What a difficult and brave post to make. Thinking of you and your family.
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Cannot begin to imagine what you must be going through fellow bluebird. I remember your first post about your diagnosis and was literally thinking about you the other day and wondering how you were. I’m so sorry to hear things have deteriorated so quickly for you.I know there’s nothing I can say really but sending you and your family all the best wishes.
What a difficult and brave post to make. Thinking of you and your family.
Thank you so much for posting this. Your pragmatism and clarity of thought given your disease and circumstance is a real testament to your character.
I'm on the way back from France visiting a friend who is in almost exactly the same situation as you (he is a little further along - no limb movement, although his disease is progressing a little slower). We were able to enjoy the rugby world cup together, and to play board games with the assistance of his eye-movement tracking tablet. I hope you are still able to find some joy in such things.
My thoughts will be with you and your family.
Very brave of you to post this.
It's very heartfelt. MND is a horrible disease as it attacks those who are young. Yet it doesn't affect cognitive function so you are totally aware that your body is deteriorating.
Take care bluebird
This is so sad to read. I'm truly sorry for you 79 but you are extraordinarily brave and dignified. I hope you and your family can find some element of peace in these awful circumstances.
What a terrible disease. That is such a heartbreaking but well written post. Thoughts are with you and your family
This was incredibly difficult to read. I can't imagine how this must be affecting you mentally as well as physically. A close friend's son-in-law has also been diagnosed although the disease seems to be progressing a bit slower for him. It impossible to know what to say. I hope you get all the support and love you deserve.
Oh god. I am so sorry to hear this.
I only last year lost a relative (cousin at 48), and a decade before that an uncle, to MND. The mind still goes and the body doesn't want to move with it. A cruel, cruel, way to go. No words can console how you feel, other than to try and make the most of every day left as best as you can - with must be excrutiatingly challenging all the way. I hope you feel you have enjoyed the time you have been given and made the most of it.
Most of all, very warming to know your own family are making personal sacrifices to support your situation in every way they can. I don't know you at all, but that collective support must speak volumes for you as a person and the love you have. You can take pride from that.
Much, much sympathy, and love to a fellow bluebird x
That was hard, sorry to hear this. sending you all love and strength bluebird!
I can say nothing different from what everyone else has posted. While I’ve been sat here moaning to my wife about a little bit of bloody toothache. My thoughts are with you and your loving family. I’m not religious but feel the need to say a prayer for you just in case there is someone up there.
Thanks for your kind and generous replies. Knowing that there are people out who do not not know me and only have a shared interest in the same football team, but who care about my situation really helps. I found during this period writing about my situation helps my mental state.
After getting through the initial shock and trauma of the diagnosis I thought very carefully how I should face it. It would have been easy to stay angry or bemoan my fate and howl at the moon. I could have ignored it and got into a state of denial. Any one of these options would affect the people around me and they could have made them more upset about the situation and possibly less likely to fully support me. I therefore decided to face my limited future with pragmatism and logic, no moaning, no anger, no despondency, just deal with the situation and the challenges. I try to make light of what is happening and constantly cracking jokes about it. I just did not want my family to remember me as a moaning twat in the final period of my life.
I had my communication and equipment controlling eye tracking system fitted today. This will allow me to speak and control lighting, hospital bed, TV, Sky Firestick, web browser, iPhone and apps. All controlled via a computer screen via eye sight. This will enable me to function when fully paralysed and mute, which takes away many of my fears. Thankfully I will have time to practice using it and fully learn its capabilities before I become reliant on it. The invoice for it showed that it cost £7,000 just for the kit and it took nearly 5 hours for it to be installed. Fortunately I am having it on loan for no cost to me.
Fortunately I am not religious, so no fear of going to hell. I am just expecting the lights to go out at the end.
Your clarity of thought is a lesson. I am so sorry you are going through this and that you know your fate. It feels wrong to ask anything of you, but please do keep updating for as long as you can/feel appropriate. I've learned a lot from your posts.
Is there anything more you want to achieve before(in your words) the lights go out? And anything you want from this forum?
I would second that. I hope 79blue keeps posting. we are all (Mostly) anonymous on here, but it is a type of community even though we don't know each other, and for all of the back and forth we witness, people on here are prepared to help and give support when needed. Obviously it's whatever 79blue wants and feels most comfortable with, but the way i see it, he's a part of this dysfunctional family now. Best he stays
A tough read but well done for posting it, you are a brave man nothing I can add that hasnt been said, but good luck and hope your end is as you want it
We never know whats around the corner and should try and live our life to the max
good luck to your and your family, best wishes to you all
I had Bacterial Meningitis back in November and sepsis on the brain and that has changed my life no end since.
I've had many days whereby I feel like I just can't go on anymore and want to do what you did taking my own life but I was to cowardly to do it.
Having read your post you have given me great inspiration to see how stupid I am and to sort myself out.
My problems are nothing compared to yours mate.
May you live your rest of your life in peace with as little pain as possible.
God Bless you. ❤️
Awful situation, but a lot to be admired in the way you are approaching things. Thinking of you and your family
The support and messages have been overwhelming and it has lifted my spirits. A few of the posters have said my writings have helped them, particularly uncle bob, who has also gone through a particularly dark time. If I have helped anyone in anyway then that makes me feel much better and glad that I posted my very personal situation and thoughts.
I had planned to stop posting about it after this thread, but many posters have found it helpful and others have asked me to continue. So I will add further updates when they arise. Optimistic Nick asked if I wanted to achieve anything more before the end? I feel quite happy with my achievements in life despite having a difficult start in life.
I was brought up by my father, who served in the RAF, but who was an alcoholic (he died aged 49 due to alcohol). We moved frequently which affected my education and I left school in 1980 with 1 O’level and CSE’s, which severely affected my job prospects. After 2 yeas on the dole and frequently getting into trouble (I was fined £250 for fighting outside NP in 1982), I packed a bag and moved to Devon. I found myself a bedsit and got a job in a holiday camp in Exmouth.
After a couple of years I joined the army, Royal Corps of Signals, which I did for 6 years. This gave me a lot of self confidence and changed my life. I learned to Ski and I undertook the army’s Arctic Warfare and Survival Training in Norway, which is an experience I will never forget.
When I left the army I joined the Gwent Ambulance Service. Starting at the bottom, transporting patients to outpatients and clinics. I did this for 2 years before passing the entry exams to undergo emergency ambulance training. I did this for 3 years before I passed the Paramedic entry examinations and then the Paramedic training. During this time all the studying leading up to the training was done via self learning, so you had to be self reliant. By the time I qualified as a paramedic I had been studying and learning on the job for 5 years, equivalent to doing an apprenticeship. When paramedic training was passed over to Universities, all current NHS paramedics were allowed to claim a diploma in Paramedical Studies.
I decided to continue to study after qualifying, so I spent 6 years studying mathematics and physics with the OU. This allowed me to undertake research secondments within the Welsh Ambulance Service. I had 5 research papers papers published, 4 in medical journals and 1 internally, which changed practice within the service. One of my research studies was published in the British Medical Journal, which is one of the prestigious in the world. This was on how effective school children can perform chest compressions during CPR. I conducted this study in Radyr comprehensive, Cardiff High, Oakfield Primary and Ton Yr Ywen primary in 2006. This paper is referenced by organisations across the world when setting training programmes for children.
I have also written training courses and instructed on them. I spent my last 6 years mentoring staff of all grades whilst being operational. I believe that I significantly improved myself during my life, despite my poor start and looking back I can feel proud of my achievements.
Thank you for sharing.
For every reply and message that you've read, there are countless others like me who have read and been moved & inspired by you. Thank you for sharing your heart-breaking journey, and I'm pleased you are going to keep updating on here.
I read your original post out to my wife last night after she was complaining about how crap things seem, and how fed up she is with life. For context our youngest daughter is autistic and her behaviour is 'challenging' at times. Most of us are guilty of living in our own heads and reading a post like yours puts life into perspective.