Assistive technology for loss of hand function

The hardest part of being an MS Nurse, for me, (and I know I have Nothing to grumble about!!)  is when someone with advanced MS tells me that  they are losing hand function.

I’ve compiled a list of useful resources to help live life as fully and independently as possible, in this situation. Here’s the list so far, but it’s only a beginning, I’d like a more comprehensive resource so please do contribute the things that you know.

This is where technology is absolutely your friend.

I’m loving this round up of the best assistive tech for 2017 from the makers of TECLA: https://gettecla.com/blogs/news/the-best-wheelchair-tech-accessories-of-2018?customer_posted=true#contact_form

They also have useful blogs on choosing smartphones, DIY assistive tech and more; see https://gettecla.com/

1) Abilitynet are an excellent charity that provide information and even home visiting assistance to help people with disabilities get the most from their computer, tablet and smartphone, including using voice controls.

https://www.abilitynet.org.uk/homepage

The home visit service:

https://www.abilitynet.org.uk/at-home/IT-support-for-disabled-people

 

2) Environmental controls/Assistive technology (AT)

(AT) is any item, piece of equipment, software program, or product system that is used to increase, maintain, or improve the functional capabilities of persons with disabilities. Put simply, it allows you to control things around you – from doors and curtains to TV, phone, wheelchair and more, without the normal use of your hands.

Counties will vary, but in Bedfordshire, if only one item is requested, the community OT department sort it, but for more than one, you can request a referral to the Acquired Brain Injury (ABI) team, for a specialist assessment.

3) Another place you can learn about AT is http://www.livingmadeeasy.org.uk/ which has impartial advice and information  about daily living equipment, developed by the Disabled Living Foundation (DLF)Their AT advice is here:

http://www.livingmadeeasy.org.uk/telecare/environmental-controls-2393/

 

Sometimes, what you need, is absolutely bespoke to you. When that’s the case, the wonderful experts are the charity

 

4) Remap http://www.remap.org.uk/  Remap are

retired engineers work with disabled people to try to make things to solve their individual problems; my experience of them has been fantastic.

Photo courtesy of Remap.

 

5) Independent electric wheelchair control can still be possible for people who have completely lost hand function, using ‘sip and puff’ / ‘suck and blow’ , or ‘tongue drive technology. Discuss with wheelchair services. You can see an example of it here, but it’s just an example, I don’t particularly recommend or endorse it.

 

https://smilesmart-tech.com/assistive-technology-products/wheelchair-controls/suck-and-blow-switch/

6) Suck and blow/sip and puff technology can also be used to use a computer, turn pages, or other commands.

 

http://www.livingmadeeasy.org.uk/search.php?cx=005018225405928271468%3Appdewqx27cq&ie=UTF-8&q=suck+and+blow

7) Neater eater

This is a lovely piece of kit that has been around for a long time; like a robotic arm that can help people with limited hand function to eat independently; i also see that they have systems for drinking too.

http://www.neater.co.uk/


I have many patients who continue to lead rich, full and busy lives, even with minimal function and maximum disability, and that, I guess, is the power of the human spirit.

Emma ( my colleague and the other MS Nurse at the MS Therapy centre) has just recently been at ECTRIMS in Paris, and we are both going to be at the MS Trust Annual conference next week, so hope to report back soon,

All the very best!  Miranda

human spirit

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Trials you can take part in: Statins in progressive MS, and Biotin in progressive MS

biotin 2

There’s a lot to think about if you’re considering being part of a clinical trial.

Some trials are more risky than others. These two are probably less risky, but you still need to ask:

What are the potential risks?

How many people/ what percentage have these risks

What are the potential side-effects?

How many people /what percentage get these?

What can be done if I do have a side effect or risk? Is it reversible?

What are the potential benefits?

What percentage have had these benefits?

How much of these had similar condition at a similar stage to me?

How long do they last?

Is more treatment necessary?

How much does it cost?

Will you give information either to me or to my doctor about what therapy I have undergone?

How will I be monitored? Eg scans, bloodtests etc

How often will I have to return for follow up? Is there a charge?

Will they pay my travel expenses?

How will I know if it’s worked? What’s the timescale for improvement?

Is there a placebo ( dummy drug) group? If I’m in the placebo group, and the real treatment group benefit, will I have the chance to change to the treatment group?

If I have the treatment during the trial, and benefit from it, will I be able to carry on with it long term?

Biotin

I’ve posted before about biotin in MS. A medical preparation of it has been given the name MD1003, and it is now being trialled to see its effect on people with progressive MS.  If you’re interested, here are the contacts. Don’t forget to ask those questions!

Trial Location(s)
Southern General Hospital
Glasgow
Scotland
G51 4TF
Musculoskeletal Department; Freeman Hospital
Newcastle upon Tyne
NE7 7DN
Clinical Trials Unit; Main Hospital; Salford Rooyal NHS Foundation Trust
Salford
M6 8HD
Barts and The London Hospital
London
E1 2AT
University College of London, Institute of Neurology
London
WC1N 3BG
Edinburgh
EH16 4SB
Trial Contact(s)
Primary Trial Contact
abdelkarim Bendarraz

Statins

statins

I’ve also posted a long time ago about statins.

My personal suspicion is that the beneficial effects are from lowering the bad fats in the blood, and that a safer and more healthy way to do this would be to adjust lifestyle factors; primarily diet, along the lines of the advice at http://www.overcomingms.org…. However, there may be some other mode of action, or radical lifestyle change may not be possible for you, in which case, you can register your interest for the trials, so that somebody will contact you when they start recruiting, which should be very soon ( summer of 2017), here:

https://www.mssociety.org.uk/forms/ms-stat2-information

Its’ been a long gap –  hope to post again much sooner this time,

all the best

Miranda

 

Panic attacks – an integrated approach.

This blog is an article in the last issue of the excellent New Pathways MS magazine, which they have kindly allowed me to share on my blog, too!

Hello and thanks for inviting me to do a regular column with New Pathways. As an MS Nurse with an interest in integrative medicine/ holistic health, when I explore a topic here, I will generally move from the conventional advice to exploring some of the more natural approaches that may also help.

Recent interactions with one of my very young patients, got me focussing on anxiety and PANIC ATTACKS! So here goesthe-scream

Panic attacks are intensely frightening events that happen when our systems are overloaded with stress hormones, causing a dry mouth, pounding heart, feeling of shortness of breath, dizziness, shaking, and sometimes, tingling ( as we hyperventilate) and chest pain. It can feel as if you’re about to die – which of course, increases the anxiety!  After a nasty experience with a panic attack, it can be easy to develop a fear of having another one.

Starting with the conventional, tell your GP what’s happening.  The NICE guidelines for the medical management of panic attacks recommend firstly, education and monitoring, secondly, Cognitive behavioural therapy (CBT) or relaxation therapy, and only in extreme cases that do not resolve, an anti-depressant medication, such as sertraline ( which can have the dangerous side effect of causing suicidal thoughts in a minority of people)

The NHS Website has a handy self-help guide: http://www.nhs.uk/Conditions/Panic-disorder/Pages/self%20help.aspx

I had my own experiences with panic attacks as a teenager, living abroad and drinking way too much coffee for my system, so all these suggestions come from an amalgamation of personal experience, nursing experience and learning!.

So let’s have a look at both immediate and long term strategies for mastering this problem.

If you feel one coming on:

Remember: Panic attacks aren’t dangerous. Remind yourself that it’s happening because of anxiety; your body is OK, and the very worst that could happen it that you could become dizzy from breathing too fast , and pass out, after which, your body will regulate itself again, and you’ll go back to normal. If you’re driving, pull over.

Change your focus from scary sensations, to something else that’s tangible – a sound, a feeling, a smell – part of being ‘mindful’ I found that focussing on something else – squeezing my toes and calf muscles, for instance, could distract me. Even searching for a specific item in a supermarket, or counting.  Having someone chatting to you, perhaps, squeezing or massaging hands, also helps.keep-calm

Regulate your breathing. Slow your breathing and count it in and out, starting with a count of three, and slowing if you can, to a count of five.

Rescue Remedy is a homeopathically diluted ( meaning that it works on an energy level, rather XX UNLIKE than like herbal or conventional medicine, and is safe to take whatever other tablets you may be on) Bach flower remedy, that many people find effective for times of crisis. See  http://www.nelsonsnaturalworld.com/en-gb/uk/our-brands/rescue-remedy/the-rescue-story.There is also a spray, and pastilles; use when you feel at risk of panic attack.

rescue-drops

rescue-spray

 

 

 

 

 

 

Preventing further panic attacks.

Gaining mastery over our states of mind is a lifelong learning process, and something we will probably never completely perfect. However, there are ways to prevent complete overwhelm from ruling us.

Anxiety and panic attacks can be very isolating.hug Connecting with others and having their support defuses this feeling, so tell other people who care about you, and let them know how they can help you through.

lists

 

 

 

 

 

In healthcare, we have a tendency to medicalise everything, and by doing this, we sometimes miss the obvious. It’s worth taking some time to think about the practical issues that may be causing feelings of anxiety and panic, and to ask – are there are any practical actions that can be take to make things easier? If something feels overwhelming, is there any help you can get? Can deadlines be extended? Can you get workplace support? Do you have to do things in the same way or can changes be made? Can a charity be approached to help fund an item that would help, but that you can’t afford? I often use www.Turntous.org for this. Getting organised, setting realistic goals, getting help, and taking small steps and deciding on future steps can help to restore a sense of equilibrium.

come on girls!

Because the hormones caused by stress are ‘burned up’ by exercise, making exercise, as much as you can, a regular part of your routine, is a powerful assistance in prevention.

Unstable blood sugar can also contribute to panic attacks, so coming off sugar and eating whole foods is helps. Coffee can cause anxiety and panic symptoms all by itself in susceptible individuals, so cut caffeinated coffee out completely.

Herbalists often recommend ‘adaptogens’ – herbs with the ability to lower stress hormones or increase resilience to stress. You can learn more at: http://nourishholisticnutrition.com/what-are-adaptogens-and-how-do-they-work/

One of the most powerful tools to become more resilient to stress and prevent anxiety and panic attacks that I have found ( through personal experience) is something called HeartMath. This is a very simple technique where you breathe in a rhythm of 5 (seconds) in, 5 out, in one continuous flow, whilst focussing on heart felt positive emotions, in the heart area. Technology can be added to allow teaching or self-monitoring using gadgets, or a sensor connected to heart rate variability display, but the basic technique is as free and as old as the hills; however, done regularly, it has the most profound effect on resilience to stress and mental, emotional and physical health. See https://mirandasmsblog.com/category/heartmath/ for my study in people with MS, and http://www.heartmath.com for more information.

heartmath-waves

 

 

 

 

 

Likewise, anything that helps to restore a connection to a sense of inner peace – meditation-and-the-brain

meditation, deep relaxation, helps to prevent overwhelm and retain balance. You don’t need technology to meditate, but there are loads of apps available now for phones, like http://www.headspace.com. These type of things need to be done daily to build resilience to stress, to be effective.

 

Moving into the world of energy and its flow, certain positions help to ‘ground’ us and defuse overwhelming feelings of panic. There’s a wealth of yoga exercises that strengthen and ground, but also some quick tricks, like ‘Cook’s Hook-ups’ from Educational Kinesiology: watch this video, and do try this at home!
https://www.youtube.com/watch?v=W8Ns-2yENgccooks_hookup_fullsize

pic (c) Maryam Webster http://maryamwebster.com/stressrelief/

It’s not always possible to take up a strange position, especially if you’re at work or on the tube for instance! But Mudras, or hand-yoga is often possible!. Mudras change the flow of energy around the body, affecting physical and mental states, and are a part of the Indian system of medicine called Ayurveda. Here’s a link to the mudras for anxiety and depression https://youtu.be/X8OgsX9b3JA.

mudra

image from http://www.stylecraze.com/articles/8-yoga-mudras-to-overcome-any-ailments/#gref

In summary, panic attacks can be caused by many factors, so having a multi-factorial approach, with patience, to achieve the goal of mastering them, makes sense. I hope these resources are useful, and if you have your own personal tips, please do share them by commenting.

All the best, Miranda

 

 

 

 

Lipoic acid for MS

Hi! Hoping all had a merry Christmas and will have a wonderful New Year, full of everything good, and the strength to do everything possible for vibrant and glowing health and happiness. !

Been asked by lots of people to elaborate on the short report about an easy to get hold of supplement, Lipoic acid, in MS, that was part of this blog post; most importantly, where to get supplies of the dose that was used in the study ( 1,200mg daily).

antioxidant

“Lipoic acid for neuroprotection in secondary progressive multiple sclerosis: results of a randomised placebo-controlled pilot trial,1” was reported on by Dr. Rebecca Spain, MD, MSPH, a neurologist in the Oregon Health & Science University Multiple Sclerosis Center, also working with the VA Portland Health Care System, at ECTRIMS 2016.

Pic source:   http://www.desimd.com

Patients in the study had secondary progressive MS, were, on average, 58.5 years old, and had an average Expanded Disability Status Scale (EDSS) score of 6. ( walking with 1 stick)

The trial was randomised; around half (27) took 1,200 mg of lipoic acid, around half (24) took a placebo for 96 weeks, and neither the patients nor the clinicians knew who was taking which. They measured brain atrophy ( shrinkage), which is a way of showing loss of neurones in the central nervous system, and also neurodegeneration in the spinal cord and eye,  neurological functions, cognition, walking, fatigue, and quality of life.

Five participants in the lipoic acid group, equaling 9.8 percent, quit the study early, but the remaining patients took about 80 percent of their daily lipoic acid doses.

Researchers found that the annualized rate of whole brain tissue loss was significantly lower in patients receiving lipoic acid. After two years, treated patients had lost about 0.4 percent of their total brain volume, while those in the control group lost 1.3 percent during the same time; brain atrophy was reduced by 66%, almost to within normal limits. Those receiving lipoic acid were also found to walk faster, and had half the number of falls.

The treatment did not increase the occurrence of adverse events, but researchers noted that lipoic acid was linked to more stomach problems.

The author, Rebecca Spain when interviewed by Multiple Sclerosis News Today, said,

“The slowing of whole brain atrophy was remarkable. We can use this pilot study as the basis for designing a multisite clinical trial, which will help us answer questions about how lipoic acid works and whether it can indeed improve clinical outcomes for people,”

So; what is the mode of action of Lipoic acid?

Why might it be working so well in MS, and where can you get hold of higher doses?

Lipoic acid is an anti-oxidant, meaning that it helps to protect cells, including those in the brain, against damage from ‘oxidants’, or ‘free radicals’ which are unstable, oxygen-containing molecules, that damage other cells to protect themselves. Free radicals are both produced in the body as a result of metabolism, energy creation and, importantly, inflammation, and also come from environmental factors, such as air pollution, radiation, UV light and cigarette smoke. Anti-oxidants can help to fend off viruses and microbes, but an imbalance, with too many anti-oxidants, has been linked to the development of more than 50 diseases, the most commonly discussed being heart disease and cancer.

eat-a-rainbow

In food, antioxidants are present in various degrees in all plant-based food; a 2010 study analysing the anti-oxidant content of over 31,000 foodstuffs begins  ‘A plant-based diet protects against chronic oxidative stress-related diseases’

and goes on to report a                                                                                  ‘several thousand-fold differences in antioxidant content of foods. Spices, herbs and supplements include the most antioxidant rich products in our study, some exceptionally high. Berries, fruits, nuts, chocolate, vegetables and products thereof constitute common foods and beverages with high antioxidant values. 
spices

So daily diet, as always, is super important, and nothing can replicate the benefits of eating the nutrients from real, fresh food; in this case, berries, fruits, vegetables, herbs and spices. The range is as important as the quantity, so ‘Eat the Rainbow’

But if you want to replicate this study, where participants took 1,200mg of supplemental lipoic acid, you need to find a high dose ( and probably, reasonably priced) supplement. If money is no object, then it’s a good idea to spend more and buy from a reputable, high-end source. If, like me, you need to keep an eye on the pennies, then I’ve done a scout round for cheap, high dose, vegetarian.

I don’t have any vested interest in any supplement companies, and am not qualified to judge their products or to recommend supplements; you always need to take your own responsibility for your choices, based on your condition. However, lipoic acid seems to be a safe supplement.

A scout around the internet produced a few brands that make 600mg tablets, which would give a dose of 1,200mg with 2 tablets daily. I always go for a vegetarian friendly option, and came up with these via Amazon.co.uk

‘Doctor’s Best’ from i-herb, at £8.11 for 60 veggie capsules

and

‘Natrol’ timed release, via amazon, at £9.95 for 60 timed release veggie capsules

I am going to be protecting my brain, I hope you’ll protect yours!

Hope this helps!

all the best,

Miranda
 

 

 

 

 

Fatigue in MS – and what to do about it

Fatigue – that horrible overwhelming inability to do another thing, sometimes even to think straight, is one of the most disabling invisible problems of MS. When I took a poll of the top symptoms that people wanted to troubleshoot in a holistic way, Fatigue was top. So here goes:
fatiguedWhy do people with MS experience fatigue?

Fatigue in MS is  of 2 types. Motor fatigue, or ‘short-circuiting’ fatigue, is when the difficulty of transmitting the electrical nerve signal down demyelinated, or damaged nerves, overwhelm the body’s ability to produce  ATP ( the energy molecule). Fatigued muscles just have to stop; you feel as if you’ve run a marathon, it’s like hitting ‘the wall’ for an athlete, and you have to sit down. After a short while, energy is replenished, and you can go again.

The second type of fatigue is more of a  widespread, overwhelming all-over fatigue, described here by MS campaigner, Shoshana Pezaro in 2015:

“It’s an absolutely crushing physical and mental symptom that cannot be overcome through will-power. When fatigue hits, I feel like my plug has been pulled out. Physically my body suffers extreme weakness and heaviness and every tiny movement, even raising my hand, is like fighting through thick treacle. But the mental effects are worse. The world separates from my consciousness. My brain is shrouded in a deep fog. It is a dreamlike state where I can hear people and see people, but I somehow I cannot connect. Fatigue cannot be fought, only managed through rest and care.”

Lots of research and debate has been carried out about what causes this type of fatigue; an interesting study reported at this year’s ECTRIMS conference investigated whether fatigue was more strongly linked to lesions in the brain, or to inflammation. They found a strong correlation to inflammation as the driver of this type of fatigue.

So to address Fatigue, we need to address the MS itself, and take both a short and a long view. The good thing is, there is a lot you can do to address both MS itself, and the problem of fatigue.

Starting with the most simple, here’s my list:

  •  Obviously read all the MS Society  ( you can download here)

http://www.mssociety.org.uk/ms-resources/fatigue-ms-essentials-14  and

pace yourself, budget your energy, and:

  • Get your groceries delivered online
  • Call a family meeting, explain that fatigue is a physical problem in MS, and give the family information about it, set rules and boundaries and share out the chores!
  • Save your energy for the stuff that counts – if you can get a cleaner, do so!
  • Fluids – ensure you drink plenty of water
  • The drug  Amantadine can be tried for fatigue in MS but it only seems to help about 20% of people, and sometimes causes unpleasant side-effects

Sleep

Baby smiling in bed with eyes closed and arms out.

It seems obvious, but if your sleep is poor, you will have fatigue!

Sleep problems:

  • No caffeine drinks after 6pm
  • Consider having something to eat before bed to prevent low blood sugar
  • Try to get outside as early as possible (once the sun is up) in the day, and making sure you are outside for at least ½ an hour a day; this helps to set your body’s circadian rythm( wake-sleep cycle)
  • Address causes of waking if possible – eg bladder, worrying, spasm, pain
  • Consider natural sleep aids like ‘Nightall’ etc which are made from hops and valerian – check that its ok to take these with any medication you are on
  • Use the HeartMath technique, for 10 minutes every morning, plus whenever you experience negative or worrying thoughts, or mind is free, and when you’re going to sleep at night.

heartmath-pic

  • Lock into a positive emotion

  • Focus on heart area

  • Breathe in for 5 seconds and out for 5 seconds in one long continuous cycle

  • imagine blowing up a balloon in your belly as you breathe in – your abdomen should rise first, then abdomen squeezes in as you expel the last bits of air out.

HeartMath is wonderful – I can’t find a good website to make it simple; you can buy all kinds of gadgets to allow yourself to see how you’re doing and coach yourself further, but the basic technique is this simple, and it has powerful and far-reaching effects on your resilience to stress, amongst other things.

Additional extras to consider.

mitochondria-2

Energy is created in our bodies by mitochondria, the ‘powerhouse’ of the cell. Each cell contains up to a thousand mitochondria. Mitochondria take fuel from the food we eat, and transform it into energy. They generate a chemical called ATP, which transports the energy for use by the body.

In order to function properly, mitochondria need the fuel of excellent nutrition and oxygen.

Dietary factors

  • Everything that we put in our mouths can either be pro-inflammatory or anti-inflammatory; what we eat has an impact on inflammation.
  • A study published in July 2016 showed improvements in fatigue over the course of one year,  in people with MS who adopted a low fat, plant-based diet

plant-based-diet

  • See www.overcomingmulstiplesclerosis.org  for this type of diet, which could be expected to reduce inflammation, www.fatfreevegan.com for recipes.
  • Also  have a look at the work of Terry Wahls, a medical doctor who reversed her own secondary progressive MS with advanced nutrition,  online. I prefer the overcomingms diet as above, but Terry’s extras like green smoothies and intense nutrition make sense to add in.
  • Be aware of food intolerances. More people with MS have full blown celiac disease than in the general population, but you can also have a milder food intolerance that is not picked up by clinical allergy testing. Experiment to find out if some foods worsen your fatigue, by excluding them for 3 weeks and then bringing them in and noticing. Common irritating foods are bread, cheese, dairy products, gluten grains, sugar, and sometimes beans, but many people have individual things that they don’t tolerate.
  • Vitamin D3 at least 5000 IU daily & consider minimal erythmal dose sunbed. Some people may need more to get into the optimal range of 150-200nmol per litre; you can get your blood checked at http://www.vitamindbloodtest.org.uk
  • A study published this year found a significant reduction in fatigue in people with MS who took 500mg of Co-enzyme Q10 daily.
  • Omega 3 fatty acids are found in oily fish, nuts, seeds and whole grains, and help to calm down and prevent inflammation, aswell as helping to store and retain energy. 20g daily can be supplied by 2 dessert spoons of cold pressed flax seed oil used cold, and make sure it’s fresh; one example; www.flaxfarm.co.uk
  • B vitamins – some people are deficient in these, which can mimic symptoms of MS; some people report these help with fatigue; probably when there has been some deficiency present.
  • Probiotics & fermented foods– very important to restore health of gut, especially after antibiotics, which contributes to health/ energy

Exercise  &  Oxygenation hyperbaric-chamber-10-person

  • Many people report that hyperbaric oxygen improves MS fatigue; if this isn’t possible, at least do deep breathing!
  • Just had great comment in response to this post by Frank:
  • “The very best thing for me has been taking Oxygen Therapy at the MS Centre. There are 56 centres to choose from so there’s almost bound to be one near you – unless you live in Northumberland or Cumbria. 
    With Oxygen Therapy and MS, lots of us find there there is an optimum pressure. The ascending protocol suggests that people should start at 1.5 ATA, move to 1.75 ATA and then try 2 ATA. After each session note down how you feel immediately afterwards and then again about 24 hours later. Once you’ve tried all three pressures you should know the one that suits you best.
    As you say, Miranda, it does not work for everyone, but then neither do any of the drug or dietary therapies – we are all different – however, I’ve found it great for reducing my fatigue and if I miss my weekly session, I certainly feel the impact. Some of my colleagues find they are really tired after the Oxygen Therapy but then feel full of energy the next day, others, like myself, feel the benefit within a few hours. Whatever your views, it’s definitely worth giving it a go.”
  • Regular cardiovascular exercise can help to raise oxygen and energy levels, in your own zone of tolerance. Exercise has been shown to be strongly anti-inflammatory – make it part of your daily routine in one form or another.
  • Some people with fatigue have reported improvement to fatigue by raising the head of their bed by 6 inches. Called ITB or inclined bed therapy – See New Pathways issue 62

APS Therapy

At the MS Therapy Centre where I work we have now had many cases of people’s MS fatigue, including post relapse, responding very well to APS Therapy. This makes sense as the treatment stimulates production of ATP, and is a replica of the wave-form of action potentials ( the electrical nerve signal.)active-nerve-cells-29027134 It hasn’t worked for everyone that’s tried it; it seems to be more effecitve for fatigue in relapsing remitting, rather than progressive MS, and we are still collecting data about this, but the therapy is available privately ( see ‘my other work’ button)  and at 7 MS Therapy Centres:

Bedford, Portsmouth, Kent, Sutton & Croydon, Leicester, Berkshire and Hertfordshire and MS-UK’s Wellbeing centre, Joseph’s Court in Colchester.

Therapies

Lots of therapies, including Shiatsu, Reflexology, Yoga and ‘EFT’ tapping are found by people to improve wellbeing, energy and sleep which may then help with fatigue.

Remember that Disease Modifying Therapies (DMTs) all aim to reduce inflammation and relapses, and by doing so, can have a marked impact on reducing fatigue and improving how you feel. If you are eligible, but not on a DMT, review and reconsider the situation. If you’re on a DMT but still having relapses, request a review, as per the the MS Brain Health Campaign. And when choosing a DMT, ask about the common side-effects, explore how other people have responded, and choose one that fits best with your needs and aims.

happy

In summary, with both long and short term strategies, there are lots of things you can do to beat fatigue and enhance your energy. Some of the long term strategies take longer to bear fruit – but keep going; many people with MS can remember a time when they were so much more fatigued than they are now.

All the best

Miranda

 

Latest MS research – what I learned at ECTRIMS, part 2

xcel

Wow, what a full on 3 days for the brain! So inspiring to see a sea of research posters, a vast menu of presentations , and 8000 engaged delegates filling up on the latest research.

Bone marrow transplantation ( HSCT/stem cell) – is it a viable treatment for active relapsing remitting MS – debateimg_3970

Consensus was: safety is improving – from 2011 the mortality rate has been 0.3% rather than 1-2%. Due to impressive rates of NEDA ( no evidence of disease activity – relapses or on MRI) – 80% at 2 years and 70% at 4 years in one study;

Yes, but ONLY in cases of early/new, highly active/aggressive relapsing remitting MS, where person is young, still walking, and treatment with first & second line treatment have failed.

And now for something completely different, and please DO try this at home(!): Seriously, I will be

Lipoic acid for neuroprotection in secondary progressive multiple sclerosis: results of a randomised placebo-controlled pilot trial –  R.I. Spain (Portland, United States) lipoic-acid

This beautifully carried out RCT had people with progressive forms of MS taking 1,200mg of Lipoic Acid, a supplement often sold as an ‘anti-oxidant’, and also called ‘alpha-lipoic acid’ once a day. A control group took a placebo.

After 2 years, the group taking the lipoic acid had a whopping 66% less brain atrophy on MRI scan ( showing less loss of brain cells), taking them back to a normal rate of brain atrophy, and half the number of falls.

Love it when something so harmless is investigated properly and found effective. Especially good to have something positive for progressive MS!

Comparison of Beta Interferons, Fingolimon, Alemtuzemab (Lemtrada) and Natalizumab ( Tysabri)

showed that as we know, effectiveness in reducing relapses from lowest up goes: Interferons, then Fingolimod, then Alemtuzemab and Tysabri. The last 2 showed the same effectiveness in preventing relapses. Natalizumab also showed improvement in disability in the first year, but not after that. and as we now the side effect profile and the way you take it is very different. Tysabri also has a rebound effect if and when you stop taking it. 

Alemtuzemab

research was presented that showed this drug performing very well in ‘resetting’ the immune system. Around 60% of people did not need more than 2 infusions, and NEDA ( no evidence of disease activity) was very high., but only when used EARLY. Time to change from the ‘wait and see’ attitude? This is the push from leading MS experts. Maybe check in with the MS Brain Health campaign if your neurologist is dragging their feet.

Vitamin D vit D.jpg

very strong evidence coming through from numerous sources that notwithstanding previous medical controversies and uncertainties, all people with MS should be on high dose from diagnosis – 4-5000 IU daily at least, and testing ( backs up info already posted on this blog) MS Base ( a database with over 41,000 people with MS’s records) showed a clear seasonal peak in relapses around the world, at the end of winter; with a time lag, shorter in colder countries. Low vitamin D levels were the strongest risk for progression in another study, and added a further anti inflammatory effect to people already on a disease modifying treatment, in another.

One study found that  people with MS given 100,000 twice a month for 2 years had a 60% reduction in relapse rate, and a 78% reduction in new lesions, compared to placebo. Powerful stuff, hopefully enough to finally swing the doubters.

Siponimod for progressive MS

presented as promising new treatment but I missed that session so – investigate!

Scientific highlights presentation – was split into 3 sections ‘migration and CNS injury’, ‘Gut and Food’ and ‘remyelination and oligodendracytes’

At the end of the event, I was really surprised to see these slides in the highlights – I missed the full presentation but one slide went like this:

hb02Oxygen

MS from an energy perspective.

Q:Why are animals with experimental animal MS paralysed?

A: Axonal ( nerve) depolarisation ( can’t send messages)

Q Why are axons depolarised?

A: Hypoxia ( lack of oxygen)

Q: Why is the inflamed central nervous system hypoxic?

A: Reduced blood flow

Q Why is blood flow reduced?

A: Currently unclear , CNS specific ( ie we don’t know, but it’s just the central nervous system.)

Went on to describe how animals with this experimental model of MS respond very well to hyperbaric oxygen: Oxygen therapy reduces pattern 3 demyelination.

So maybe we will see some new research showing usefulness of hyperbaric oxygen? If you can access it, I always say that it’s worth trying, and observe the effects on yourself.

Diet and Gut in MS

Feels like finally, the importance of aspects of diet is being addressed and listened to in MS research. In fact all present were enjoined Not to ignore environmental factors. Hurrah! a strike for logical thinking!

This was a feature of quite a lot of research at ECTRIMS. Lots of research on the role of the Biome ( bacteria in the gut) and how it affects MS. Interesting, exciting, but we still haven’t nailed practical application yet, so best bet is Take a daily probiotic capsule or powder, with as many different strains in as possible. And do these things, discussed previously.

Being overweight was identified as a serious risk factor for both developing, and worsening with MS. If you’ve got pounds to lose, check out the excellent ‘Fast Diet/ 5:2 diet’, showcased by Micheal Moseley on the BBC -https://thefastdiet.co.uk/ fasting also has benefits for inflammatory conditions.

Salt:  

salt stored in the skin was posed as a driver for auto-immune neuroinflammation in one paper. People with MS were found to have higher levels of salt in the skin….so that too… we could all cut down our salt – most is found in processed foods… and as you do it, your tastebuds acclimatise so it won’t mean you won’t taste your food.

Ending on a high

Conference ended on a high note, celebrating the huge progress that has been made in preventing disability – progress that started even before the availability of the disease modifying drugs, but has in recent years added a further 15 years of non-disabled life to the average MS-er, and is still making leaps and bounds.

I hope I’ve made an accurate summary of the sessions that I attended – mistakes are possible, and they will be all  mine. If you spot one, please let me know!

That’s all for now, til the next time!

miranda

 

 

 

 

What I learned at ECTRIMS: part 1

Hellectrims-webo from the 32nd congress of ECTRIMS, & the 21st conference of Rehabilitation in MS.

 

 

ECTRIMS is ‘ Europe’s and the world’s largest professional organisation dedicated to the understanding and treatment of multiple scelrosis’

With over 8000 delegates, all specialising, of with a special interest, in MS, it’s a privilege to attend! Loads of lectures run concurrently, so you can never attend everything. And the really science-y lectures, that are not yet going to make a practical difference to my patients, tend to go over my head a bit. Or a lot, depending! So here’s a digest of what I’ve learned so far, that has a practical application for people with MS!

The intro – X. Montalban (Spain)ectrims

Good to hear the current aims:

  • Evolving the Diagnosis of MS, so it can be made more quickly, but still be accurate. ( did you know there are 100 other conditions that can cause MS -like symptoms?)
  • getting better at Prognosis – working out who is likely to develop definite MS, and who with MS is most at risk of becoming disabled
  • in order to Personalise treatment – this means ” the right drug, at the right time, for the right person. And, at the right price.” Moving away from ‘first-line’ and ‘second-line’ treatments, to personalised treatments. Did you know that people treated with a disease modifying treatment before the second relapse developed less disability?

This leads into a presentation I saw in the break:

Brain Health – G. Giovanonni (UK)

This is a campaign led by Gavin Giovanonni of Bart’s ( UCL) hospital, London, and an international steering group of MS experts, with funding from some of the major disease modifying therapy (DMT) manufacturers.

The focus was on healthcare professionals, to improve services for people with MS, with, again, speedier diagnosis, prompt treatment, adequate follow up to find out if treatment is working, to allow an alternative or more aggressive treatment if the original one is not having a good enough effect, and certain standards of MS care – eg – noone with MS should get a pressure sore in your area of care etc.

People with MS can get involved with this project, and download the guide  to help get what you need from your neuro services. It also strongly recommends the lifestyle measures to keep your brain healthy that have the most robust clinical evidence in MS to satisfy the health service, like:

  • Exercisebrain-health
  • not smoking
  • not being oeverweight
  • not using too much alchohol
  • exercising your brain
  • continuing with prescribed medical treatment

You know that I believe in doing even more!

http://www.msbrainhealth.org/

 

Rehabilitation strategies – what works? – J. Freeman (UK)

img_3957This presentation was kind of frustrating. Only because we all know physios, OTs, psychologists, physical therapists who do great work that makes a big difference to people with MS’s health and lives. But because we’re not organised or funded to perform large scale randomised controlled trials ( as drugs are), most of the studies done aren’t ‘robust’ enough to prove the effects. This is a problem in and with the evidence based medicine approach – it has a tendency to turn all medicine into pharmaceutical medicine.

The interventions whose evidence is robust enough are:

  • Exercise ( this is coming up time and time again! Did you know that exercise has recently been found to be not just good for you in all the ways we already know, but actively anti-inflammatory?)
  • Endurance training,  and
  • Supported treadmill walking ( probably not massively better than other interventions, just done good research, possibly due to industry funding)

Improving mobility – D. Centonze ( Italy)img_3963

An extremely scientific presentation, suggesting that mobility could be preserved by measures that help to restore excitability to the nerve connections; ‘long term potentation’ and ‘synaptic plasticity’

At this point I really wished that the organisers would round up their presenters and give them presentation skills; however, what I THINK he said was:

Certain interventions can restore excitability, and thus improve mobility. And these are:

  • Exercise ( yes, exercise again!)
  • SSRI antidepressants (I’d have to know a lot more about that before recommending this. Like, is this all theoretical or have they conducted studies to show this effect??
  • Cannabinoids (Likewise)
  • or drugs that use these pathways for their effect
  • Electrical stimulation (because it activates cannabinoid and dopamine receptors)
  • And disease modifying therapy, because it helps to prevent inflammation, which is harmful

Treating MS bladder dysfunction – J. Panicker (UK)img_3967

Nothing new for me as an MS Nurse here; I’ll do a blog on the bladder; but confirmed the point I made earlier in this post about alternatives to anticholinergics that cause cognitive problems, and nice to see it being discussed. Add to that: Darifenacin or Tropsium if you can’t get Mirabegron.

Chasing the driver of fatigue in MS – V.Biberacher (Denmark)

Now this was really interesting. Why people get such fatigue in MS has always been a big question, and one that there are a lot of theories about. These investigators wanted to see
whether it was more associated with damage and lesion load in the brain, which can be measured by MRI scanning, or by inflammation, which can be measured by inflammatory markers in the cerebrospinal fluid ( CSF ) taken by lumbar puncture.

What they found, was that there was no significant relationship between damage and lesion load in the brain, but there was a significant relationship between inflammatory markers in the CSF. This suggests that inflammation, rather than structural damage, is responsible for fatigue in MS.

The take-home from this is that there are many ways to help reduce inflammation in your body – both your drug treatment, and lifestyle measures – eating an anti-inflammatory diet, getting good rest and sleep, becoming more resilient to stress, exercising, sunshine, vitamin D…

Dual lead deep brain stimulation for tremor – S. Oliveria (USA)

Study showing good effects on refractory ( ie won’t respond to any treatment/ drugs) tremor, in a small group of 11 people. 8 (73%) showed benefit at 6 months. 2 did not benefit; they had ataxia ( like clumsiness) rather than tremor. One got infected and had to have the leads removed. Kind of let down by the fact that they used a scale to show effectiveness, which didn’t show the actual result for the person’s functional improvement. So worth finding out about, but not a sure thing until we hear what the results of treatment for the actual people were. Grr!

Hot topic – bone marrow transplantation is a justifiable treatment for active relapsing remitting MS

Now I’m getting too hungry to report on this debate about stem cell /bone marrow

img_3972

When you want to be in two places at once….

 But I’ll try to finish this off tomorrow!

All the very best!

Miranda