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    Hello, everyone. A week ago I was told that I have ALS after developing left sided foot drop and hands getting weaker- it has been a bit of a roller coaster (my sis was diagnosed with bulbar last July) and a move of house and area meant tests carried out in London had to be repeated here. Of course I wish I didn’t have it but I have and in between lots of phone calls, visits and hospital appointments, I am determined to live life to the full for as long as I can.

    it’s been great to read the forums and see so much care for others and the humour that is so often here.

    #2
    Welcome to the family that will be a source of help, advice and support. So sorry to meet you but very happy you're here. 👍🤗😁😀xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      Karen62 A warm welcome to the forum Karen - glad you joined us but sorry you had to in the first place.

      As your sister was also diagnosed, can I presume your family is sadly all too familiar with ALS and have seen other (extended) family members with ALS, or are you two very unlucky people?

      I hope you have good support.

      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
        Karen62 welcome to the forum Karen. Sorry for your diagnosis and also for your sister too. A double blow. You sound positive which will help you greatly. Xx

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          #5
          Hi And thank you for the lovely welcome. Ellie, when my sister was diagnosed it hit us hard, as far as we know, there is no family history. I have had genetic screening done so hopefully that will give us a clue. My family have been amazing, and although we are a bit like rabbits in the headlights with it all, hubby and I have been together a long time and he is so supportive of me. 🙂

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            #6
            Originally posted by Karen62 View Post
            ... when my sister was diagnosed it hit us hard, as far as we know, there is no family history. I have had genetic screening done so hopefully that will give us a clue.
            Oh my days Karen, that's really tough for you all...

            Originally posted by Karen62 View Post
            ... hubby and I have been together a long time and he is so supportive of me. 🙂
            💕

            ​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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              #7
              Karen62 welcome to the forum. Sad to hear your sister's diagnosis too...

              Hope you'll keep posting and using the forum as a means of added support 😘
              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
                Karen62 hi Karen. Wow how hard it must be for your loved ones. But a warm welcome to the forum. It is a great place to vent or ask for tips and advise etc x
                Diagnosed May 2021 bulbar onset als.

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                  #9
                  Karen62 Welcome to a wonderful group. Here you can shout, scream, laugh, cry and ask whatever questions you want. We have all done it and still do. Someone will always have advice to give.
                  Richard

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                    #10
                    Karen62 - welcome to the forum. I've already learnt so much here and had both support and laughs.

                    It's a dreadful diagnosis and you and your family must be reeling from the shock of both you and your sister having it.

                    Sending hugs and looking forward to your posts 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.

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                      #11
                      Thank you. I had a good night for the first time in a while (have had the worst spasms in my calfs at night but yesterday was given gabapantin which meant I got plenty of sleep. I am generally a pretty strong person and doing my best to keep smiling and doing the things that I enjoy (sewing, gardening) while I can. I can’t change this but won’t let it completely control my life or least I will for as long as possible. There is so much to sort out such as being transferred to new hospital - I live on the edge of two counties but need to be in Cambridgeshire for care so being moved to Addenbrooks mind clinic as soon as possible. Have to sort out PIP, a wheelchair so I can go out and who knows what else. MNDA have been really helpful so far but it is early doors for everything else.

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                        #12
                        Welcome Karen
                        I really don't know what to say. You and your sister my goodness.

                        I think everyone has said what I was going to say.

                        All I can say is we are all here for you and i send love and hugs.

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

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                          #13
                          Welcome and sorry for your diagnosis. Having a supportive spouse is absolutely brilliant don’t know how I would manage without mine. All I can say is try to stay positive and take thing a day at a time.

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                            #14
                            Karen62 a warm welcome to the forum. It is a fantastic source of information, support and humour.
                            Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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                              #15
                              Originally posted by Karen62 View Post
                              There is so much to sort out such as being transferred to new hospital - I live on the edge of two counties but need to be in Cambridgeshire for care so being moved to Addenbrooks mind clinic as soon as possible.
                              You'll be well looked after by Addenbrookes and Papworth, should you need respiratory intervention. 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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