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.
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.
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