My MND update

[Don Corleone]

Re: My MND update

What a terrible disease. That is such a heartbreaking but well written post. Thoughts are with you and your family

[Robin Friday's Ghost]

Re: My MND update

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.

[Keyser Soze]

Re: My MND update

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.

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

[Dave St]

Re: My MND update

That was hard, sorry to hear this. sending you all love and strength bluebird!

[Hot Shot Hamish.]

Re: My MND update

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.

[79blue]

Re: My MND update

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.

[SLUDGE FACTORY]

Re: My MND update

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

[Optimistic Nick]

Re: My MND update

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?

[79blue]

Re: My MND update

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

That is whats comes from being a Bluebird.

[Tuerto]

Re: My MND update

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

[SLUDGE FACTORY]

Re: My MND update

That is whats comes from being a Bluebird.

Sheffield Wednesday job

You could do it from home with all your technology ?

[blue matt]

Re: My MND update

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

[uncle bob]

Re: My MND update

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 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. ❤️

[splott parker]

Re: My MND update

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. ❤️

Well done Bob, all strength and better health to you mate

[SLUDGE FACTORY]

Re: My MND update

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. ❤️

Nice one Bob