Rob Burrow

had my first "scare" the other night. had to have a doctor out. got some sort of infection. i'm on a ventilator at night but my breath was weak and irregular . it got in to my head i was taking my last breath. it was a surreal experience, one that believe it or not never entered my head would happen to me,not yet anyway.
four days of antibiotics and i'm back in work (part time).

lesson learned. enjoy every second of every day.....even when poorly.
 
had my first "scare" the other night. had to have a doctor out. got some sort of infection. i'm on a ventilator at night but my breath was weak and irregular . it got in to my head i was taking my last breath. it was a surreal experience, one that believe it or not never entered my head would happen to me,not yet anyway.
four days of antibiotics and i'm back in work (part time).

lesson learned. enjoy every second of every day.....even when poorly.

Your a tough old fucker bill. Top man.

Will you be well enough to get to the real game?
 
trial coming to Manchester very soon. i have applied .hope i'm chosen. had a terrible day today.

MND-SMART is currently testing two drugs to see if either of them slow down the progression of MND compared with a placebo (dummy drug).

Memantine
The first drug, memantine, is already used to improve the memory of people with Alzheimer’s disease (a form of dementia) by reducing the action of a brain chemical called glutamate. Previous trials have tested memantine on people with MND but not in large enough numbers to provide any conclusive evidence as to the effects of the drug. Trial participants showed a trend towards functional improvement and the drug caused no notable side effects. Investigators also reported significant slowing of spinal motor neuron loss so it is thought that this drug may slow the damage to neurons in people with MND.

Trazodone
The second drug, trazodone, is used widely in the treatment of anxiety and depression. It has been shown to protect neurons in animal studies by slowing production of faulty proteins that can cause neurons to die. Trazodone has been tested in other neurological conditions including Parkinson’s disease, Alzheimer’s disease and frontotemporal dementia and no notable side effects were seen. In trial participants with frontotemporal dementia investigators also observed improved cognition.

Drug selection
To select the first two drugs for this trial, our scientists used an unbiased system to review all published research studies in MND and other neurodegenerative diseases and produced a list of drugs that may slow progression of MND. We looked at studies in other neurodegenerative diseases alongside MND studies as neurons may be affected in a similar way in these diseases to MND.

Next, we produced a shortlist of drugs based on how well the studies were conducted, and how effective and safe the drugs were. A group of consultant neurologists then reviewed the shortlisted drugs and decided which were most likely to slow progression of MND alongside being able to be safely taken by people living with the disease. The two most promising drugs have been included in the trial.

Selecting more drugs for trial
MND-SMART is designed to run continuously for years to come to test treatments that may slow, stop or reverse the progression of MND. To help select future drugs we will trial, we will repeat the process of reviewing published information from MND and neurodegenerative disease studies at regular intervals to include the most recent published information.

We want to keep improving this drug selection process and so are developing new computer programmes to make compiling and reviewing published studies more efficient. We are also working on gathering further information on how we can test the potential of shortlisted drugs. One way we are doing this is by testing them in our labs on stem cells derived from people with MND.
 
trial coming to Manchester very soon. i have applied .hope i'm chosen. had a terrible day today.

MND-SMART is currently testing two drugs to see if either of them slow down the progression of MND compared with a placebo (dummy drug).

Memantine
The first drug, memantine, is already used to improve the memory of people with Alzheimer’s disease (a form of dementia) by reducing the action of a brain chemical called glutamate. Previous trials have tested memantine on people with MND but not in large enough numbers to provide any conclusive evidence as to the effects of the drug. Trial participants showed a trend towards functional improvement and the drug caused no notable side effects. Investigators also reported significant slowing of spinal motor neuron loss so it is thought that this drug may slow the damage to neurons in people with MND.

Trazodone
The second drug, trazodone, is used widely in the treatment of anxiety and depression. It has been shown to protect neurons in animal studies by slowing production of faulty proteins that can cause neurons to die. Trazodone has been tested in other neurological conditions including Parkinson’s disease, Alzheimer’s disease and frontotemporal dementia and no notable side effects were seen. In trial participants with frontotemporal dementia investigators also observed improved cognition.

Drug selection
To select the first two drugs for this trial, our scientists used an unbiased system to review all published research studies in MND and other neurodegenerative diseases and produced a list of drugs that may slow progression of MND. We looked at studies in other neurodegenerative diseases alongside MND studies as neurons may be affected in a similar way in these diseases to MND.

Next, we produced a shortlist of drugs based on how well the studies were conducted, and how effective and safe the drugs were. A group of consultant neurologists then reviewed the shortlisted drugs and decided which were most likely to slow progression of MND alongside being able to be safely taken by people living with the disease. The two most promising drugs have been included in the trial.

Selecting more drugs for trial
MND-SMART is designed to run continuously for years to come to test treatments that may slow, stop or reverse the progression of MND. To help select future drugs we will trial, we will repeat the process of reviewing published information from MND and neurodegenerative disease studies at regular intervals to include the most recent published information.

We want to keep improving this drug selection process and so are developing new computer programmes to make compiling and reviewing published studies more efficient. We are also working on gathering further information on how we can test the potential of shortlisted drugs. One way we are doing this is by testing them in our labs on stem cells derived from people with MND.
Thoughts totally with you mate take care xx
 
Feel for him . Bloody 37. I was diagnosed with MND July 2018 after 18 months of tests. I am fully reliant on my wife now for all every day life,i can do nothing for myself. That said i am ok in myself and am happy.
My worry for Rob is it's started in his bulbar area, usually lethal in months. My doc reiterated on Wednesday i am in my last 12 months of life,sad but I'm 65.not 37 ffs.

Oh and i told him he was chatting shit :)

I knew you were poorly Bill but not really sure about your condition. I had no idea it could be so debilitating over such a relativity short time frame from your initial diagnosis. So very sad to hear of your current predicament and how it's affecting you and only hope your staying as comfortable as possible. All the best. Bob:
 

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