Help Irina fight MND
Donation protected
In April 2018, I accompanied Mum to an appointment at a neurological hospital in central London.
She had an issue with her hands for some time (she couldn't grip properly), her speech had become slurred, and she had fallen over a few times because of poor balance, including once on a commuter train when she chipped her tooth. Visits to the GP had not provided any solutions; her GP referred her to a neurological specialist. That day we attended the appointment together, we were utterly unprepared for the diagnosis.
Very early into the appointment, the professor told us that my mother was demonstrating classic symptoms of Motor Neurone Disease.
He was almost blasé in the way he said it, which made us think -- naively, it quickly became clear -- 'oh, he knows what the problem is, now he can help us to fix it'.
For 2 weeks my mother had a series of tests, which confirmed the original diagnosis of MND.
The professor was very matter-of-fact: there is no cure, most people die within 18 months to two years. The gravity of the diagnosis took some time to sink in. The fact that there was no way to fix it. The fact that it is always terminal. The fact that there was no hope. Mum collapsed. She had just been told she was going to die.
In the immediate aftermath of this diagnosis, we were both in shock.
I was devastated to contemplate losing my mum, but more than this, it was agonising to watch her try to come to terms with it. She was being told that not only would she die relatively soon, but that on her path to death, she would lose her ability to live her life in anything like the way she was used to, losing all independence, totally reliant on others for everything.
MND is a rare, rapidly progressive illness that affects 2 in 100,000 people in the UK every year. It damages the nervous system leading to weakness, muscle wasting, severe disability and death. Death usually occurs within 2-5 years after diagnosis, but half of those affected die within 12 months. The victim is eventually unable to move, speak, swallow and finally unable to breathe. The victim watches from within their own demise. It's a shocking, appalling disease.
My mother is Irina Shcherbyna, aged 46, and I am her only child, Jenya. Mum lived a very active life, working hard in banking, loved her work and colleagues, enjoying a good social life, keeping herself fit at the gym. When she was first diagnosed, she did not immediately appreciate how quickly she would lose all of that. She very quickly became too ill to work; her reluctance to let her friends witness her decline has led to her becoming very isolated; and she is not able to do anything unaided. Mum's symptoms right now are at the stage where she cannot form words, she cannot use her arms or hands, and she has zero strength in her legs. The impact of MND has had already a terrible physical effect, but the emotional impact is just as bad, if not worse. She is grieving for her own life.
After her diagnosis, I set myself to research MND and what drugs and medications are available to ameliorate the effects of the disease. I want her to live for as long as she can, as well as she can. The NHS provides only one medication, Riluzole, which has been available since the 1990s. This is an end of life medication which can extend her lifespan for two to three months. Internationally, I have discovered and imported a powerful antioxidant called Edavarone, and another called Ibudilast. After several months they are showing a positive impact.
Mum endures eighteen IV infusions per month, including Edvarone and Myers Push. She takes a host of vitamins and B12 injections, and 10 tablets a day of Ibudilast. It is Ibudilast which is holding back the bulbar symptoms, without which her ability to breathe would be limited to such an extent she may not still be with us.
Ibudilast costs us £10.00 per day. Edvarone, including nurses to administer the infusion, costs us £2,200 a month. We have recently been able to reduce these fees as Karen, a great friend, has insisted on being trained to administer IV drugs, which has provided us with an enormous saving. But still, the disease keeps advancing.
We have used all our savings paying for the medications we have found for Mum so far. Over the past few months we've been gradually coming to terms with what lies ahead, and we have seen the changes in Mum's condition. We have seen significant decline, but we have also seen some great improvements with the regime she is on.
Just as funds run low, we need to keep Mum supplied with the medications her current more stable health relies upon. I want to be able to prolong Mum's life for as long as possible, both so that we can have more time together and because I always live with the hope that one day the discovery will be made of a cure, something that can finally halt this disease. So many drugs trials are underway worldwide for MND/ ALS; hope is something we try not to get carried away with, but there is, at least, some there.
Therefore, and Mum does not know this yet, I am fundraising for her now. I am trying to raise the sum of £36,000 which is needed to pay for her to continue on Edavarone and Ibudilast, and would also allow us to seek out potentially life-changing stem cell therapy, which is available in the States from $35,000.
We have already spent £74,000 to get where we are today. The additional £36,000 should get us to beyond 2020 and into a stable situation where we can slow this disease down enough that Mum has a life to live, albeit with MND still ever present, but hopefully with her symptoms greatly reduced.
Even something as small as £10 will give my mum a day of her key drug, the one that keeps her breathing.
Thank you for taking the time to read this and I will post exactly how we do over the next few months, about any funds raised, and to show your how we have spent it. I want to show you my mum living with MND, not dying from it.
Thank you everyone; I am so grateful to those who have already helped, and I will be so grateful too to anyone else who is able to help us.
Jenya
She had an issue with her hands for some time (she couldn't grip properly), her speech had become slurred, and she had fallen over a few times because of poor balance, including once on a commuter train when she chipped her tooth. Visits to the GP had not provided any solutions; her GP referred her to a neurological specialist. That day we attended the appointment together, we were utterly unprepared for the diagnosis.
Very early into the appointment, the professor told us that my mother was demonstrating classic symptoms of Motor Neurone Disease.
He was almost blasé in the way he said it, which made us think -- naively, it quickly became clear -- 'oh, he knows what the problem is, now he can help us to fix it'.
For 2 weeks my mother had a series of tests, which confirmed the original diagnosis of MND.
The professor was very matter-of-fact: there is no cure, most people die within 18 months to two years. The gravity of the diagnosis took some time to sink in. The fact that there was no way to fix it. The fact that it is always terminal. The fact that there was no hope. Mum collapsed. She had just been told she was going to die.
In the immediate aftermath of this diagnosis, we were both in shock.
I was devastated to contemplate losing my mum, but more than this, it was agonising to watch her try to come to terms with it. She was being told that not only would she die relatively soon, but that on her path to death, she would lose her ability to live her life in anything like the way she was used to, losing all independence, totally reliant on others for everything.
MND is a rare, rapidly progressive illness that affects 2 in 100,000 people in the UK every year. It damages the nervous system leading to weakness, muscle wasting, severe disability and death. Death usually occurs within 2-5 years after diagnosis, but half of those affected die within 12 months. The victim is eventually unable to move, speak, swallow and finally unable to breathe. The victim watches from within their own demise. It's a shocking, appalling disease.
My mother is Irina Shcherbyna, aged 46, and I am her only child, Jenya. Mum lived a very active life, working hard in banking, loved her work and colleagues, enjoying a good social life, keeping herself fit at the gym. When she was first diagnosed, she did not immediately appreciate how quickly she would lose all of that. She very quickly became too ill to work; her reluctance to let her friends witness her decline has led to her becoming very isolated; and she is not able to do anything unaided. Mum's symptoms right now are at the stage where she cannot form words, she cannot use her arms or hands, and she has zero strength in her legs. The impact of MND has had already a terrible physical effect, but the emotional impact is just as bad, if not worse. She is grieving for her own life.
After her diagnosis, I set myself to research MND and what drugs and medications are available to ameliorate the effects of the disease. I want her to live for as long as she can, as well as she can. The NHS provides only one medication, Riluzole, which has been available since the 1990s. This is an end of life medication which can extend her lifespan for two to three months. Internationally, I have discovered and imported a powerful antioxidant called Edavarone, and another called Ibudilast. After several months they are showing a positive impact.
Mum endures eighteen IV infusions per month, including Edvarone and Myers Push. She takes a host of vitamins and B12 injections, and 10 tablets a day of Ibudilast. It is Ibudilast which is holding back the bulbar symptoms, without which her ability to breathe would be limited to such an extent she may not still be with us.
Ibudilast costs us £10.00 per day. Edvarone, including nurses to administer the infusion, costs us £2,200 a month. We have recently been able to reduce these fees as Karen, a great friend, has insisted on being trained to administer IV drugs, which has provided us with an enormous saving. But still, the disease keeps advancing.
We have used all our savings paying for the medications we have found for Mum so far. Over the past few months we've been gradually coming to terms with what lies ahead, and we have seen the changes in Mum's condition. We have seen significant decline, but we have also seen some great improvements with the regime she is on.
Just as funds run low, we need to keep Mum supplied with the medications her current more stable health relies upon. I want to be able to prolong Mum's life for as long as possible, both so that we can have more time together and because I always live with the hope that one day the discovery will be made of a cure, something that can finally halt this disease. So many drugs trials are underway worldwide for MND/ ALS; hope is something we try not to get carried away with, but there is, at least, some there.
Therefore, and Mum does not know this yet, I am fundraising for her now. I am trying to raise the sum of £36,000 which is needed to pay for her to continue on Edavarone and Ibudilast, and would also allow us to seek out potentially life-changing stem cell therapy, which is available in the States from $35,000.
We have already spent £74,000 to get where we are today. The additional £36,000 should get us to beyond 2020 and into a stable situation where we can slow this disease down enough that Mum has a life to live, albeit with MND still ever present, but hopefully with her symptoms greatly reduced.
Even something as small as £10 will give my mum a day of her key drug, the one that keeps her breathing.
Thank you for taking the time to read this and I will post exactly how we do over the next few months, about any funds raised, and to show your how we have spent it. I want to show you my mum living with MND, not dying from it.
Thank you everyone; I am so grateful to those who have already helped, and I will be so grateful too to anyone else who is able to help us.
Jenya
Organizer
Irina Shcherbyna
Organizer
England