Have you been treated like a second-class citizen by your MS service because you have primary progressive MS (PPMS)? What should be done to improve the lot of people with PPMS?
Why aren’t there more studies that include people over 65…the population age is getting older. We need to work on myelin repair for progressive ms patients, we can’t stop the disease, so repair the myelin
Agree. And putting us in classifications doesn’t really help much. Once one gets to a certain age, you can call it whatever you’d like, but there’s really nothing left for us. (In the states here.)
Yes i definitely feel discarded by my neurologist. I was diagnosed with PPMS over twenty years ago. I have been offered nothing by the NHS in this time.
I self funded 3 infusions of rituximab , with my neurologist advising I could then have further off label infusions on NHS. This did not happen apparently the criteria had changed by then
.
Majority of people with PPMS self fund physio, massage, supplements, oxygen, to try to stay healthy. I am afraid to say I know more about PPMS than my MS nurse. When I have my telephone appointments with her it is just a tick box exercise.
Millions has been raised for MS treatments & trials, but unfortunately they are not for PPMS!!!
I learn more from your MS Selfie than my neurologist.
Agreed, I have PPMS and the healthcare system abandons us, well, it did me. I can understand there isn’t a treatment available for many, but we need other support. Other meds, signposting( how I hate that phrase) to other support or meds for symptoms.
And yes the “get treatment early” phrase is infuriating!!! “Time is brain” is just upsetting….
I have had the will to change hospitals, have a wonderful consultant who does the best for me, but many people would not be in a position to do this.
I’ve often suggested there should be some sort of symbol relating to which type of MS the post/ blog/info is relevant to and then us PPMSers can chose to read it all or just some. This might just avoid some of the upset about post that are completely irrelevant (or infuriating) to us.
Thank you for this thoughtful article. I have PPMS and I do feel ignored and discarded by the medical world, left to rot, as people with AIDS were left to rot in the 80s and early 90s. I haven't had an MRI scan since 2005, I have never been offered medication (not that there's much on offer), and the only interactions with a neurologist are the annual cosy chat, which goes like this: "How are you?" - "Worse." - "Oh dear. There's nothing we can do. Goodbye." - "Goodbye."
Same here in New Zealand - except here we do not even get an annual cosy chat. Diagnosed in 2007 with sole MRI scan: end of involvement from medical profession. There are no treatments: goodbye.
I was 36 at diagnosis in 2019 . I work for nhs as a nurse. Looking back I have had this for at least 10 years prior to diagnosis .
I have been so disappointed with my care. Totally forgotten and just left.
I have been told i had active lesions but the wait for ocrevus was increased due to covid and they were prioritising RRMS patients first!!
It has been like this the whole time.
I have had hsct privately I had some good initial results but now I have progressed .
I have seen 2 different consultants and they can not do anything. The offer of a trial was great but they were starting with the older people first so I am way down the queue again!
I am now 42 still working for nhs but not sure for how much longer as my mobility is getting worse.
I pay for private physio and I am going for private famprimide as England don’t seem it cost effective here.
Diagnosed with MS 2008 in oxford. My GP wasn’t told. I wasn’t told it was PPMS or that there are different categories. So the doctor referred me eventually. It turned out to be a relapse clinic and asked why I was there as I have PPMS! At that point, a year + the penny dropped and I was introduced to an MS nurse.
I immediately realised I definitely needed more attention, but nothing happened. I volunteered for all clinical trials, nothing. I attended the oxford MS combined with the MS Society annual meetings where they said AHSCT has a very high risk of mortality. Didn’t say because uk so far behind other countries. So eventually I had a transplant in Mexico 2018 EDSS 5. I responded for a couple of months. Today I’m 7.5 and very angry i didn’t have AHSCT years before when it would be more likely to be successful.
I’ve been privately funding Famprya which does a lot more than it’s recognised for. I also pay for a regular chiropractor who really helps, took two years fighting for Sativex. I have to pay for everything including full time care.
Thank you for this thoughtful article. I am a fan of all your posts and articles. As I am the patient of a professor who specializes in MS, I was hoping to be part of experimental treatments and and least out of te box thinking. But no. If it's not evidence based, sorry... diagnosed in 2021 I went trough a lot of tests. Serum, Liqour, MRI etc. I don't have active lesions and my brain looks kind of 'normal' for a person my age. So happy I was put on Ocrevus the only med for PPMS. Then I started to get UTI's and my progression advanced quickly.. The said I would get better after the infection is gone but I didn't. Each infection made me permanent worse. Then read this article https://academic.oup.com/braincomms/article/6/3/fcae143/7655554?login=false and made sense to me. What is, if I may ask, your opinion about this? Is this an explanation why Ocrevus doesn't work well for PPMS?
I have stopped taking Ocrevus after the second infusion getting tested for the third infusion more than a year ago. My B cells (or part of them) where still 0 and now, more then 1,5 year later still not back to normal. What should I do, continue? An answer my neurologist doesn't give. Nor discusses any of the therapies of label you offer, nothing. It feels you have to figure it all out by your self. Your diet, walking aids etc etc. So I started over a week ago with LDN. What do you think about LDN? I also take Clemastine 1mg on and of. Stopped because I was on profylactische antibiotics for UTI's and felled to take a break from Clementine. Only thing I get prescribed is Fampyra.
Sorry for the long story ☺️ but my conclusion is; if nothing works (Ocrevus) they lose interest in you. Besides every 6 month's a call. ps the nurses are very kind, but are to much 'playing' doctor if it was up to them I was on Baclofan (managing spasms myself in others ways) catharisation was the solution for my UTI's ?! UTI's are under control now, and why not take anti depressiva? I did rTMS for depression and worked fore me but wares of etc.
Thank you for all you are doing for this special group, wish I was your patient ;) I respect and understand if you can not answer all my questions, they are not related to your question
Kind regards, Claudia Beaumont 64 years young, still working, still kind of wobbly walking with aids like Bioness and Dictus Elastcs both great helps. Slowly losing the use of left arm.
A thoughtful and emotion inducing article! Whilst I do not feel discarded by the neurology team, and am happy to be a participant in a live trial, I do feel the network of support outside of this needs to be better. I am on numerous waiting lists for support care such as physio, CBT, continence support etc… each with another challenge. The support to bring all these together seems lacking. I spend most days off chasing one or other which adds to my stress and fatigue on top of the days when my PPMS makes the world seem very heavy. To a point I now have to come to terms with just letting this develop - and hoping for the best. Far from ideal and does leave a sense of injustice.
Thanks Prof G for starting this conversation. Yes I think there’s huge gaps with PPMS in availability of effective treatment, time to diagnosis, and even public perception. When I tell friends I am being followed for MS I often hear how I shouldn’t worry because they know someone with MS who’s had it for years and they’ve been on treatment and they’re fine. In 3 years I am less and less fine and I still don’t have a diagnosis despite multiple MRIs because whatever I have is slow and insidious and doesn’t light up with inflammation. Thanks to Prof G I have a good idea it’s smoldering in my spinal cord and it has to chew through 3-4mm of it before anyone can see it, and by then how disabled will I be? I think I am “lucky” in that I have sensory symptoms so was aware of it earlier than those who start with motor but going to the doctor (an MS specialist in a world class MS research clinic) has gotten me nowhere because with no visible lesions (yet) there is no diagnosis and no treatment. This is like telling someone with Stage 1 cancer to come back when it’s Stage 3 and can be seen on the scans.
But reading these responses I also feel lucky that I have private insurance in the US and am even being scanned every 6 months. In the past I have railed about how inequitable the U.S. system is and how we should have nationalized healthcare “like the NHS in the UK” but now am astounded how the NHS can turn their backs on so many people and let the disease take its ugly natural course in this day and age. Of course in the US insurance companies decide your fate. And once I am too disabled to work and no longer have insurance through my employer I will have nothing until I can convince the government I’m disabled enough to warrant some support.
I’m also astounded at how little the neurology field appears to know or care about the non inflammatory, disabling side of MS when this is what ruins peoples’ quality of life.
So please, more effective treatment for PPMS, more sensitive diagnostics, and more knowledge about how progression occurs and how to stop it.
I live in Gloucestershire. first symptom 2000. 49 years old diagnosed 2007 O.N. bilaterally. 2016, diagnosed with PPMS after other weird positive tests and another bout of ON. My neurologist is amazing. he said he would get me diagnosed and he did (symptoms didn't match MacDonald criteria. Anyway i missed DMD as was told too far advanced. However now I am more disabled and virtually house bound, (i can still walk in the house but marginally due to my tenacity of spirit. I wont give in. I have an amazing MS nurse practioner who sees me nearly every 3 months at home. Its kind of like to me having cancer and being in hospice, i am being kept COMFORTABLE. How and when it will all end i have no idea. But i will fight this disease to the last breath. I have very bad issues with UTI and bowel issues.
I feel the MEDICAL PERSONNEL you meet do not understand the difference between RRMS and PPMS, EVEN my care don't understand it as most of their patients are RRMS. TOO much ignorance about this disease. They need to be informed and told how to deal with us. BUT i have to say i cannot complain about the way my neurologist or my MS nurse cares for me.
3 years on from an active MS diagnosis, I still don’t know which type of MS I have. My last appointment with the consultant, I was told it can take up to 10 years from initial diagnosis to determine if it is progressive MS even though I have had a decline in the past 3 years! It’s all very frustrating
I have been ignored for so long that I'm now bed bound because I'm disabled from the waist down including bladder and bowel and legs. I also have a paralysed right arm and a weak left arm
I have never been offered anything to help apart from some painkillers like gabapentin
And when I last pushed for any help I was told I was too old.
I can't afford to pay for a physiotherapist or home help.
But as far as the NHS is concerned I'm trapped in bed so I'm easily ignored.
(People moaned about going a stir crazy during the pandemic. But try looking at the same four walls for a couple of years 😵💫)
I was diagnosed with PPMS by my local neurologist in 2015. I was referred to my nearest MS centre, the consultant there said there was nothing because they could do so referred me back to my local neurologist, a nice man but with a special interest in Parkinson’s he wasn’t the best qualified to manage me. I deteriorated rapidly from having a slight limp to having to give up work needing a walker indoors and wheelchair outdoors by 2018. I was finally referred for a MRI in 2019 - extensivd spinal lesions some brain. Referred back to MS centre they now thought I have RRMS. I think no way as I have no recovery just progressive down hill but I wasn’t going to tell them that as they now offered me 3 DMT options. I automatically decide the most potent Ocrelizumab but now Covid has happened they can only offer me the self injected Copaxone as hospital not open to outpatients. It is October 2020 befire I finally have Ocrelizumab. OK so I have had no new lesions but I continue to get worse and am severely disabled. Firstly MS centres should not discharge PPMS pts ithey still need specialist management whether drugs advice etc it seems to me MS centres just want the lowest hanging fruit, fitting a patient to a therapy protocol they can probably do in their sleep, they are the ones who should be handling the patients where there isn’t an easy way of treating them. Secondly do away with the wait and see approach, just look what they cause when they do this a life of severe disability, reduced life expectation, hardship for the person and their family. They may not have killed some one but they have done something just as bad. Giving someone a diagnosis is good for management but then dividing that into further subtypes is splitting hairs and seems not straight forward as my team changed their minds and denied me treatment for many years which resulted insignificant neuro damage.
I was diagnosed with PPMS when the neurologist saw that there were lesions on my spinal cord. I was 67 then and was told that I was too old to receive treatment. At that time, I could still walk unassisted and the only comment that neurologist had was that I was doing so well. Now I’m not. The disease has progressed and I can barely walk now. I don’t bother seeing that neurologist because he has nothing to say. What are the holistic methods for managing PPMS?
I have PPMS and agree with most of the comments here. No great help from the NHS apart from a great MS nurse who is a good shoulder to cry on and a little bit of physio. I reckon I have had it 16 years but only diagnosed for 8 years. It was my pilates instructor that worked out I had a neurological problem. I have gone hard on the diet and lifestyle and looking after myself. I think Low Dose Naltraxone has helped slow things down. I am very committed to staying well so stretch daily, have an excellent osteo, CBD oil dulls the pain, pilates, sauna, red light therapy, massage, reflexology the list goes on. Walking is hard but not impossible with a stick (cane). Exercise is key getting out on my ebike, playing padel tennis and pickleball. I have also transitioned to sit ski. I have spent loads of money on all this and more over the years but am fortunate I have a good job and am still working full time from home.
I still travel lots and have 3 daughters as the biggest motivation to stay positive and try and stay on my feet. Sending lots of love to all the PPMS crew commenting here. It is the toughest gig. I blog if anyone is interested or wants to connect at www.adamski76.blog.wordpress.com. I only know one other person with PPMS. We are a rare breed.
Thanks Gavin for all you do for MS. Keep up the good work.
I am in the U.S and have a SPMS diagnosis. Here I get Ocrevus infusions. Other than infusions, a yearly MRI of the brain (every other year for cervical spine) and one in person appointment with a neurologist, I am on my own. So the description is familiar.
Why aren’t there more studies that include people over 65…the population age is getting older. We need to work on myelin repair for progressive ms patients, we can’t stop the disease, so repair the myelin
Agree. And putting us in classifications doesn’t really help much. Once one gets to a certain age, you can call it whatever you’d like, but there’s really nothing left for us. (In the states here.)
Yes i definitely feel discarded by my neurologist. I was diagnosed with PPMS over twenty years ago. I have been offered nothing by the NHS in this time.
I self funded 3 infusions of rituximab , with my neurologist advising I could then have further off label infusions on NHS. This did not happen apparently the criteria had changed by then
.
Majority of people with PPMS self fund physio, massage, supplements, oxygen, to try to stay healthy. I am afraid to say I know more about PPMS than my MS nurse. When I have my telephone appointments with her it is just a tick box exercise.
Millions has been raised for MS treatments & trials, but unfortunately they are not for PPMS!!!
I learn more from your MS Selfie than my neurologist.
Agreed, I have PPMS and the healthcare system abandons us, well, it did me. I can understand there isn’t a treatment available for many, but we need other support. Other meds, signposting( how I hate that phrase) to other support or meds for symptoms.
And yes the “get treatment early” phrase is infuriating!!! “Time is brain” is just upsetting….
I have had the will to change hospitals, have a wonderful consultant who does the best for me, but many people would not be in a position to do this.
I’ve often suggested there should be some sort of symbol relating to which type of MS the post/ blog/info is relevant to and then us PPMSers can chose to read it all or just some. This might just avoid some of the upset about post that are completely irrelevant (or infuriating) to us.
Thank you for this thoughtful article. I have PPMS and I do feel ignored and discarded by the medical world, left to rot, as people with AIDS were left to rot in the 80s and early 90s. I haven't had an MRI scan since 2005, I have never been offered medication (not that there's much on offer), and the only interactions with a neurologist are the annual cosy chat, which goes like this: "How are you?" - "Worse." - "Oh dear. There's nothing we can do. Goodbye." - "Goodbye."
Same here in New Zealand - except here we do not even get an annual cosy chat. Diagnosed in 2007 with sole MRI scan: end of involvement from medical profession. There are no treatments: goodbye.
I have PPMS.
I was 36 at diagnosis in 2019 . I work for nhs as a nurse. Looking back I have had this for at least 10 years prior to diagnosis .
I have been so disappointed with my care. Totally forgotten and just left.
I have been told i had active lesions but the wait for ocrevus was increased due to covid and they were prioritising RRMS patients first!!
It has been like this the whole time.
I have had hsct privately I had some good initial results but now I have progressed .
I have seen 2 different consultants and they can not do anything. The offer of a trial was great but they were starting with the older people first so I am way down the queue again!
I am now 42 still working for nhs but not sure for how much longer as my mobility is getting worse.
I pay for private physio and I am going for private famprimide as England don’t seem it cost effective here.
Rant over it stinks !
Diagnosed with MS 2008 in oxford. My GP wasn’t told. I wasn’t told it was PPMS or that there are different categories. So the doctor referred me eventually. It turned out to be a relapse clinic and asked why I was there as I have PPMS! At that point, a year + the penny dropped and I was introduced to an MS nurse.
I immediately realised I definitely needed more attention, but nothing happened. I volunteered for all clinical trials, nothing. I attended the oxford MS combined with the MS Society annual meetings where they said AHSCT has a very high risk of mortality. Didn’t say because uk so far behind other countries. So eventually I had a transplant in Mexico 2018 EDSS 5. I responded for a couple of months. Today I’m 7.5 and very angry i didn’t have AHSCT years before when it would be more likely to be successful.
I’ve been privately funding Famprya which does a lot more than it’s recognised for. I also pay for a regular chiropractor who really helps, took two years fighting for Sativex. I have to pay for everything including full time care.
PwPPMS are the forgotten
Thank you for this thoughtful article. I am a fan of all your posts and articles. As I am the patient of a professor who specializes in MS, I was hoping to be part of experimental treatments and and least out of te box thinking. But no. If it's not evidence based, sorry... diagnosed in 2021 I went trough a lot of tests. Serum, Liqour, MRI etc. I don't have active lesions and my brain looks kind of 'normal' for a person my age. So happy I was put on Ocrevus the only med for PPMS. Then I started to get UTI's and my progression advanced quickly.. The said I would get better after the infection is gone but I didn't. Each infection made me permanent worse. Then read this article https://academic.oup.com/braincomms/article/6/3/fcae143/7655554?login=false and made sense to me. What is, if I may ask, your opinion about this? Is this an explanation why Ocrevus doesn't work well for PPMS?
I have stopped taking Ocrevus after the second infusion getting tested for the third infusion more than a year ago. My B cells (or part of them) where still 0 and now, more then 1,5 year later still not back to normal. What should I do, continue? An answer my neurologist doesn't give. Nor discusses any of the therapies of label you offer, nothing. It feels you have to figure it all out by your self. Your diet, walking aids etc etc. So I started over a week ago with LDN. What do you think about LDN? I also take Clemastine 1mg on and of. Stopped because I was on profylactische antibiotics for UTI's and felled to take a break from Clementine. Only thing I get prescribed is Fampyra.
Sorry for the long story ☺️ but my conclusion is; if nothing works (Ocrevus) they lose interest in you. Besides every 6 month's a call. ps the nurses are very kind, but are to much 'playing' doctor if it was up to them I was on Baclofan (managing spasms myself in others ways) catharisation was the solution for my UTI's ?! UTI's are under control now, and why not take anti depressiva? I did rTMS for depression and worked fore me but wares of etc.
Thank you for all you are doing for this special group, wish I was your patient ;) I respect and understand if you can not answer all my questions, they are not related to your question
Kind regards, Claudia Beaumont 64 years young, still working, still kind of wobbly walking with aids like Bioness and Dictus Elastcs both great helps. Slowly losing the use of left arm.
A thoughtful and emotion inducing article! Whilst I do not feel discarded by the neurology team, and am happy to be a participant in a live trial, I do feel the network of support outside of this needs to be better. I am on numerous waiting lists for support care such as physio, CBT, continence support etc… each with another challenge. The support to bring all these together seems lacking. I spend most days off chasing one or other which adds to my stress and fatigue on top of the days when my PPMS makes the world seem very heavy. To a point I now have to come to terms with just letting this develop - and hoping for the best. Far from ideal and does leave a sense of injustice.
Thanks Prof G for starting this conversation. Yes I think there’s huge gaps with PPMS in availability of effective treatment, time to diagnosis, and even public perception. When I tell friends I am being followed for MS I often hear how I shouldn’t worry because they know someone with MS who’s had it for years and they’ve been on treatment and they’re fine. In 3 years I am less and less fine and I still don’t have a diagnosis despite multiple MRIs because whatever I have is slow and insidious and doesn’t light up with inflammation. Thanks to Prof G I have a good idea it’s smoldering in my spinal cord and it has to chew through 3-4mm of it before anyone can see it, and by then how disabled will I be? I think I am “lucky” in that I have sensory symptoms so was aware of it earlier than those who start with motor but going to the doctor (an MS specialist in a world class MS research clinic) has gotten me nowhere because with no visible lesions (yet) there is no diagnosis and no treatment. This is like telling someone with Stage 1 cancer to come back when it’s Stage 3 and can be seen on the scans.
But reading these responses I also feel lucky that I have private insurance in the US and am even being scanned every 6 months. In the past I have railed about how inequitable the U.S. system is and how we should have nationalized healthcare “like the NHS in the UK” but now am astounded how the NHS can turn their backs on so many people and let the disease take its ugly natural course in this day and age. Of course in the US insurance companies decide your fate. And once I am too disabled to work and no longer have insurance through my employer I will have nothing until I can convince the government I’m disabled enough to warrant some support.
I’m also astounded at how little the neurology field appears to know or care about the non inflammatory, disabling side of MS when this is what ruins peoples’ quality of life.
So please, more effective treatment for PPMS, more sensitive diagnostics, and more knowledge about how progression occurs and how to stop it.
I live in Gloucestershire. first symptom 2000. 49 years old diagnosed 2007 O.N. bilaterally. 2016, diagnosed with PPMS after other weird positive tests and another bout of ON. My neurologist is amazing. he said he would get me diagnosed and he did (symptoms didn't match MacDonald criteria. Anyway i missed DMD as was told too far advanced. However now I am more disabled and virtually house bound, (i can still walk in the house but marginally due to my tenacity of spirit. I wont give in. I have an amazing MS nurse practioner who sees me nearly every 3 months at home. Its kind of like to me having cancer and being in hospice, i am being kept COMFORTABLE. How and when it will all end i have no idea. But i will fight this disease to the last breath. I have very bad issues with UTI and bowel issues.
I feel the MEDICAL PERSONNEL you meet do not understand the difference between RRMS and PPMS, EVEN my care don't understand it as most of their patients are RRMS. TOO much ignorance about this disease. They need to be informed and told how to deal with us. BUT i have to say i cannot complain about the way my neurologist or my MS nurse cares for me.
3 years on from an active MS diagnosis, I still don’t know which type of MS I have. My last appointment with the consultant, I was told it can take up to 10 years from initial diagnosis to determine if it is progressive MS even though I have had a decline in the past 3 years! It’s all very frustrating
This is my wife’s experience too and it is just not good enough.
First symptom aged 14
Diagnosed aged 45
Sparkly still at 53
I have been ignored for so long that I'm now bed bound because I'm disabled from the waist down including bladder and bowel and legs. I also have a paralysed right arm and a weak left arm
I have never been offered anything to help apart from some painkillers like gabapentin
And when I last pushed for any help I was told I was too old.
I can't afford to pay for a physiotherapist or home help.
But as far as the NHS is concerned I'm trapped in bed so I'm easily ignored.
(People moaned about going a stir crazy during the pandemic. But try looking at the same four walls for a couple of years 😵💫)
I was diagnosed with PPMS by my local neurologist in 2015. I was referred to my nearest MS centre, the consultant there said there was nothing because they could do so referred me back to my local neurologist, a nice man but with a special interest in Parkinson’s he wasn’t the best qualified to manage me. I deteriorated rapidly from having a slight limp to having to give up work needing a walker indoors and wheelchair outdoors by 2018. I was finally referred for a MRI in 2019 - extensivd spinal lesions some brain. Referred back to MS centre they now thought I have RRMS. I think no way as I have no recovery just progressive down hill but I wasn’t going to tell them that as they now offered me 3 DMT options. I automatically decide the most potent Ocrelizumab but now Covid has happened they can only offer me the self injected Copaxone as hospital not open to outpatients. It is October 2020 befire I finally have Ocrelizumab. OK so I have had no new lesions but I continue to get worse and am severely disabled. Firstly MS centres should not discharge PPMS pts ithey still need specialist management whether drugs advice etc it seems to me MS centres just want the lowest hanging fruit, fitting a patient to a therapy protocol they can probably do in their sleep, they are the ones who should be handling the patients where there isn’t an easy way of treating them. Secondly do away with the wait and see approach, just look what they cause when they do this a life of severe disability, reduced life expectation, hardship for the person and their family. They may not have killed some one but they have done something just as bad. Giving someone a diagnosis is good for management but then dividing that into further subtypes is splitting hairs and seems not straight forward as my team changed their minds and denied me treatment for many years which resulted insignificant neuro damage.
I was diagnosed with PPMS when the neurologist saw that there were lesions on my spinal cord. I was 67 then and was told that I was too old to receive treatment. At that time, I could still walk unassisted and the only comment that neurologist had was that I was doing so well. Now I’m not. The disease has progressed and I can barely walk now. I don’t bother seeing that neurologist because he has nothing to say. What are the holistic methods for managing PPMS?
Check this website, they are all here.
I have PPMS and agree with most of the comments here. No great help from the NHS apart from a great MS nurse who is a good shoulder to cry on and a little bit of physio. I reckon I have had it 16 years but only diagnosed for 8 years. It was my pilates instructor that worked out I had a neurological problem. I have gone hard on the diet and lifestyle and looking after myself. I think Low Dose Naltraxone has helped slow things down. I am very committed to staying well so stretch daily, have an excellent osteo, CBD oil dulls the pain, pilates, sauna, red light therapy, massage, reflexology the list goes on. Walking is hard but not impossible with a stick (cane). Exercise is key getting out on my ebike, playing padel tennis and pickleball. I have also transitioned to sit ski. I have spent loads of money on all this and more over the years but am fortunate I have a good job and am still working full time from home.
I still travel lots and have 3 daughters as the biggest motivation to stay positive and try and stay on my feet. Sending lots of love to all the PPMS crew commenting here. It is the toughest gig. I blog if anyone is interested or wants to connect at www.adamski76.blog.wordpress.com. I only know one other person with PPMS. We are a rare breed.
Thanks Gavin for all you do for MS. Keep up the good work.
I am in the U.S and have a SPMS diagnosis. Here I get Ocrevus infusions. Other than infusions, a yearly MRI of the brain (every other year for cervical spine) and one in person appointment with a neurologist, I am on my own. So the description is familiar.