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Lynne Haigh Introduction

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    Lynne Haigh Introduction

    Hi, My name is Lynne Haigh and my husband John had a horrific accident in Istanbul in 2013 resulting in 5 vertebra being replaced. This year his speech started to deteriorate and his swallowing also. Doctors put this down to a TIA (mini stroke) which he could have had during the night. His stiffness and mobility also started to deteriorate too. He was admitted into hospital 27th September after repeated spasms. After just over a week the hospital rang and said the doctors wanted to see us the following morning. When I arrived we were expecting to be told that because John had suffered a TIA (or more than one) be prepared for a full blown stroke. You can imagine how we felt being told he had Motor Neurone Disease. It was like being hit by a stream train. He was fitted with a PEG feeding tube as he can no longer eat or drink, plus a catheter. After we digested the information everything seemed to fit into place regarding his speech, mobility and stiffness etc. He was in hospital for 12 weeks awaiting a care package being put into place.
    On discharge from hospital my home now resembles an 'Old People's Home', with hospital bed, commode, wheelchairs, electric scooter, boxes of feeds, catheter bags, boxes of meds etc. One man left home on the 27th September and a totally different person came home on the week before Christmas. We have had to try and find a totally new 'norm' which sometimes changes daily.
    My 23 year old grand-daughter Natasha lives with us and is currently on her second year of her Masters Degree and also doing a part time job in a local cafe. She suffers from Mental Health problems. She is now a part time carer for a MND sufferer.
    I do not sleep well (never have done) but now have to sleep with one ear tuned for John during the night and then find I am constantly so tired during the day. When it comes to evening it can get irritable and I have butted heads with Natasha a few times, which is not good. However, we are very close friends as well and can always talk about it and resolve any problem or issue we may have.
    Sorry if I have rambled and this is not what is supposed to qualify as an 'introduction'.

    Welcome Lynne, John & Natasha.

    Wow Lynne, you must be one strong lady. I am sorry about John's diagnosis and for all his previous trauma, which must have been even worse as it was abroad.

    Have you applied for NHS CHC (Continuing Healthcare) which funds carers? Caring for a person with MND is a tough job, both physically & mentally, and one which takes a lot of energy & resolve, so is very difficult to do with 1 or 2 people.

    Is John linked in with his local hospice? If not, it's highly recommended - they tend to offer good support, not only for the person with MND, but for you too. Most offer Day Hospice, which would give you and Natasha a few hours off per week. Some also offer respite care for John or if he needed to go in for symptom management for example, hospices are so much better than hospitals.

    I know what you mean about equipment - we had to move house because we ran out of space (OK, slight exaggeration, but it was a factor ) They are just pieces of kit to help me get the most out my life, I suppose!

    Look after yourself Lynne. You have a lot on your plate and your health is just as important as John's and Natasha's.

    Sending you a big hug.

    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


      Hello and welcome Lynne.

      There is nothing I can say that will ease the burden you find yourself in other than we are here to listen and offer advice or moral support.

      I hope that the support system works promptly and efficiently to support you, John and Natasha. Should you need any information then one or more of this forum family will respond.

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


        Hi Lynne H. Gosh, you have all been through the mill. It's not surprising that you're exhausted. Ellie has given you great advice. I'd stress the need for night time care so that you can get the best possible rest. Sleep is very important. I hear what you said about having a history of poor sleep. I've had this too but mostly now in a better place with it. I hope that you can find a solution that works for you.

        My thoughts are with you, Natasha and John. Take care, Lynne
        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.