I do not have severe walking issues yet but some slight ones with coordination, especially when hiking in rocky terrain. I have found Nordic Walking Sticks excellent: they help with balance, posture, muscle training (including arms, back and core) and, when after about 60 minutes my right knee starts to feel like pudding. AND: instead of looking like a walking aid, they look super cool and sporty :-)
Yes, they're excellent. I also bought a carry case which can be strapped on your back, so that they can be used in an emergency but means you don't have to decide at the outset of your excursion that you're going to use them.
> she now wants me to start using a walking stick. I am trying to avoid it as a walking stick just doesn’t > look very cool. I fractured my left wrist during the lockdown as a result of a fall, and more recently, I > fell and fractured several ribs.
I was diagnosed with PPMS in 2006 and although I still walk, I use a walking stick when out/about. Ideally, I would prefer not to use one but started using mine a few years ago. The stick has increased my confidence when walking and sends out a signal there is an issue (i.e. I am not drunk when holding onto the backs of other diners chairs when trying to reach the restaurant toilet!). My stick is made by neo-walk.com and is silver grey, but actually made from solid acrylic. It looks very stylish and understated and has attracted a huge number of compliments over it's time. In turn, this has sparked some very interesting conversations with complete strangers.
Swimming - I swim once a week early in the morning. As well as being great exercise it's a social thing as well and I have got to know a number of people through it. In fact, I went this morning. Getting up early was hard, slipping into the cool water was hard but the feeling once you get moving is superb and as for the feeling afterwards!
Bone density scan - I had the great fortune to have a meeting with Prof G a few years ago. He covered so much ground in such a short space of time. From nowhere he suggested that I got my GP to refer me for a DEXA bone density scan. I was floored when the results showed there was evidence of osteoporosis present. I was then prescribed a simple weekly oral medication. I am due to have another scan later this year to see how things are. Although it was news I would rather not have received, at least it was picked up early in the game and offered me the opportunity to address it proactively. Well done Prof G!
I think your patient needs to explore orthotic aids. My experience is that there is a lot out there and not every physio is completely up to date. I was told that a fixed device (aka plastic wellington boot)was my only option, but I went for second opinions. By chance/good luck I came across physios at an FES clinic who got me to try something quite different - a fine metal insole attached with springs (called a Dynamic Walk), which stops knee hyperextension, helps with foot drop and propels the leg forward. I have no more falls and my walking distance has trebled. I get replacements on the NHS and the device is not even terribly expensive, but if this lady's clinic isn't proactive enough, she'll never be offered this for anything similar - I'm sure there are other possibilities, too. I am currently waiting for inclusion in a trial for AI insoles, which will monitor balance/gait and send the info to doctors. To come!
“This patient seems to have problems coming to terms with her physical disabilities and probably needs counselling.” If the situation was static ie no further worsening then this would be sensible, but it’s the insidious worsening affecting a multitude of critical functions that make MS unique. The situation this woman finds herself in makes one question how much progress has really been made in MS research / MS treatments. In 2022, this shouldn’t be happening.
I agree. It is because we focus on the wrong treatment target (relapses and MRI activity) and should be targeting smouldering MS, which is what drives most of the damage and gradual worsening we see in MS.
I do not have MS, but I have a stroke illness called Cerebral Amyloid Angiopathy (CAA), which causes many of the symptoms and problems associated with MS, poor balance and mobility, regular falls, fatigue, brain fog with likelihood of cognitive impairment. So I follow Prof G's work with great interest, grateful to glean what I can of relevance to me.
I have the same dislike of walking aids and anything else that makes me look "disabled" as many pwMS seem to have. This is a great post, focusing on the issue of coming to terms with disability and the need to be sensible about fall-prevention. I only wish I had the cool style and pizzazz of Arda Shepherd - good on her, brilliant!!
Jul 27, 2022·edited Jul 27, 2022Liked by Gavin Giovannoni
Of course, the more I want to do, the less of it I can accomplish. If I can be doing two things at once, I’ll do it, but one needs to be aware and careful physically. Certainly, thinking about something else while walking can be a distraction and I've done that. MS is a constant learning and adapting experience, so I do what I can and avoid or approach with caution, things that might “hurt”. (Have/Do use cane or wheelchair when needed [got a nice chair at the beginning of all this years ago when walking was a problem.]).
I wouldn’t be writing here today without the video from Arda. What can I say? “Not Impressed”. She’s pretty, smart and articulate, and shares some of the same attitude I have (for example, I don’t consider myself a “warrior”). And everyone ought to try and “make it” with MS, but her “spin” is about “looking good”, which I’ve never had much tolerance for. My “spin” is about being happy and content, and looking good is a distant concern, one of the last things I need to do or accomplish in order to be happy or content.
I am not about to waste my time trying to influence what other people think about me by how I look, Arda. There’s a middle finger for that. I would do it for a job (like I suppose Arda thinks she must), or do it for a party. Otherwise, I don’t like people who hold opinions and values about how a person should look.
But do indeed be careful and mindful and plan your movements so as not to fall. And keep moving as best you can for as long as you can! :-)
Let's assume that while some actions can be taken to mitigate falling, it's going to happen as our condition worsens...
Since my MS diagnosis I've been coaching (or coaxing...) others to learn how to do a Rolling Break Fall though some refer to it as a dive roll. It's something taught by various martial arts including judo. Lots of videos on YT - best to pick one which isn't too martial arts hardcore. Something like this one:
Natural instinct is to put hands out in a fall which can cause sever grazing to palms, sprained or broken wrists and shocks to you elbows, shoulders, neck & head. Overwriting natural instinct and going into an oblique forward roll makes for a smoother movement and ideally results in you ending up on your bum which is better suited to stopping!
Aug 1, 2022·edited Aug 1, 2022Liked by Gavin Giovannoni
Also a left side MS affected person from Oz. About 20 years in and found an amazing device myself on Barts MS forum. My KAFO (Knee ankle foot orthosis) fixed the foot drop I had put up with for 15 years. Immediately fixed tripping and I can walk without a stick although it was recommended. The other ‘fix’ has been Cladribine, or Mavenclad here. The only medication other than regular exercise, and now regular physio, that has worked for me. I use MEDS or Mind Exercise Diet Sleep to manage things as best I can. Seems to be keeping me vertical most of the time. If you can afford it buy an Apple Watch. It has a fall detector and is also incredible as a time and effort saver. Logs all my activity, answers calls when my phone is at the other end of the house, can read and reply to messages etc. An electric bike is also great. Walking is poor but cycling is fine.
Jul 30, 2022·edited Aug 3, 2022Liked by Gavin Giovannoni
An interesting listen. I try to keep ambulant and walk everyday for 45 minutes. I try to complete 10K steps if it's a work day. 15K+ if it's WFH. Or, 20K at a weekend. I have noticed I get more fatigued when walking, but Dr Gretchen, my MS Specific Physical Therapist recommends that I do the thing that's the hardest for me to improve it. I only occasionally trip. Luckily, my yoga practice has really helped my balance issues.
This is me. I resisted AFO, sticks, out of embarrassment, not wanting to look ‘disabled’. My ex & family, being very English, would say ‘Don’t tell anyone you have MS, it will make them uncomfortable & they won’t know what to say to you.’ After divorce, therapy, and accepting I am disabled & the things that can help, life is much better!
I can’t empty my bladder & get bladder botox every 6 mths. I self-catheterise a few times/day (Speedicath are tiny, size of a lipstick, I carry them in my handbag). No more leaks, no more bladder infections.
The FÈS didnt work for me either. I have a folding walking stick for every occasion, flashy nighttime stick, everyday sticks (Switchsticks is U.K. company) I use a Rollator outdoors rough pavement & fields for walking my dog. I just got Nordic hiking sticks for the beach.
The biggest help for me is Pilates. I tried Pilates classes but the instructor spent so much time & attention on me, making sure I was doing it correctly, that it was better to do 1-1 lessons. I worked out a deal with instructor 2x/wk for 30 mins in package rate. I thought I was fit, but I wasn’t. After 3 years everything improved! my balance, leg strength, walking indoors w/out stick, standing in the shower(!).
I have accepted disability & get all the ‘perks’ available, a Blue Badge, concession on theatre, museum, film, train. Embrace it
Jul 29, 2022·edited Jul 29, 2022Liked by Gavin Giovannoni
My walking has hugely deteriorated since my last relapse last year and I can't walk without poles. I am about to start Siponimod it will be my first ever treatment . I am 61 and prior to last year relapse was cycling up to 30 miles and and walking up to 4 miles.
I used the walking poles I bought for trekking in the alps before ms stopped it. However lately I have started to use crutches and find they allow me to walk a little faster and I'm much more upright. They don't look cool but I look better than bent over walking poles. I very rarely fall but last week I was walking with a friend and my partner drove past and tooted, as I turned and waved I lost my balance and almost fell. Multitasking is an issue. I have discovered swimming is really helpful. Thank you for your brilliant newsletter.
I loved the YouTube from Arda. What I really appreciated was ditching the “warrior” paradigm!! I hated that “fight your cancer,” too. (Eye roll) Aside from Arda, at around the presented patient’s age, I felt the same about using a stick. I soon found that there are some great folding canes. At this point after 25+ years, a rollator is often less tiring. And it’s not worth falling for vanity, says I after a Colles fracture, major hand years ago. (Yes, osteoporosis, and I can’t decide what to take for it..) As I watched Arda, I fully realize that’s what I look like when I walk. I just don’t see it, thank goodness! Stay well, Prof G!
I use a stick when out wa;lking f as my balance is a bit erratic. I have just invested in a couple of Neo-walk sticks. ( neo-walk.com)The colours are great . One is called DNA and features a pattern similar to the double helix but Lyndsay - the owner says it is "Do Not Ask"
Doesn't have to be I have a few for different occasions. Foot drag I had that as well swimming I found help me and the water supports you and yoga and better insoles for your feet.
Diet is important.. Try going bk on Rebif again if possible.
I do not have severe walking issues yet but some slight ones with coordination, especially when hiking in rocky terrain. I have found Nordic Walking Sticks excellent: they help with balance, posture, muscle training (including arms, back and core) and, when after about 60 minutes my right knee starts to feel like pudding. AND: instead of looking like a walking aid, they look super cool and sporty :-)
Yes, they're excellent. I also bought a carry case which can be strapped on your back, so that they can be used in an emergency but means you don't have to decide at the outset of your excursion that you're going to use them.
As always, a very interesting read.
> she now wants me to start using a walking stick. I am trying to avoid it as a walking stick just doesn’t > look very cool. I fractured my left wrist during the lockdown as a result of a fall, and more recently, I > fell and fractured several ribs.
I was diagnosed with PPMS in 2006 and although I still walk, I use a walking stick when out/about. Ideally, I would prefer not to use one but started using mine a few years ago. The stick has increased my confidence when walking and sends out a signal there is an issue (i.e. I am not drunk when holding onto the backs of other diners chairs when trying to reach the restaurant toilet!). My stick is made by neo-walk.com and is silver grey, but actually made from solid acrylic. It looks very stylish and understated and has attracted a huge number of compliments over it's time. In turn, this has sparked some very interesting conversations with complete strangers.
Swimming - I swim once a week early in the morning. As well as being great exercise it's a social thing as well and I have got to know a number of people through it. In fact, I went this morning. Getting up early was hard, slipping into the cool water was hard but the feeling once you get moving is superb and as for the feeling afterwards!
Bone density scan - I had the great fortune to have a meeting with Prof G a few years ago. He covered so much ground in such a short space of time. From nowhere he suggested that I got my GP to refer me for a DEXA bone density scan. I was floored when the results showed there was evidence of osteoporosis present. I was then prescribed a simple weekly oral medication. I am due to have another scan later this year to see how things are. Although it was news I would rather not have received, at least it was picked up early in the game and offered me the opportunity to address it proactively. Well done Prof G!
I’m smiling about “I’m not drunk when holding onto the backs of other diners’ chairs...” Sometimes that happens if I have a stick or not!
I think your patient needs to explore orthotic aids. My experience is that there is a lot out there and not every physio is completely up to date. I was told that a fixed device (aka plastic wellington boot)was my only option, but I went for second opinions. By chance/good luck I came across physios at an FES clinic who got me to try something quite different - a fine metal insole attached with springs (called a Dynamic Walk), which stops knee hyperextension, helps with foot drop and propels the leg forward. I have no more falls and my walking distance has trebled. I get replacements on the NHS and the device is not even terribly expensive, but if this lady's clinic isn't proactive enough, she'll never be offered this for anything similar - I'm sure there are other possibilities, too. I am currently waiting for inclusion in a trial for AI insoles, which will monitor balance/gait and send the info to doctors. To come!
“This patient seems to have problems coming to terms with her physical disabilities and probably needs counselling.” If the situation was static ie no further worsening then this would be sensible, but it’s the insidious worsening affecting a multitude of critical functions that make MS unique. The situation this woman finds herself in makes one question how much progress has really been made in MS research / MS treatments. In 2022, this shouldn’t be happening.
I agree. It is because we focus on the wrong treatment target (relapses and MRI activity) and should be targeting smouldering MS, which is what drives most of the damage and gradual worsening we see in MS.
I do not have MS, but I have a stroke illness called Cerebral Amyloid Angiopathy (CAA), which causes many of the symptoms and problems associated with MS, poor balance and mobility, regular falls, fatigue, brain fog with likelihood of cognitive impairment. So I follow Prof G's work with great interest, grateful to glean what I can of relevance to me.
I have the same dislike of walking aids and anything else that makes me look "disabled" as many pwMS seem to have. This is a great post, focusing on the issue of coming to terms with disability and the need to be sensible about fall-prevention. I only wish I had the cool style and pizzazz of Arda Shepherd - good on her, brilliant!!
Of course, the more I want to do, the less of it I can accomplish. If I can be doing two things at once, I’ll do it, but one needs to be aware and careful physically. Certainly, thinking about something else while walking can be a distraction and I've done that. MS is a constant learning and adapting experience, so I do what I can and avoid or approach with caution, things that might “hurt”. (Have/Do use cane or wheelchair when needed [got a nice chair at the beginning of all this years ago when walking was a problem.]).
I wouldn’t be writing here today without the video from Arda. What can I say? “Not Impressed”. She’s pretty, smart and articulate, and shares some of the same attitude I have (for example, I don’t consider myself a “warrior”). And everyone ought to try and “make it” with MS, but her “spin” is about “looking good”, which I’ve never had much tolerance for. My “spin” is about being happy and content, and looking good is a distant concern, one of the last things I need to do or accomplish in order to be happy or content.
I am not about to waste my time trying to influence what other people think about me by how I look, Arda. There’s a middle finger for that. I would do it for a job (like I suppose Arda thinks she must), or do it for a party. Otherwise, I don’t like people who hold opinions and values about how a person should look.
But do indeed be careful and mindful and plan your movements so as not to fall. And keep moving as best you can for as long as you can! :-)
Look at Selma Blair using a walking stick …fabulous
Yes. Yes I have to checkout this Dexa scan. Very informative as usual Proff G!
Let's assume that while some actions can be taken to mitigate falling, it's going to happen as our condition worsens...
Since my MS diagnosis I've been coaching (or coaxing...) others to learn how to do a Rolling Break Fall though some refer to it as a dive roll. It's something taught by various martial arts including judo. Lots of videos on YT - best to pick one which isn't too martial arts hardcore. Something like this one:
https://www.youtube.com/watch?v=Bdr2j5oD2dU
Natural instinct is to put hands out in a fall which can cause sever grazing to palms, sprained or broken wrists and shocks to you elbows, shoulders, neck & head. Overwriting natural instinct and going into an oblique forward roll makes for a smoother movement and ideally results in you ending up on your bum which is better suited to stopping!
Also a left side MS affected person from Oz. About 20 years in and found an amazing device myself on Barts MS forum. My KAFO (Knee ankle foot orthosis) fixed the foot drop I had put up with for 15 years. Immediately fixed tripping and I can walk without a stick although it was recommended. The other ‘fix’ has been Cladribine, or Mavenclad here. The only medication other than regular exercise, and now regular physio, that has worked for me. I use MEDS or Mind Exercise Diet Sleep to manage things as best I can. Seems to be keeping me vertical most of the time. If you can afford it buy an Apple Watch. It has a fall detector and is also incredible as a time and effort saver. Logs all my activity, answers calls when my phone is at the other end of the house, can read and reply to messages etc. An electric bike is also great. Walking is poor but cycling is fine.
An interesting listen. I try to keep ambulant and walk everyday for 45 minutes. I try to complete 10K steps if it's a work day. 15K+ if it's WFH. Or, 20K at a weekend. I have noticed I get more fatigued when walking, but Dr Gretchen, my MS Specific Physical Therapist recommends that I do the thing that's the hardest for me to improve it. I only occasionally trip. Luckily, my yoga practice has really helped my balance issues.
This is me. I resisted AFO, sticks, out of embarrassment, not wanting to look ‘disabled’. My ex & family, being very English, would say ‘Don’t tell anyone you have MS, it will make them uncomfortable & they won’t know what to say to you.’ After divorce, therapy, and accepting I am disabled & the things that can help, life is much better!
I can’t empty my bladder & get bladder botox every 6 mths. I self-catheterise a few times/day (Speedicath are tiny, size of a lipstick, I carry them in my handbag). No more leaks, no more bladder infections.
The FÈS didnt work for me either. I have a folding walking stick for every occasion, flashy nighttime stick, everyday sticks (Switchsticks is U.K. company) I use a Rollator outdoors rough pavement & fields for walking my dog. I just got Nordic hiking sticks for the beach.
The biggest help for me is Pilates. I tried Pilates classes but the instructor spent so much time & attention on me, making sure I was doing it correctly, that it was better to do 1-1 lessons. I worked out a deal with instructor 2x/wk for 30 mins in package rate. I thought I was fit, but I wasn’t. After 3 years everything improved! my balance, leg strength, walking indoors w/out stick, standing in the shower(!).
I have accepted disability & get all the ‘perks’ available, a Blue Badge, concession on theatre, museum, film, train. Embrace it
My walking has hugely deteriorated since my last relapse last year and I can't walk without poles. I am about to start Siponimod it will be my first ever treatment . I am 61 and prior to last year relapse was cycling up to 30 miles and and walking up to 4 miles.
I used the walking poles I bought for trekking in the alps before ms stopped it. However lately I have started to use crutches and find they allow me to walk a little faster and I'm much more upright. They don't look cool but I look better than bent over walking poles. I very rarely fall but last week I was walking with a friend and my partner drove past and tooted, as I turned and waved I lost my balance and almost fell. Multitasking is an issue. I have discovered swimming is really helpful. Thank you for your brilliant newsletter.
I loved the YouTube from Arda. What I really appreciated was ditching the “warrior” paradigm!! I hated that “fight your cancer,” too. (Eye roll) Aside from Arda, at around the presented patient’s age, I felt the same about using a stick. I soon found that there are some great folding canes. At this point after 25+ years, a rollator is often less tiring. And it’s not worth falling for vanity, says I after a Colles fracture, major hand years ago. (Yes, osteoporosis, and I can’t decide what to take for it..) As I watched Arda, I fully realize that’s what I look like when I walk. I just don’t see it, thank goodness! Stay well, Prof G!
I use a stick when out wa;lking f as my balance is a bit erratic. I have just invested in a couple of Neo-walk sticks. ( neo-walk.com)The colours are great . One is called DNA and features a pattern similar to the double helix but Lyndsay - the owner says it is "Do Not Ask"
Doesn't have to be I have a few for different occasions. Foot drag I had that as well swimming I found help me and the water supports you and yoga and better insoles for your feet.
Diet is important.. Try going bk on Rebif again if possible.