Announcement

Collapse
No announcement yet.

Newbie

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Newbie

    Hi, not sure what to expect.

    My wife (65) has been diagnosed with MND last week. We are still coming to terms with it as a family, but she is not accepting it.

    Where do we start.

    #2
    Mitcheak A warm welcome to the forum, Mitch, so sorry about your wife's diagnosis.

    It can take a while to get one's head around the bombshell of an MND diagnosis and your wife will go through a rollercoaster of emotions. Her diagnosis is very recent but maybe, after a few weeks, she will be in the right frame of mind to speak to a counsellor about it?

    How is she physically - does she need assistance doing any tasks?

    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.

    Comment


      #3
      Mitcheak so sorry to hear that, it’s a horrible thing to have to digest, we’ve all been there . I hope you have also been referred to appropriate professionals to give you some support and guidance and help with your wife’s diagnosis?. Were you told what sort of MND she has? Anyway welcome to the forum, and I hope we can be of some support to you both and share our experience with you if useful. x
      Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

      Comment


        #4
        I'm afraid acceptance needs to be the way forward. You should now be contacted by a bewildering array of medical professions who will be coordinating the support your wife will need, and you really need to engage with this process to know what is being offered.
        Diagnosis is a devastating blow to any individual and their family, but on this forum you will find friendly and practical advice from a community that knows exactly what you are going through.
        Wishing you both strength.
        Hi, I'm Eddie.
        Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
        Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
        Still wondering what the future will bring.

        Comment


          #5
          Hi Mitcheak and a warm welcome to the forum.

          I'm so sorry for your wife's diagnosis. You must all be in such turmoil. When I was diagnosed I found it hard to accept and I spent hours googling alternatives. Eventually you do accept it and life does move on albeit in a different way.

          Take care of yourself,
          Love Debbie x

          Comment


            #6
            Hi Mitcheak I am 63 and diagnosed this February after having mnd 'ruled out' when 60. It took 6 years to find out what was wrong and some have said I have probably fared better because I didn't know - it was a relief to finally find out but at the time the whole world stopped for me.

            You need time to rationalise, understand and make decisions - carry on working or pack it in, etc, so many things. None have to be decided straightaway. It's a lot to take in. My sister told me it is like the 5 stages of grief and somewhere at the end there is acceptance.

            You are there for her and that is the most important thing. xx


            Comment


              #7
              Mitcheak I would also like to welcome you to the forum and am sorry to hear of your wife's diagnosis. I echo what has already been said by other members. It is a devastating time and nothing can really prepare you for it. I was diagnosed in June, but I sought a second opinion which was recommended by the mnda nurse because I couldn't get my head around it. I too spend months looking for alternative disorders. Your wife will soon hear from various professionals from different departments. If its too much at one time then dont be afraid to say, I couldnt cope with so many at once and so 2 of the 5 referrals were delayed until just recently.
              The forum is a place of friendship and support and somewhere to come to for many things, advice and laughs when needed. the mnda helpline is also so beneficial and full of experience and will know what to say and can guide you both. thinking of you, x
              Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

              Comment


                #8
                Mitcheak so sorry about your wife’s diagnosis. It is so daunting at first for you all and you will find ways to deal with it but it will take time. Your wife and perhaps you are in shock at the moment.
                My husband is in his 5th year with MND and he is still walking.
                Be kind to yourselves. Accept the down days knowing this period is something that you need to go through to reach the better periods.
                You both will get there and then hopefully begin to do all that you want to do and can do.
                Im pleased you have come onto the forum, it great for those with the condition and also family, like myself. Thinking of you both xx

                Comment


                  #9
                  Mitcheak sorry to hear about your wife's diagnosis. The first period is very difficult and it's such a difficult thing to accept. Everyone's reaction is different and it may take a bit of time but hopefully various different medical people will follow up with your wife and help her and you all through the process.
                  ​​​​​​The forum is a great place for advice and support.

                  Comment


                    #10
                    I am so glad that I joined the forum.

                    All your encouraging words and comments strengthen me to deal with it in a better way. Thank you so much everyone.

                    The Neurologist did not indicate what sort of MND it is.

                    She is diabetic and on insulin and tablets, has hypertension and on tablets. She is currently on cortisone and being weaned off it. She has been taken off Statins about 2 months ago.​

                    The following is what I observed:

                    Impaired speech (For some time now and slowly getting worse)
                    Insomnia (Since being diagnosed)
                    Difficulty in swallowing
                    Bouts of chocking
                    Difficulty with walking (For some reason there has been an improvement since the diagnosis - Not sure what to make of it)
                    Tremors (One side only - Leg and Arm)
                    Tiredness
                    Bouts of constipation
                    Loss of muscle definition (Gradual)

                    Once again, thanks for the support.

                    Comment


                      #11
                      Welcome to the forum, I was diagnosed only 3 weeks ago and was terrified , being on here was so supportive just knowing i wasn't alone helped so much. Try to get your GP onside as mine has been fantastic organising OT, speech therapist and mental health person. 3 weeks after diagnosis i feel so much more acceptant of the situation and reading other peoples stories have helped. My partner and i talk all the time about the future and talking has made acceptance easier,

                      Comment


                        #12
                        Sorry that you find yourself here but it's the best place for you. I think everyone has said what I would say but I can send hugs to you and your family.
                        😘
                        when i can think of something profound i will update this.

                        Comment


                          #13
                          Hi Mitcheak,

                          I echo what has already been said. When my mum was diagnosed we went through the shock and all the grief stages as someone else mentioned.

                          We immediately focused on what needed to be done short term, medium term and long term.

                          Those first three months we had what felt like a tsunami of appointments but it stood us in good stead to get the ball rolling.

                          Like your wife my mum had speech and swallowing issues. We were keen to get a PEG referral, as suggested by our neurologist.

                          We also tried to organise a wet room, which we ended up having to do privately this May (issues with Covid delayed council help and by the time we knew the MNDA could provide assistance it was too late as they needed us to have another OT assessment for their paperwork and the work was scheduled to be done which we did not want to delay.)

                          There's definitely lots of help available, it just a case of accessing those resources and planning for her future needs as well as dealing with the here and now.

                          Yes, it can feel overwhelming. Vent when you need to and ask loads of questions. You'll be surprised by the strength you have to cope.

                          Things I wasn't aware of at initial diagnosis, that I could have asked for at her follow-up neurologist appointment. Your consultant can provide you with a DS1500 helps bypass a lot of questions on the benefit forms, apply for disabled badge, if you live in London apply for a TaxiCard for discounted Black cab helpful when travelling via wheelchair. We were encouraged to get Legal Power of Attorney (LPA) all these applications take time and I'm glad even though I put them off for a fair while that I eventually got them out the way. Although I've seen on the forum that that there are association visitors who could help you.

                          I'd say the first few months may seem overwhelming. Read information at your own pace. I called the MND connect line and got both the guides living with MND and the one for carers. It gives you a framework of what to expect.

                          Also posting on here I've now realised is incredibly helpful and supportive. You get first hand information and realise you're not alone 😊

                          Carer to mother diagnosed May 2021 with bulbar onset MND. No longer speaks, RIG fed, NIV 24 h, left side completely weak/no function, right leg now weak, limited use of right hand.

                          Comment


                            #14
                            Mitcheak welcome to the forum, sorry you find yourself here. It is a great source of information, support and humour.
                            Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.

                            Comment

                            Working...
                            X