Jason Bowen MND diagnosis and me

I have just read the article on the BBC news site about Jason Bowen and his Motor Neurone Disease (MND) diagnosis and this feels very close to home.

https://www.bbc.co.uk/news/uk-wales-64823856

In early September I noticed a slight limp on my left leg. Prior to this I have been experiencing unusual muscle cramping, stiffness and twitching in both legs. Within a week I noticed that the movement in my toes in my left foot was severely reduced and my left ankle had lost 50% of its normal movement. I went to my GP who told me it was probably due to a spinal disc injury that I have had for 20 years. I was unconvinced because it did not follow the pattern of previous episodes of a flare up of this condition and I was not experiencing any sciatic pain in this leg, which I get very severely when I have a flare up. The GP also noted that I had lost muscle mass in my left calf, which has not occurred before.

In December I had an MRI scan on my lower spine which showed some inflammation in one of my lower spinal discs. My GP referred me to an orthopaedic consultant for further investigation.

Whilst waiting for this appointment my left leg has furthered deteriorated. I no longer have any motor control over my left foot and ankle, and my left knee started to have reduced motor control. I can no longer walk more than 50m without experiencing severe pain in both hips, and lower back due to my walking pattern. When I go to the shops I have to use a shopping trolley as a walking aid and I now use a walking stick. My balance is awful, if I stand up straight and close my eyes I start to wobble after 15 seconds and I would fall over if I continued. I have to hold on to a rail with both hands when going up steps. In the morning when I get up both legs feel very stiff and I have to walk (with difficulty) straight legged. I know my body and my legs feel almost alien to me at times.

This week I had my orthopaedic appointment. My consultant reported that the swelling in my spinal disc was not as severe as seen on previous MRI scans and the loss of motor control in my left leg does not match the effects that spinal compression would have on this leg if was due to a disc prolapse in my lower spine. He has now referred me for an MRI on my upper spine to rule out issue there, but I have not had issues with my upper spine. If that is clear I will be referred to a neurologist. I mentioned my concerns about a possible neuro-degenderative condition (MND is one form) and he responded that I should consider that as a possibility.

In 6 months I have gone from being able to cycle 40 miles a week to not being able to walk further than 100m very slowly. This occurred within 4 weeks of taking early retirement in September at the age of 58, which has really pissed me off. I don’t know why I'm writing this for total strangers, maybe I'm just getting it off my chest

I am really sorry to hear about your sudden ill health.

I have no practical advice or experience to offer, but I appreciate you sharing your troubles. This board is a community that has always been supportive when one of our own needs it, and hopefully there are others who will be able to respond in a more useful way.

Stay strong. Hopefully you will get some better news soon.

Sometimes it’s good to get things off your chest mate
By the sounds of things you’ve been struggling with back problems since your mid thirties which is debilitating enough without your new problems.
I’m fifty four and the only advice I can give is be positive and live each day as if it’s your last with no regrets.
Get some cannabis and bake a cake
Do something impulsive
Write a bucket list and stick to it
The bottom line realistically we’ve got a good ten years left at our age
Anything else is a bonus 🥳👍

Easy for me to say because I know what I’d be like if it was happening to me, but your consultant only talked of the possibility of a neuro degenerative condition and the impression I’ve got through personal experience and from what friends and family have been told is that, unless a particular condition has been definitely excluded by the relevant test, the medical profession rule nothing out.

Quote:

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Originally Posted by Sunnysideup

Sometimes it’s good to get things off your chest mate
By the sounds of things you’ve been struggling with back problems since your mid thirties which is debilitating enough without your new problems.
I’m fifty four and the only advice I can give is be positive and live each day as if it’s your last with no regrets.
Get some cannabis and bake a cake
Do something impulsive
Write a bucket list and stick to it
The bottom line realistically we’ve got a good ten years left at our age
Anything else is a bonus 🥳👍

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You are correct, I have had spinal disc issues for 25 years due to my previous job as a paramedic. In 2008 (started 1 week after the FA Cup Final) I was off work for 11 months due to severe lower back and sciatic pain. That is why I did not think this issue was due to my spine as it is totally different to the issues I had in 2008.

I have been taking cannabis since then as I found it was better than pain killers. I stopped smoking 6 years ago, so since then I take it using a dry herb vaporiser. I only take in the evening but it does help.

I am trying to stay upbeat and I intend to make the best of my time if it is the worst case scenario. I am feeling OK most of the time but it has got to me sometimes when I lie awake in bed in the early hours, but every thing feels worse at that time of day.

If it the worst case I am happy that I have left my wife in a good position. My mortgage has been paid off, I have put a large amount of money away and she will have access to my NHS and army pension.

Enjoying a Sauna is absolutely amazing
If you google the health benefits of a Sauna you’ll truly be amazed
I converted my garden shed while the Mrs was in Spain for a week with the girls
She got back and it was done lol
Easy enough to do
YouTube tutorials are a godsend
My only mistake was I had to have a separate electric feed
I wasn’t able to plug a 9kw electric heater into an existing spur
All the bits you need -Hygrometer-sand timer - wooden door latch - wooden towel rack- wooden bucket and ladle as well as the heater can be found on Amazon -I laid
Cotswold stone floor slabs and built my own split level benches
I’m healthy but I do suffer with mental health issues after years of historical sexual abuse
I needed something to focus on and this self build was it mate
Didn’t cost a fortune and it’s surprising how many mates you get wanting a blast with a few ice cold beers
I even had the old bill around lol but that was after a helicopter 🚁 had spotted the off the chart heatsource
That’s another story tho 😆😂😂😂😂

Quote:

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Originally Posted by the other bob wilson

Easy for me to say because I know what I’d be like if it was happening to me, but your consultant only talked of the possibility of a neuro degenerative condition and the impression I’ve got through personal experience and from what friends and family have been told is that, unless a particular condition has been definitely excluded by the relevant test, the medical profession rule nothing out.

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As a paramedic I used to say that to my patients. In my case the loss of of motor control that I am experiencing can be caused by 2 types of situations.

The first being a mechanical cause. For example severe nerve compression within the spine, lesions within the spinal cord or severing of the spinal cord. These issue has been ruled out in my lower spine. A further scan on my upper spine could reveal a cause, but if this was the case I would be experiencing other issues including issues of bowel or bladder control, which is not the case. During my examination with the consultant all my reflexes in my arms and legs were normal. These reflexes are circuits within the spinal cord, not the brain. If was a spinal issue the reflexes would be affected.

The second cause would be due to issues affecting the generation or transmissions of signals within the brain. In the case of a neuro-degenerative disease the neurons in the motor control areas in the brain start to break down and the function of the area of the body that they control is permanently lost. The other cause of disruption to nerve impulse transmission in the brain would be due to a localised brain tumour. Either option is not good.

A neuro-degenerative disease is only diagnosed after ruling out all other causes. My consultant informed me that if my second MRI is clear, he would immediately refer me for a priority consultation with a neurologist. That is was has scared me. I only hope that I am a victim of the old saying 'a little knowledge is dangerous'.

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Originally Posted by 79blue

I have just read the article on the BBC news site about Jason Bowen and his Motor Neurone Disease (MND) diagnosis and this feels very close to home.

https://www.bbc.co.uk/news/uk-wales-64823856

In early September I noticed a slight limp on my left leg. Prior to this I have been experiencing unusual muscle cramping, stiffness and twitching in both legs. Within a week I noticed that the movement in my toes in my left foot was severely reduced and my left ankle had lost 50% of its normal movement. I went to my GP who told me it was probably due to a spinal disc injury that I have had for 20 years. I was unconvinced because it did not follow the pattern of previous episodes of a flare up of this condition and I was not experiencing any sciatic pain in this leg, which I get very severely when I have a flare up. The GP also noted that I had lost muscle mass in my left calf, which has not occurred before.

In December I had an MRI scan on my lower spine which showed some inflammation in one of my lower spinal discs. My GP referred me to an orthopaedic consultant for further investigation.

Whilst waiting for this appointment my left leg has furthered deteriorated. I no longer have any motor control over my left foot and ankle, and my left knee started to have reduced motor control. I can no longer walk more than 50m without experiencing severe pain in both hips, and lower back due to my walking pattern. When I go to the shops I have to use a shopping trolley as a walking aid and I now use a walking stick. My balance is awful, if I stand up straight and close my eyes I start to wobble after 15 seconds and I would fall over if I continued. I have to hold on to a rail with both hands when going up steps. In the morning when I get up both legs feel very stiff and I have to walk (with difficulty) straight legged. I know my body and my legs feel almost alien to me at times.

This week I had my orthopaedic appointment. My consultant reported that the swelling in my spinal disc was not as severe as seen on previous MRI scans and the loss of motor control in my left leg does not match the effects that spinal compression would have on this leg if was due to a disc prolapse in my lower spine. He has now referred me for an MRI on my upper spine to rule out issue there, but I have not had issues with my upper spine. If that is clear I will be referred to a neurologist. I mentioned my concerns about a possible neuro-degenderative condition (MND is one form) and he responded that I should consider that as a possibility.

In 6 months I have gone from being able to cycle 40 miles a week to not being able to walk further than 100m very slowly. This occurred within 4 weeks of taking early retirement in September at the age of 58, which has really pissed me off. I don’t know why I'm writing this for total strangers, maybe I'm just getting it off my chest

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That's a very powerful post

Take care

Quote:

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Originally Posted by Sunnysideup

Enjoying a Sauna is absolutely amazing
If you google the health benefits of a Sauna you’ll truly be amazed
I converted my garden shed while the Mrs was in Spain for a week with the girls
She got back and it was done lol
Easy enough to do
YouTube tutorials are a godsend
My only mistake was I had to have a separate electric feed
I wasn’t able to plug a 9kw electric heater into an existing spur
All the bits you need -Hygrometer-sand timer - wooden door latch - wooden towel rack- wooden bucket and ladle as well as the heater can be found on Amazon -I laid
Cotswold stone floor slabs and built my own split level benches
I’m healthy but I do suffer with mental health issues after years of historical sexual abuse
I needed something to focus on and this self build was it mate
Didn’t cost a fortune and it’s surprising how many mates you get wanting a blast with a few ice cold beers
I even had the old bill around lol but that was after a helicopter 🚁 had spotted the off the chart heatsource
That’s another story tho 😆😂😂😂😂

---

Yep they are always flying around here looking for heatsources

I always thought baco foil was the business !

Surely out in Cowbridge any helicopters would be from Everest?

Sorry to hear that 79blue, I've seen friends and family members health deteriorate quickly and it is very scary.. it's really difficult and scary not knowing exactly what's wrong and then when you do, it's the difficult period of getting the medication etc right... But am crossing everything for you that a proper diagnosis will result in the right medication and other support you need.

We can all be wankers on this board at times but the truth is, it's been a community for a long time and actually members have been through a lot together. Using the messageboard to express concerns or vent or get things off your chest, is fine.


Thinking of you and you're family.

Very best of luck 79blue. May you and anyone else on this board with a debilitating condition attain a health improvement as soon as possible.

Very sad to read about your situation 79blue, I hope it turns out to be something treatable and nothing too severe.

Saw Jason Bowen being interviewed on BBC Wales this afternoon, and it's gutting to see.
He spoke about his diagnosis and the effects this condition has had on him etc.

Heartbreaking to see. Bowen was a good player and a player I liked a lot, always gave his all and was always committed to the cause.
I was always happy to see him in a City shirt, you always knew he'd pop up with a goal or assist through his efforts.
To see him with tears in his eyes and explaining what his family is going through etc was hard to watch for obvious reasons

I hope your problem isn't MND mate, my thoughts are with you.

We all take it for granted when we're 17, feel like Superman.
If I could go around again, that's one thing I'd make sure of, to never take any of it for granted and appreciate it all more fully, while we have it all.

I started this thread at the start of March concerned that I had Motor Neurone Disease (MND). Since then I had MRI scans on my upper spinal cord and brain, which occurred on Good Friday. In the Last 10 weeks I have from walking unaided (with difficulty) to walking with the aid of a walking frame and I had to have a chair lift fitted in my home.

On Monday I had the results of the scans from my doctor and they were clear. The doctor expressed his concerns about MND and arranged for me to see a specialist today. Today I finally got to see a neurologist and after a long consultation he has confirmed the diagnosis. I discovered that he is the lead neurologist for MND in south Wales.

It was not the result I wanted but at least I have a diagnosis and certainty about where this is leading.

Quote:

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Originally Posted by 79blue

I started this thread at the start of March concerned that I had Motor Neurone Disease (MND). Since then I had MRI scans on my upper spinal cord and brain, which occurred on Good Friday. In the Last 10 weeks I have from walking unaided (with difficulty) to walking with the aid of a walking frame and I had to have a chair lift fitted in my home.

On Monday I had the results of the scans from my doctor and they were clear. The doctor expressed his concerns about MND and arranged for me to see a specialist today. Today I finally got to see a neurologist and after a long consultation he has confirmed the diagnosis. I discovered that he is the lead neurologist for MND in south Wales.

It was not the result I wanted but at least I have a diagnosis and certainty about where this is leading.

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My heart goes out to you 79blue and I feel annoyed by the realisation that there’s nothing I, or anyone else on here, can say to ease what you must be going through today.

Try and stay strong my friend.

As mentioned this is a very supportive community, there is noise on the sidelines but at its heart most people are genuine. Its brave of you and Sunnysideup to share, even if you don't know us, or we you. I hope it brings some comfort to talk about it.

Quote:

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Originally Posted by the other bob wilson

My heart goes out to you 79blue and I feel annoyed by the realisation that there’s nothing I, or anyone else on here, can say to ease what you must be going through today.

Try and stay strong my friend.

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It is difficult to find words to respond to your post and your circumstances 79blue. TOBW expresses it about as well as is possible and far better than I am able to. I, and I am sure many on this board, will have you in our thoughts and will be here to provide support, even if that is just to listen and talk.

Quote:

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Originally Posted by the other bob wilson

My heart goes out to you 79blue and I feel annoyed by the realisation that there’s nothing I, or anyone else on here, can say to ease what you must be going through today.

Try and stay strong my friend.

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This.

Quote:

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Originally Posted by 79blue

I started this thread at the start of March concerned that I had Motor Neurone Disease (MND). Since then I had MRI scans on my upper spinal cord and brain, which occurred on Good Friday. In the Last 10 weeks I have from walking unaided (with difficulty) to walking with the aid of a walking frame and I had to have a chair lift fitted in my home.

On Monday I had the results of the scans from my doctor and they were clear. The doctor expressed his concerns about MND and arranged for me to see a specialist today. Today I finally got to see a neurologist and after a long consultation he has confirmed the diagnosis. I discovered that he is the lead neurologist for MND in south Wales.

It was not the result I wanted but at least I have a diagnosis and certainty about where this is leading.

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I am really sorry to hear this 79blue and cannot imagine how much of a horrendous time it must be for you since all this began and especially now getting the diagnosis. As others have also said, it’s frustrating that I know I cannot say anything or do anything to make it better for you. I don’t know if you live with family or alone but hope you are able to reach out for lots of help and support. Thinking about you mate.

I am so sorry to read about your diagnosis

I hope you are able to access as much support as possible for yourself and your loved ones

Take Care

Quote:

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Originally Posted by SuperBluebirds91

I am really sorry to hear this 79blue and cannot imagine how much of a horrendous time it must be for you since all this began and especially now getting the diagnosis. As others have also said, it’s frustrating that I know I cannot say anything or do anything to make it better for you. I don’t know if you live with family or alone but hope you are able to reach out for lots of help and support. Thinking about you mate.

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Could not have put it better

Thanks for all the messages of support. Thankfully I have a lovely wife who does not know when to stop, with all the help and support she has given me, My daughter lives just a couple of miles away and she is always available to help out, which is great as my wife does not drive. I got a good network of friends and ex colleagues who would provide support and help if asked. A couple of my neighbours have offered help to run errands if we need it. I feel fortunate that I have this network of people in my life around me. Having to face this alone would be horrific.

I know exactly how this condition will progress over time and the affects it will have on my body, and I have seen it in the late stages during my career as a paramedic. The thought of undergoing this and my family having to witness it, is the worse aspect of this condition. This knowledge has helped inform me in my decision not to see it to the end stage. I will leave it as late as possible to get as much time as I can, but at the right time I will use my paramedical knowledge to painlessly say good night. Having no life insurance makes this decision easier.

Having the option of assisted home euthanasia would have been preferable, as it could have been done at a later stage.

Quote:

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Originally Posted by 79blue

Thanks for all the messages of support. Thankfully I have a lovely wife who does not know when to stop, with all the help and support she has given me, My daughter lives just a couple of miles away and she is always available to help out, which is great as my wife does not drive. I got a good network of friends and ex colleagues who would provide support and help if asked. A couple of my neighbours have offered help to run errands if we need it. I feel fortunate that I have this network of people in my life around me. Having to face this alone would be horrific.

I know exactly how this condition will progress over time and the affects it will have on my body, and I have seen it in the late stages during my career as a paramedic. The thought of undergoing this and my family having to witness it, is the worse aspect of this condition. This knowledge has helped inform me in my decision not to see it to the end stage. I will leave it as late as possible to get as much time as I can, but at the right time I will use my paramedical knowledge to painlessly say good night. Having no life insurance makes this decision easier.

Having the option of assisted home euthanasia would have been preferable, as it could have been done at a later stage.

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Wow what a post,tuging at the heart strings.
What a brave person you are,all my thoughts are with you and the family.

Quote:

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Originally Posted by 79blue

Thanks for all the messages of support. Thankfully I have a lovely wife who does not know when to stop, with all the help and support she has given me, My daughter lives just a couple of miles away and she is always available to help out, which is great as my wife does not drive. I got a good network of friends and ex colleagues who would provide support and help if asked. A couple of my neighbours have offered help to run errands if we need it. I feel fortunate that I have this network of people in my life around me. Having to face this alone would be horrific.

I know exactly how this condition will progress over time and the affects it will have on my body, and I have seen it in the late stages during my career as a paramedic. The thought of undergoing this and my family having to witness it, is the worse aspect of this condition. This knowledge has helped inform me in my decision not to see it to the end stage. I will leave it as late as possible to get as much time as I can, but at the right time I will use my paramedical knowledge to painlessly say good night. Having no life insurance makes this decision easier.

Having the option of assisted home euthanasia would have been preferable, as it could have been done at a later stage.

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Wow.

Had to donate after reading this.

Walesonline has done a good article on this today.

I spoke with their reporter Reem Ahmed, who contacted me via the appeal. I spoke over the phone over a few days and they sent a photographer over. I think she put it together well, although before it was published I was quite nervous about what angle she was going to put on it.

I texted her before publication threatening to haunt her, her descendants and their descendants for the next 3 weeks if she did a hit job (I stole that off the Simpsons).

https://www.walesonline.co.uk/news/w...eason-27028764

Quote:

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Originally Posted by 79blue

Walesonline has done a good article on this today.

I spoke with their reporter Reem Ahmed, who contacted me via the appeal. I spoke over the phone over a few days and they sent a photographer over. I think she put it together well, although before it was published I was quite nervous about what angle she was going to put on it.

I texted her before publication threatening to haunt her, her descendants and their descendants for the next 3 weeks if she did a hit job (I stole that off the Simpsons).

https://www.walesonline.co.uk/news/w...eason-27028764

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Just caught up on this thread and read your story - a couple of things you said resonated with me (not the medical ones). I've just donated and hope you get to your total and it helps a small bit with the tough road you have ahead. Best wishes to your and your loved ones.

Yesterday was the best day of the summer so far for City fans, but, at the same time, 79blue was posting this;

"It seems that my appeal is now running out of steam after running for 7 weeks. I would just like to thank all the people who have donated to this appeal and those who have offered kind words of support.

Unfortunately I was not able to reach my target amount, although that was quite an optimistic target. Fortunately the funds that I have been able to collect will enable me now to have my bathroom rebuilt so that I can access a shower via a wheelchair, which will make my life so much easier. I have already selected a suitable contractor to carry out the rebuild and hopefully it will completed within the next 3 weeks.

I would again like to offer my thanks for all the support that I have received over that last few months. My thanks is not just for the monetary support but also for the lift it has given to my mental health."

I know it's not easy in the current economic climate, but it would be a great gesture if anyone on here could make another Bluebird feel a little better today with a donation.