Motor Neurone Disease (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."

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. 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. 

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.

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). 

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.

Alternative treatments

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.

One couple had investigated various options but were wary about 'quirky' treatments, as they described them.

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. 

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.”

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.