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    New to forum feeling overwhelmed

    Diagnosed beginning of January total shock, I was waiting for a knee replacement. I am feelin totally overwhelmed with appointments and informaton. I even missed a physio appointment I was so confused. Does this ease ?

    The diagnosis is overwhelming and almost everyone is devastated. Does it ease? Yes and no. You get used to it and learn to live with it after a while not happily because it’s a horrible thing to have but in a sort of I got it and there is nothing I can do about it so I will try to make the best of it way.There is a lot of help out there and a lot of kind caring people who will help.

    So yes the initial overwhelming shock will ease and you will get on with things. Make sure you get as much help as possible.

    You wii find this a very useful sympathetic forum full of kindred spirits.


      Thanks it has made me realize I am lucky to have family and friends support, and the hospital at Stoke have been brilliant, had voice banked OT been out bath lift supplied, its all happening so fast as are my symptoms. The big thing for me is losing my independence.


        Welcome Anne. We have all been where you are. Just take it one day at a time and don't over think things. We are here for you. Stay Strong. πŸ’ͺπŸ€—πŸ˜β€οΈxx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx


          Thanks trying to get out and about having conversations really difficult, have sons wedding look forward to in 2 weeks . Really love this forum.


            A warm welcome to the forum, Ann.

            Originally posted by ann View Post
            I am feelin totally overwhelmed with appointments and informaton. ... Does this ease ?
            Yes, it does ease off. The months following your diagnosis is definitely a whirlwind full of people wanting to see you and assess you - ultimately this is a good thing but if you ever feel that you are too tired/just not in the mood for yet another appointment on a particular day/week, feel free to reschedule it.

            I always put dates and times of appointments in my calendar, including a reminder the day before, so I have time to write down any questions I need to ask.

            Good to hear you're being well looked after.

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



              Hi ann sorry re the diagnosis but glad you've joined us. The first few months are crazy. But it does ease off.

              I cant deny that with every physical change I get upset and you sort of get used to adapting the home etc.

              Please enjoy the wedding. xx
              Diagnosed May 2021 bulbar onset als.


                ann welcome to the forum...even though it's a place we'd rather not be eligible to join.

                The turmoil & whirlwind of activity does eventually start to calm down.

                I plan for quiet rest days following busy days....cancel appointments if fatigued.

                Look forward to reading your posts....πŸ‘πŸ»πŸ˜˜
                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.​​​​​​


                  Originally posted by ann View Post
                  Diagnosed beginning of January total shock, I was waiting for a knee replacement. I am feelin totally overwhelmed with appointments and informaton. I even missed a physio appointment I was so confused. Does this ease ?
                  Hi Ann,
                  welcome to the forum. The initial whirlwind of activity does let up as things fall into place. My partner had to keep a large file with copious notes and it still got confusing.
                  There is lots of support and experience willingly offered here.
                  Very best wishes xx
                  Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.


                    So sorry you’ve had to join us but welcome. People are very helpful here and give good advice.
                    Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes


                      Thank you for all of he ,messages


                        Hi ann

                        It does ease up as you get inroduced (hopefully) to everyone in your team. Get equipment etc

                        The shock can ease too with time.

                        Lots of support and advice on here



                        Carer for husband, diagnosed MND, Fail Arm Type. July 2020

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



                          When my Jan was eventually diagnosed she became a lot calmer and more positive it comes in waves The people on this forum are special ! Best Wishes


                            No-one can predict how you will feel over time. All we can do, is work on ourselves such that we concentrate on all the positives and not the negatives. Not easy, but necessary.
                            Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.


                              Yes it does ease up and on the days that you feel like it hasn’t then we are all here for you x
                              Foxes Never Quit πŸ’™