Thank you for highlighting the issues faced by carers - please remember many of us are our own carers (sadly being diagnosed with MS means you may never find someone prepared to take that journey with you and/or you find out whether your spouse really meant 'in sickness as in health')
As well as being the person with MS and trying to be our own carer, we may also have elderly parents with their own health needs including dementia that we are also trying to support and manage their multiple interactions with the same institutions that should be but are failing to support us - NHS, social care, DWP etc etc
And that is not to forget the many young/child carers who at best may be partially shielded if the 'healthy' parent remains but who are often left to try and navigate the same systems on their own
In the spirit of Winie the Pooh, I am more than happy to be referred to as Piglet - though secretly inside I remain Tigger and refuse to be Eeyore :)
Life, is not about how fast you run or how high you climb, but how well you bounce :)
A treatment to stop unrelenting disability progression would provide the greatest relief to the MSer / their carers / their families. It would also reduce demands on neurology departments. I met up with an old work friend (in his 70s) with Parkinson’s in the week. He has deteriorated a lot since I last saw him and his wife is his full time carer. His situation was similar to MSers with more advanced disease - no effective treatments, annual visit to the neuro, limited support for his wife. I hope the next generation of researchers for these two devastating diseases will make some real breakthroughs as we seem to be stuck in a rut at the moment.
I think real carers rarely get the care they need. And as Taz points out, so many of us are our own carers, and as the disease progresses, must be extremely careful, particularly about being taken advantage of. (I am not equating advanced MS to dementia etc.) I’m speaking for myself; I often need input from other people about issues that I may overlook. Thanks for this. It’s a huge issue.
Thank you for this book recommendation- I will buy it immediately for my husband! He is coping well with early caring but I suspect won’t as I progress
I wouldn’t mind being a carer, as hard as it would be. But I do not ever want to become a person’s piglet. Sadly as my neurologist so kindly told me (as if I didn’t fcking know), it’s likely to happen. Though they didn’t use the term piglet, it might have been a more interesting chat had they done so. Looks like a good book that says the unsayable, helps many I’m sure. But
Switzerland comes before being someone’s piglet 100%.
Thanks to Emily Wojcik for directing me to your publication, Gavin. I'm based in the UK. I helped my Mum care for my Dad, and now I care for her. (11 years now in total) I resigned from my global leadership job to care for them full-time. My Dad had RA, CHF, AFib, bladder cancer and vascular dementia. I'm sure you can imagine what that entailed with methyltrexate, warfarin, diuretics etc.
I agree, every carer who's read this book recommends it to others. It's #2 in my caregiving reference books that I published on my Carer Mentor website,
May I also suggest that online forums are a welcome support, e.g. Carers UK's Connect is an anonymous forum with people posting every day, mobilise has one too. These help carers share the emotional overload with others who get it.
I started my own publication on Substack as a dynamic space to bring diverse carer voices together and share/amplify lived experiences. I hope you'll explore the content.
Thanks for this ! Such an important message! In our family both my husband and myself are diagnosed with MS. Luckily still well enough to not need much help, but we are thinking of the future and in a way we get scared. Don't know how this will end, but I am sure this book will be quite helpful 😉
My MS is quite advanced but I can still dress myself, cook meals but I really struggle to walk, use a wheelchair more than I would like and have the occasional fall. So I guess I am a piglet waiting to be born. I have ordered the book to read myself and my wife to dip into as she is my carer.
Many thanks for the steer to the book. Life is not easy for me or my wife and it will only get worse and any help is much appreciated
Thank you for highlighting the issues faced by carers - please remember many of us are our own carers (sadly being diagnosed with MS means you may never find someone prepared to take that journey with you and/or you find out whether your spouse really meant 'in sickness as in health')
As well as being the person with MS and trying to be our own carer, we may also have elderly parents with their own health needs including dementia that we are also trying to support and manage their multiple interactions with the same institutions that should be but are failing to support us - NHS, social care, DWP etc etc
And that is not to forget the many young/child carers who at best may be partially shielded if the 'healthy' parent remains but who are often left to try and navigate the same systems on their own
In the spirit of Winie the Pooh, I am more than happy to be referred to as Piglet - though secretly inside I remain Tigger and refuse to be Eeyore :)
Life, is not about how fast you run or how high you climb, but how well you bounce :)
Thanks for this Gavin.
I just managed to get an up to date MS review after 2 years as the smouldering is def more difficult to cope with now.
My partner has Parkinson’s as well, so we both try to be carers.
I will order the book today!
As usual you’re right there with advice, and thank you.
A treatment to stop unrelenting disability progression would provide the greatest relief to the MSer / their carers / their families. It would also reduce demands on neurology departments. I met up with an old work friend (in his 70s) with Parkinson’s in the week. He has deteriorated a lot since I last saw him and his wife is his full time carer. His situation was similar to MSers with more advanced disease - no effective treatments, annual visit to the neuro, limited support for his wife. I hope the next generation of researchers for these two devastating diseases will make some real breakthroughs as we seem to be stuck in a rut at the moment.
Thank you Gavin, for highlighting that we don’t have MS alone it affects everyone that loves us. The co-patient is so often overlooked.
I love this book review, Gavin ! Ruth
I think real carers rarely get the care they need. And as Taz points out, so many of us are our own carers, and as the disease progresses, must be extremely careful, particularly about being taken advantage of. (I am not equating advanced MS to dementia etc.) I’m speaking for myself; I often need input from other people about issues that I may overlook. Thanks for this. It’s a huge issue.
Thank you for this book recommendation- I will buy it immediately for my husband! He is coping well with early caring but I suspect won’t as I progress
I wouldn’t mind being a carer, as hard as it would be. But I do not ever want to become a person’s piglet. Sadly as my neurologist so kindly told me (as if I didn’t fcking know), it’s likely to happen. Though they didn’t use the term piglet, it might have been a more interesting chat had they done so. Looks like a good book that says the unsayable, helps many I’m sure. But
Switzerland comes before being someone’s piglet 100%.
Thank you again for recommending this book, I ordered it straight away & it arrived yesterday, I’m very much looking forward to reading it.
I'm more than happy to be referred to as Piglet! 😂
Thanks to Emily Wojcik for directing me to your publication, Gavin. I'm based in the UK. I helped my Mum care for my Dad, and now I care for her. (11 years now in total) I resigned from my global leadership job to care for them full-time. My Dad had RA, CHF, AFib, bladder cancer and vascular dementia. I'm sure you can imagine what that entailed with methyltrexate, warfarin, diuretics etc.
I agree, every carer who's read this book recommends it to others. It's #2 in my caregiving reference books that I published on my Carer Mentor website,
May I also suggest that online forums are a welcome support, e.g. Carers UK's Connect is an anonymous forum with people posting every day, mobilise has one too. These help carers share the emotional overload with others who get it.
I started my own publication on Substack as a dynamic space to bring diverse carer voices together and share/amplify lived experiences. I hope you'll explore the content.
Thanks for this ! Such an important message! In our family both my husband and myself are diagnosed with MS. Luckily still well enough to not need much help, but we are thinking of the future and in a way we get scared. Don't know how this will end, but I am sure this book will be quite helpful 😉
My MS is quite advanced but I can still dress myself, cook meals but I really struggle to walk, use a wheelchair more than I would like and have the occasional fall. So I guess I am a piglet waiting to be born. I have ordered the book to read myself and my wife to dip into as she is my carer.
Many thanks for the steer to the book. Life is not easy for me or my wife and it will only get worse and any help is much appreciated