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Thread: 3rd Post :)

  1. #1

    3rd Post :)


    Just a quick hello to the community here. I've just popped in to see if we can find a new home for some of my dad's equipment (wheelchair and reclining easy chair) but thought I might say hi.

    Background... My dad started showing symptoms in 2002 and was quite aware of the possibility of developing MND as we had previously lost my granddad to what we thought of at the time was Parkinson's. My dad's half sister also developed symptoms before she passed as well.

    It was a tough time for us all when he was finally diagnosed at the end of 2003, we all did alot of reading about MND, possible treatments etc and through tests it emerged that it was the familial form of MND that we have inherited. My mum gave up work and became the main carer for dad as his condition worsened.

    In the early days, mum and dad went of to China to see what medicines were available over there and they came back with packages of herbs and other things. Myself and girlfriend (now wife )at the time also made the trip over to China to a small city on the outskirts (without really being able to speak Mandarin) to pick of a package of herbs in 2004 which was quite an adventure, however through limited used of English, the Dr at the hospital that we went to actually said that the Western drug was actually in his opinion much better and well sought after in China (it was quite expensive over there) and said he was surprised that we came all this way to get the herbs. After this trip we never went back.

    We continued in the UK with trips from Bath to London to see Prof, Chris Shaw (neurologist) and his team until dad felt the journey was uncomfortable. Through that time, a nurse was also sent down from London in order to take blood from our family members, aunties, uncles, cousins to see if dna analysis of our familial form would help to further the research and hopefully it made a difference.

    In 2011 me and my now wife went to see Prof Shaw and he was able to offer a blood test to detect the familial MND that was inherent in our family with the hope that if it was positive that we could do positive things to stop MND at my generation in our family. We were told that IVF could be possible in order to make sure that our future children would be MND free.

    The test results came back and I was so relieved and in March the next year we found that were were going to be having a baby girl who would also be MND free we showed the scans to my parents and they were so excited to become grandparents

    A month later I was called to come back from London to Bath with my wife as mum wasn't well but once we got to the hospital we found that she had actually had a brain aneurism and it caused severe irreversible brain damage. My dad was completely devastated that day... as were all of us... I gave up work, and moved back to Bath to become the principle carer for dad. It was one of the toughest things to do and cope with, my wife while still pregnant was still working in London and made regular weekend trips down to Bath.

    It transpires now that on my mum's side of the family, we have a history of aneurysms. Anyways... it was tough work caring for dad, especially the period after mum's passing. She was the only reason that he kept going in the hope of a future treatment. They had done their research with Dignitas but she was always adamant that dad would not go down that route. With mum gone, we had to continue with the fight with him about it. In a way it was easier now for him to go and give up. A few days later he made the determined decision to keep fighting, for the sake of his future grand daughter and he did

    The 12 months around that time was some of the most terrible but also important times for me as my father son. I got to become much closer to him than I ever was. I cherished those moments, stories and conversations. My dad is the one person I looked up to the most.

    Our daughter was born on the 5th November to fireworks It was a home birth and within minutes of her being born, I was able to take her to see dad. We named her Emily after the English name that my mum chose for herself for her high school English class. She brought joy back into dad's life again and with help from family we did manage to share many precious memories and times together but nothing was quite the same without mum around.

    Just before Emily's first birthday, dad asked to speak to me. He had decided that it was his time to go. I always felt selfish about wanting my dad to stick around. He was always sure that the reason he wanted to stay until Emily was born was so that Sami (my wife) would not be so sad as to lose both in laws so close esp while being pregnant for the safety of the baby.

    My dad had fought MND for 11 years... there were tough times and good times. Mum and dad were able to see me and my wife get married dad had met his grand daughter all whilst having MND.

    If he had stuck around for a few more months he would have seen the Ice Bucket Challenge as well and been amused and amazed by the support.

    On his passing, he donated this brain and spine to help further research as well as donated skin samples which Prof Chris Shaw said would be cloned by the same team who created Dolly the Sheep in order to be replicated and sent around the world so that lots of different treatments and experiments could be carried out on the cloned cells in the hope of finding new treatments, drugs or even a cure for MND.

    I hope that one day soon we will find a cure... for our family it has been 50% who have inherited MND. My granddad, eldest auntie, eldest uncle and dad all had it. I have been given the all clear but I am worried for my younger brother...

    This message has been a lot longer than I thought it would be, I guess I couldn't stop writing after I started and I hope I haven't upset anyone through me recounting my experience.

    Apologies for it being a bit long...

    Wishing you all the best


  2. #2
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Well wrote Richie;

    What a journey and sorry to hear that it is the inherited type. When you are desperate you do desperate things. I know others that have it in the family and find it hard to digest.

    Love 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.

  3. #3
    Thank you for your story and for your bravery with tissue donations on your father's passing . You never know there may have been some sort of breakthrough as a result of that decision so thank you. I wish you and your little family the very best for the future and let's hope that this horrible condition never pops up again in your family. God bless you

  4. #4
    Forum Member
    Join Date
    Dec 2013

    Thanks for your moving account. may I ask; what were their ages when the disease struck? Even in families the age of onset is so variable. It is an important research question; why is it some family members with the gene are asymptomatic right into their late 70s and early 80s and others in the family manifest the disease early. if they could identify some of the co-morbid and/or protective factors it would be a massive advance. basically I suggest it is less damaging and tragic to become symptomatic at 78 than 48 . There must be a reason for the variability of onset. I cannot believe it is purely random. There must be some biological and/or lifestyle reason that causes early as opposed to late triggering. If the disease cant be prevented then knowing what protects from early age onset would be a massive research advance.

    Any thoughts on the within-family variability of onset welcomed from the Forumites.


  5. #5
    Quote Originally Posted by Terry View Post
    Well wrote Richie;

    What a journey and sorry to hear that it is the inherited type. When you are desperate you do desperate things. I know others that have it in the family and find it hard to digest.

    Love Terry
    Thanks Terry. We're in all in a better place at the moment. One of the things that dad said with my mum's passing as that he's thankful in a way that he didn't have to leave her behind after he left, but was so heart broken because of it. Rough time and rough times to come with extended family. There is hope though

  6. #6
    Thank you Kernowcluck,

    The donation thing was something that dad was always wanting to help with as he was always thinking of the younger generation in the hope that anything that he could contribute to finding treatments, understanding or a cure, he would do. He was always philosophical about how things were and a very strong character.

    His final days were very tough for closest family as he knew he wanted to go and used the DNR to his wishes. As he depended on a ventilator 24/7 for the last few years, he wanted for his ventilator to be taken away and for nature to go it's course. He went in a peaceful way surrounded by loved ones and we were all blessed enough to be able to say our goodbyes...

    I wish I had that chance with my mum too.. I miss them both greatly

  7. #7
    Hi Charles,

    My granddad was around 55, eldest uncle around 56, auntie 59, dad started noticing symptoms around 52 but he was on the look out for it. It took around and a half for diagnosis though.

    My dad had a 'wild' theory that it was gas related (cooker gas) as my uncle, auntie and him all worked in a takeaway cooking (with gas) for most of their adult lives. We ended up changing to electrical induction when he suspected this in the family home. He might have just wanted for us to get a new induction hob though (or he could be right!)

    I don't know if it makes a difference but due to dad's diligence and awareness of the possibility of MND, he was able to start taking Riluzole very early on. After official diagnosis (2003) he wasn't in a wheel chair till the start of 2006, he started depending on a ventilator around 2011 and stayed with us till 2013. In comparison both my auntie, uncle and granddad all never took Riluzole and passed within 2 years of showing symptoms. Obviously the sample size is pretty small.

    I sometimes wish that I could have been even more selfish and asked that dad could hang on for longer, there was more things that he could have looked forward to and perhaps those things could have given him a little joy whilst hopefully waiting for more treatments or a cure. The loss of mum was just too much for him to cope with no matter the other bits of joy (Emily) who was stepping into his life. No matter how tough it was mum was the biggest reason that he had stayed around for as long as he did...

    I now have cousins who are reaching the age where our family seem to start showing symptoms, so we are pretty much on high alert. I think that there are 19 of us in our generation of which 9 have a parent who has had MND. They say statistically for familial, it is around 50% hopefully it's not the case but for my dad's generation it has been pretty much that figure.

    Fingers crossed for more progress and understanding


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