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MY ADVICE
(ALS) Amyotrophic Lateral Sclerosis or (MND) Motor Neurone Disease are referred to as ALS/MND. PALS is short for People (or a person) with ALS.

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I do not claim to be qualified to offer medical advice but as a person that has survived the diagnosis of ALS/MND for more years than is consider normal, I am frequently asked for my opinion.

The information here should be understood to be just the suggestions and opinions of a person who does not have all the answers. I certainly do not claim to have a cure for neurodegenerative illnesses.

The advice offered here will certainly do no harm and may possibly help some PALS to some extent. Use the following ideas in conjunction with the other information on this website. I sincerely hope you find it useful.

1) I would suggest to all PALS that they immediately increase their water consumption to between 3 and 4 litres (6 - 8 pints) of water daily. If swallowing is difficult, every effort should be made to somehow maximise hydration.

2) Assume that liver function is inadequate (regardless of conventional blood test results) and treat it accordingly. See Liver Function

3) Use a combination of antioxidants rather than one or two "powerful" antioxidants. You are seeking balance and this will not be achieved by a quick-fix approach. There are no quick fixes!

Other supplements may also be appropriate. See My Regimen for detailed information.

4) Modify your diet. The Glycemic Index (GI) Diet is the only one that makes any sense to me after many years of research. Details can be found on the internet and in recently published books. See Diet and Healthy Foods.

5) Minimise or eliminate as many environmental stressors and toxins as possible. This may be difficult, time consuming, possibly expensive and frustrating - but do the best you can.

6) Minimise all stress! Make it a priority to adequately manage unavoidable stress. See Therapies for useful techniques.

7) Never over exercise but remain as generally active as possible. "Muscle strengthening" exercises are useless if the nerves supplying the muscles are impaired or dying. It is considered by some specialists that over-use of remaining motor neurones may actually speed muscle wasting.

Range of movement (ROM), stretching, hydrotherapy, therapeutic massage, yoga, Tai Chi (or Qui Gong), walking and gentle swimming are all good forms of exercise if the PALS is physically capable.

8) Exercise your mind! Visualise, Meditate, Relax, maintain a positive attitude and above all, take charge of the illness! This applies to Carers and PALS alike. Become actively involved in your own healing. Don't expect the doctors to do all your healing for you - most will admit that they are unable to. See Therapies

9) Be aware that rapid medical advances are occurring. A cure may already exist or may be discovered any day now. It is realistic to hope and remain confident that a cure is close at hand. There is no such thing as "false hope".

10) To keep up to date with ALS/MND research, subscribe to the ALS TDI newsletter. See Useful Links for other recommended websites and services.

11) ALS/MND is a terrible disease but sinking into the realms of doom and gloom will just make coping with the illness even harder.

Accept that you may get depressed and seek treatment for depression as soon as possible. Numerous studies show that a positive mental attitude, humour and laughter have extreme and widespread beneficial effects. See Self Healing.

12) You may be ill but you are neither dead nor powerless. You still have choices and should reaffirm this. I wrote the following reminder, printed and placed it where I can see it as soon as I wake:

This can be a good day or a bad day - my choice.
I can be happy or sad - my choice.
I can complain or I can cope - my choice.
Life can be a chore or a challenge - my choice.
I can take from life or give to life - my choice.
If all things are possible,
How I deal with those possibilities is - my choice.

13) It is a good idea to test for both Lyme disease (neuroborreliosis) and Mycoplasma infection. Neither are standard diagnostic tests for ALS/MND at present but many doctors and PALS believe they should be.

Contact www.lymenet.org for information about where and how to get reliably diagnosed and treated. See also the Lyme Disease page for information and links.

I believe that Prof. Garth Nicolson at the Institute of Molecular Medicine, Irvine, CA may now have solved some of the problems I experienced getting tested for mycoplasmal infections. You may be able to contact him directly from the Mycoplasma page.