Planning to stay in control

As Benjamin Franklin once said, there are only 2 certainties in life; death, and the taxman, (!) and you don’t need to have a life-limiting condition to make plans about what you want to happen in various circumstances that could, possibly, end life. But how many of us have?

At the MS Therapy Centre in Bedford, we sadly lost a member recently;  who’d been getting along, managing with lots of disability, but had a very mellow outlook, a sunny smile, and life was still sweet. However, a sudden infection in this sort of case, can prove fatal, and this time, sadly did. Losing her company  coincided with me visiting Leeds for an excellent study day run by the MS Trust, about end of life issues.

MS end of life study day Mirandasmsblog.com

Hello Leeds! & Thankyou, MS Trust

Well, I can tell you that  as a nurse, I’m perhaps more aware of the ‘circle of life’, and my husband is under strict instruction that should anything ever happen to me, he must ensure that my legs are shaved and my makeup is on at all times – and apart from that, I’m not bothered!

dear hubby, - don't let this happen!

dear hubby, – don’t let this happen!

lipstick

But what other options are there, and how can you ensure that what you want to happen, will happen?

What I learned yesterday, is that although there are various forms you can fill out, it is just as valid to put your wishes in a letter, to be shared with  the GP and close family/friends, kept with your notes with any health or care providers, and on the fridge at home if you have been going in and out of hospital recently.

Planning for future care doesn’t mean that you can’t change your mind later, and restate your intentions, but sometimes, if you do become very unwell or disabled, it can be hard to make your wishes clearly known. Putting your wishes down on paper can give you more control, and give yourself and family members of carers peace of mind, that in the heat of the moment, what happens is what you want to happen.

In law, we don’t have the right to demand certain medical treatments, and the default position of our health service is to always treat what can be treated. We do have the right to refuse various types of treatment however. So  things to think about are:

  • If you were taken ill with an infection, would you want to be taken to hospital, or treated at home?
  •  If you weren’t able to take antibiotics as tablets, would you want them intravenously? This can also be organised at home in most areas.
  • If you were extremely poorly, would you want to be put on a ventilator?
  • If your heart stopped, would you want to be resuscitated?
  • If the answers to these questions depend on different circumstances, what would those circumstances be?
  • In the event of becoming very ill or unable to communicate, what is important to you?

See me to discuss these issues further, or help to draft up a letter.

On a lighter note (SUUUUUUCH a bad pun!) Last year, one of our members emailed me to let me know how much better he was feeling after just a short time using a lightbox. Here’s what he said then:

Hello Miranda,
Further to our chat in the car park at the MS Therapy Centre on Thursday, here is the link to the light box I was talking about:
http://www.amazon.co.uk/SAD-Light-Box-Medically-Certified/dp/B00A6SHSHY

I found it on Amazon for £44, plus about £5 p+p, which gives a total cost of about £50.
There are others which cost in excess of £100 but, having read the reviews and specifications, they all seem to do the same job.

In my totally unscientific testing, I’ve found that I feel better and have fewer symptoms if I have the light on when daylight levels are low.
So I use it when it is raining, fully cloudy, or just more cloud than sunshine and mainly first thing in the morning and towards the evening.
I have it sitting about 3 to 4 feet away, at head height and just over my right shoulder when I’m working at my desk on my computer.
I wouldn’t recommend having it pointing at one’s face as it is very bright and would likely lead to eye strain.

I have only had it about a month, but have noticed a difference on days with heavy clouds when I haven’t used and when I have.
I’m looking forward to seeing what difference it will make this coming winter.
If you’re interested, I’ll let you know in the Spring whether it worked or not.’

Well, in the interests of science, journalism and health, I thought I’d follow that up after 1 year, in these gloomy days of February! And the answer is, Yes! He still finds this very helpful, reporting that the warmth and brightness give a definite sense of wellbeing, it appears that urinary urgency is reduced, and he has a marked decrease in fatigue/improvement in energy levels, and is able to work until about 5.30, instead of about 3.30pm each day. Very Interesting. Thankyou, mystery tester.

lightboxRemember that lightboxes don’t get you  making vitamin D, which is important especially at this time of year; a sunbed will, as long as it includes UVB rays. As long as you’re responsible about your skin ( not using sunbeds to get a tan, but a quick dose to just before you start to change colour) there’s no harm in using both… but roll on summer!

 

Powerful & transformative stuff. Global Gathering 2013

This work is very powerful, deep and transformative. Many of you may have the same resistance that I do to the style of presentation, which is very Amercian, and lots of mannerisms that go against the grain with me, but don’t let it put you off. I’ve done the 3 day Journey Intensive, and have seen it work; it’s a great tool. I have no idea what this will be like, but I’d challenge you to go for it, and if you have health problems, use it alongside any other treatment  you’re having. Click on the link below – it’s tomorrow!

Global Gathering 2013.

beautiful film ‘The Inner life of cells’

It’s all going on inside us…
and below there’s a transcript of a functional medicine doctor narrating to the video so you know what you’re looking at:

17th International Symposium on Functional Medicine
Cellular StructureNarration—“TheDance”
Jeffrey Bland, PhD
5/20/2010

(Start Transcript)

I think the best way of demonstrating “dance” is to show a little visual, so if we can go to the video. I’m
going to take a little bit of your time (3 minutes), and we’ll just talk about the emerging view of the
dance.

Here you are looking at lymphocytes, right? Traveling down the bloodstream, winding through the
membrane receptors, the cellular architecture, creating signals through the bilayer of the membrane,
through the laminar structure, creating architectural changes in lipoproteins.

You see the lipid rafts. These lipid rafts are transport proteins that are involved with cholesterol
phospholipids that then engage the internal workings of the cell with the outside activity that signals
through the actin and mycin neurofibral network to create, then, messages that transduce through the
cell. This is called intercellular signal transduction, that travels down through this lattice network—this
gelatinous structure—to ultimately reach the deep structures of the cell, the various organelles: the
lysosome, the mitochondria, the ribosome, and ultimately the nucleus.

This is constantly being reformed and regenerated all the time, in real time. It’s not static; it’s dynamic.
It’s being responded to in part by the environment itself. As you have this kind of re‐creation process
occurring, it is recreating itself in the context of the environment that is changing as these fibrils are
made, then broken down, and then re‐made. It is re‐forming the cellular architecture to engage in a new
phenotype.

You have these transport molecules that are transporting throughout the cell these extraordinary new
machinery that are going to produce the new phenotype of the cell in response to its changing
environment. And as the information, then, is transduced into the internal portion of the cell, the cell is
this plastic environment that is dynamically changing the molecular configuration to respond, in fact, to
those new environmental conditions, and in so doing, you are producing new proteins like ribosomes.
You are producing new posttranslational protein alteration by phosphorylation, glycation, oxidation.
These proteins, then, travel to various organelles like the mitochondria, the energy powerhouse of the
cell, where they enhance bioenergetics. Or they may, in fact, move themselves into the cellular
membrane, where they translocate and become part of a plum pudding model of the cell membrane—
become antennae that will pick up new messages from the outside environment that transducer new
information to the cell.

The cell is a constantly dancing, changing, morphing, altering, dynamic process that is creating a
rhythmic response to a changing environment, and eventually it leads to the expulsion of various
proteins that send outside signals. These may be cytokines. These might be prostaglandins. These might
be hormones that then send distant messages to altered parts of the body as all of this rhythmic,
dynamic process is occurring.

It is a demonstration that we are in a constant dance—that what we think is static is not. It is all
dynamic. It is all holographic. Every cell is in connection to every other cell. I

Stopping Brain shrinkage, new research on statins in MS, MS Trust Annual conference 2013

mstrust annual conference 2013I’m Warwickshire at the MS Trust annual conference! Most impactful new learning so far?

Ok, soon to be published research by Jeremy Chattaway on the use of statins in progressive MS to reduce brain shrinkage.Everybody’s brain shrinks! by 0.2% a year. But for people with MS, the average is 0.6% a year.

This was a phase II trial of Simvastatin, a commonly used drug fro cholesterol ( that’s right, it reduces fat in the bloodstream). It also has ‘profound immunological effects’ and can cross the blood brain barrier ( ie get into the brain)

10-12 years ago this was trialled in relapsing remitting MS, but did not become an accepted treatment. Because secondary progressive MS also has features of inflammation, though in a more slow burning sort of way, it was decided to trial it, at 80mg daily. That’s a high dose, double what a lot of people with high cholesterol might take.

140 people were randomised to take this or a placebo. after 7 years, brain shrinkage in the group taking the drug had halved to 0.3% ( almost the normal rate).

Now I really hate putting my hand up to ask questions at these dos, because it’s really scary, you have to use a mike, everyone looks at you, and some neurologists are very dismissive and make you feel like an idiot in front of all your peers…. but I had to ask

” Do you have any idea what the mode of action is for simvastatin, and is it associated with reduction in saturated fat in the bloodstream, or not?”

With great releif, that was replied with ” Very good question!” .. and the answer that they really don’t know. Could it be “microvascular? a protective effect? or to do with cholesterol? All of this is discussed in the paper, which will be out soon!”

Phew. I hope someone will appreciate my sweat and blushes.

Also in Dr. Chattaway’s presentation was the new research recruiting now for people with 2ndary progressive MS, which I already shared in the post on MS Smart.

Additional understanding for me was the process they did of trawling 30,000 existing drugs that could possibly have form in protecting brain volume or nerves, to come up with the 3 most promising –

  1. Ibudolast, a Japanese asthma drug, which reduced the rate of brain atrophy in people taking it for asthma
  2. Riluzole – a drug that people with Motor Neurone Disease have already been taking for some years which showed that it reduced shrinkage of the spinal cord ( showing that it reduced loss of neurones, and
  3. Amiloride – a well known blood pressure drug in the UK, which blocks calcium channels in the brain, and reduces brain shrinkage.

People who enlist in the research to find out if any of these agents can protect the brain from axonal ( neuronal) loss, and thereby slow or halt progression, will be put on either one of these drugs, or a placebo ( dummy drug) for 2 years, and followed up with the usual clinical assessments, plus about 3 MRIs. There will be centres all over the UK so that you don’t have to travel too far.

Right. Now I’m off to get ready for the fancy dress gala dinner, subject, favourite childhood character. anyone else remember Pippi Longstocking? And later, i will be able to have a bath, with Nobody interrupting me!! More info, plus Photos( but not of the bath) later!

Groundbreaking results for significant pain relief with APS Therapy

APS Therapy update; our first results for people with pain

APS effective for pain chart

At the MS Therapy Centre, we are trialling a new electrical treatment for pain, called APS Therapy (See previous issues for an explanation!)

Here’s a round-up of our results so far.
Some people have completed a course of treatment, some are ongoing, and some have only just started and had a few sessions. We are working hard to make sure we collect better data in future so we can answer more questions. We used the ‘Visual analogue pain scale’ which measures pain out of 10, with 0 being ‘no pain’ and 10 being ‘the worst possible pain’

Neuropathic pain in limb:  7/10 down to pain free; complete pain relief which lasts 4-5 days, but appears to need long term treatment as comes back after this time.

Neuropathic pain in the feet  and feeling  ‘like walking on hot sand’, constant, 6-7/10 down to 3-4/10 in 3 weeks, hot sand feeling down to ‘not very often’ and improvement in blue-ish discolouration due to poor circulation..

Hip pain 6/10 constantly, complete relief since the first week, has not returned, and a decrease in neuropathic pain in the leg from 4/10 to 2/10 in 3 weeks.

Back pain, 8-9/10, worse on exercise, down to pain-free, 2-3/10 on exercise. Treated x 2 weekly for 6 weeks. Has not returned, 1 month after end of treatment. Leg pain, ‘pounding, throbbing’, 8/10, down to pain-free, has started to creep back since recent sensory relapse.

Long term shoulder pain, 2-7/10 to ‘much better’ but has since had to stop treatment for personal reasons.

Hip pain 10/10 plus, no benefit. This could be because there’s a serious problem that needs attending to underlying the pain, or because high doses of opiate painkillers make the treatment less effective. We’ll be helping this person get the right investigations and treatment, and maybe try again later.

Arm pain, possibly radiating from shoulder, no cause detected by GP, 2-3/10 with episodes of stabbing pain 5-6 x a week at 10/10; down to 1& half/10, no episodes of stabbing pain after 2 weeks of treatment

Headaches, constant, 7/10 down to pain-free, and back pain 7/10, down to 1/10, plus complete relief from insomnia.

Chronic pelvic pain, 2-4/10 normally, 7-8/10 when bad, happening less frequently, tramadol usage has dropped from daily to 2-3 x a week, now reducing Amitryptilline also.

Hip pain, 8&1/2 /10, very severe, ‘sickening’, no change, although improvements in sleep pattern. We are helping this person get investigations carried out.

Hip pain, 7/10, 8/10 when worst, down to 4/10 after 3 treatments, but also had deep physio manipulation prior to starting!

Severe muscle spasm and spasticity, no change after 12 weeks +

MS fatigue; no change

MS fatigue; no change

Headaches, 4-6/10, 9/10 when worst, 2-3 x a week, for most of life, worse since starting Rebif, down to pain-free; has had one headache since starting therapy, when had not drunk enough water. Has not taken regular painkillers for weeks. Back pain, 4-6/10, 7-8/10 when bad, down to 3/10. Stopped Naproxen and Co-codamol use. Knee pain (which was unreported, as forgot about it) has disappeared. Much more energy, staying up past bedtime, cleaning.

People who’ve just started:

‘Squeezing’ altered sensation feeling, 7/10, 9/10 when worst, no change yet after 4 sessions; muscular pain in shoulder blade area, 4/10, 8/10 when worst, down to 2/10 after 4 sessions.

Shooting, stabbing, intermittent pain in knees, 5-10 -11/10 down to 4/10 max after approx 2 weeks

Tennis elbow, 8/10, worst 10/10, now 6/10, worst 8/10, significantly improved range of motion and no sleep disturbance due to pain, after one week’s treatment ( and also carrying on with Bowen treatment)

So in summary, in our study so far, 18 people have used the APS Therapy at the Centre, 17 with MS and one member of staff. 2 tried APS for fatigue, and 1 for spasticity, and disappointingly, these conditions have not experienced a significant benefit to date.

15 people used APS Therapy for pain. Of these, 13 have felt a significant reduction in pain, and 2 have not. 2 also report a significant increase in energy. Of the people with pain, 5 have achieved pain-free. Of these, 2 people’s pain has not come back since completing the course, one needs to maintain therapy once a week, and 2 are still completing their course of treatment.

We’re delighted that Denise, who many of you will know already from the Gym, has now been employed 3 days a week to also help run this project and help people to use the APS machines at the Beds and Northants MS Therapy Centre. If you are having a problem with pain, you can come and see me (Miranda) for a full pain assessment. If APS Therapy seems like an appropriate course of action and you:

a) Can get in 3 x a week ideally; twice if necessary, and

b) Can drink 1&1/2 litres of water a day, and

c) Have none of the following: heart attack, deep vein thrombosis, stroke or pulmonary embolus in the past 3 months, cancer, epilepsy, or pregnancy.

I will refer you on to Denise, to start a 6 week treatment plan. For some pain, APS Therapy may be able to completely and permanently resolve the problem. For some people it may not help at all, and for others, it may significantly reduce or resolve the pain, but need to be continued to keep getting the effect. In those cases we can help you to purchase your own machine direct from the manufacturers if you wish, and also to apply for charitable funding if money is a problem.

It’s very exciting to be working with such a new, drug-free treatment. We intend to start helping people to review their medication once they get a good result, with a view to reducing pain medication.

APS chart, pain, fatigue, spasticity

APS chart, percentage pain-free