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Karen Fountaine

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    Karen Fountaine

    Hello everyone
    My husband was diagnosed with mnd at the beginning of November. We have no family and are struggling to get support. I have to work, so am totally reliant on the goodwill of neighbours. I think we are both still in shock. Sorry if this sounds negative, we are normally very upbeat people.
    Best wishes

    Karen welcome to the group no one really wants to join. Here you can ask anything, nothing is wrong, laugh, shout and cry. We have all done it. Most of the people on the Forum either have MND or their loved ones do. You will get lots of support.

    May I suggest a few things; contact your husbands GP and ask them to urgently arrange for support, and contact the MNDA who will also provide you with lots of information and support.. If and when the time comes they may also provide some financial support for equipment.

    It is difficult but confide in your closest friend if you have not already done so. Also tell your employer and HR department as there will be occasions when you will need to be with your husband for home visits and consultations.

    Welcome again Karen.



      Karen Fountaine welcome to the forum. Sorry to hear of your husband's diagnosis...the 1st week's are the hardest.

      The neurologist involved should have made onward referrals & you'll receive the report - as also sent to GP. As per Richards advice above.

      Once support kicks in it can feel overwhelming.

      Look forward to hearing from you

      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.​​​​​​


        Karen Fountaine welcomme Karen. Sorry from your husband diagnosis. Must be a huge shock. Maybe get in touch with OT to sort out social care. Xx
        Last edited by Lynne K; 4 January 2022, 10:09.
        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.


          Hi Karen, you have had a few suggestions from@Lynne K,LindaB, and Richard.

          Sorry to hear your husband has MND and it’s important to know where to get support.

          The most important thing is which team has the neurologist referred you to?
          I suggest keep a book with contacts name and numbers.
          Maybe if you haven’t already done so you can sort benefit entitlement, is Lasting power of attorney in place, have you got a blue badge yet?
          I don’t your husbands age …but MNDA have fact sheets as do Age Uk( on line).The info sheets explain many issues such as how care at home is funded,etc.
          You could consider a lifeline system, keysafe as might be useful for the future.

          You can also contact Social Services/ adult care team for your area and explain your husband needs care at home asap.They should arrange a visit ( covid permitting).There will be a financial assessment at some point so it’s as well to get paperwork in order.It’s a means tested service.

          If your husband is deemed self funding due to savings level they can still help you source a care agency or you can choose to source your own.It’s a bit more complex than that but I suggest you get cracking as it can a time to get organised.

          Environmentally ..there may be questions for the OT about if any changes/ equipment is needed to keep your husband as independent as possible.

          Thats enough for now from me.It’s great you have supportive neighbours but it’s as well to have a formal arrangement too.
          Best wishes


            Hi Karen while we cannot offer physical help we do provide emotional support. Try and not overthink and take one day at a time. Stay Strong. 🤗👌👨‍👩‍👦💞xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


              Karen Fountaine A warm welcome to you and to your husband - you're part of the forum family now, so we'll support you both as best we can.

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


                Thank you all of you, for such a warm Welcome! I don't feel quite so lonely now


                  Hello Karen and husband. Welcome to our select club. xx


                    Karen Hi and welcome, I’m sorry to hear about your husband’s diagnosis, it is a big thing to come to terms with.
                    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.


                      Welcome Karen, love from Heather x
                      Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!


                        Hi Karen

                        My husband was diagnosed April 2021, A lot has happened since then.

                        I have been off work since as I want to spend as much time with him while I can. I can have a year off sick and I have applied for a career break from April 2022.

                        I am now his full time carer although we do get some social care input which for lots of reasons doesn't really help. I am on the process of moving to direct payments to "employ" a PA which should mitigate a lot if the problems that we have with social care.

                        You will feel overwhelmed when all of the services initially "kick in" but best to have things in place before you need them. It is very scary and I made the mistake of reading everything I could find about MND. I wish I had waited until things were relevant though as the fear of the future took over everything initially.

                        We have been lucky that health services have been very supportive and nothing less than amazing.

                        We still cry a lot, but the days are bearable. Enjoy each other and make memories, go on holidays while you can.

                        Ask whatever questions you have of the health professionals, even the not so nice questions as it helps provide choices.

                        Best of luck - it is as much a journey for you as it is for your husband.

                        Sending hugs
                        Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

                        Sense of humour intact throughout.

                        Sadly passed away peacefully 2/9/22


                          Thank you