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Thread: Our Journey with MND

  1. #1
    Forum Member
    Join Date
    Mar 2018

    Our Journey with MND


    Iím Hilary and have been a member of this forum since March this year, which was a few days after my husband, received his MND diagnosis. I have visited often but never posted as our journey was rapid and I didnít find others that had the same rate of progression. I have thought long and hard about sharing my experience as do not wish to frighten or worry anyone who may have many happy years ahead.
    Chris first noticed symptoms in November 17 when he experienced cramps in both legs after walking. He then struggled with dexterity in his fingers during December and visited our GP in Jan. Blood tests were done and he returned to find he was deficient in vitamin K and D. The GP did a further neuro exam and called in another GP to confer. They decided to refer him for neuro investigations. He visited a neuro in early Feb who advised following a full examination that it could be a number of things but he wanted an EMG. This took place a week later and we returned to the neuro at the end of Feb who confirmed MND. He was extremely helpful and answered all of our questions as honestly as he could and explained everyone had very different journeys and it was impossible to put a time span other than the average of 3 to 5 years that could of course be wildly different and be shorter or much longer. We knew that he had both upper and lower motor neurons affected.
    At this time Chris was already struggling with stairs, had tripped a couple of times and had visible muscle wasting. We shared the news immediately with our family and friends and decided we could only take a positive view and try and live whatever time we had to the fullest. We were lucky that all of the support needed for symptom control sprang into action and we had a whirlwind of visits at home from Neuro nurses, OT, Physio, speech therapist and MND nurses. We were referred to the MND Centre at the QE in Birmingham and saw everyone again in one setting. It was now April and Chris was using a manual wheelchair for any trips outside of our house. We left our first and only clinic visit with a foot support and a prescription for Rilluzole that we were told not to take until blood tests results were back. His liver function tests returned as poor and we were advised not to start Rilluzole.
    We had fantastic support from our physio who gave constant advice and arranged to have all sorts of equipment delivered that we could have ready to use as things changed. This was with a doubt the best advice and support as Chris moved on rapidly and by the end of April was using a stand and turn aid and a nippy to support breathing at night.
    We went on holiday in May to Barbados and had to hire an electric wheelchair while we were there. Although we had planned to fill the summer with as many trips as possible this was not to be and when we returned home our lovely physio arranged a hospital bed and the powered wheelchair was already in place. Chris by now was unable to walk at all and was using a hoist. We had both worked full time but had taken leave in March to try and make some special memories while we could. As Chris declined rapidly we did not return to work and by June we had care visits in twice a day through continuing healthcare.
    The summer was beautiful and we spent days and evenings sat outside with family and friends. Our children returned home for as much of the summer as they could.
    We had support from our local hospice from the start and had fortnightly visits from a nurse specialist at home who helped us with DNR and advanced care plans. Chrisís speech and breathing continued to decline but he continued to speak and eat with just a little more difficulty. The summer gave us time to put everything in order and for us all to say everything we needed to. Chris by July was having 4 care visits a day and using his nippy most of the time. We borrowed a van that allowed us to get out and about when he felt up to it but most of the time he preferred being at home with family and friends. The hospice support increased and Chris discussed with the consultant in palliative care his wish to have control over his death and to die at home. By the end of July Chris was struggling with coughing fits and choking on secretions. He found this both frightening and distressing. Carbocysteine was prescribed as well as Lorazepam and these both worked well for a couple of weeks. He moved onto oramorph to be taken as required for pain relief in his muscles. Chris by now wanted to be assured that he could control his own end as he was frightened of choking to death or of becoming completely locked in. He was unable to feed himself although able to eat a fairly normal softer diet and could not now move his arms.
    Our palliative consultant assured Chris that, as he was now fully dependent on his nippy 24/7 he could at anytime decide to withdraw this support and be helped with stronger drugs to support any anxiety from air hunger.
    We had a very frightening few days at the start of August with coughing and choking and Chris decided to go into the inpatient unit of our local hospice for help with symptom control.
    Within a few days he was settled and happy and felt safe. He relaxed and enjoyed the support from the hospice team as well as the relaxed atmosphere that allowed him many visits from family and friends for BBQís, watching test cricket and films and small things from the team such as floating in a hoist in a huge bubble filled bath. Our family and I were able to be with Chris at any time of the day and night and the feeling of safety from a 24/hr. medical team comforted him.
    Chris did discuss withdrawing his nippy as he felt he had come to the end of what he was willing to endure. He was still talking although quite difficult at times to understand through his mask, still eating and spending his days in his wheelchair although unable to work the controls.
    On August the 14th Chris enjoyed a lovely day surrounded by family, eating lunch outside and watching the dog run round the hospice. He asked people to come back and have one of his favourite suppers with him. At 4pm he asked to be put back to bed which he had not done previously and at 6pm he told me he was ready to go and that he was just going to slip peacefully away. He said goodbye and I sent the visitors away, unsure if this really was the end. Close family stayed that night even though he had been awake and chatty all day. Chris stirred at midnight and had a drink, he woke at 4am and wanted a cup of tea and was a little unsettled. He went back to sleep and passed peacefully away at 6.40am with his mask on until right at the end and surrounded by family. I am glad he did not get to withdraw the mask although we would have got through this if that were his wish.
    I have absolutely no idea how he knew he was going to die or even if he just decided the time was right.
    Our journey was 5 Ĺ short months but filled with as much happiness as possible and I am happy I was able to be there everyday from diagnosis until the end. Chris was 53 years old and although I miss him every minute of every day I would not wish him one more day of living with MND. He had a courageous approach to death as he did to life and maintained that although his life was shorter than he would have wished it was one full of happiness and he had no regrets. I have so many happy memories that I hope one day I will be able to gain support from once I am over the shock of a short battle with MND. Chris was able to write his own eulogy and to say and see everyone he wanted to in the short time he had post diagnosis. I will try and face this loss with as much determination for a life well lived as he did.
    I knew nothing about MND until Feb this year and found huge help through this and other online forums. Thank you for being here and although I did not have the courage to post during his illness I hope that one day I will live to see a breakthrough in MND treatment and that this post helps others but does not scare those that are able to live a much longer time with MND.


  2. #2
    Forum Member
    Join Date
    Dec 2017
    Hello Hilary
    Please accept my heartfelt condolences , my heart really goes out to you. That was really quick for your husband , don't worry about upsetting anyone it makes us realise how "lucky" we are to have a longer time with loved ones. What a shame that you felt you couldn't post before it might have helped with morale support.

    I was diagnosed in Nov 20017 but had symptoms all that summer before. I consider myself fortunate because I am still fairly independent .

    Take care of yourself . It sounds as though you have the support of family and friends which is good
    Love Chris x

  3. #3
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Hilary;

    Thanks for sharing your and Chris's Mnd story with us. Such a tough sad 8 months.

    It was great that you managed to get away in May to Barbados and get around.

    Nice that he could choose when and how he could pass away without much pain.

    Hugs, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #4
    Forum Member
    Join Date
    May 2018
    Hello Hilary,

    I am so very sorry for your loss but thank you so much for sharing your story. I am also sorry that your husband's progression was so cruelly quick but it does sound like you made the most of every precious moment. We probably shouldn't need reminding but your story has made me determined to make the best of every single day.

    Please don't apologise for not posting before ... You sound like a really brave person and you were lucky to have each other, although obviously not for long enough.

    I really hope you have lots of love and support around you.
    Love Debbie x

  5. #5
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Newark on Trent
    Hi Hillary,

    Please accept my condolences for the loss of your beloved husband, Chris. It is very brave of you to share the journey you and your husband had following his diagnosis. I’m sure in time you will look back and treasure the memories of good times together.

    Thank you for sharing your story.

    Best wishes,
    Iím going to do this even if it kills me!

  6. #6
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Welcome Hilary and heartfelt condolences on losing your Chris.

    Thank you for sharing your very personal story - it is so well written, full of dignity and love.

    I think both those of us living with an MND and those caring for a loved one will take comfort in Chris' last day. I often read of people "knowing" their death is close - your Chris had a very calm and peaceful death, obviously content and at ease with how he spent his final days. It's testament to him not being afraid to go on his terms and I think you must have had a strong relationship.

    I cannot imagine your sense of loss Hilary, but I hope you can find some comfort at how peaceful Chris' death was.

    I hope too that you have good support.

    RIP Chris.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #7
    Forum Member Twinkle's Avatar
    Join Date
    Aug 2018
    Hi Hilary,

    Thank you for posting about both of your journeys with MND.
    You write beautifully and heartfelt X X X.
    It was sad to read from a wife's point of view but I'm glad I read it.
    Last edited by Twinkle; 16th November 2018 at 21:48.

  8. #8
    Forum Member TIANDB's Avatar
    Join Date
    Jun 2018
    Middle England
    Hi Hilary and thank you for reporting so well. 5 1/2 M is indeed super rapid progression and at least Chris went peacefully.
    What a trauma this disease is and you highlight a fact with your writing that is, that many with rapid progress never even get to report
    on forums. I had my symptoms started in November with my right foot and I have been on a very slippery slope also. I am separated from my wife who is also a Hilary. For a moment I thought it was her writing. We are all very different, I like to be on my own and cope better that way up until now. I have no inclination to go outside if I even could, I am always just so weary and because of my broken voice I try to avoid visits. My family are very supportive but I tend to keep them away. I keep my hope up with trying different herbs, supplements and protocols. I am also lucky to be on RCH4 which has slowed slightly my slope. I wish you well and Take care. TIANDB

  9. #9
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Hi Hilary, thank you for sharing Chris and your story. As somebody else said it was well written. I'm sorry to hear that Chris had a very fast degeneration. But the way that you both handled it was inspirational. I wish you and your family peace and future happiness, having suffered enough for one life. Your experience could make you a grand forum member. Take care and please keep posting. Love Lynne
    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.

  10. #10
    Forum Member
    Join Date
    Aug 2018
    Wow write so bravely and so beautifully about your Chris. I’m so sorry for your loss.
    Unfortunately my husband, Dave, has a similar progression to Chris. His first symptom was in early June and he is now completely reliant on me and carers. We were told last month that his progression is unusually fast, and that this is not likely to change. So I have an idea of what your experience has been. I still have my Dave, for now, but, no idea for how much longer. So like you, we are trying to live every day in the best way we can. We are also very fortunate to have an amazing team supporting us. We can’t fault them at all.
    My love to you Hilary. I’m told it gets easier, but that doesn’t really help does it?
    Take care of yourself. I hope your family is still surrounding you with love and support
    Jen xxx

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