Steve Barrett OBE
@stevebarrett.bsky.social
Lifelong Hearts supporter. Currently battling with MND. The world begins and ends with family, nothing else.
But he happily states it to be zelenskyy’s fault, does he not? Buffoon of a man.
May 25, 2025 at 10:42 PM
But he happily states it to be zelenskyy’s fault, does he not? Buffoon of a man.
Indeed, Brian. Often the ‘patient voice’ is the least heard. I appreciate I don’t need to have suffered a broken leg to know that it is painful, but I do believe many of us with MND merit direct involvement in academic and clinical research programmes. We could add much value.
April 9, 2025 at 1:03 PM
Indeed, Brian. Often the ‘patient voice’ is the least heard. I appreciate I don’t need to have suffered a broken leg to know that it is painful, but I do believe many of us with MND merit direct involvement in academic and clinical research programmes. We could add much value.
That is a difficult one, Brian. Surely there must be gaps in research looking into resolving specific elements of the disease symptoms such as swallowing, maintaining emotional equilibrium, and end of life care. This includes researching what care that carers may need at end of life stage.
April 8, 2025 at 9:16 PM
That is a difficult one, Brian. Surely there must be gaps in research looking into resolving specific elements of the disease symptoms such as swallowing, maintaining emotional equilibrium, and end of life care. This includes researching what care that carers may need at end of life stage.
Yes, @mareetodd.bsky.social is a champion for the cause; thank goodness for people like her. I hope the wind blows strong in her main sail so that her success is delivered speedily.
By the way, have just seen the King on TV blowing into a recorder fashioned out of a carrot. The mind boggles 😁
By the way, have just seen the King on TV blowing into a recorder fashioned out of a carrot. The mind boggles 😁
April 4, 2025 at 5:55 PM
Yes, @mareetodd.bsky.social is a champion for the cause; thank goodness for people like her. I hope the wind blows strong in her main sail so that her success is delivered speedily.
By the way, have just seen the King on TV blowing into a recorder fashioned out of a carrot. The mind boggles 😁
By the way, have just seen the King on TV blowing into a recorder fashioned out of a carrot. The mind boggles 😁
Definitely mate 👍
April 4, 2025 at 5:49 PM
Definitely mate 👍
Are you going to the May event at the Parliament, Brian?
April 4, 2025 at 3:09 PM
Are you going to the May event at the Parliament, Brian?
I think that one of the challenges is the access to carers, which appears sketchy regionally. I recall feeling positive when hearing SNP plans for a social care policy at the last Scottish Parliament event. I understand that policy has now been discarded? Disappointing if true.
April 3, 2025 at 12:35 PM
I think that one of the challenges is the access to carers, which appears sketchy regionally. I recall feeling positive when hearing SNP plans for a social care policy at the last Scottish Parliament event. I understand that policy has now been discarded? Disappointing if true.
Exactly Brian, of course a cure would be anyone’s wish but that is a rather utopian feasibility at this stage. Much more research needed to establish and understand more about causation. Anything else may then more easily follow.
April 2, 2025 at 10:27 AM
Exactly Brian, of course a cure would be anyone’s wish but that is a rather utopian feasibility at this stage. Much more research needed to establish and understand more about causation. Anything else may then more easily follow.
Go for a long walk holding hands with my wife is the one thing I would want to do above all else. Of course, I miss every aspect of my life when I was fully mobile and, as you say, it’s the simple things that were once taken for granted that I wish I could do now.
April 2, 2025 at 10:22 AM
Go for a long walk holding hands with my wife is the one thing I would want to do above all else. Of course, I miss every aspect of my life when I was fully mobile and, as you say, it’s the simple things that were once taken for granted that I wish I could do now.
Hi Brian, tracheostomy has not yet been discussed with me. My breathing, albeit challenging at times, is not at the stage where a tracheostomy is needed. My NIV is effective in supporting me at this time.
April 2, 2025 at 10:17 AM
Hi Brian, tracheostomy has not yet been discussed with me. My breathing, albeit challenging at times, is not at the stage where a tracheostomy is needed. My NIV is effective in supporting me at this time.
Thank you, Brian and fingers crossed, mate. What will be, will be as they say.👍
March 28, 2025 at 6:04 PM
Thank you, Brian and fingers crossed, mate. What will be, will be as they say.👍
Really pleased that your respiratory function is improved, Brian. I can only imagine how uncomfortable and scary it must have felt prior to your 24 hour arrangement. I am hoping that the time I am using my machine does not extend too much further; the opposite will most likely happen though lol.
March 28, 2025 at 6:02 PM
Really pleased that your respiratory function is improved, Brian. I can only imagine how uncomfortable and scary it must have felt prior to your 24 hour arrangement. I am hoping that the time I am using my machine does not extend too much further; the opposite will most likely happen though lol.
Hi Brian, yes. I couldn’t cope without it, mate. I have it on for approximately 16 hours per day. Was initially on VPAP and now moved to BPAP only this week.
March 27, 2025 at 1:43 PM
Hi Brian, yes. I couldn’t cope without it, mate. I have it on for approximately 16 hours per day. Was initially on VPAP and now moved to BPAP only this week.
Ahhhhhh, the old manufacturing issues lol.
March 27, 2025 at 1:39 PM
Ahhhhhh, the old manufacturing issues lol.
Great question, Brian. For me, I have been very well informed by my support team but some things are still a weird nonetheless. I have a loss of sensory capacity in my right hand which is constantly tingly. The other is the over production of saliva. I am not dribbling but I pool and swallow a lot.
March 26, 2025 at 9:47 PM
Great question, Brian. For me, I have been very well informed by my support team but some things are still a weird nonetheless. I have a loss of sensory capacity in my right hand which is constantly tingly. The other is the over production of saliva. I am not dribbling but I pool and swallow a lot.
I sometimes wish I wasn’t told. Ignorance can be blissful and I often wonder if knowing about the condition affected my psyche negatively. I was initially told I had 12-14 months to live but here I am over three years later! Now more accepting of what lies ahead but incredibly frightened at times.
March 26, 2025 at 7:06 PM
I sometimes wish I wasn’t told. Ignorance can be blissful and I often wonder if knowing about the condition affected my psyche negatively. I was initially told I had 12-14 months to live but here I am over three years later! Now more accepting of what lies ahead but incredibly frightened at times.
My diagnosis journey was around 5 years or so. Numerous electro-conduction tests. I just think the barriers to a quicker diagnosis involved a combination of factors such as, my ignorance and apathy, the time it took to discount other conditions, and probably the slow pace of my symptom changes.
March 26, 2025 at 7:03 PM
My diagnosis journey was around 5 years or so. Numerous electro-conduction tests. I just think the barriers to a quicker diagnosis involved a combination of factors such as, my ignorance and apathy, the time it took to discount other conditions, and probably the slow pace of my symptom changes.
my progression is very slow compared to that of most others. I know I should feel blessed by that, and I suppose I do, but feel terrible for those of us that experience more dramatic impacts that I have thus far.
March 26, 2025 at 6:58 PM
my progression is very slow compared to that of most others. I know I should feel blessed by that, and I suppose I do, but feel terrible for those of us that experience more dramatic impacts that I have thus far.
tests, including biopsy of my right thigh and removal of sural nerve in my right ankle. This led to an initial ALS diagnosis. Flew to Florida for second opinion and the MND was confirmed but changed from ALS to PMA. Just the less shitty end of a shitty stick really. I have a deep sense of guilt that
March 26, 2025 at 6:57 PM
tests, including biopsy of my right thigh and removal of sural nerve in my right ankle. This led to an initial ALS diagnosis. Flew to Florida for second opinion and the MND was confirmed but changed from ALS to PMA. Just the less shitty end of a shitty stick really. I have a deep sense of guilt that
My first symptom was a tingling feeling in my right leg and very sudden atrophy of the muscle in my right thigh. Despite tests in the UK no diagnosis was made.
After moving to the Caribbean for work purposes, I started to get fasciculations in both legs and right arm. Had a number of subsequent ..
After moving to the Caribbean for work purposes, I started to get fasciculations in both legs and right arm. Had a number of subsequent ..
March 26, 2025 at 6:54 PM
My first symptom was a tingling feeling in my right leg and very sudden atrophy of the muscle in my right thigh. Despite tests in the UK no diagnosis was made.
After moving to the Caribbean for work purposes, I started to get fasciculations in both legs and right arm. Had a number of subsequent ..
After moving to the Caribbean for work purposes, I started to get fasciculations in both legs and right arm. Had a number of subsequent ..
Hi Brian, sleep is, as you say, important. I struggle to stay awake during the day at times because the quality of my sleep at night is poor. My adjustable bed is helpful.
I can still turn myself with the aid of a grab bar but find it hard to do and to get comfortable due to breathing my issues.
I can still turn myself with the aid of a grab bar but find it hard to do and to get comfortable due to breathing my issues.
March 26, 2025 at 6:49 PM
Hi Brian, sleep is, as you say, important. I struggle to stay awake during the day at times because the quality of my sleep at night is poor. My adjustable bed is helpful.
I can still turn myself with the aid of a grab bar but find it hard to do and to get comfortable due to breathing my issues.
I can still turn myself with the aid of a grab bar but find it hard to do and to get comfortable due to breathing my issues.
Well, it’s good to have you here Brian. I am not hugely active but do have the odd scroll and engage in discussion from time to time. Hopefully catch up with you at some MND Scotland events, mate 👍
March 22, 2025 at 9:52 PM
Well, it’s good to have you here Brian. I am not hugely active but do have the odd scroll and engage in discussion from time to time. Hopefully catch up with you at some MND Scotland events, mate 👍
Hi Brian, thanks for following me. Happy to follow you on your journey, albeit you are much further along the path than I am. Wishing and hoping that I develop your inner strength. Take care buddy.
March 21, 2025 at 8:51 PM
Hi Brian, thanks for following me. Happy to follow you on your journey, albeit you are much further along the path than I am. Wishing and hoping that I develop your inner strength. Take care buddy.
Syphilis or gonorrhoea? That’s the choice 🇱🇻
March 9, 2025 at 12:53 PM
Syphilis or gonorrhoea? That’s the choice 🇱🇻
Hopefully, mate 🇱🇻
March 3, 2025 at 1:55 AM
Hopefully, mate 🇱🇻