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    #16
    Hairbsb welcome to forum. I was diagnosed with mnd als bulbar onset in July 2019. I have just had to look up bulbar palsy, as wasn't sure what it is. Looks like similar symptoms to what I have in the bulbar region. Sympathies and solidarity! A shock I'm sure, and difficult to accept if confirmed. Certainly a big challenge, but helped a lot by love and kindness of family and friends, and support from people on this forum. Love, Heather 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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      #17
      Hairbsb I was signed off work over a year ago as my speech was so slurred and not walking well. I am no longer able to type with both hands now either. Even though my diagnosis is still not "firm" I have been told nothing else is being considered so have ended up telling people (work, family, children) but that was really hard to do.

      I hope your work are supportive and you can get through this limbo period soon - when is your follow up appointment? 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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        #18
        I do hope soon. Only went this Tuesday for the pre diagnosis. My tongue is making it hard to chew food. I eat so slowly now

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          #19
          Just felt like saying hello. My husband had a collywobble over our situation this morning. As I said previously we are currently taking it in turns to breakdown.

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            #20
            Hi Hairbsb, I'm also new to the forum. I was diagnosed in August 2021.

            I think the emotional rollercoaster is so difficult, I find one day I'm okay and feeling positive and then the next I I feel quite the opposite. It does seem to go hand in hand with my fatigue, the more fatigued I am the less optimistic I feel. It's good that you and your husband are taking it in turns as you can support each other when the other is in need. It's such a changing condition it would be impossible to get through it without emotional upheaval. I have found great comfort from reading the posts on here and I love that so many are optimistic and good humoured.
            Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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              #21
              Tabbycat love your name btw . I have two black cats both are rescue. Kelsey has three legs (we had to have her) and Shadow is her fur brother. Yes humour is key and even though my speech is slurry currently I love to find something to laugh about even if it is myself.
              You do not have permission to view this gallery.
              This gallery has 1 photos.

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                #22
                We all have good and bad days. It goes with the territory. Stay Strong. 💪😁🎂🤗xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                  #23
                  Aww, lovely photo Hairbsb

                  We had a tabby cat and a tortoiseshell but both departed this world at the end of 2020 (brother and sister aged 18) hence the name. After much deliberation, we have just adopted two rescue kittens, now aged 5-month I'll try and attach a photo, not done that yet on here so fingers crossed!!
                  Lily (black & white) and Marvin, brother and sister.
                  You do not have permission to view this gallery.
                  This gallery has 2 photos.
                  Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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                    #24
                    matthew55 am trying to be upbeat, doing wordle, messaging here and awaiting a consultants appointment with apprehension

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                      #25
                      Tabbycat what beauties. I have never had kittens before. Shadow is nick named fat boy slim haha and Kelsey's nick name is Isha melz. I will explain why and hope you get my warped sense of humour. So the song ebenezer goods lyrics says eezer good eezer good hes Ebeneezer good. So I say Isha Melz Isha melz with the same tune haha

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                        #26
                        Wordle 212 4/6

                        🟩⬜🟨⬜⬜
                        🟩⬜🟩⬜🟩
                        🟩⬜🟩⬜🟩
                        🟩🟩🟩🟩🟩

                        Boom

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                          #27
                          Hi Hairbsb, I was too was diagnosed with Bulbar MND, quite quickly in July, after beginning to slur in March 2021 (a couple of weeks after my 1st Covid vac, never sure whether this has contributed or just too much of a very stressful job), but can fully sympathise with what you are going through. The most upsetting thing for me is being unable to chat properly to friends, neighbours and random people when out for a walk with my dogs, even my family and children. I have a speech app Speak Unique which I am resisting using as I feel it is just another knock down on my independence, but I know I will have to use it soon.

                          Waiting for a breathing consult at Wythenshawe and then possibly a PEG, though again like many people, having spoken to the MND team and on here Im not alone in wanting to resist/delay it, although I know the ramifications.

                          The best advice my SALT gave me, and she suspected what it was way before I was diagnosed, was take each day at a time and try to enjoy it.





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                            #28
                            Worsleybird thank you. You give me great support right now. I'm going to work today. Not answering phones and awaiting another consultants appointment.

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                              #29
                              Hi Hairbsb and welcome to the exclusive club nobody wants to be in.
                              You will find these early days a crazy time of appointments to meet the various medical personnel who will be looking after you.
                              I had my Occupational Therapist and Physio (2 different lovely ladies) visit me on Thursday to look at house adaptations etc. and they said they would do references for new handrails in the house, and a wheelchair assessment (although I am still just about walking).
                              The next morning I had people on the phone asking if they could come that day to sort me out. I cannot fault the wonderful support I am getting.
                              If you want to chat, cry, rant, hug, or just natter about something completely different - this is the place.
                              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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                                #30
                                WheelsOfSteel Right now holding crying in as I feel numb inside and feeling why me and why now. And just sad x

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