Motor Neurone Disease (MND)
Complementary therapies and alternative treatments for MND
The phrases 'complementary therapy' and 'alternative therapy' are often used as if they mean the same thing. But there is an important difference. Below are helpful definitions (adapted here for MND from Cancer Research UK 2014):
"A complementary therapy is one that may help you feel better and cope with the condition, but the therapist will not say the treatment can cure your condition. 'Complementary' means you can use these therapies alongside your regular treatment."
"An alternative therapy is generally used instead of conventional treatment. An alternative therapist may suggest an alternative approach will work better than conventional treatment. But there is usually no scientific or medical evidence to back this up. Some alternative therapists may claim they can cure your condition. Some alternative therapies are not entirely safe and can cause serious side effects."
Many people living with MND find that using complementary therapies alongside traditional medical care can help make them more comfortable and reduce stress, improving their quality of life. The treatments are becoming increasingly available on the NHS, with many general practices providing access to complementary therapy. The MND Association provides information sheet 6B: Complementary therapies on their website. Some people we talked to had tried a range of complementary therapies. The most popular tended to be those focused on massage, meditation and relaxation.
Aromatherapy helps her breathing. She likes massage and has tried acupuncture. Meditation makes...
Do you take any other alternative, complementary therapies?
No. I've, I've, it's mainly been aromatherapy. I've had a massage, particularly of my feet. I get very bad circulation and blue feet. Although people think that they're just very tanned, so I just let them think that, but actually they're blue [laughs]. But, yeah, they get, they get very cold. And it's, it's actually just really lovely to have touch, you know, the feeling of human touch. So massage is lovely. I haven't really dabbled into reiki or acupuncture, really. I've had a little bit of acupuncture, but only a couple of times. And that's just really more down to availability than anything. I think if someone was saying, offering me some and 'Can I come round and give it to you' then I'd take it. But, you know, I think I just sort of haven't, haven't really found somewhere on my doorstep or to make it easy.
And I think in terms of those sort of things, I do, I do, I've done a mind-body-spirit course - a couple of those, actually, in New Zealand, and I've found them hugely supportive. They really, really have helped me, and really helped me think about life and things in a very, in a spiritual way. But not in a, not - that sounds heavy - but just in a very, opening my, it feels like it's opened my eyes, really, and has made me face a lot of things that weren't always that easy. But it's meant that I've processed them. And I think that's been much - you know, a really healthy approach for me. It's taught me meditation, and I do use meditation tapes, particularly if I have an upset day when I just sort of wake up and I'm just feeling really down, which I get every now and again. Again I'm lucky, I don't, it doesn't bog me down, but every now and again I'm just having a real down day, and, and if I put on a meditation tape and just do a half-hour meditation, I just come out the other, other side completely different and feeling much calmer inside, and stronger. So that's a hugely beneficial tool. And it, and that's what I felt like the course gave me, was tools to deal with things. It taught me belly-breathing, the value of water and, and just really the power of the mind really over your physicality as well. And really I know that if I did meditation every day it would be very beneficial for me. I still don't do it [laughs]. But I know that it's there to draw on if I need it.
She thinks yoga and meditation can make people feel better, but is sceptical about any therapies...
One man was very positive about reflexology on his feet. Immediately afterwards he always felt very tired, but then he would feel much better. He felt it was particularly good for helping to clear his throat. Others had tried reflexology and found it made no difference. One man said, “I tried acupuncture, I tried reflexology and all sorts of things, and nothing worked for me, not for any length of time anyway.” Another man found acupuncture relaxing but decided he could not justify the expense.
Acupuncture relaxed him, but he saw no longer term benefits and it cost too much. It made...
Some people were interested in particular foods, food supplements, herbal and homeopathic remedies. There are scientific reasons to suggest anti-oxidant vitamins C and E and various other supplements may help some symptoms, but so far clinical trials have yet to produce evidence to show benefit in practice (see 'Medication, trials and research for MND'). One man had heard honey was good for immunity and the nervous system, but he advises against taking it too regularly. After eating it daily for some years, he was diagnosed with type 2 diabetes and thinks the honey might have contributed to this. A woman with excess saliva recommended tomato juice. (Pineapple or papaya juice is also sometimes recommended for people experiencing thick or sticky saliva, as it contains a natural mucolytic, a substance which helps break down mucus, but there is no clinical evidence or clinical trials results to prove whether any of these food substances can help with the symptoms of MND).
She uses cranial-sacral therapy, acupuncture, and aromatherapy. She takes tomato juice for excess saliva, and Echinacea and Bach Flower Remedies. [Voice software interview].
Six months on I have cranial-sacral therapy, acupuncture, and aromatherapy massage on my face. My energy is improved with these treatments. Also the circulation to my hands is better and my sinuses are clearer. This is to improve my wellbeing and to cope with the MND. When I over-exert myself, I produce excess saliva. This is very troublesome and drags me down. At night I suffer from a dry mouth which is equally distressing.
I have tried various medications to relieve the excessive saliva, but none are effective. I am currently experimenting with eye drops taken orally. There is a slight relief which wears off by the afternoon. It is not troublesome when I am sitting or lying, so I conclude it's nature's way of telling me to rest. It comes on distressingly when I am exerting myself. By late afternoon it is worse. Tomato juice and eating by mouth seems to pacify it. By the time I was diagnosed in mid 2006, my laugh had changed. Currently, my laugh is a hilarious sound and people are unsure if I am crying or laughing. It is an uncontrollable noise, very loud, strange, and most embarrassing [laughs]. Crying is very distressing because it increases the saliva and it is easy to choke on it. When the saliva is really bad I become emotional.
I wear magnets at night to help breathing. These were offered by the local hospice and are invaluable. Apparently they have an anti-inflammatory effect so I use them to target muscle aches. I take Echinacea daily to boost my immune system, and Bach flowers - Oak and Star of Bethlehem. These help mood. I am also taking Vitamin E and make sure I have a glass of orange juice daily through the [PEG] tube.
He takes noni juice and ginseng, and sour milk. He is careful about diet, but feels a little...
Now, one other thing' I drink - I won't say copious amounts - but I drink alcohol. And I refuse to be told not to. The reason for that is it's an excellent antidepressant. Wine at any rate contains a detoxifying agent, and many stronger drinks have other beneficial properties. I will not change my lifestyle in that way. In fact I'm trying not to change my lifestyle at all wherever possible, except I can't do things that I used to do.
One young woman had rapidly progressing symptoms but certain features puzzled doctors and they were unsure if MND was the correct diagnosis. She tried Chinese herbal medicine, partly as a way to try to rule out other possible causes.
They tried Chinese herbal remedies and acupuncture partly to rule out any other problems. It...
'and who does quite a lot of homeopathic pharmacy. She lives in [a city], and her business is in [the city]. So that she knew people and thought that we should try some Chinese alternative medicine because there might be something to do, it might be something to do with her gut, and something to do with her digestive system and therefore we at least could eliminate that by going down the Chinese medicine route, which we did. And she recommended a very good Chinese doctor in [the city], or through a friend of hers in [the city] she knew this person in [the city], who had worked at motor neurone and stroke hospitals in Northern China and was very expert at what he did and so was used to the condition that Olivia was in.
And amazingly her energy levels which by then, this was back in I suppose October, her energy levels were getting pretty low and they were completely revitalised. The acupuncture and the herbs that he was prescribing made a huge change. Whether it was psychosomatic or not, we simply don't know. But certainly the acupuncture was not, and she began to get movement back where movement had stopped. There was no doubt about that at all.
Whereabouts was that that she got the movement back?
In her arm and legs, and the legs were getting stronger again and the arms were, the hand movement and the arm movement was getting stronger. And so that filled us with huge hope, all three of us, and our friends. And so we went back on two other occasions. This was a week's intensive acupuncture and herbal medicine.
But there are downsides to that in that for every time we went to see the Chinese doctor it was any number of transfers in and out of wheelchairs, in and out of cars, into offices etcetera. So we were using a lot of energy as well as restoring a lot of energy so it was a balance. We did five full days the first time. We did four days the next time and then we did four days on one last occasion. By the end of that last occasion we hadn't progressed at the rate that the Chinese doctor thought that we might progress, in his experience. And he was coming to the view that actually there wasn't a lot more that he could do. And I suppose it was at the end of that last session which was at the beginning of December that we really came to the conclusion that we weren't going to, there was no short term fix for this, if indeed there was a fix at all. And it had always been at the back of our minds that, you know, that it was motor neurone and we were beginning to think that perhaps it was at that stage, all three of us but we kept fighting.
At present, the only treatment which has been proven to slow the progression of MND is riluzole - see 'Medication, trials and research'). In the absence of any other proven treatment, some people had investigated more unusual treatments which claimed to slow down or reverse the progress of MND, or even to offer a cure.
He takes several supplements and herbal remedies, but also low-dose naltrexone, normally used to...
Now I'm trying cat's claw. But it's without TOA [Tetracyclic oxindole alkaloids].
You mentioned vitamins. What vitamins do you take?
B, E, C, mainly. Coenzyme Q10. Ginseng. Oh, a lot of things. Silymarin. You know what is silymarin? A sort of herb extract, thistle milk. It's silymarin, I think, it's the same. What else?
Are you taking any other drugs, I mean apart from Rilutek?
Yes, just one antibiotic, minocycline.
Are you taking that as part of the trial or just independently?
I asked my GP to prescribe me. Because my neurologist, he refuse everything [laughs] except vitamin E.
How do you feel about the neurologists that you've encountered?
My neurologist? I don't know what he can do. You know, he can do nothing, probably, because they don't know what is this disease. They've got no treatment for it. They don't know what causes it. They know some people have it, they're dying. They could do something, at least they could try. I ask him to prescribe me a few things. He refuses, 'Not proven, not proven, not proven.' Ah-ha, I'm trying to use naltrexone. You know what is naltrexone? It's a drug for alcoholics and drug addicts. It's blocking something in the brain. But I'm trying to use low dose of it, very low. Like normal dose is around 50 to 100 mg. They're using 4', 5 mg per day - per night actually, because you should take in the night. It blocks some receptors in the brain'A lot of people use this thing for multiple sclerosis and it helps them. And my neurologist says, well, he refuse a prescription. I got it private, from somebody else.
So that's a prescription-only drug, that one?
It's prescription, yes.
Right, OK. Where do you find out about all these things? Is it on chat room, forum things?
No. Forums, no. Probably the forums they're controlled by somebody, they won't put this kind of information. At least I know the Polish forum, they won't say anything about this treatment, like LDN [low-dose naltrexone]. They say the same as my neurologist, 'It's not approved, not approved.' They don't want to talk about it, they don't want to try.
One couple had investigated various options but were wary about 'quirky' treatments, as they described them.
They consulted a homeopath but decided not to follow the advice given. They don't believe in ...
But we did actually go and see, we did try some alternative therapies, and we went to London to visit a homeopath, who said, 'Take out all your mercury fillings. And don't eat dairy and don't eat wheat.' So that didn't suit. Because the answer was there was nothing she could do. And that is, the answer is that there is nothing that can be done, and you have to live with it the way it is.
Some people had tried treatment with machines using electrical currents. One man had tried what he described as 'a bit like a TENS machine' from Denmark, recommended to him by other people with MND. He felt no benefit and was sceptical. He commented, “I know some people claim success, but it's usually associated with a great deal of care and attention and physiotherapy.” Another had similar experiences of a bioelectric healing device called Scenar which also did not give any benefit. It has not been proven that any of these devices are beneficial to MND and can cause a lot of unnecessary expense trying them out. He was also wary of advertising for expensive private stem cell therapy.
He can understand why people feel driven to try anything in the search for a cure, but he's...
And it was a Russian doctor who was doing the treatment and she asked me beforehand to try and I think pinch my forefinger and thumb together as some sort of minor strength test. And then we went through the treatment and then she got me to do the same test again and of course she announced that I was ten times better as a result of the treatment and her test. But I could tell from her test that she wasn't pushing as hard the first time, the second as she had been the first.
And subsequently I've contacted the MND Association about this Scannar [Scenar] product and their reply has been that there is no evidence that this product does any good. The fact this comes from the wilds of, I think it was, it was an offshoot apparently of the Russian space programme. But anyway basically I didn't believe it. I was convinced that she was a charlatan to be frank. Unfortunately our friend is, oh I say unfortunately it's up to her, she has bought one of these machines and is giving people therapy, using it. I guess if it, you think it's doing you good then it is doing you good.
What I've not contemplated doing it and I don't intend to is to go on any of these stem cell treatments with. I've seen prices in five digits, in 10, 20, 30 thousand pounds for treatment in. It used to be in the States, the USA but they now seem to have spread to China and Holland as well I think advertising stem cell implants into your brain or wherever. And as the medical profession like to say there is no evidence that any of these treatments have worked. And there's no science behind it either particularly. Having said that I can fully understand people wanting to take any, go to any extremes to try and prevent or arrest the disease. I feel as I keep on saying I think, lucky that I've got PMA and I think will have it for quite a few years to come. And there's certainly no need for desperate remedies at the moment I think.
This view was echoed by others who completely understood the feeling that anything was worth a try, but warned people to be on their guard against organisations or practitioners trying to make a profit out of unproven treatments. The use of stem cells to treat MND is a promising area of research, but it is still in an early experimental stage. The treatments being offered at great cost by some private clinics have not undergone proper clinical trials to prove whether they work, and may carry the risk of serious side effects.
One couple were approached by a private clinic in Holland offering stem cell treatment. The clinic has since been closed. As Gill explained, “If we knew there was a cure for motor neurone disease that was buyable, we would live in a tent, we'd sell everything that we've got and live in a tent. But you've got to be sensible about things.”
They were offered stem cell treatment by a private clinic which has since closed. They'd do...
Was that the place that's been closed down recently?
Yes, yeah, the one in Holland, yeah.
We were approached.
I think it was on 'You and Yours' or one of those Radio 4 programmes.
That's right, yeah, it was. It was closed down. Because [name], Mike's cousin, said to us, didn't he? 'Just don't even go there.' The horrible thing is, and we've discussed it, this at length with a lot of people, the horrible thing is that when you've got this disease you'll search for anything. You'll search everywhere and, you know, and people are, are paying huge amounts of money for stuff that isn't going to work. Now we talked to the professor down at [London hospital] last November and we had this discussion with him, and obviously we were desperate to get some sort of cure or whatever. And he convinced us that, you know, not even to go there with it. You know, he said, 'If anything, anybody's going to know anything about cures for motor neurone, I'll know about it' because he's on like the world stage with MND. And of course with us going to [London hospital], Mike was registered with him. So anything that goes on at [London hospital], we get to know about anyway. So that was good for us to go down there. So that, that was that, wasn't it? But we've heard other tales. We heard a tale, Mike's MND nurse said she'd just heard a tale of a woman who'd actually gone out somewhere, to the Caribbean somewhere and had snake venom injected into her, and paid thirty-odd thousand pound for the privilege, apparently. So there's, it's not hundreds of pounds, it's thousands of pounds.
And Mike knows that, you know, we'd go and live in a tent - if we knew there was a cure for motor neurone that was buyable, we would live in a tent, we'd sell everything that we've got and live in a tent. But you've got to be sensible about things. And we have to, you know, things do pop up and you think, 'Oh that looks interesting' but we have to, we've agreed together, we've discussed it, haven't we? We've, we've agreed that we will be guided by the likes of the guy in London and Mike's neurologist, who we got on very, very well with, and they operate very closely together.
The MND Association provides information sheets about stem cell research and guidance about unproven treatments on the 'Research' area of their website.
Last reviewed August 2017.
Last updated August 2017.