Barts-MS rose-tinted-odometer: ★
Mrs P came for her annual follow-up appointment. She has had MS for 12 years, was NEDA on dimethyl fumarate and had an EDSS of 4.0. She had fatiguable foot drop on the right; after walking for about 20 minutes her right leg would start dragging and her foot would catch on uneven surfaces. Does this symptom sound familiar?
Fatiguable foot drop in MS is very common and indicates that the pyramidal nerve fibre tract or motor pathway, in Mrs P case to the right leg, has lost reserve and is vulnerable to slow degeneration of the sort that is associated with worsening MS or secondary progressive MS.
Towards the end of the consultation, almost in passing, Mrs P told me that during the summer, whilst on holiday she had tripped and twisted her right ankle and had fractured her fibula (one of the long bones in the lower leg that helps support the ankle). Fortunately, the fracture was mild and not unstable and she was managed with a soft foot splint. Although the fracture had healed her foot was still swollen and stiff. Interestingly, she had not been referred to physiotherapy for an exercise programme to advise her on a sensible rehabilitation programme. I said it was never too late to start rehabilitation.
As a reader of this blog, you must be aware that pwMS are at increased risk of falls and fractures, which is one of the most common causes of unscheduled or emergency hospital admissions for pwMS. A fractured neck of femur or femur is one of the reasons why pwMS end-up in a wheelchair and never mobilise again.
In a Barts-MS audit Dr Ruh several years ago we showed that the best predictor of falls was the need or potential need for a walking aid, i.e. a foot splint, a foot-up, FES device (functional electric nerve stimulator), walking stick or sticks, walking frame etc.
Another issue that is closely related to falls is bone health. PwMS are more likely to have thin bones (osteopaenia) and osteoporosis for multiple reasons, which also increases the risk of fractures, which is why we recommend bone density or DEXA scans in all of our patients at risk of falls. In addition, to a bone health screen, we try and get these vulnerable patients into a falls prevention clinic. The latter doesn’t always work as there is a shortage of physiotherapists in the NHS and the wait for falls clinics can be many months.
We tried to address this problem by setting up a group falls prevention clinic a few years ago, but because of a lack of funding and a shortage of physiotherapy time within our NHS trust, we couldn’t make the clinic sustainable. This is a great pity as every year several patients under my care, such as Mrs P, fall and have fractures, which impacts on their quality of life and their MS. I often ask how many of these predictable fractures could have been prevented?
The study below shows that you can use technology, i.e. sensors to detect falls. A system like this could be embedded into a well-designed self-management or self-prevention application to tackle falls prevention and bone health at a population level. This is yet another example of technology showing great potential to improve preventive medicine, but as usual, there is no clear path on how to incorporate this type of innovation into routine clinical care. This is why my recent post on rethinking healthcare is so timely. As a MS HCP, I want an easy and well-oiled or frictionless system for testing these type of innovations in the NHS. Is that too much to ask for?
Do you use, or potentially need, a walking aid? Have you had any falls or near falls (trips)? If yes, you need to have the state of your bone health assessed and referred to a falls prevention clinic. Believe me when I say bone fractures are unpleasant; they are. I am typing this post supine with a painful fractured pelvis and a fractured cervical spine and a foggy head from the analgesics I am on to manage my pain. Although fractures heal they can leave behind residual deficits that could impact on your quality of life.
If any of you are having falls and have been on a falls prevention programme please feel free to share your experience.
Mosquera-Lopez et al. Automated Detection of Real-World Falls: Modeled from People with Multiple Sclerosis. J Biomed Health Inform. 2020 Nov 27;PP. doi: 10.1109/JBHI.2020.3041035.
Falls are a major health problem with one in three people over the age of 65 falling each year, oftentimes causing hip fractures, disability, reduced mobility, hospitalization and death. A major limitation in fall detection algorithm development is an absence of real-world falls data. Fall detection algorithms are typically trained on simulated fall data that contain a well-balanced number of examples of falls and activities of daily living. However, real-world falls occur infrequently, making them difficult to capture and causing severe data imbalance. People with multiple sclerosis (MS) fall frequently, and their risk of falling increases with disease progression. Because of their high fall incidence, people with MS provide an ideal model for studying falls. This paper describes the development of a context-aware fall detection system based on inertial sensors and time of flight sensors that is robust to imbalance, which is trained and evaluated on real-world falls in people with MS. The algorithm uses an auto-encoder that detects fall candidates using reconstruction error of accelerometer signals followed by a hyper-ensemble of balanced random forests trained using both acceleration and movement features. On a clinical dataset obtained from 25 people with MS monitored over eight weeks during free-living conditions, 54 falls were observed and our system achieved a sensitivity of 92.14%, and false-positive rate of 0.65 false alarms per day.
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Thanks for this. I’m a 62 year old PwMS which is now secondary progressive. I’ve had several falls in the last year and now use a walking stick. I also take high-dose calcium daily as a result – what’s your view of the value of this?
Calcium supplements are not harmless. Have you had a bone scan? If you have osteopenia you may also need vD supplements or another agent to help strengthen your bones. Have you seen a physiotherapist for falls prevention and an exercise programme? All essential.
There’s a free 8 module MS Falls Programme, called Free From Falls, on the National MS Society website. With free videos to watch and documents to download.
https://www.nationalmssociety.org/Resources-Support/Library-Education-Programs/Free-From-Falls
It also has an exercise programme, as part of it. The exercise program demonstrates exercises designed to improve balance and reduce your risk for falls:
https://www.nationalmssociety.org/Resources-Support/Library-Education-Programs/Free-From-Falls/Building-Better-Balance-Exercise-Program
Thanks for posting this. Good to review.
Do intermittent high doses of steroids, given for relapses, have an effect on bone density & if so, is it worth requesting a bone scan?
Yes and no. It depends on the cumulative dose and time period. In general, a 3- or 5-day single course of high-dose methyl-prednisone is not sufficiently long to cause osteopenia. However, it is complicated by other factors, for example, pre-existing osteopenia, low vD levels, smoking, disabling attack, outdoor mobility and activity, previous courses of steroids, steroid tapers, family history of osteopenia, etc. This why the algorithm to recommend a DEXA scan needs to be intelligent and potentially self-learning (AI).
I could be Mrs P. Fell two years ago and smashed my hip requiring full hip replacement. Added complication was we were in Madeira. Brilliant healthcare and transferred 10 days after op back initially into (private) UK healthcare and then back into NHS for DXA scan (advised by surgeon in Madeira). I was 58 at the time and the surgeon was pretty convinced I had osteoporosis. ( NB – this is also a prime example of the need to have comprehensive travel insurance in a post Brexit world).
After much chasing and 3/4 months after surgery I had the DXA scan and I was indeed diagnosed with osteoporosis. I now take medication. No falls prevention programme offered or indeed any follow up post surgery through the NHS. All rehab has been arranged myself through my local MS Therapy Centre and private physio. The nurse at the DXA scan said I would have to remind the surgery to rebook scan in two years time – there would be no automatic recall.
The hip surgery itself has been very successful but the fall and impact of the surgery has definitely compromised my mobility. I now use a stick and/or rollator.
My specific frustration is that no HCP (MS or otherwise) ever indicated to me at any time since diagnosis (at 44) the increased risk of osteoporosis in PwMS. Had I known sometime ago (and at menopause would have been a good time presumably) and had a DXA scan then, I could have taken preventative action and it could have made a difference.
Great post – and thank you for raising this very important topic.
Falling down and getting up
10 years ago I was falling a lot and breathless, diagnosis was iron deficit anaemia. Follow up invesigations to find cause revealed coeliac disease. Have been gluten free since. Sent for DEXA scan because coeliac disease causes malabsorption of vits inc. VitD. I had osteoporosis. Prescribed Alendronic acid (for 5 years) and VitD and calcium ever since. After 5 years bone density increased (!) so merely osteopoenia, but fell again on last scan early this year.
Having gone gluten free expected dramatic improvement in well-being etc. but it didn’t work out. Because six months later different walking problems including foot drop and fatigue came on strongly. Referred to neuro who found pyramidal tract problems. PPMS diagnosed after 4 years and getting second opinion.
So before I knew the cause I started using walking poles to avoid falling, went to a physio and worked out exercises with her for walking that I still do and have extended since MS diagnosis. Like you Prof G I have had to work out my own rehabilitation (helped by later neurophysio referral and MS Soc organised Gym sessions until March). It has been mostly successful, I have fallen only twice this year and early martial arts training means I instinctively fall safely (so far). I am in my 70s so don’t worry that people see me with walking poles. They stop falls when I trip and I get less tired when using them.
Having had several chronic conditions in later life I know exactly what you mean by the split between acute and chronic services in NHS (and don’t mention the multidisciplinary teams I’m not a project manager!). Rehab if provided is really only devised to stop you needing acute services, useful as a stop gap, but not really designed to help you to help yourself or get as well as possible.
One observation and one question, Prof:
My mobility has improved through long-term exercise. I have effectively had to teach my legs how to walk again and can climb stairs much better, so neural plasticity may be possible at a late age and late stage. Please dont write it off.
My osteoporosis is currently siloed in the coeliac cabinet. GP asks if I want to take Alendronic acid again. Who should I ask?
Keep up with your recovery.
Hands down, The absolute most valuable advice I was given to avoid falls on stairs came in the form of a mantra, “up with the good, down with the bad”. This makes it easy to remember to step up with your stronger leg first on a stair and let your weaker leg follow. To step down, use your weaker leg first because the stronger leg needs to bear your body weight as you lower the weak one. Obviously, use the rail too 😉
With regard to a fall prevention program, I was fortunate to have had a high tech Diagnostic Vestibular and balance dysfunction evaluation and treatment on a “smart balance master” device. The hospital advertisement states it helps PTs identify the cause of symptoms or balance disorders and design an individualized treatment program to improve balance and reduce fall risks. The treatment is touted as able to reduce vestibular symptoms and give an “improved sense of balance and improved functional mobility.” It’s not all smoke and mirrors, because it did improve my sense of balance in 6 weeks with a combined strength/ balance program.
What I think you Dr. G would like the most about this device is that it can pinpoint the exact type of real life situations which are likely to cause a particular patient to fall in a controlled clinical setting with the patient safely strapped in a harness. A foot plate sensor and Lasers measure posture, limb and head position. A target helps track eye movement. For me, I was found to be at risk of falls when I walk and turn head to find an object. I had training on this device, which has a 360* screen. I was shown a grocery store isle image which moved at variable speeds and I had to locate different items on shelves in a video game style. I felt a big benefit was knowledge of what situations put me at risk and the advice my PTs gave me to mitigate the risk. Image and description of device I was treated on: http://tirr.memorialhermann.org/programs-specialties/vestibular-rehabilitation/. Clinical Video showing testing on a similar (but I think earlier prototype) device https://youtu.be/J7HnUuvNcdc.