Support & Information
Living with MND

Alternative treatments

Many people with MND find treatment with complementary therapies helpful. Treatments such as aromatherapy, therapeutic massage, Indian head massage, reiki, or reflexology may assist with stress management, pain relief, muscle cramps, or relaxation.

Complementary therapies will complement existing medical care and should not be seen as a replacement to current prescribed medication.

Costly and unproven treatments are sometimes recommended by well-meaning people. Professional advice should be sought before embarking on unproven therapies.

It is important to discuss the likely benefits of expensive therapy compared with, for example, changes to the home, employment of additional home assistance, or the peace of mind of the person who wishes to leave their family well provided for.

Useful websites

ALS Untangled

Helps people with MND/ALS review alternative, complementary and off-label treatments. View ALS Untagled.

A very useful and thorough guide on how to weigh up claims of cures and interventions.

The internet can be a valuable source of health information. However, health information on websites should not take the place of your health provider/patient relationship. There are many factors that need to be considered in relation to your health. You should use the internet as an information resource and ask a health professional about any issues raised by the information or anything that you don’t understand, such as medical terms.

You should also avoid any online health practitioner who proposes to diagnose or treat you without a proper physical examination and a full consultation regarding your medical history.

Statement on Alternative Treatments

The International Alliance of ALS/MND Associations, of which MND New Zealand is a member, provides the following Statement on Alternative Treatments.

(The term ‘Alternative’ used here refers to treatments or interventions that are not part of mainstream, conventional, or Western medicine and generally have not been scientifically documented and/or may not be recognised as being safe and effective for MND).

The International Alliance of ALS/MND Associations:

  • Recognises the interest that people affected by ALS/MND can have in seeking alternative forms of treatments
  • Supports the individual’s right to choose what treatment they wish to undertake but would strongly encourage anyone considering any treatment to fully discuss the issues around such treatment with their doctor, health care professional and family before making a final decision
  • Believe that treatments for, and research into, ALS/MND should be legal, have a sound scientific rationale and have the potential to bring us closer to the cause, treatment or cure for the condition
  • Only recommends treatments that have been proven through thorough scientific testing and clinical trials to be safe and effective
  • Recommends all providers of non‐proven and/or alternative treatments for those affected by ALS/MND to conduct scientific research and submit papers to the appropriately recognised journals so that peer review can be undertaken, and the information can be shared amongst the whole ALS/MND community.

 

When looking at alternative treatments, the International Alliance would recommend that you give careful consideration to the following questions to help you think through the issues and to make an informed decision:

What claims are being made for the treatment?

Often there will be claims of stopping the progression of the disease or of a reversal or improvement in symptoms. Check who is making these claims and what evidence there is to back them up. If the claims are genuine then they will have been published in recognised scientific journals and there will be published results of clinical trials.

How are people finding out about the treatment?

Any genuinely safe and effective treatment will be promoted and recommended by your doctor and the ALS/MND Associations.

Who is offering the treatment?

Is the treatment being offered by an appropriately recognised institution? Is it being offered by a number of different institutions or just one? If it’s just one then why are others not following and doing the same? Do you have to travel to another country to receive the treatment and if so why is it not available in your own country?

What are the risks involved?

Is it clearly stated what risks are involved in undergoing the treatment? Are there any side effects and how long may they last? Has the treatment been proved to be safe and effective and if so how was this done? Don’t forget that there can be financial risks associated with treatment particularly if it is expensive and involves overseas travel.

What follow-up monitoring is carried out after the treatment?

Follow-up monitoring is extremely important not just for you but for all those with ALS/MND. For you it is important to know that you will be monitored so that any adverse effects can be picked up as soon as they occur. For all those with ALS/MND they need to know if the treatment is successful and that they can rely on the claims being made.

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