Despite the topic and my sincere condolences to the family concerned… this post gives me hope.
Why?
Because my NeuroInflammatory team won’t talk about my desire to discuss my death with dignity. I was dxd 22 years ago and I’m struggling now to face the future. A good pension and the prospect of a new home should be enough?
It isn’t
Why?
Because the same consultant who asked me to be quiet (in so many words) at the conference I suspect your colleague wanted to borrow your slide for… Wales?? 🏴 The consultant “looked after” a friend of mine in her final years and her death was terrible and I wanted to complain about the way she was treated in her end of days with lumbar punctures being administered weeks before her dying and junior doctors being overheard saying after one hour of unsuccessfully administering the procedure “Shame that didn’t work… my first one, better luck next time” and the three sauntered off and left the nurse attempting to move my friend who was on all fours and struggling to breath and her husband the other side of the curtain in tears when he saw her.
Me??? I don’t want that death, thanks all the same.
How I wish my Neuro’s had your empathy and desire to have difficult conversations
You ask if we agree, that people with MS should know that MS leads to severe complications. Yes, we should. I'm 58 and my condition is advancing. I wonder what my life might look like in ten years, twenty year (god forbid I last that long).
I should have an exit plan. The problem is that while I still have the capacity to enact such a plan (ie, not for much longer), I'm not ready to go. And by the time enacting the plan becomes desirable, I won't have the capacity. I will not implicate my partner. So I watch as euthanasia laws catch up, incrementally, with public sentiment. There's always Switzerland.
On that other matter, of treatment vs palliative care, my brother died of cancer seven years ago, four days after a junior doctor finally stopped begging him to try yet another treatment. He could have been gently, comfortably passing in a lovely hospice over a month or more, but no, the doctor just wouldn't give up -- and wouldn't let Jon give up hope. It was excruciating to watch.
I wholeheartedly agree that newly diagnosed patients should be aware of the long term possibilities.
The patient you describe who passed away yesterday echoes the situation my mum was in a few years ago. She died at 66. We were always told ‘people don’t die of MS’. I beg to differ.
Some may argue we now live in different times with DMTs on offer which were not available to her. This is true.
However, without the knowledge and experience of my mums MS journey we wouldn’t have had the courage to act swiftly when my teenage daughter was also diagnosed with MS.
She is now 9months post HSCT and doing well.
No guarantees for her future, we know that. But past experience made the decision much much easier for us all.
Thanks Gavin.👌 GP told us at least 4/5 years ago now to prepare the family for the ‘end’ due to regular repeat infections being treated at home only in Palliative stage.
We are still going however (wife is 51)…. I put this down to the PEG allowing nutrition and meds to go in, even if very unwell with an infection, and strong longevity genetics (grandparents lived to 100). We seem to have been lucky with antibiotics which don’t fully clear the infections but seem to do enough, before it bubbles back up.
The repeat cycle is tiring and repetative, but, we still try to live a moment between the infections if health / weather is willing, albeit a very small local restricted life.
So your tube map might actually need a reasonably long bit of line, even in the palliative stage. Unlike cancer, it seems if you are genetically fit to endure repeat episodes, and get the meds/nutrition going in, then you might well be able to continue, even when the medics read this as potentially end stage.
There is some hope in that, mixed with some sadness having to endure the down sides. But my wife is certainly an example of endurance in the face of very low odds.
Thanks so much for your posts. You are the ONLY voice in public discourse that we hear saying anything in this space. Both charities tend to wince away from this sadly, especially MS Society, despite our attempts.
So often I read on social media people advocating diet instead of DMT 'poison' because 'MS is not a death sentence'
After my sister died (of MS) her child angrily shouted through her tears "they told me people don't die of MS" all I could do was say they'd told me the same.
There we were, unprepared, not having really understood it was the end until way too late.
It's been my experience in the 20 years since that doctors speak in euphemisms and hints. We need to be more comfortable talking about death plainly and clearly. It's part of life.
It's a constant worry to me how my end,likely from MS, will be managed. I try to talk about how my sister was affected with my healthcare professionals, hoping they will engage and discuss what they would be able to do and what choices I and finally my husband would have about treatment to make me more comfortable but they won't talk about it.I can't decide if I don't have the information and I can't make my wishes known in advance It's terrifying and cruel.
If I could plan for this now it would be easier to enjoy my current level of ability. I appreciate not everyone is the same.
I agree. I stopped commenting on an MS FB group when I said my aunt had died of MS. Yes, people do die. If my aunt had not been bedbound with MS, she would not have died.
I have made my wishes clear. When my MS is advanced, I will be travelling to Switzerland to end my life pain free and with dignity.
I read with interest that one of the MS charities wanted to airbrush advanced MS/terminal phase from your tube map. I remember vividly coming across your map when I was fairly new to having MS. I've valued your "real talk" and the charities could learn that lesson.
Your compassion plus candour is a winning combination. I hope the next generation of MS docs can follow your example as you followed your Prof Bothwell.
Awareness is important. But how to translate that into my reality? Do I plan for a death in two years, ten years or longer? I am 48 years old and 25 years post dx with two school aged children. How to live with this hanging over me is the question?
Thankyou for the interesting article. I found it quite emotive. Do think their should be more discussion or awareness around the terminal part of MS. I am kind of knew to MS and would like as much info as possible.
However when i do try to talk my family and neuro they are dismissive as say "i am no where near that stage". Which is true but I would like to talk about it all the same.
Thankyou again for your article and condolences to your patient and family.
Oh wow this is incredibly hard to read. First - you have my heart, loss of your patient is incredibly hard….
Having lived in England for many years, I spent loads of time on the tube & never felt it was a straight line to unpleasant places ….. wish your tube diagram showed other stops along the way and not the straight line end point/ detours to other horrible stops….. I’m gonna go overdose on hope now 💕
PS: an update on the Car-T trials for autoimmune diseases (there are many happening now for MS, MG, lupus) might be a nice hope & science update. I am tremendously hopeful that cellular therapy will be a game changer…..
I woke up this morning read this and cried. As you know I am so very grateful for all your knowledge and information on this dreadful disease but we could go out today ( those of us who can get out!) And get hit by a bus!! Don't you think we realise Professor we think about this every single minute of every day ? We are scared we look at our loved ones and each time out hearts break a little more.but we still need to see the joy however little we have and be thankful that most of us have known in advance that we have M.S some people are taken away from their loved ones unable to tell them how much they love them and will miss being with them ( maybe a bonus!!!!!) Of this horrible illness We all hope one day we will wake up to the news that a cure has been found. Am I burying my head in the same Maybe?? But after your awful accident did you loose hope? Did your loved ones We all need hope Professor otherwise what's the point ? Please excuse if you find my comments on anyway negative to anyone they are not meant to be. I just want people to keep hoping
I am full of hope, which is why I am talking about curing MS. I think a small minority of pwMS treated early with immune reconstitution therapies may be cured of having MS. Not many people like me talking about the C-word. However, if you can't balance the risks of having MS against the frontloading of risk with Alemtuzumab or AHSCT, how can you make an informed decision?
Unfortunately Lemtrada and AHSCT weren't available to me when I was Dx'd. The doctors wouldn't allow AHSCT, and I couldn't afford medical tourism. Also, Lemtrada and Mavenclad weren't available until 2014/2019 respectively.
We need to be able to name it though Prof G. Use the words. Even in an article where you challenge the stigma about discussing dying you use the term ‘passed on’.
If we can’t normalise dying we can’t make thinking about it more acceptable to our patients, their families, our colleagues and ourselves.
Have you read Kathryn Mannix ‘with the end in mind’? I think you would like it.
This patient was so young and perhaps even more poignantly their last years sound incredibly challenging. I hope they were helped to find some joy in those difficult times and people focused on what mattered to them as an individual and gave them choices about all those admissions and antibiotics for infections. Goal setting and hope are crucial but so is honesty and options.
Thank you for sharing. You are going to this persons funeral because of the decent caring human being that you are. You were very lucky to do your early training with another decent caring human being, who, its sounds like just nurtured those qualities in you that were already there. It is something inate and not something that can be taught, however is sadly lacking in many newer MCPs. Your patients are lucky to have you and hopefully those that are your juniors, will be influenced by you in a positive way, will be able to get the best treatment to patients at an early stage by inverting the pyramid. And those in your research group will build on your passion to find a cure, will push for the research into EBV and gets those much needed vaccines. My Nana lived with MS for 25 years until in her mid 70's she went spms, she eventually died of a chest infection in her 80's. She said she didn't want any more treatment, my mum and her brother had to stop the medics putting up any more iv ABs and fight for her right to say enough is enough. As you will know sometimes patients take that decision but younger HCP's can be scared of this, they think they should do everything and more rather than just allowing the person to die with dignity. As a scientist I do find your articles very interesting as does my no scientist partner, i find out so much from you that I can't get access to now I am no longer an academic. My only concern is now I have hit 60,the medical world treats you differently forgetting you could have many years ahead, just because treatments are less effective, that doesn't mean they are ineffective, and we should not be ruled out because of a number. We need to remember that survival rates stats are always out of day by the sheer way they were collated. This of course, for me, may not be relevant with my late diagnosed cancer (not my fault), my hope is that I get many more years before cancer becomes chronic and this means my MS takes a back seat, its just about priorities. Determination and resilience have been the key for me, or am I just plain stubborn? It got me my cancer diagnosis, it got me through treatment and hopefully will see me into a better life, back to my old MS self, which would be good. Take care and remember to be gentle on yourself, keep being that caring decent human being that you are
My aunt died of MS in the 1980s. I know many people still say you can't die of MS, but the reality is, she would be alive if she had not had MS. MS does and will still kill people. There are three other of my family members with MS and when we were diagnosed in the late 80s, and early 90s, we did think we would die within 10 years. There were no treatments whatsover.
We have been lucky that we have avoided the immobility and multiple infections that hasten death.
It is a time for reflection.
You have helped so many people with MS, fighting for the best DMTs. You will have stopped their disease progression and saved thousands from an early death. But to lose one of your patients is sad. I send my condolences to the family and you.
“They had end-stage MS and had been essentially bed-bound for the last 2-3 years with severe cognitive impairment and requiring 24-hour care.” My aunt was in a similar position in the early 1990s, but was in her early 50s. This story may come as a shock to those newly diagnosed / fairly newly diagnosed who visit MS websites showing happy MSers in wheelchairs or making bold claims that MS has a minimal impact on life expectancy etc., or see that ridiculous claim that “I have MS, but MS doesn’t have me”.
It’s a sad state of affairs in 2024 that some relatively young (40s, 50s) MSers are having to think about assisted suicide, or a one way ticket to Dignitas in Switzerland. We’ve had interferons
since the mid 1990s and Natalizumab since c.mid 2000s, yet over time these drugs only seem to slow the underlying neurodegeneration which eventually leads to a such a cruel end for some.
The MS research world should spend some time reflecting. Stuck in a rut with no signs of the ever elusive neuroprotective therapies, remyelination therapies, or neurorestorative therapies making it to market. The game changing therapies are always “10 years away”. The story above makes me angry on so many fronts. No one should have to live or die like this. The advances made in MS research and treatment appear to be over egged when you come across these heartbreaking stories.
I am glad you wrote this. It is important to say this repeatedly and loudly. Some may find the comment harsh since the DMT's do "something" positive (along with a host of potentially nasty side effects) but, ultimately, what you write has merit: the treatments are not great and results over-hyped.
Who ever these people are who don't like to hear you speaking about a cure please don't listen to their comments if they were in the same position as myself and the thousands of others and our loved ones who live every day with the dark cloud of M.S hovering over us maybe we could tell them of the hope yourself and others with your opinions give to us all do they not understand we are so buoyed.by all the stories ( so what if they are stories) and joy they give so many of us. So please continue working towards finding a cure how wonderful would that be? So for all of us please continue your wonderful work.And to all of those who don't like talking about a cure look back there was no "cure" for Aids years ago it was a death sentence now thousands of people are living well with this illness let us get to the point at of KNOWING! we at least not get any worse that would be wonderful so instead of doubting let's move forward towards this
My Mum is 78 , had MS for 42 years and has been bed bound and looked after at home for 4 years. At first glance this sounds awful but trust me it’s not. Yeh mum had to give up some things she enjoyed like bingo and smoking but she has replaced them with reading, tv, reciting and dictating poems, dictating an autobiography, spending precious time with her children and grandchildren and now she’s about to become a great grandmother and is delighted. Mum
Loves overlooking the garden , watching the birds and visits from the squirrels. Mum has a catheter and never had an infection other than covid which she saw off quickly ! It’s not life limiting for everyone. There is hope. Mum
Is sharp as a pin and enjoys what she can. Hang in there all you MS warriors I salute you.
Despite the topic and my sincere condolences to the family concerned… this post gives me hope.
Why?
Because my NeuroInflammatory team won’t talk about my desire to discuss my death with dignity. I was dxd 22 years ago and I’m struggling now to face the future. A good pension and the prospect of a new home should be enough?
It isn’t
Why?
Because the same consultant who asked me to be quiet (in so many words) at the conference I suspect your colleague wanted to borrow your slide for… Wales?? 🏴 The consultant “looked after” a friend of mine in her final years and her death was terrible and I wanted to complain about the way she was treated in her end of days with lumbar punctures being administered weeks before her dying and junior doctors being overheard saying after one hour of unsuccessfully administering the procedure “Shame that didn’t work… my first one, better luck next time” and the three sauntered off and left the nurse attempting to move my friend who was on all fours and struggling to breath and her husband the other side of the curtain in tears when he saw her.
Me??? I don’t want that death, thanks all the same.
How I wish my Neuro’s had your empathy and desire to have difficult conversations
Condolences, Prof G.
You ask if we agree, that people with MS should know that MS leads to severe complications. Yes, we should. I'm 58 and my condition is advancing. I wonder what my life might look like in ten years, twenty year (god forbid I last that long).
I should have an exit plan. The problem is that while I still have the capacity to enact such a plan (ie, not for much longer), I'm not ready to go. And by the time enacting the plan becomes desirable, I won't have the capacity. I will not implicate my partner. So I watch as euthanasia laws catch up, incrementally, with public sentiment. There's always Switzerland.
On that other matter, of treatment vs palliative care, my brother died of cancer seven years ago, four days after a junior doctor finally stopped begging him to try yet another treatment. He could have been gently, comfortably passing in a lovely hospice over a month or more, but no, the doctor just wouldn't give up -- and wouldn't let Jon give up hope. It was excruciating to watch.
I wholeheartedly agree that newly diagnosed patients should be aware of the long term possibilities.
The patient you describe who passed away yesterday echoes the situation my mum was in a few years ago. She died at 66. We were always told ‘people don’t die of MS’. I beg to differ.
Some may argue we now live in different times with DMTs on offer which were not available to her. This is true.
However, without the knowledge and experience of my mums MS journey we wouldn’t have had the courage to act swiftly when my teenage daughter was also diagnosed with MS.
She is now 9months post HSCT and doing well.
No guarantees for her future, we know that. But past experience made the decision much much easier for us all.
Thanks Gavin.👌 GP told us at least 4/5 years ago now to prepare the family for the ‘end’ due to regular repeat infections being treated at home only in Palliative stage.
We are still going however (wife is 51)…. I put this down to the PEG allowing nutrition and meds to go in, even if very unwell with an infection, and strong longevity genetics (grandparents lived to 100). We seem to have been lucky with antibiotics which don’t fully clear the infections but seem to do enough, before it bubbles back up.
The repeat cycle is tiring and repetative, but, we still try to live a moment between the infections if health / weather is willing, albeit a very small local restricted life.
So your tube map might actually need a reasonably long bit of line, even in the palliative stage. Unlike cancer, it seems if you are genetically fit to endure repeat episodes, and get the meds/nutrition going in, then you might well be able to continue, even when the medics read this as potentially end stage.
There is some hope in that, mixed with some sadness having to endure the down sides. But my wife is certainly an example of endurance in the face of very low odds.
Thanks so much for your posts. You are the ONLY voice in public discourse that we hear saying anything in this space. Both charities tend to wince away from this sadly, especially MS Society, despite our attempts.
Mark & Portia ❤️
Agree.
So often I read on social media people advocating diet instead of DMT 'poison' because 'MS is not a death sentence'
After my sister died (of MS) her child angrily shouted through her tears "they told me people don't die of MS" all I could do was say they'd told me the same.
There we were, unprepared, not having really understood it was the end until way too late.
It's been my experience in the 20 years since that doctors speak in euphemisms and hints. We need to be more comfortable talking about death plainly and clearly. It's part of life.
It's a constant worry to me how my end,likely from MS, will be managed. I try to talk about how my sister was affected with my healthcare professionals, hoping they will engage and discuss what they would be able to do and what choices I and finally my husband would have about treatment to make me more comfortable but they won't talk about it.I can't decide if I don't have the information and I can't make my wishes known in advance It's terrifying and cruel.
If I could plan for this now it would be easier to enjoy my current level of ability. I appreciate not everyone is the same.
I agree. I stopped commenting on an MS FB group when I said my aunt had died of MS. Yes, people do die. If my aunt had not been bedbound with MS, she would not have died.
I have made my wishes clear. When my MS is advanced, I will be travelling to Switzerland to end my life pain free and with dignity.
I wish I could afford Dignitas. Only have the option we don’t like thinking about or mentioning. Oh well it’s only MS, not many give a toss about it
I read with interest that one of the MS charities wanted to airbrush advanced MS/terminal phase from your tube map. I remember vividly coming across your map when I was fairly new to having MS. I've valued your "real talk" and the charities could learn that lesson.
Your compassion plus candour is a winning combination. I hope the next generation of MS docs can follow your example as you followed your Prof Bothwell.
Awareness is important. But how to translate that into my reality? Do I plan for a death in two years, ten years or longer? I am 48 years old and 25 years post dx with two school aged children. How to live with this hanging over me is the question?
Thankyou for the interesting article. I found it quite emotive. Do think their should be more discussion or awareness around the terminal part of MS. I am kind of knew to MS and would like as much info as possible.
However when i do try to talk my family and neuro they are dismissive as say "i am no where near that stage". Which is true but I would like to talk about it all the same.
Thankyou again for your article and condolences to your patient and family.
Oh wow this is incredibly hard to read. First - you have my heart, loss of your patient is incredibly hard….
Having lived in England for many years, I spent loads of time on the tube & never felt it was a straight line to unpleasant places ….. wish your tube diagram showed other stops along the way and not the straight line end point/ detours to other horrible stops….. I’m gonna go overdose on hope now 💕
PS: an update on the Car-T trials for autoimmune diseases (there are many happening now for MS, MG, lupus) might be a nice hope & science update. I am tremendously hopeful that cellular therapy will be a game changer…..
I woke up this morning read this and cried. As you know I am so very grateful for all your knowledge and information on this dreadful disease but we could go out today ( those of us who can get out!) And get hit by a bus!! Don't you think we realise Professor we think about this every single minute of every day ? We are scared we look at our loved ones and each time out hearts break a little more.but we still need to see the joy however little we have and be thankful that most of us have known in advance that we have M.S some people are taken away from their loved ones unable to tell them how much they love them and will miss being with them ( maybe a bonus!!!!!) Of this horrible illness We all hope one day we will wake up to the news that a cure has been found. Am I burying my head in the same Maybe?? But after your awful accident did you loose hope? Did your loved ones We all need hope Professor otherwise what's the point ? Please excuse if you find my comments on anyway negative to anyone they are not meant to be. I just want people to keep hoping
I am full of hope, which is why I am talking about curing MS. I think a small minority of pwMS treated early with immune reconstitution therapies may be cured of having MS. Not many people like me talking about the C-word. However, if you can't balance the risks of having MS against the frontloading of risk with Alemtuzumab or AHSCT, how can you make an informed decision?
Unfortunately Lemtrada and AHSCT weren't available to me when I was Dx'd. The doctors wouldn't allow AHSCT, and I couldn't afford medical tourism. Also, Lemtrada and Mavenclad weren't available until 2014/2019 respectively.
We need to be able to name it though Prof G. Use the words. Even in an article where you challenge the stigma about discussing dying you use the term ‘passed on’.
If we can’t normalise dying we can’t make thinking about it more acceptable to our patients, their families, our colleagues and ourselves.
Have you read Kathryn Mannix ‘with the end in mind’? I think you would like it.
This patient was so young and perhaps even more poignantly their last years sound incredibly challenging. I hope they were helped to find some joy in those difficult times and people focused on what mattered to them as an individual and gave them choices about all those admissions and antibiotics for infections. Goal setting and hope are crucial but so is honesty and options.
We hope for the best but we plan for the worst.
Thank you for sharing. You are going to this persons funeral because of the decent caring human being that you are. You were very lucky to do your early training with another decent caring human being, who, its sounds like just nurtured those qualities in you that were already there. It is something inate and not something that can be taught, however is sadly lacking in many newer MCPs. Your patients are lucky to have you and hopefully those that are your juniors, will be influenced by you in a positive way, will be able to get the best treatment to patients at an early stage by inverting the pyramid. And those in your research group will build on your passion to find a cure, will push for the research into EBV and gets those much needed vaccines. My Nana lived with MS for 25 years until in her mid 70's she went spms, she eventually died of a chest infection in her 80's. She said she didn't want any more treatment, my mum and her brother had to stop the medics putting up any more iv ABs and fight for her right to say enough is enough. As you will know sometimes patients take that decision but younger HCP's can be scared of this, they think they should do everything and more rather than just allowing the person to die with dignity. As a scientist I do find your articles very interesting as does my no scientist partner, i find out so much from you that I can't get access to now I am no longer an academic. My only concern is now I have hit 60,the medical world treats you differently forgetting you could have many years ahead, just because treatments are less effective, that doesn't mean they are ineffective, and we should not be ruled out because of a number. We need to remember that survival rates stats are always out of day by the sheer way they were collated. This of course, for me, may not be relevant with my late diagnosed cancer (not my fault), my hope is that I get many more years before cancer becomes chronic and this means my MS takes a back seat, its just about priorities. Determination and resilience have been the key for me, or am I just plain stubborn? It got me my cancer diagnosis, it got me through treatment and hopefully will see me into a better life, back to my old MS self, which would be good. Take care and remember to be gentle on yourself, keep being that caring decent human being that you are
This is very sad.
My aunt died of MS in the 1980s. I know many people still say you can't die of MS, but the reality is, she would be alive if she had not had MS. MS does and will still kill people. There are three other of my family members with MS and when we were diagnosed in the late 80s, and early 90s, we did think we would die within 10 years. There were no treatments whatsover.
We have been lucky that we have avoided the immobility and multiple infections that hasten death.
It is a time for reflection.
You have helped so many people with MS, fighting for the best DMTs. You will have stopped their disease progression and saved thousands from an early death. But to lose one of your patients is sad. I send my condolences to the family and you.
A very sad story.
“They had end-stage MS and had been essentially bed-bound for the last 2-3 years with severe cognitive impairment and requiring 24-hour care.” My aunt was in a similar position in the early 1990s, but was in her early 50s. This story may come as a shock to those newly diagnosed / fairly newly diagnosed who visit MS websites showing happy MSers in wheelchairs or making bold claims that MS has a minimal impact on life expectancy etc., or see that ridiculous claim that “I have MS, but MS doesn’t have me”.
It’s a sad state of affairs in 2024 that some relatively young (40s, 50s) MSers are having to think about assisted suicide, or a one way ticket to Dignitas in Switzerland. We’ve had interferons
since the mid 1990s and Natalizumab since c.mid 2000s, yet over time these drugs only seem to slow the underlying neurodegeneration which eventually leads to a such a cruel end for some.
The MS research world should spend some time reflecting. Stuck in a rut with no signs of the ever elusive neuroprotective therapies, remyelination therapies, or neurorestorative therapies making it to market. The game changing therapies are always “10 years away”. The story above makes me angry on so many fronts. No one should have to live or die like this. The advances made in MS research and treatment appear to be over egged when you come across these heartbreaking stories.
I am glad you wrote this. It is important to say this repeatedly and loudly. Some may find the comment harsh since the DMT's do "something" positive (along with a host of potentially nasty side effects) but, ultimately, what you write has merit: the treatments are not great and results over-hyped.
Who ever these people are who don't like to hear you speaking about a cure please don't listen to their comments if they were in the same position as myself and the thousands of others and our loved ones who live every day with the dark cloud of M.S hovering over us maybe we could tell them of the hope yourself and others with your opinions give to us all do they not understand we are so buoyed.by all the stories ( so what if they are stories) and joy they give so many of us. So please continue working towards finding a cure how wonderful would that be? So for all of us please continue your wonderful work.And to all of those who don't like talking about a cure look back there was no "cure" for Aids years ago it was a death sentence now thousands of people are living well with this illness let us get to the point at of KNOWING! we at least not get any worse that would be wonderful so instead of doubting let's move forward towards this
My Mum is 78 , had MS for 42 years and has been bed bound and looked after at home for 4 years. At first glance this sounds awful but trust me it’s not. Yeh mum had to give up some things she enjoyed like bingo and smoking but she has replaced them with reading, tv, reciting and dictating poems, dictating an autobiography, spending precious time with her children and grandchildren and now she’s about to become a great grandmother and is delighted. Mum
Loves overlooking the garden , watching the birds and visits from the squirrels. Mum has a catheter and never had an infection other than covid which she saw off quickly ! It’s not life limiting for everyone. There is hope. Mum
Is sharp as a pin and enjoys what she can. Hang in there all you MS warriors I salute you.
❤️