Ed is a strong man and extremely tough. How laid back he is here speaking about something so horrible and personal. I wish him all the best, may he get through this battle. There has to be something done to make rugby safer as there is a connection with MND and the impact of rugby, its a tough sport for really tough men.
My Dad has recently been diagnosed with MND. Words can’t describe how devastated I am. But listening to you has reminded me that staying positive is the most powerful thing you can do. Best of luck mate and best wishes
Can’t even imagine how you feel man I wish the absolute best for him, you and your family. Just want to send positive energy to you and him no one deserves to go through this I’m sure he is a great man with a wonderful family. God bless you and your family from the bottom of my heart and please try your best to be positive and appreciate every moment and live life to the fullest with your family. At the end of the day that’s all that matters. Really wish the best for you man reading your comment broke my heart.
Thanks for telling us your story Ed, honestly mine was almost identical, ex rugby player, same age, same symptoms, similar testing (allot of different specialists) same time frame. I failed all of the tests, had allot of atrophy in my hands, then had a lumber puncher done (horrible) time went on and I was sent to another neurologist for another opinion I was extremely lucky in that I didn't actually have MND, I just have severe cupel and carpal tunnel on both sides. I'm feeling for you my man, keep positive and do what you can now. I went full throttle on living when I first was told ive likely got it
I’m going through the diagnosis myself as a previously sporty bloke in my late 40s. Atrophy in right hand and very weak pincer grip along with big reflexes and also fasciculations in my calves. Neurologist says it’s likely MND but they have to see some progression first to get a formal diagnosis. I also want to go full throttle on living but I’m waiting for that diagnosis as I don’t want to get in to more debt etc if it turns out to be nothing. In the head burying in sand stage I suppose Great yours has turned out to be carpel tunnel as that’s treatable. They said I don’t have that as I don’t have any sensation changes in the hand. Anyway, What an intelligent, cool and rationale guy he is. Hadn’t heard of him before tbh. And I’m going round checking my grip every day too lol. It’s all very relatable
@@hmq9052 It's not just Rugby players bro... it can come to anyone at any age. Lost my dad a couple of years ago with it... never touched a rugby ball in his life. For me, it's the worst debilitating thing you can ever get. It's cruel. If you get cancer you have a chance... not with this at the moment. Thoughts and love sent to anyone who has this or any friends or family with it. Let's hope they find a cure for this sharpish.
Ed, you are great speaker .I’m sorry you have been diagnosed with MND .My mother had the same . If you want to do a sponsored walk. Let me know. A Gloucester supporter.
Im 33 as well. haven't been diagnosed yet, had blood test done, and all came back good. Booked in for an mri next friday on my head and back. I know deep down i dont have much time left. Every day gets harder and harder, day by day i feel my self getting weaker. I find my self loosing balance and tripping over at work im struggling to climb up and down the ladders. Muscle's shrinking, constant twitched though my body. Its going to be a horrible way to go with our brain still working but the body shutting off i just think thank god its me an not any of my friends or family. Im not so worried for myself but more so that my 5 year old daughter will grow up thinking "wish my dad was still alive" its that thought that really nocks me about. Been lucky enough to raise her by myself the past 4 years just hope i get to see her first day of school. Its sad there's no cure yet. Good luck brother
Really sad to hear your story. I'm 40 and have a follow up with the neurologist tomorrow afternoon. I've had injuries in my shoulders and neck and have one nerve compression in my neck. However, the neurologist has said it's unlikely to explain the full range of symptoms. I'm fearing and expecting the worst tomorrow and like you, I worry for my child. His 7th birthday is in 8 days and I hate the thought of not seeing him reach adulthood. It has been known for people to live decades with it, so I pray you'll get to witness some great milestones in your daughter's life and make some great memories with her.
Brilliant video... spoken so well... total respect to you... dad had this horrible disease and I never knew what it was when I was with him when he was diagnosed after all those tests... until I got home and googled it. We're all with you on this.... they will find a cure for this or find something to halt it. Thoughts are with you friend... take it on... give it the two fingers and keep going. Hopefully a cure is just around the corner.....
Thanks for your video. It's really helping me. My husband is in the process of potentially being diagnosed with MND, currently he's only at the MRI stage
I have BF and had it 34 years I was so worried when my muscles all over body started twitching and Doctors didn't take me seriously as I was 27 at time. Thank god it was just FB I still twitch everyday but I ignore it. So sorry for this man and he is so young.
Not sure if this has been discussed, but how much is head contact, concussion, CTE etc, ie being a forward, being investigated as a risk factor for MND?
Prayers go out to you. My brother had it, and amazingly, he was able to talk well to the very end. Talk to Jesus. He really does listen to you. He did me, and healed me from needing a heart transplant, to healing my own heart.
I am in this place right now with identical symptoms going through identical testing It’s hell pure hell mine has been going on for 3 months and is getting worse
Be strong young man… that’s is the monster disease ever my heart is broken for your illness worst ever in this planet my dear husband had the same and up to today I can’t recover
I'm just a nobody whose been researching MND in the hope of helping a loved one. If someone is reading this who works in medical research could maybe consider if fertilizer like blue green algae ( sold on Amazon) plays a role as a neuron toxin. This lovely tough young fella might have come into contact through injury.
I unfortunately been diagnosed with a motor neuron disease 2 years ago. It s hard as hell. The major area which get affected are the lower limbs, achille s tendons, shoulders and neck pain. I wish you all the best.
@@mriyke4719 First of all thanks for asking. It s a struggle due to the facts that I found a balance with a pure and really limited diet and my social life collapsed. My health is great but emotionally I am not perfect. How are you brother ?
@@iykegideon8199 It depend, as we ll know everyone has a different side effects. I Just hope that you have been followed properly. Breathing issue can be a part of an allergy reaction, keep it in mind. 🤗
What a brave man, balanced and realistic about his disease, but just getting on with his life. Total respect to him for talking about it! No prayers, Jesus or herbs, just realism.
I hate to think the amount of times i got head knocks in 16 years of playing rugby. I never got comcussed or at least I didn't think i did. Still, i was groggy many times.
A truly inspirational message from Eddie who sadly hit rock bottom. And he is well and truly loving the AA, meetings and helping others to understand there addiction then talking to them how they can get sober. And still go to AA meetings
There is a protocol that has slowed down ALS called the Diana protocol- there has been research articles and studies done- perhaps Ed can benefit- good luck and many prayers of hope to you Ed- 🙏🙏🙏❤️
From my research there are some indications that high physical activity, as well as head injuries are linked to MND. There is still no one cause identified, it’s a horrible and complex disease
I’ve had muscle twitching for about a year all over legs calf’s quads hand lip face arms there random but last in my calf’s longest I went to see a neuro and he said cramp benign faciculation syndrome. Still fear mnd to this day. But any twitches out there listen to ed he was twitching in one area and got weaker in that area random twitches arnt mnd you might twitch in leg hand shoulder all in one day. I don’t have any weakness 1 year in
Exactly my fear but he says constant 24/7… in his arm … people with benign twitching is usually all over body where Ed was localised in the area that got weaker and spread through his body.. twitching before weakness is rare … 1 in 300 mnd chance 4 percent of cases of that then reported twitching before clinical weakness which chances stupidly decrease with them odds. Which is why everybody who has twitching fear this devastating disease. But also after twitching 2 months he noticed weakness in his wrist… I’ve been twitching 2 years with no weakness and had clean emg I Deffinatly don’t have mnd.. but it still scares me and fall into the rabbit hole every now and then… must be a link with rugby players maybe head impact injury’s I don’t no…. They say with in next years they will be a cure for mnd but I hope it comes sooner as I no so much about this disease it is the most devastating disease in the world and Ed I follow your story’s and have seen how it takes u from day to day from this video to your last one you did 1 year apart how quickly it can rip you of independence. Stay strong and for you fellow twitchers out there who watch these videos you probably don’t have mnd
What a wonderfully articulate and honest man. Never heard of him before. Well impressed.
Ed is a strong man and extremely tough. How laid back he is here speaking about something so horrible and personal. I wish him all the best, may he get through this battle. There has to be something done to make rugby safer as there is a connection with MND and the impact of rugby, its a tough sport for really tough men.
My Dad has recently been diagnosed with MND. Words can’t describe how devastated I am. But listening to you has reminded me that staying positive is the most powerful thing you can do. Best of luck mate and best wishes
Can’t even imagine how you feel man I wish the absolute best for him, you and your family. Just want to send positive energy to you and him no one deserves to go through this I’m sure he is a great man with a wonderful family. God bless you and your family from the bottom of my heart and please try your best to be positive and appreciate every moment and live life to the fullest with your family. At the end of the day that’s all that matters. Really wish the best for you man reading your comment broke my heart.
feel so sad for your dad.....horrible disease....hope 1 day they can find a cure
search for Mark Manchester
Thanks for telling us your story Ed, honestly mine was almost identical, ex rugby player, same age, same symptoms, similar testing (allot of different specialists) same time frame. I failed all of the tests, had allot of atrophy in my hands, then had a lumber puncher done (horrible) time went on and I was sent to another neurologist for another opinion I was extremely lucky in that I didn't actually have MND, I just have severe cupel and carpal tunnel on both sides. I'm feeling for you my man, keep positive and do what you can now. I went full throttle on living when I first was told ive likely got it
Why are rugby players getting it though?
I’m going through the diagnosis myself as a previously sporty bloke in my late 40s. Atrophy in right hand and very weak pincer grip along with big reflexes and also fasciculations in my calves.
Neurologist says it’s likely MND but they have to see some progression first to get a formal diagnosis.
I also want to go full throttle on living but I’m waiting for that diagnosis as I don’t want to get in to more debt etc if it turns out to be nothing. In the head burying in sand stage I suppose
Great yours has turned out to be carpel tunnel as that’s treatable. They said I don’t have that as I don’t have any sensation changes in the hand.
Anyway, What an intelligent, cool and rationale guy he is. Hadn’t heard of him before tbh. And I’m going round checking my grip every day too lol. It’s all very relatable
@@isyt1 Hope you're ok bro...
@@hmq9052 It's not just Rugby players bro... it can come to anyone at any age. Lost my dad a couple of years ago with it... never touched a rugby ball in his life. For me, it's the worst debilitating thing you can ever get. It's cruel. If you get cancer you have a chance... not with this at the moment. Thoughts and love sent to anyone who has this or any friends or family with it. Let's hope they find a cure for this sharpish.
It tends to afflict athletic people more than others. Not much more. But there is a higher incidence.
Hey Ed never heard of you before this interview..
Ive got you my prayers .. healing n peace n wisdom mate
Ps 23..
Stay strong Ed. Thank you for letting us into your journey!
Brave lad, quality player.
Ed, you are great speaker .I’m sorry you have been diagnosed with MND .My mother had the same . If you want to do a sponsored walk. Let me know. A Gloucester supporter.
All of the best to you my friend. You are an inspiration to the world. Greetings from South Africa 🇿🇦
Heartbreaking. It must be horrific when you are told it is MND. God bless.
Stay strong and Stay positive mate. Best wishes!
Im 33 as well. haven't been diagnosed yet, had blood test done, and all came back good. Booked in for an mri next friday on my head and back. I know deep down i dont have much time left. Every day gets harder and harder, day by day i feel my self getting weaker. I find my self loosing balance and tripping over at work im struggling to climb up and down the ladders. Muscle's shrinking, constant twitched though my body. Its going to be a horrible way to go with our brain still working but the body shutting off i just think thank god its me an not any of my friends or family. Im not so worried for myself but more so that my 5 year old daughter will grow up thinking "wish my dad was still alive" its that thought that really nocks me about. Been lucky enough to raise her by myself the past 4 years just hope i get to see her first day of school. Its sad there's no cure yet. Good luck brother
Praying for you 🙏🏾❤
Really sad to hear your story. I'm 40 and have a follow up with the neurologist tomorrow afternoon. I've had injuries in my shoulders and neck and have one nerve compression in my neck. However, the neurologist has said it's unlikely to explain the full range of symptoms. I'm fearing and expecting the worst tomorrow and like you, I worry for my child. His 7th birthday is in 8 days and I hate the thought of not seeing him reach adulthood. It has been known for people to live decades with it, so I pray you'll get to witness some great milestones in your daughter's life and make some great memories with her.
Kudos to Jim for a brilliant interview. 3 mates having a good laugh but a super serious part handled with love, honesty and caring.
Very best wishes Ed.
Brilliant video... spoken so well... total respect to you... dad had this horrible disease and I never knew what it was when I was with him when he was diagnosed after all those tests... until I got home and googled it. We're all with you on this.... they will find a cure for this or find something to halt it.
Thoughts are with you friend... take it on... give it the two fingers and keep going. Hopefully a cure is just around the corner.....
Thanks for your video. It's really helping me. My husband is in the process of potentially being diagnosed with MND, currently he's only at the MRI stage
Same, that’s where I am. How’s he getting on?
I have BF and had it 34 years I was so worried when my muscles all over body started twitching and Doctors didn't take me seriously as I was 27 at time. Thank god it was just FB I still twitch everyday but I ignore it. So sorry for this man and he is so young.
Great interview. The host was good, let him talk uninterrupted.
Not sure if this has been discussed, but how much is head contact, concussion, CTE etc, ie being a forward, being investigated as a risk factor for MND?
❤ he is doing so well for him safe I am so proud of him😊
There is any cure for mnd Or als
Brave lad thank you for sharing
Prayers go out to you. My brother had it, and amazingly, he was able to talk well to the very end. Talk to Jesus. He really does listen to you. He did me, and healed me from needing a heart transplant, to healing my own heart.
Great interview Ed - Your story is almost exactly what most MND patients go through. This is a devastating disease. Stay strong.
Best wishes Ed. Fight on mate.
I'm sorry to hear, nd sorry ur going through it.
All the BEST ED. 🙏🙏
Stay strong brother
My sister has it, what a change within a year, hence seeing this video just to get as much info as possible.
My brother got the diagnosis last week he has MND. I am devastated…
I am in this place right now with identical symptoms going through identical testing
It’s hell pure hell mine has been going on for 3 months and is getting worse
Thank you Ed for sharing stay strong man 💪
Be strong young man… that’s is the monster disease ever my heart is broken for your illness worst ever in this planet my dear husband had the same and up to today I can’t recover
thats a strong human being
I'm just a nobody whose been researching MND in the hope of helping a loved one. If someone is reading this who works in medical research could maybe consider if fertilizer like blue green algae ( sold on Amazon) plays a role as a neuron toxin. This lovely tough young fella might have come into contact through injury.
how can i connect with you ? any insta / twitter or mail ?
Best wishes Ed
God bless you & keep your courage & strenght Ed, Such bravery, makes you ashamed for stupid moanimg ,XXXX
Brother, love you. I pray for you and I hope you are loved to the end. I cannot imagine.
I unfortunately been diagnosed with a motor neuron disease 2 years ago.
It s hard as hell.
The major area which get affected are the lower limbs, achille s tendons, shoulders and neck pain.
I wish you all the best.
How are you now
@@mriyke4719 First of all thanks for asking. It s a struggle due to the facts that I found a balance with a pure and really limited diet and my social life collapsed. My health is great but emotionally I am not perfect. How are you brother ?
I won't say I'm fine I have heard the symptoms for five years now but I have not been diagnosed breathing problems has been issue to me
@@iykegideon8199 It depend, as we ll know everyone has a different side effects. I Just hope that you have been followed properly.
Breathing issue can be a part of an allergy reaction, keep it in mind. 🤗
What a brave man, balanced and realistic about his disease, but just getting on with his life. Total respect to him for talking about it! No prayers, Jesus or herbs, just realism.
I hate to think the amount of times i got head knocks in 16 years of playing rugby. I never got comcussed or at least I didn't think i did. Still, i was groggy many times.
All the best Ed 🙏
A truly inspirational message from Eddie who sadly hit rock bottom. And he is well and truly loving the AA, meetings and helping others to understand there addiction then talking to them how they can get sober. And still go to AA meetings
Love ❤️ ed 🙏
❤ ed slater
There is a protocol that has slowed down ALS called the Diana protocol- there has been research articles and studies done- perhaps Ed can benefit- good luck and many prayers of hope to you Ed- 🙏🙏🙏❤️
I lost my father to MND in 2015
Good looking man.
"Going forward" one of those current buzzwords thay annoy tf outtov me.
Experts always tell us that muscle weakness is always the first symptom, but we again see that many times it is muscle fasciculations that show first.
A fair amount of Rugby and NFL players getting ALS. Not sure if theres a link with heavy impact sports.
From my research there are some indications that high physical activity, as well as head injuries are linked to MND. There is still no one cause identified, it’s a horrible and complex disease
Twitching (even the 24/7 ones) as the first symptom of an MND is very rare
God love you 😍
How many guys need to get MND to ban contact outside of games
I’ve had muscle twitching for about a year all over legs calf’s quads hand lip face arms there random but last in my calf’s longest I went to see a neuro and he said cramp benign faciculation syndrome. Still fear mnd to this day. But any twitches out there listen to ed he was twitching in one area and got weaker in that area random twitches arnt mnd you might twitch in leg hand shoulder all in one day. I don’t have any weakness 1 year in
If you don’t have any weaknesses it isn’t MND
But he had twitching before weakness …. Explain that one
Exactly my fear but he says constant 24/7… in his arm … people with benign twitching is usually all over body where Ed was localised in the area that got weaker and spread through his body.. twitching before weakness is rare … 1 in 300 mnd chance 4 percent of cases of that then reported twitching before clinical weakness which chances stupidly decrease with them odds. Which is why everybody who has twitching fear this devastating disease. But also after twitching 2 months he noticed weakness in his wrist… I’ve been twitching 2 years with no weakness and had clean emg I Deffinatly don’t have mnd.. but it still scares me and fall into the rabbit hole every now and then… must be a link with rugby players maybe head impact injury’s I don’t no…. They say with in next years they will be a cure for mnd but I hope it comes sooner as I no so much about this disease it is the most devastating disease in the world and Ed I follow your story’s and have seen how it takes u from day to day from this video to your last one you did 1 year apart how quickly it can rip you of independence. Stay strong and for you fellow twitchers out there who watch these videos you probably don’t have mnd
He did in his wrist as he explained
I feel very sad about rob burrows and everyone else that has mnd
🙏🏾🙏🏾🙏🏾🙏🏾🙏🏾🙏🏾
💙💙💙💕
Joost van der Westhuizen had this didn't he ?
Yes
so sad....he was a great player
Yes Joost had MND.
Investigou doença de Lyme?
Always sportsmen...
Probably mercury toxicity
Such a terrible shame 🙁
Sorry
Sounds like Parkinsons
Parkinson's you can live for years. Most with MND only live 2-5 max.
@@aliciajeanguenat2139 thats awful...hope they can find a cure
@joshr920 yes it is. Most live a lot longer than mnd.
@@joshr92010 to 20 plus years Parkinsons. My grandmother had it.
Get to the point mate