Jason Bowen MND diagnosis and me

[OurManFlint II]

Re: Jason Bowen MND diagnosis and me

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.

[John Buchanan]

Re: Jason Bowen MND diagnosis and me

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.

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.

[jon1959]

Re: Jason Bowen MND diagnosis and me

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.

This.

[SuperBluebirds91]

Re: Jason Bowen MND diagnosis and me

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.

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.

[SLUDGE FACTORY]

Re: Jason Bowen MND diagnosis and me

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

[jeepster]

Re: Jason Bowen MND diagnosis and me

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.

Could not have put it better

[79blue]

Re: Jason Bowen MND diagnosis and me

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.

[jeepster]

Re: Jason Bowen MND diagnosis and me

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.

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

[Carl Dale's Mole]

Re: Jason Bowen MND diagnosis and me

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.

Wow.

Had to donate after reading this.

[79blue]

Re: Jason Bowen MND diagnosis and me

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/wales-news/struggled-move-foot-no-reason-27028764

[Brian]

Re: Jason Bowen MND diagnosis and me

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

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.

[the other bob wilson]

Re: Jason Bowen MND diagnosis and me

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.