My MND update

[Undercoverinwurzelland]

Re: My MND update

This is heartbreaking to read. Such a cruel disease. I hope your family around you can give you some comfort.

[the other bob wilson]

Re: My MND update

I don’t know what I was expecting, but the rapid progress of the awful disease is a shock (I note your doctor and specialist are “stunned” by how quickly it’s spread). One can but admire your stoicism and fortitude and hope that your remaining time can be as stress free and tolerable as you deserve it to be.

Those of us who get into childish arguments on here (myself included) should try to stop and think of you before they bite back at someone - you show more dignity and class in that one message than many of us do in a year on here.

A post like this makes you feel both powerless and useless because there’s so little you can do to change your situation, so I’ll just offer genuine best wishes to you and your family.

[insider]

Re: My MND update

Heartbreaking post.
Sending my best to you and your family.

[splott parker]

Re: My MND update

Difficult to know what to say, keep battling and I hope some of the inane drivel on here keeps you amused. Your courage and acceptance is to be admired. I wish every strength to your nearest & dearest.

[Bobby Dandruff]

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.

Thanks for posting this.

[sneggyblubird]

Re: My MND update

My thoughts and prayers for you and your family.

[jon1959]

Re: My MND update

Thanks for posting 79blue.

Very few of us can imagine ourselves in your position but I’m sure that we all feel admiration and respect for your bravery and honesty.

As others have said it is humbling and inspiring to read your post. Just writing that has made a positive difference to others lives. That is important.

[mrbluejay]

Re: My MND update

So sad to read, I admire your approach to this horrible disease. I wish you and your family all the very best.

[2b2bdoo]

Re: My MND update

I’m not really sure what to say other than to wish you and your family the best. Life just isn’t fair sometimes.

[Delbert]

Re: My MND update

Thank you for posting 79blue, it is unimaginable what has happened to you. A reminder should it be needed that life is so precious and we should cherish it everyday. I hope you find some peace in impossible circumstances and that your family and friends continue to find the strength to support you through this time of such sadness.

[SuperBluebirds91]

Re: My MND update

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.

[Michael Morris]

Re: My MND update

What a difficult and brave post to make. Thinking of you and your family.

[TaffsWellThatEndsWell]

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.

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.

[Armitage Shanks]

Re: My MND update

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

[Dorcus]

Re: My MND update

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.