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    Hello

    Hi all,

    It’s taken me a very long time to join up on here. Wish I’d done it much sooner, but better late than never!

    My wife was diagnosed with ALS in December 2019 at the age of 46. We’ve got two boys (16 and 13). Breaking the news to them is one of the toughest things I’ve had to do. Trying to take a day at a time and be positive whilst essentially grieving and coming to terms with the things we’ve lost still can feel overwhelming occasionally. Having moved during lockdown into a house that could be made accessible for my wife and the combination of juggling house renovations, with family life, a stressful job, caring, and everything else that comes with an MND diagnosis did get on top of me and put me in hospital in March last year with a nervous breakdown. If I’ve learnt anything over the last 12 months is to take things a day at a time, accept help when it’s offered, not try to do it all, and focus on the things that are really important.

    On the positive side my wife is “slow progressing” - wheelchair-bound and with weakening arms, but otherwise pretty good mostly. I’m very grateful for the time we are still able to have as a family.

    Like all of us on here I suspect, we’ve been on a rollercoaster. Just when you think you’re getting acclimatised to the situation, something happens which makes you feel like a complete novice. And I don’t expect that will ever change. Hence joining the forum I think/hope might help.

    That was a longer intro than I thought it would be! Anyway, thought I would say hello.


    #2
    Hello Stubot, lovely to meet you. I too am a carer, my husband has ALS but he was only diagnosed in December. This forum is such a help and everybody so friendly and supportive. Welcome aboard
    Carer for my husband who was diagnosed with ALS on 15.12.21.
    Trying to think of only today and tomorrow
    Alison ♥

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      #3
      Stubot A warm welcome to the forum Stu.

      You seem to have come out of your breakdown with a positive and determined attitude, good for you 👍👍

      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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        #4
        Stubot welcome to the forum. Sorry to hear about your breakdown but pleased you’ve come through it. There’s lots of advice to be found here.

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          #5
          Hi Stubot. Wonderful to get to know you.
          Richard

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            #6
            Hi there
            It's all funny

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              #7
              Stubot glad you've taken the plunge and joined the forum. Sorry for your wife's diagnosis & the impact on you all.
              Look forward to hearing from you👍🏻😉
              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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                #8
                Hi Stu, welcome here. Glad that you’ve gotten over your breakdown with a positive attitude. Take care and love to both of you xx
                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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                  #9
                  Hi lovely to meet you.

                  things can be difficult and overwhelming. Like you say one day at a time is the best way to go. Sometimes you will struggle but you will find the strength to continue and we are all here for each other. Don't be afraid to speak up.

                  I care for my husband. He has mnd and a frontal temporal dementia diagnosis. I'm having a difficult time at the moment but these guys see me through. They are a great bunch.
                  Xxxxx
                  when i can think of something profound i will update this.

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                    #10
                    Stubot Hello, and welcome to the forum. MND is such a vicious diagnosis, so challenging for all the family. I’m glad you have recovered and are able to accept help and focus on the important things. Best wishes.
                    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                      #11
                      Hi Stu welcome to the family you never knew you had. We are all brothers and sisters bonded by adversity and love. 🤗👍💕😁xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                        #12
                        Hello Stubot welcome aboard x

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                          #13
                          Stubot Welcome and well done getting through a breakdown and it sounds like coming out stronger, and more resilient, all the best 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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                            #14
                            Stubot . Hi Stubot. It is very hard at the beginning, in fact it’s hard all the way through being a carer. So pleased you are well enough now. Make sure you be kind to yourself and ask for help when you need it.My husband is in his 5th year with MND, diagnosed 2017. He is just about mobile but requires help with all activities of daily living due to no use in his arms and hands. He is 70 yrs of age.
                            This forum is super. I may not write much but I look in everyday and I value all the information that everyone offers. So take care of yourself so you are able to look after your wife and your lovely boys.xx

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                              #15
                              Hello Stubot - I can relate to some of what you describe. I am 46 and was told a few weeks ago I have a working diagnosis of MND pending confirmation in clinic next week. I'm affected in both legs, left arm/ hand and speech.

                              It's been really hard on my husband and like you I found telling my teenage children so heartbreaking.

                              Sounds like you are a strong and determined person and I'm sure your family are so proud of how you are juggling everything. It is so bloody hard for everyone involved xxx
                              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.

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