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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.
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.
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