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Hello, my name is Jeanette

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    Hello, my name is Jeanette

    I’ve struggled with this Forum previously and became frustrated but I think that was because I couldn’t concentrate. Now that I am a little more focused I can see how this forum works - thank goodness ! I’ve wanted to go on this forum since July

    I am 58 years old and I was diagnosed on 19th June 2020. My symptoms began in February 2019 when I started to have cramps and twitches in my lower legs and arms. I had difficulty climbing stairs and generally felt a loss of strength in my arms and legs. I used to run half marathons and always loved running. I saw my GP and started having blood tests

    I fell whilst running in April 2019. I found walking up gradients were difficult and remember crying as I walked up a slight hill to my car from the Dr’s Surgery. I asked to see a Neurologist but the waiting list was too long so I decided to pay to see Dr J Gareth Llewelyn in June 2019. He checked me over tested my reflexes and listened as I told him my symptoms. He said I was suffering from anxiety.

    I started to have sessions with a chiropractor twice a week, swim and rest.

    I fell twice more, returned to my Dr and stated I was deteriorating and I saw another Neurologist, Dr Fardy Joseph who booked an MRI, which showed nothing out of the ordinary and he booked me in to have an EMG.

    We, my now husband, sold (SSTC) our house in October and found our forever home. We planned our future... ( move, make modifications to our new home and organise our wedding )

    We moved in February, I fell downstairs on the 3rd March and the EMG which was due on 24th March 2020 was cancelled on 23rd March due to COVID.

    I didn’t know what was wrong, I believed I had ME. I rested and eat myself healthy. I lost a stone in weight making me 9st and in May 2020 I was unable to walk unaided.

    I contacted Dr Joseph again who booked me in to see Dr Kenneth Dawson. I was ‘relieved’ to have my diagnosis on 19th June but devastated. My life had been on hold for 18 months and despite the diagnosis I felt an incredible need to focus on what I had to do, prioritising and getting on with my life. I was upset that I had been in limbo for such a valuable length of time

    I realise I have been through a grieving process since June 2020.

    I have kept busy by prioritising and organising my life. I was like someone on adrenaline or caffeine for the first few weeks. I bought a motorised chair, stairlift and walking aids to assist me

    I had so much to organise... one thing to do was to get married before I got much worse

    We married on 19th September !

    My husband is still working but takes Monday’s off. My sister stays every other week. I have fabulous carers who visit every day, a caring husband, a lovely sister, two friends who are supportive and caring and a Jack Russell (Molly Dog)

    I am now hoping to get a Wheelchair Accessible Vehicle to help me make the most of the life I have...

    I have been waiting since June to get an adapted bathroom... nothing progressed yet except a plan

    I remain positive and strong. I realise I am fortunate to have this forum, my family, my friends, my dog, my life, my body, my spirit and my personality.

    I hope I can meet and chat with you. I would like to hear your stories and know that you too are similar to me, struggling but persistent and still achieving goals

    I send you warm wishes, strength and courage

    Jeanette

    I have the ability to cope with this and I can still be the best person I can be. This is my life - if I am happy others around me are happy too

    #2
    Welcome Jeanette to the place where no one wants to be but are glad they found. Stay Strong. 😊x

    Comment


      #3
      Hello Jeanette and welcome,
      gosh you have been very busy this last year, you must be extremely well organised and determined to get all that done in a relatively short time, with that attitude you appear to be taken MND head on - Good for you. Keep positive
      S
      As long as there’s golf and beer I’m happy

      Comment


        #4
        Jeanette it's so lovely to meet you. I'm so sorry it took so long for a diagnosis but then I'm sorry for the one you have. It's my husband that has mnd he was diagnosed last year and quite quickly too.
        lovely people here. We discuss all kinds of things as you have probably seen 😁
        love and hugs
        Denise xx

        Comment


          #5
          A warm welcome to our band of brothers, Jeanette, and many congrats on your recent nuptials 👰

          Sounds like you're well set up - shame you had to buy so much equipment yourself.

          Stay healthy.

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

          Comment


            #6
            Hi Jeanette and welcome. Gosh, sorry that you’ve had to pay for everything that (if you are in the UK) the NHS or your local council ought to have sorted out for you.

            Congratulations on your recent wedding 🥂.

            Like most of us hear you sound positive. I hope that your bathroom conversion happens soon. Are you having a wet-room?

            Most of us had some delay in getting diagnosed, a wasted year in my case but we got there in the end.

            I’m glad that you have plucked up the courage to join us on forums. Our first post can be a bit scary but well worth the effort. Thanks for explaining

            Take care, Lynne x
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
            I'm staying positive and taking each day as it comes.

            Comment


              #7
              Hi Jeanette,

              Welcome to the forum. I've a similar story, first symptoms April/May 19. Muscle weakness in left hand. I googled 'muscle weakness' and one of the suggested causes was MND. At this point I had a few sleepless nights. Saw my GP and asked about MND. He said it could be, it's very rare, but I'll refer you to a neurologist to check. After MR and NCS neurologist diagnosed CIDP. Tried infusions of IVIG with no effect. Finally, after a CT, PET-CT, 2 lumbar punctures, 2 more nerve conduction studies and a second MR, the diagnosis was changed this July to MND. I suspected MND all along because I didn't have some of the characteristic symptoms of CIDP. Still comes as a hell of a shock though.
              Each day is made easier with a bit of humour.

              Comment


                #8
                I want to say thank you for your Welcome and your messages. It was good to have contact with you. I now feel like I am not the only person I know to have MND. It has felt like there is no one with MND available to chat with and a group who I can be included in
                I hope I can chat with you again.
                I need to work out how to reply to the individual messages though...
                I have the ability to cope with this and I can still be the best person I can be. This is my life - if I am happy others around me are happy too

                Comment


                  #9
                  Hello and welcome Jeanette.

                  Glad you have found us and you can be sure of support here. Don’t worry about replying to everyone as this can be onerous and many of the members here have typing difficulties so we tend to mention names in a single post.

                  Best wishes,
                  Barry
                  I’m going to do this even if it kills me!

                  Comment


                    #10
                    Originally posted by Jeanette Pearce View Post
                    I want to say thank you for your Welcome and your messages. It was good to have contact with you. I now feel like I am not the only person I know to have MND. It has felt like there is no one with MND available to chat with and a group who I can be included in
                    I hope I can chat with you again.
                    I need to work out how to reply to the individual messages though...
                    Hi Jeanette Pearce ,

                    Great to see you have shared your first posted - welcome to the Forum. In response to your question re replying to individual messages, if you click the quote button on the post you want to reply too this will take you to the message box and you will be able to reply in relation to the individual message. Please don't feel you have to reply to everyone individually though, do whatever is best and easiest for you.

                    I have attached a screenshot to show where you can find the 'quote' button. I hope this helps?

                    Also, if you want to link someone in your reply, as I have above, just type an @ sign before writing their name.

                    Thanks,

                    Forum Admin
                    Our working hours are Monday to Friday 8:30am until 5pm

                    Comment


                      #11
                      Welcome Jeanette and congrats on the wedding news! X
                      Sounds like you've been busy and I feel the tasks and involvement does come in waves, one week all the appointments and research and the next slightly calmer. You're not alone.

                      Tess
                      x

                      Comment


                        #12
                        Hi Jeanette and a warm welcome to the forum. I'm so sorry for your diagnosis but I'm glad you've found us as it's a great place for friendship and support from people who really understand. As Tess says, you're not alone.

                        Congratulations on your wedding. 💕😊 I hope you get your bathroom and WAV sorted soon as this will make life easier as will your positive attitude.

                        Take Care,
                        Love Debbie x

                        Comment


                          #13
                          Welcome Jeanette, so sorry to hear about your problems getting diagnosed. You gain some comfort from the fact that you’re not the only one going through this nightmare but honestly wouldn’t wish it on your worst enemy.
                          Your fortitude is admirable. Select the company to do your wet room carefully as I am experiencing all sorts of problems and I haven’t the time or energy to pursue a happy ending.
                          Good luck x
                          Jerry

                          Comment


                            #14
                            Hi Jeanette
                            Welcome to a lovely group that we all really wish we didn’t have to join. You will get a lot of support and help here.

                            I would love to hear about both the wet room and wav when it’s sorted.

                            As hard as it can be keep smiling

                            RICHARD

                            Comment


                              #15
                              Thank you all for the warm welcome. It is really appreciated and I am grateful for the support and everyone’s sense of humour here. Thank you too for your wedding wishes... I wish you all to be safe, comfortable and to have a happy, positive outlook to get you through this strange chapter of our life’s

                              I hope to be able to join your conversations and banter. I read the comments regarding arranging funerals and think the funeral where you can attend and join in the celebration before you die is a great idea. I’d love to have balloons let off and fireworks at mine
                              I have the ability to cope with this and I can still be the best person I can be. This is my life - if I am happy others around me are happy too

                              Comment

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