Well said. Even before I was diagnosed with MS myself, we had a family member with it die from the disease and another have very few issues and live a long life so I always knew of it's potential to go both ways like many diseases and illnesses. After I was diagnosed, anyone in the MS world I spoke to was very insistent MS doesn't kill you. It's not that I was worried what path my own disease would take, I was quite calm in terms of knowing that access to amazing DMTs now (even if we have to fight for that right) made dying from the disease rare, but to me it seemed to deny the reality people with end-stage MS are living and leave them without the help they and their families deserve and should receive, such as preparing for what should happen if they became more ill.
I had many people say to me that my family member didn't die from MS, it was pneumonia but that's like saying another didn't die from cancer, it was the morphine used to manage their pain or the infection they caught. Talking about death and MS needs to become less of a taboo for sure. I don't know if I'm unusual in that I never panicked after my diagnosis, or that experience with family just made me realise it was like any other disease and could go both ways.
This is a brilliant topic. One which is so often avoided. The whole ‘you die with MS, not from it’ statement is more frequently the case than previously, but is not true for us all. People living with Advanced MS, and severely disabled often know they are likely to die of MS or want to ensure they have the means to avoid a horrific death. I am such a person, my reaction to most DMTs was adverse. This meant for the majority of my 25 years with MS I’ve been unprotected from relapses.
Today this means I am a full time wheelchair user. Today I can transfer with some difficulty. Tomorrow that may change. Today I can see, eat and speak, albeit at times with problems, tomorrow I may not. Today I mostly manage to self care, with significant assistance from my spouse. Tomorrow I may need more personal care. I have relatively mild cognitive deficits today, tomorrow these are likely to affect my life more. Today I have enjoyment from life, tomorrow I may not.
Eventually I may want to not live in this body. I have an Advanced Directive, copies of which are lodged with my GP and hospital. I have discussed my wishes with my family and friends. I am a member of Dignity in Dying and dearly wish to see assisted suicide become UK law.
I am so glad you have written this Selfie. It is needful. Many of us are living with early stage MS, and are on the most wonderful DMTs. I am glad that is possible and that death due to MS has become a relatively rare occurrence. For me it is probably a likely future.
This is a fantastic resource. Thank you for not sugar-coating death. As a society we tend to treat it as something to avoid discussing. I have very fit 74 year old Mother and baulk at approaching her Will or wishes. Awful. I don't practice what I preach. I have had MS for over a decade, with one dramatic episode (with Brown-Sequard) and then nothing much until recently. No significant activity, just recovery and fatigue. I am not on a DMT as little activity (head in the sand or general denial, not sure). Your comments above, looking at MS and actual cause of death is fascinating, makes me consider I should get more clued up on DMT's as it been very much my decision not to take them and see how my MS progresses. A very personal choice. I am 44 next month, had a child at 39 (geriatric Mum) and have to say sleep deprivation from a baby/child was killer. I had to just get on with it. I am lucky I can have that choice to dig in, I know others with MS were told not to have kids (we are talking decades ago) and I can see why HCP would advise such, just on the fatigue issue. Let's face it life is harder than death for the individual, its just those you love who you leave behind who have the tough decisions and loss.
Very good article, Dr Giovanni. For many years I was very disturbed and fearful of death and the issues surrounding it. Ironically for someone who wanted to get into a career related to biology and medicine, I was petrified of existential issues related to almost everything I would be doing in work. But after going through EOL experiences with both parents, and being there for them both at the end, I had a very different perspective about death and my own eventuality. Good and bad followed my awakening—as is with all storms clearing and light shining on all exposed surfaces—I had gone from being scared of finality to being scared of not being prepared. At first I thought I had enough time to research my options on my own. But a few horribly damaging relapses ended my independence, and I ended up in a nursing facility without any assistance nor any protection for myself, my family, or my possessions and assets. Now that my MS disability is just getting worse each time I get an infection—no more relapse/remission—I’m really worried that I may have a lot less time than I think. I wish I had some idea where I am in the continuum, but my neurologist refuses to even apply an EDSS score to my condition. So it’s just more difficult and stressful.
Thanks for the note. We have developed our own line EDSS calculator, which takes between 2 and 5 minutes to complete. It will at least give you a reasonable proxy of your EDSS score.
I used to be a conveyancing solicitor and offered free wills with every property transaction. It's amazing how avoidant some people are. A couple with a four year-old child buying their first home didn't want to write wills because it meant they might die. Well that's something I could guarantee would happen!
As a family my family have not shied away from the topic. After my dad died we perhaps discussed our wishes a bit more. Mum wants to live until she is 80 and no longer. I think she may change her mind by then as she remains incredibly fit and healthy and at 73 divides her time between the gym, work, volunteering and gardening. We joke about her booking a ticket to Switzerland though. I have not got much further in expressing my wishes beyond saying I want to be disposed of in the most ecologically sound manner possible.
The difficulty comes with being in different countries though. My mother and brother are in New Zealand and I am in the UK. Mum has signed an Enduring Power of Attorney which gives my brother power over care decisions in the event she is unable to make them herself. I cannot be named as I live abroad, however our feelings are more aligned on these matters. My brother is the sentimental one in the family and we fear he may not make the decisions we think are "right".
I am currently unattached and have left everything to my brother in my will. Should he live long enough (he doesn't take good care of himself so although he is younger we can't take this for granted!) it may fall to him to make decisions relating to my care one day too. I suppose I should consider an advance directive.
Should be no different to the rest of the population unless they have had recent steroids or are on an anti-CD20 therapy. Both of these associated with a right shift of the curve and likely to worsen the prognosis.
WRT to survival rates I agree but I actually I should have been more precise as my thoughts are around a much more specific element: intubated patients often struggle to recover completely (that was known even before covid) and I assume many days of intubation would be very hard on an already damaged CNS. So even if you survive, the lasting additional damage might be punishing. At some point, that would push me to a DNI.
The critical care of COVID-19 is improving all the time so this is a moving target. I would only go for DNI if I was very disabled and had a very poor quality of life. People with MS are generally quite healthy outside of them having MS so these decisions need to be taken very carefully.
Thanks for addressing this important topic. Its becoming more unusual in recent years for people to say dying, death, dead, instead its passing on, passed away, and even just 'passed' It is an increasing taboo; ironic in the midst of a pandemic.
It is a can of worms, and not only in the world of MS. Personally I would not use the word Terminal. Many years ago I was told this by an experienced Oncology nurse and she was right. It wasn't about death denial simply about language in situations that are anything but simple. You describe a patient in end stage disease, a more nuanced but specific yet gentler description of the reality. Terminal describes areas within an airport or bus station, and I'd leave it there. Just my thoughts.
Its great that you have written about this difficult subject. Some of us with MS are really supporting you on this, but many will not be anywhere near it. As for families .. you may find it's like trying to nail jelly to a wall.
Thanks for this newsletter. I look forward to the ones on Dignitas and assisted dying: whilst I hope that choice is a long way off it is one I would wish to make for myself when the time is right. It's time the laws changed to mean people don't have to travel abroad, and reduce the risk of family members being prosecuted for travelling with them.
Thanks for posting this. I've recently read 33 Meditations on Death by David Jarrett which despite its title contains some laugh out loud moments. Certainly acts as a spur to get your affairs in order, including Advanced Directive and letter to family about being looked after in later stages, if needed.
Well said. Even before I was diagnosed with MS myself, we had a family member with it die from the disease and another have very few issues and live a long life so I always knew of it's potential to go both ways like many diseases and illnesses. After I was diagnosed, anyone in the MS world I spoke to was very insistent MS doesn't kill you. It's not that I was worried what path my own disease would take, I was quite calm in terms of knowing that access to amazing DMTs now (even if we have to fight for that right) made dying from the disease rare, but to me it seemed to deny the reality people with end-stage MS are living and leave them without the help they and their families deserve and should receive, such as preparing for what should happen if they became more ill.
I had many people say to me that my family member didn't die from MS, it was pneumonia but that's like saying another didn't die from cancer, it was the morphine used to manage their pain or the infection they caught. Talking about death and MS needs to become less of a taboo for sure. I don't know if I'm unusual in that I never panicked after my diagnosis, or that experience with family just made me realise it was like any other disease and could go both ways.
This is a brilliant topic. One which is so often avoided. The whole ‘you die with MS, not from it’ statement is more frequently the case than previously, but is not true for us all. People living with Advanced MS, and severely disabled often know they are likely to die of MS or want to ensure they have the means to avoid a horrific death. I am such a person, my reaction to most DMTs was adverse. This meant for the majority of my 25 years with MS I’ve been unprotected from relapses.
Today this means I am a full time wheelchair user. Today I can transfer with some difficulty. Tomorrow that may change. Today I can see, eat and speak, albeit at times with problems, tomorrow I may not. Today I mostly manage to self care, with significant assistance from my spouse. Tomorrow I may need more personal care. I have relatively mild cognitive deficits today, tomorrow these are likely to affect my life more. Today I have enjoyment from life, tomorrow I may not.
Eventually I may want to not live in this body. I have an Advanced Directive, copies of which are lodged with my GP and hospital. I have discussed my wishes with my family and friends. I am a member of Dignity in Dying and dearly wish to see assisted suicide become UK law.
I am so glad you have written this Selfie. It is needful. Many of us are living with early stage MS, and are on the most wonderful DMTs. I am glad that is possible and that death due to MS has become a relatively rare occurrence. For me it is probably a likely future.
This is a fantastic resource. Thank you for not sugar-coating death. As a society we tend to treat it as something to avoid discussing. I have very fit 74 year old Mother and baulk at approaching her Will or wishes. Awful. I don't practice what I preach. I have had MS for over a decade, with one dramatic episode (with Brown-Sequard) and then nothing much until recently. No significant activity, just recovery and fatigue. I am not on a DMT as little activity (head in the sand or general denial, not sure). Your comments above, looking at MS and actual cause of death is fascinating, makes me consider I should get more clued up on DMT's as it been very much my decision not to take them and see how my MS progresses. A very personal choice. I am 44 next month, had a child at 39 (geriatric Mum) and have to say sleep deprivation from a baby/child was killer. I had to just get on with it. I am lucky I can have that choice to dig in, I know others with MS were told not to have kids (we are talking decades ago) and I can see why HCP would advise such, just on the fatigue issue. Let's face it life is harder than death for the individual, its just those you love who you leave behind who have the tough decisions and loss.
Great post. The only certain thing in life is that eventually we will all die!
and taxes 😉
Very good article, Dr Giovanni. For many years I was very disturbed and fearful of death and the issues surrounding it. Ironically for someone who wanted to get into a career related to biology and medicine, I was petrified of existential issues related to almost everything I would be doing in work. But after going through EOL experiences with both parents, and being there for them both at the end, I had a very different perspective about death and my own eventuality. Good and bad followed my awakening—as is with all storms clearing and light shining on all exposed surfaces—I had gone from being scared of finality to being scared of not being prepared. At first I thought I had enough time to research my options on my own. But a few horribly damaging relapses ended my independence, and I ended up in a nursing facility without any assistance nor any protection for myself, my family, or my possessions and assets. Now that my MS disability is just getting worse each time I get an infection—no more relapse/remission—I’m really worried that I may have a lot less time than I think. I wish I had some idea where I am in the continuum, but my neurologist refuses to even apply an EDSS score to my condition. So it’s just more difficult and stressful.
Thanks for the note. We have developed our own line EDSS calculator, which takes between 2 and 5 minutes to complete. It will at least give you a reasonable proxy of your EDSS score.
https://outcomes.clinicspeak.com/en/#!/welcome
Thank you, Prof Giovannoni
I used to be a conveyancing solicitor and offered free wills with every property transaction. It's amazing how avoidant some people are. A couple with a four year-old child buying their first home didn't want to write wills because it meant they might die. Well that's something I could guarantee would happen!
As a family my family have not shied away from the topic. After my dad died we perhaps discussed our wishes a bit more. Mum wants to live until she is 80 and no longer. I think she may change her mind by then as she remains incredibly fit and healthy and at 73 divides her time between the gym, work, volunteering and gardening. We joke about her booking a ticket to Switzerland though. I have not got much further in expressing my wishes beyond saying I want to be disposed of in the most ecologically sound manner possible.
The difficulty comes with being in different countries though. My mother and brother are in New Zealand and I am in the UK. Mum has signed an Enduring Power of Attorney which gives my brother power over care decisions in the event she is unable to make them herself. I cannot be named as I live abroad, however our feelings are more aligned on these matters. My brother is the sentimental one in the family and we fear he may not make the decisions we think are "right".
I am currently unattached and have left everything to my brother in my will. Should he live long enough (he doesn't take good care of himself so although he is younger we can't take this for granted!) it may fall to him to make decisions relating to my care one day too. I suppose I should consider an advance directive.
Nice post
Very good to hear about those topics. Very often they get ignored - sort of like MS is not cancer so what do you mean, assisted suicide?
Good reminder, I should review my advanced directive. Mine very clearly says palliative only unless there is a very high chance of full recovery.
Related, any view on the chances of recovery for mildly disabled PwMS in case of intubation for severe covid?
Should be no different to the rest of the population unless they have had recent steroids or are on an anti-CD20 therapy. Both of these associated with a right shift of the curve and likely to worsen the prognosis.
WRT to survival rates I agree but I actually I should have been more precise as my thoughts are around a much more specific element: intubated patients often struggle to recover completely (that was known even before covid) and I assume many days of intubation would be very hard on an already damaged CNS. So even if you survive, the lasting additional damage might be punishing. At some point, that would push me to a DNI.
The critical care of COVID-19 is improving all the time so this is a moving target. I would only go for DNI if I was very disabled and had a very poor quality of life. People with MS are generally quite healthy outside of them having MS so these decisions need to be taken very carefully.
Thanks for addressing this important topic. Its becoming more unusual in recent years for people to say dying, death, dead, instead its passing on, passed away, and even just 'passed' It is an increasing taboo; ironic in the midst of a pandemic.
It is a can of worms, and not only in the world of MS. Personally I would not use the word Terminal. Many years ago I was told this by an experienced Oncology nurse and she was right. It wasn't about death denial simply about language in situations that are anything but simple. You describe a patient in end stage disease, a more nuanced but specific yet gentler description of the reality. Terminal describes areas within an airport or bus station, and I'd leave it there. Just my thoughts.
Its great that you have written about this difficult subject. Some of us with MS are really supporting you on this, but many will not be anywhere near it. As for families .. you may find it's like trying to nail jelly to a wall.
Thanks for this newsletter. I look forward to the ones on Dignitas and assisted dying: whilst I hope that choice is a long way off it is one I would wish to make for myself when the time is right. It's time the laws changed to mean people don't have to travel abroad, and reduce the risk of family members being prosecuted for travelling with them.
I apologize I spelled your name wrong—I was typing too fast.
Thanks for posting this. I've recently read 33 Meditations on Death by David Jarrett which despite its title contains some laugh out loud moments. Certainly acts as a spur to get your affairs in order, including Advanced Directive and letter to family about being looked after in later stages, if needed.