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    New to Forum

    Hello all,

    My name is Maria. I was diagnosed with ALS in December of 2020. January 2020, my husband and I were out for a walk when I tripped over my own toe, (thank you, drop-foot) and nearly broke my nose. We obviously kept to ourselves when the first lockdown happened. I didn’t realize how much my gait had changed until a friend asked my why I was limping. Onset was my right foot/leg, with the left side following about 6-8 months behind.

    By August I was referred for tests which took forever to actual schedule. I received a diagnosis of ALS a week before Christmas. Lucky me.

    I'm here in this forum since the Canadian ALS Society doesn’t actually have anything like this, and they have been all but useless to me. It took them three weeks to get me a rollator because they claim my OT never submitted a request. Other loaned equipment has taken even longer to procure.

    Anyhow, here we are, about 14 months after diagnosis. I can still walk around the house with the rollator. I have not been outside in months since I need to use a wheelchair outside the house. Friends’ homes are not accessible. Public bathrooms are a complete nightmare to use.

    I have some use of my hands, which are like my feet, the left being months behind the right in degeneration. Fortunately I’m ambidextrous.

    I understand that some of our experiences are going to be different, including terminology, but I’m just looking for people who can relate to what I’m going through.
    Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.

    #2
    HI Maria C


    I am a carer for my partner diagnosed in July 2020, had to move house twice to get a wet room and waiting nearly 5 months for a change in door to allow the power wheelchair outside.

    In Cumbria North of England, waiting for Closomat, they also didn't send relevant forms for months.

    Beyond frustrating.

    Thomas lost use of both hands very quickly due to appartently Fail Arm type of MND.

    Sorry you have joined this club. We can relate also to the delays as well.

    This forum is really good for advice. There is lots of regional differences in care which we call the Postcode Lottery.

    Best wishes

    Donna



    Donna

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

    Comment


      #3
      Welcome Maria. Sorry to see you but Happy you're here. I look forward to getting to know the latest member of our family. 👨‍👩‍👦👍😊😁xx
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

      Comment


        #4
        Maria C welcome to the forum & sorry to hear of your diagnosis & difficulties. I look forward to reading your posts and hearing a different perspective from Canada. 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.​​​​​​

        Comment


          #5
          Hiya Maria C and welcome to the forum that we all wish we were not members of.
          We can totally relate to what you are going through. My own story has many similarities with yours.
          Started with a dropped foot which caused trips and falls. Both ankles totally useless now.
          The deterioration in my hands is measurable, but I can still manage with both of them.
          I get around using ankle braces, walking poles and a mobility scooter, and I am looking at my surroundings to see how accessible the world will be when my wheelchair arrives.
          Sound familiar?
          I find this forum a tremendous source of support and information from lovely folks who are going through the same thing we are, some of whom have been living with it for much longer than us.
          You have found the right place!
          Stick with us
          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.

          Comment


            #6
            A warm welcome to the forum Maria, thank you for making the difficult first post.

            Originally posted by Maria C View Post
            I understand that some of our experiences are going to be different, including terminology, but I’m just looking for people who can relate to what I’m going through.
            Look no further, you found your tribe 🤗😘

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

            Comment


              #7
              Maria C Welcome! You’ll find lots of support here. Sounds like your problems and diagnosis happened around the same time as mine. 2020 was a really rubbish year in so many ways. Can totally relate to your experience, even though my MND presentation has been very different. Best wishes
              Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

              Comment


                #8
                Maria C hi and welcome. Sorry you had to join us. I experienced my first fall in November 20 which prompted me to sign up with a gym thinking I had become old and feeble during lockdown. ALS diagnosed May 21. I’ve found lots of information and support here. I’m sure you will too 😀
                Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                Comment


                  #9
                  welcome
                  It's all funny

                  Comment


                    #10
                    Welcome Maria C this is a great place for support and advice.
                    Similar story here, I also started with a drop foot on right in 2017, soon followed by the left. I wear ankle braces to help with transferes, but full time wheelchair user now. My shoulders are weak and hands fatigue quickly so only able to wheel myself indoors.
                    Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

                    Comment


                      #11
                      Thank you everyone for the welcome. I had been reading in the forums before I joined and it seemed like a nice place.

                      I had a change in circumstances about five years ago, and life was looking bright. I married a wonderful man. There was going to be money for travel that I hadn’t been able to do before. My daughter gave me two beautiful granddaughters. I had everything I could hope for.

                      When this disease struck, I started loosing everything that I valued, and I’m still wrestling with how much longer I can tolerate the losses before I finally throw up my hands in surrender. This assumes, of course, that I’ll still be able to throw my hands up. The weakness is getting worse.
                      Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.

                      Comment


                        #12
                        My beautiful Jan twisted her ankle in a wedding and that was the start Went to Physio Acupuncture etc but it did not heal We suspected MN because Jan had lost her Mother and Brother to the cruel condition As it progressed we also purchased a Rollator that gave Jan her independence back ! She was so happy with it I replied to this because of all the similarities and it does make you feel better communicating with people with the same experiences Stay Safe. Peter

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