wasn't what we planned for the next few years but sometimes life comes at you pretty fast.......

    #2
    Hello Ken, i’m really sorry to hear about your wife’s diagnosis 🥺

    Everybody here is in the same boat and we will all help you in anyway that we can. Good luck with your visit tomorrow, I hope it goes well and that you have thought about some of the questions you might want to ask?

    Sending you both hugs,
    James x
    Foxes Never Quit 💙

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      #3
      Ken A warm hello Ken. Sorry you are both having this journey but the forum is a great source of help. The next few months will be a whirlind of appointments. Lots of departments will be involved in your wife's care.

      Maybe get a notebook and each visit ask for contact details and email etc. Also notebook comes in handy for any questions you may have xx
      Diagnosed May 2021 bulbar onset als.

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        #4
        Welcome Ken. We have all trodden the same path. Feel free to ask for directions. 😊🤗😜🙄xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #5
          Good luck with the MND nurse visit.

          The MND association helplines are good for advice too.


          Best of luck
          Donna

          Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

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            #6
            Ken warm welcome to you & your wife. This forum is a great place to drop into...look forward to reading your posts😉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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              #7
              Welcome Ken
              If your MND Nurse is anything like mine, she is more of a "regional MND Coordinator" and will be your vital link to many other specialists. Very useful to know.
              Hi, I'm Eddie.
              Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
              Still walking and talking, and wondering what the future will bring.

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                #8
                Hi Ken

                My husband is 71 this year. Hes been diagnosed 6 years now. Also has ftd.

                At least you have found us and we can all share the highs and lows.

                I'd also recommend you keep a diary and write as much down as possible.

                Love and hugs to both
                Denise xxx 💗
                when i can think of something profound i will update this.

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                  #9
                  Ken A warm forum welcome to you and to your lovely wife.

                  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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                    #10
                    Welcome Ken - I hope you find us all supportive and informative. Sending hugs to you and your wife xx
                    Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                    Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                    Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                    Comment


                      #11
                      Hi Ken, welcome to you and your wife to this forum. Hope you find it as helpful and informative as I have done. Heather (aged 75) xx
                      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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                        #12
                        Ken welcome to the forum. The first few months can be very daunting. Take each day as it comes. It’s my husband with MND and he’s in his fifth year. He’s still walking. You will learn to deal with things in time. So be kind to yourself. Wishing you and your wife good wishes. Xx

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                          #13
                          Ken welcome to the forum, there's lots of support, useful advice and laughter here.
                          Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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                            #14
                            Hello Ken

                            Welcome to the forum to you and your wife. There’s a few of us on here from Lancashire. I’m from Bury myself. I’m on this journey with my husband who has ALS with bulbar manifestations. We’re in our 15th year with this and this forum has been a godsend. I’m one of the ones that doesn’t comment too much but have gained valuable knowledge of how to approach my husband’s issues from all the contributors here. I’m sure you will find your own way - it’s a great group and any issues you/your wife has, you’ll find an answer or solution from forumites new and old xxx

                            Best wishes.
                            Boiler xx

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                              #15
                              Hi sorry to have to meet you this way . You will find a mass of information and help here . I have!! Love and Light to you both ❤️ x

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