Complementary therapies and alternative treatments

The phrases 'complementary therapy' and 'alternative therapy' are often used as if they mean the same thing. But there is an important difference. Cancer Research UK offers the following helpful definitions (adapted here for MND):

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.

Complementary therapies

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. 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 her feel calmer and stronger when she feels down.

She thinks yoga and meditation can make people feel better, but is sceptical about any therapies which might claim to cure the condition.

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 electrical nerve tests seem easy by comparison.

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, but so far clinical trials have yet to produce evidence to show benefit in practice (see 'Medication, trials and research'). 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. A woman with excess saliva recommended tomato juice. (Pineapple 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).

She uses cranial-sacral therapy, acupuncture, and aromatherapy. She takes tomato juice for excess saliva, and echinacea and Bach Flower Remedies. [Voice software interview].

He takes noni juice and ginseng, and sour milk. He is careful about diet, but feels a little alcohol can be beneficial.

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 seemed to help her energy levels, but in the end her symptoms continued to progress.

The MND Association provides information about complementary therapies at: www.mndassociation.org/life_with_mnd/what_is_mnd/complementary.html

Alternative treatments

At present, the only treatment which has been proven to slow the progression of MND is riluzole (Rilutek) - 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 treat addiction. His neurologist will not prescribe it because it is unproven.

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 'quirky things' which claim to stop the progress of MND. [Peter cannot speak much].

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. 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 reluctant to spend thousands of pounds on unproven treatments.

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 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.”