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    Hello folks

    Hello everyone

    My husband was diagnosed a year ago with MND, limb onset. I've been browsing this forum almost daily for about six months and have had no end of information, reassurance and helpful tips both from current users and some who are sadly no longer with us. Finally feel able to join the conversation!

    A year ago hubby was walking (albeit on crutches)... now he is in a power chair and can't walk or stand. Rapidly losing the use of his arms too. He can still talk and swallow, though we have to be careful with food now.

    He's the most cheerful and optimistic person I know and though he knows what's ahead he refuses to borrow trouble. He does get down of course but he's so strong and is more concerned about me than himself. I think that this awful disease has brought out the best in him, he has depths of patience and resilience and is so caring towards other people. I hope that he can stay cheerful even when disability increases. We laugh frequently and have good times, and are just trying to live as normal a life as possible... not easy when nothing is normal anymore. Sometimes I still can't quite believe it.

    We've had a lot of family visiting over the summer which has been good. Also we're lucky enough to live in an area with excellent care... we have an MND nurse who has been a lifeline and dealt with a lot of practical issues early on (application for house adaptations for example) which would have overwhelmed me. We've had a lot of help and support which has been and is wonderful.

    My husband is without doubt my 'better half' - emotionally I've struggled a lot whereas he has been more level-headed and accepting. I'm naturally of a very private and introverted disposition and the constant barrage (so it feels) of professional people has been difficult to cope with at times and has made me anxious, but they are nearly all very sympathetic and sensitive. I'm a Christian and I believe that God has a purpose for good in this situation but that doesn't make it easy. My biggest source of strength is the Bible - reading it is touching base and I listen to sermons etc frequently - there's a lot of really helpful stuff out there from other Christians who have been through terrible times and come out the other side with a renewed strength and hope.

    Hubby was in respite for a few hours today so took the dogs for a walk I haven't done for well over a year. I don't feel I need a break from him but we both benefit from a change of scene. Went through woodland, deliciously scented with dying leaves, out onto a high ridge overlooking a green basin of farmland set with neat toy buildings and looped through with a silver river. Got stared at by some handsome, glossy cows who chewed insolently. Down a velvety green slope between hawthorn trees with glowing berries and broom shrubs still popping their seeds. Saw two roe deer - fortunately the dogs didn't see them - and a buzzard swooping away. The horizon looking north is tipped with the first white of winter.

    Hubby is refreshed too - possibly he needs a break from me now and then! But it's good to pick him up and get him home again.

    Hope everyone is having a good day.

    Best wishes


    Husband diagnosed October 2020 with ALS. Started with foot-drop and weak grip/visible wasting in right hand. NIV and powerchair user.

    #2
    Betty May hello & welcome. So glad you decided to take the plunge and post such an interesting message. Your walk sounds amazing!
    A lot of great people on here and a source of support in so many ways.
    ​​​​​​​Take care Linda 🤗👍
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

    Comment


      #3
      A warm welcome to our forum Betty May,

      Well done for making your first post and a very detailed one it is too... it's lovely to hear from you. it sounds like you and your hubby are mostly staying positive, which is not always easy. You should be very proud of yourselves.

      Its good you have professional support ,
      Look forward to chatting with you again,
      Love Debbie x😘🤗

      Comment


        #4
        Hi Betty, great that your hubby had good support. I enjoyed reading your descriptions of your walk in the woods. Lynne x
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

        I'm staying positive and taking each day as it comes.

        Comment


          #5
          A warm welcome to you both Betty May

          Given that your darling husband has swallowing issues, has a conversation re a feeding tube been had?

          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
            Hello Betty May and husband. Sorry you had to join us. But welcome anyway. xx

            Comment


              #7
              Thank you for your warm welcome everyone.

              Ellie, re. the feeding tube... yes, he had a RIG in May. His breathing was already compromised so they did it under sedation with him wearing his NIV. At the moment he's only having bottles of Ensure through the tube (and sometimes meds) but it's peace of mind knowing that we have it in place.


              Husband diagnosed October 2020 with ALS. Started with foot-drop and weak grip/visible wasting in right hand. NIV and powerchair user.

              Comment


                #8
                Welcome Betty May. Your wonderful descriptive post brought back co many memories of, unfortunately, times never to be repeated. I wish you and your husband well.

                Richard
                Richard

                Comment


                  #9
                  Hi Betty May,
                  similar to my situation since I was diagnosed June 2020.I too am a committed Catholic and that helps me greatly as well as the support from parishioners , deacon visits and you tube Christian talks and on line masses and services.
                  Its so lovely to get outdoors.We went for a walkabout yesterday just locally and it was lovely to see leaves changing colour,admire people’s gardens and see people we know.
                  Keep strong Betty May and welcome to this forum.Keep posting.
                  Best wishes
                  Mary

                  Comment


                    #10
                    Thanks Richard and Mary

                    Husband diagnosed October 2020 with ALS. Started with foot-drop and weak grip/visible wasting in right hand. NIV and powerchair user.

                    Comment


                      #11
                      Hello Betty May Try not to over think things and take tiny steps. Time is more precious now so use it wisely. We are here to help you. 👍✌️🤗😁xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                      Comment


                        #12
                        Thanks matthew55 . That's good advice!

                        Husband diagnosed October 2020 with ALS. Started with foot-drop and weak grip/visible wasting in right hand. NIV and powerchair user.

                        Comment


                          #13
                          Hi Betty may
                          My husband has ALS and dementia. I find it hard but he seems very accepting of the situation. I find, because he is practically housebound, I rarely see or speak to anyone which I'm sure makes my situation worse. Being in a flat I don't have anywhere to go to get away from him. I know that sounds terrible but he follows me around. I told him I'm going in the bathroom to do my hair do you need the loo? Just get in the shower and he hammers on the door. It can get stressful. They are trying to arrange carers but there seems to be a national shortage of help. My av is determined we are going for a spa trip. Just need a costume or I'm going to go as lady godiva.
                          welcome Betty may some lovely people here to help. 😘🥰
                          when i can think of something profound i will update this.

                          Comment


                            #14
                            I feel for you as it's a case of when is it too much help? I know from experience that I want to try and do everything myself, and when well meaning people offer unsolicited help it can be very frustrating. Just saying 😉🤗😘😍xx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                            Comment


                              #15
                              denise
                              hi Denise, has anybody referred you and Stephen to St Lukes hospice in Plymouth...take a look at their web site..but you need a health professionals referral.It might be a source of support for you both.
                              Also might be worth talking to local social services about respite, daycare for now or the future.They can do a carers assessment as well as assessment of stephens needs.
                              Plymouth has caring for carers unit on 01752 201890. Open weekdays 9-5
                              Age uk Plymouth organise dementia daycare ..01752 256020

                              Really hope you get some help Denise as not easy caring without a break as you well know.
                              best wishes
                              Mary x

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