Reply With QuoteWhat 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.Originally Posted by 79blue
Back in March I started a thread about my concerns and eventual diagnosis of MND. I thought I will give an update on how it has affected me and my family.
It started off this time last year when I noticed a limp on my left leg. From then until June I went from walking with a stick, to crutches and finally using a walking frame. Since July I have not be able to walk and last month I lost the ability to stand. My left arm started to weaken from May and is now totally paralysed. The only limb that I can use is my right arm. Once symptoms start in my right arm I suspect I would have 2 months before I lose the use of it.
Since May my voice has steadily got weaker and I struggle to talk and I have great difficulty talking on the phone. My breathing is getting weaker as my respiratory muscles weaken and this will eventually kill me. I expect to be fully paralysed and mute in the next 3 months.
The speed of the changes has been very difficult to keep up with and it has been very demoralising. My doctors and other specialist have been stunned by the speed of the progression of the disease.
From the start I had decided to end my life before the disease did, so in late July I attempted suicide. I took 200mg of morphine (a very high dose) and 40 tramadol tablets, but I survived. The fact that I attempted it has left me feeling better mentally than I was before. I think that is due to me thinking that at least I tried and I will have no regret about not attempting it.
I have to make many changes to my house. I had a stairlift fitted, which will soon be changed for a different one as it will soon not meet my needs. I have a powered arm chair, my bathroom is now a wet room and I use a hospital bed. I have a hoist above my bed and I will have one fitted down stairs this week. I am having a portable computer system soon with eye tracking, which will allow me to speak through it and control my environment, including bed, lights and TV equipment, similar to Stephen Hawking.
My daughter and son in law have moved in to help my wife support me. My wife could no longer help me on her own. I have refused carer support because they would not be allowed to manually move me and I did not want to pay £100 pw for them to to stand and watch. When all the hoists are in I will have them in to help the family. I am really grateful for my families support.
This is a really horrible disease. It has robbed me of my independence, my mobility, my hobbies, my privacy, my dignity and eventually my life. I am now at peace with the situation. I have a do not resuscitate order and an end of life plan where I refuse treatment for conditions that may end my life. I will spend my last days on a hospice ward to avoid my family having to witness and deal with the end stage. My hope is that end will come quickly and that I do not see the end of this football season.
This will be my last update, unless I awaken one morning to find myself miraculously cured.
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.Back in March I started a thread about my concerns and eventual diagnosis of MND. I thought I will give an update on how it has affected me and my family.
It started off this time last year when I noticed a limp on my left leg. From then until June I went from walking with a stick, to crutches and finally using a walking frame. Since July I have not be able to walk and last month I lost the ability to stand. My left arm started to weaken from May and is now totally paralysed. The only limb that I can use is my right arm. Once symptoms start in my right arm I suspect I would have 2 months before I lose the use of it.
Since May my voice has steadily got weaker and I struggle to talk and I have great difficulty talking on the phone. My breathing is getting weaker as my respiratory muscles weaken and this will eventually kill me. I expect to be fully paralysed and mute in the next 3 months.
The speed of the changes has been very difficult to keep up with and it has been very demoralising. My doctors and other specialist have been stunned by the speed of the progression of the disease.
From the start I had decided to end my life before the disease did, so in late July I attempted suicide. I took 200mg of morphine (a very high dose) and 40 tramadol tablets, but I survived. The fact that I attempted it has left me feeling better mentally than I was before. I think that is due to me thinking that at least I tried and I will have no regret about not attempting it.
I have to make many changes to my house. I had a stairlift fitted, which will soon be changed for a different one as it will soon not meet my needs. I have a powered arm chair, my bathroom is now a wet room and I use a hospital bed. I have a hoist above my bed and I will have one fitted down stairs this week. I am having a portable computer system soon with eye tracking, which will allow me to speak through it and control my environment, including bed, lights and TV equipment, similar to Stephen Hawking.
My daughter and son in law have moved in to help my wife support me. My wife could no longer help me on her own. I have refused carer support because they would not be allowed to manually move me and I did not want to pay £100 pw for them to to stand and watch. When all the hoists are in I will have them in to help the family. I am really grateful for my families support.
This is a really horrible disease. It has robbed me of my independence, my mobility, my hobbies, my privacy, my dignity and eventually my life. I am now at peace with the situation. I have a do not resuscitate order and an end of life plan where I refuse treatment for conditions that may end my life. I will spend my last days on a hospice ward to avoid my family having to witness and deal with the end stage. My hope is that end will come quickly and that I do not see the end of this football season.
This will be my last update, unless I awaken one morning to find myself miraculously cured.
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.
So with all this technology , even if CCFC are on their traditional shocking run mid season ....you will have the resources to watch it and will be forced to do so ?
Good god
There is no escape
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?
That is whats comes from being a Bluebird.
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
Sheffield Wednesday job
You could do it from home with all your technology ?
A tough read but well done for posting it, you are a brave man
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.Back in March I started a thread about my concerns and eventual diagnosis of MND. I thought I will give an update on how it has affected me and my family.
It started off this time last year when I noticed a limp on my left leg. From then until June I went from walking with a stick, to crutches and finally using a walking frame. Since July I have not be able to walk and last month I lost the ability to stand. My left arm started to weaken from May and is now totally paralysed. The only limb that I can use is my right arm. Once symptoms start in my right arm I suspect I would have 2 months before I lose the use of it.
Since May my voice has steadily got weaker and I struggle to talk and I have great difficulty talking on the phone. My breathing is getting weaker as my respiratory muscles weaken and this will eventually kill me. I expect to be fully paralysed and mute in the next 3 months.
The speed of the changes has been very difficult to keep up with and it has been very demoralising. My doctors and other specialist have been stunned by the speed of the progression of the disease.
From the start I had decided to end my life before the disease did, so in late July I attempted suicide. I took 200mg of morphine (a very high dose) and 40 tramadol tablets, but I survived. The fact that I attempted it has left me feeling better mentally than I was before. I think that is due to me thinking that at least I tried and I will have no regret about not attempting it.
I have to make many changes to my house. I had a stairlift fitted, which will soon be changed for a different one as it will soon not meet my needs. I have a powered arm chair, my bathroom is now a wet room and I use a hospital bed. I have a hoist above my bed and I will have one fitted down stairs this week. I am having a portable computer system soon with eye tracking, which will allow me to speak through it and control my environment, including bed, lights and TV equipment, similar to Stephen Hawking.
My daughter and son in law have moved in to help my wife support me. My wife could no longer help me on her own. I have refused carer support because they would not be allowed to manually move me and I did not want to pay £100 pw for them to to stand and watch. When all the hoists are in I will have them in to help the family. I am really grateful for my families support.
This is a really horrible disease. It has robbed me of my independence, my mobility, my hobbies, my privacy, my dignity and eventually my life. I am now at peace with the situation. I have a do not resuscitate order and an end of life plan where I refuse treatment for conditions that may end my life. I will spend my last days on a hospice ward to avoid my family having to witness and deal with the end stage. My hope is that end will come quickly and that I do not see the end of this football season.
This will be my last update, unless I awaken one morning to find myself miraculously cured.
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. ❤️
Well done Bob, all strength and better health to you mate
Nice one Bob
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.
You have an incredible amount of things to be proud of
Hats off to you
👍
I can only echo this.
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