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    Hello everyone

    I just wanted to say Hi and a little bit of background from me - who I am and why am I here ?

    I am in my mid 50s and married. We don't have any children but we have dogs instead.

    8 dogs!!!

    Yes, I know.

    And they are spaniels as well. Yes, that equals a very busy life.

    These are my wife's interest - she loves dogs, working them, training them and being a dig groomer as a profession, this is her forté.

    I would have been happy with just 4. But she wins out there.

    I don't have any immediate family member or very close friend who has MND. I am learning though and the reason I am learning is because of my experience explained below.

    As with many people, my 1st awareness (prime awareness) of MND links to Stephen Hawkins because of his fame and also his illness. I do recall a neighbour of my parents also suffering the illness some 10 years ago. But she was just that - a neighbour of my parents in their village. Not someone close to me. That is about the contact I have with this and you could summarise that is not a great deal of contact. Also, ashamedly, until last year, my knowledge of the illness was as poor as my close contact.

    I guess what I am poorly articulating is that MND probably bypasses a lot of people because of the scarcity and is unlike more predominant cancer, cardiac diseases and others illnesses that also have impact, but importantly, they also have treatment and for some of them, there is good prognosis. I am learning that this is far from the case with MND.

    That was until late 2021.

    Something late last year brought me very close to what this illness is and this is where my ignorance turned to intrigue to research a little more. I am still not that knowledgeable now and still learning. But at least I can come on here with less ignorance than 6 months ago, when I wouldn't really have known that much.

    I was having some work completed on my vehicle. The garage owner is someone who I know reasonably well. But not that well to know personal detail. I was wanting to pay him for the sale of some vehicle parts he personally was disposing of and for the fix on my vehicle, when he said he didn't want paying directly. Could I please donate to the MNDA fund in lieu of paying him. Anyway, after some argument that I could do both, he won out and I ended up donating to MNDA.

    The background is that his apprentice at his garage lost her partner to MND in June 2021. As the story unfolded, I realised this severity - not just to this person, but to a good number of people in the UK. My eyes were being opened to something that is rarely highlighted or broadcasted. We seem to know people who are suffering / have suffered from other forms of nasty illness. MND is not on the radar of many, it appears to me, and certainly was not on mine. Naiivety, ignorance, lack of awareness, perhaps a rarer illness - probably all of these are a reason for the poor general knowledge of it.

    Specifically though, my reason for being disturbed - the lad who passed on was only 23yrs old. He has left behind Phoebe, his widow at 22 yrs old, and 2 very young children without a Dad. They will never know their father, being too young to remember.

    Many people here have an impactful experience for sure. The experience I am unfolding here is no more significant and please don't take it that way. It's just that it is an experience that personally hit me a little too hard too. Just the realisation of all of the future plans ahead of them, being in their early 20s, completely wiped away and 2 children less than 3yrs old without a father, lost to an illness called MND. This was a family who I didn't know. It was the enormity of this whole situation that overwhelmed me somewhat.

    Further, I went to make my donation to MNDA, as requested, and was opened up to donations to date leading to (what I would perceive as) a very large fund raising to MNDA by family and friends. This was not something I have witnessed before and led to further intrigue. The value is unimportant - the sentiments and comments on the donation pages were quite profound. This was clearly a very popular young man who had touched a lot of people's lives in his short years and there were 100s, maybe nearly 1000 stories and sentiments about him.

    This hit me because I needed to learn what actually is MND ? Why is someone so young not making their 25th birthday ? Who becomes ill ? He was also a very fit guy with a very physical job, but that didn't seem to count. Why is prognosis so poor ?

    I spoke to 2 friends about this and they were equally as naiive as me but they soon became a sponge for information like me. That is when we decided we need to do something to assist the funding of the research into this illness. I'll post up more on that and what we are doing in the next days or so.

    The prime aim today was to say Hi and also who I am, what has driven me towards here.

    Thank you for allowing me on here.

    Oh daren what a beautiful post. Thank you so much for what you have and will do. Its lovely to hear from you.

    You brought tears to my eyes and left me stuck for words.

    Again thank you so much.
    denise xxx

    when i can think of something profound i will update this.


      Hi Denise - bless you and thank you for your kind words.

      I am not really one for sad emotion. Glass half full, there is always a way out, positive side are generally my motos.

      The experience above did shake me. The severity and, really, the lack of knowledge. Why is this illness not so well known by me ? I just hope that through the event we are doing, you have another supporter here spreading the word.

      I have now been introduced to and got to know the immediate family better since we said we would do something for the awareness and organise a fund raiser for the Association. The immediate family have been working tirelessly to spread the word on the illness and have regular fund raising events - they have been doing unbelievable things.

      This is like many of you here - I am sure. These events bring the awareness primarily, but also the donations help with the research into the illness.

      As said above, MND is not close to me or my friends or family. But one thing I can empathise - my wife had breast cancer at the age of 47. The aggressive genetic BRCA version that hits women of a younger age and is not good. I know personally how hard it is to come to terms with a situation that is presented before us, what does the future bring, what are now the new plans, where is this rollercoaster called life taking us. She was quite ill with the treatment and I became a part time carer for a period of time. My wife has had no recurrence, thankfully, but lives each day as if it might be her last day of being all clear. She is extremely positive but the monkey is always on her back. I can share no more personal experience with you all other than that.


        Hello Daren, and welcome.
        I too was moved by your post, and touched to hear about your interest and concerns about MND. I have the bulbar onset type which is progressing quite rapidly, but MND comes with various presentations, none of which are properly understood.
        please accept my personal gratitude for your interest and concerns.
        love , Lizzie.


          Welcome to the friendliness place you can find anywhere
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


            Thank you for your welcoming, Lizzie & Matthew.

            I knew that I would learn more when I arrived here and Lizzie, you mentioned the various presentations. I did wonder, but really I am still learning the information at the moment.

            Matthew - I like your positive bottom punchline - stay strong and still mobile & undefeated!! Good on you!!


              Daren The main MNDA website has tons of good info about MND which you should find helpful, including this page About MND
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


                A lovely post, how sad to lose such a young man. I lost my Husband Mick to MND 3/7/19, we didn't even get a year after he was diagnosed. So many people still haven't heard of MND, it's a cruel disease. Myself and my girls have raised probably over 3k since Mick died. I pray for a cure one day


                  Thank you Ellie & Shrew.

                  Ellie - I'll take a look at what you have recommended there. Thank you for the guidance. There is never enough that someone knows with these things and there is always something more to learn, I am sure.

                  Shrew - I am so sorry that you lost your partner in 2019. I guess a lot of questions were asked back then and they are still be asked now - why him ? This is a tragic loss which is upsetting.