Motor neurone disease (MND) Q&As
Published by Bupa's health information team, June 2009.
Answers to questions about motor neurone disease (MND)
This section contains answers to common questions about this topic. Questions have been suggested by health professionals, website feedback and requests via email.
- How can I manage the problem of too much saliva?
- Does motor neurone (MND) disease run in the family?
- Are there any new medicines being developed for motor neurone disease (MND)?
How can I manage the problem of too much saliva?
If you have problems swallowing, too much saliva or mucus can build up in your mouth. This can be helped in several ways. Improving your posture and swallowing more often may help. Your GP can prescribe medicines to reduce the amount of saliva or may give you a suction pump. You can adjust your diet to help with the problem of thick saliva.
Explanation
Our bodies produce about two litres of saliva a day. It makes swallowing easier and keeps our mouths healthy.
If you have difficulty swallowing, watery saliva can build up in your mouth and this may result in dribbling. A well-supported head position using a reclining chair or chin support can help. Sleeping in a reclining position may also help stop saliva pooling in your throat.
Your GP can prescribe medicines to reduce the amount of saliva you produce.
Your GP or district nurse may also provide you with a suction pump. A small tube attached to the pump is placed in your mouth and sucks out excess saliva. These can be operated by you or a carer.
Thick saliva can be caused by dehydration or breathing through your mouth, which means that your mouth can dry out. It can also be a side-effect of some medicines. Your GP may prescribe a medicine such as carbocisteine to reduce the thickness of your saliva.
If you have problems with thick saliva, make sure that you drink enough fluid. Some people find that dairy products, such as cheese and milk, seem to make the problem worse. The Motor Neurone Disease Association suggests drinking apple, grapefruit, cranberry, dark grape and pineapple juices, as these can break down the protein in the mucus. They can be sipped or frozen into icy sticks.
Always ask your GP for advice and read the patient information leaflet that comes with your medicine.
Further information
- Motor Neurone Disease Association
08457 626 262
www.mndassociation.org
Sources
- Symptoms. Motor Neurone Disease Association. 2002. www.mndassociation.org
- McDermott CJ, Shaw PJ. Diagnosis and management of motor neurone disease. BMJ 2008; 336:658-662. www.bmj.com
Does motor neurone (MND) disease run in the family?
Most people have the sporadic form of MND; that is, it occurs for no known reason. This form of MND can't be passed on to future generations. In about five to 10 out of 100 people with MND the disease will run in the family. This is called familial MND (FMND).
Explanation
A small proportion of people with MND (five to 10 in every 100) have a form of the disease that runs in families (FMND). If you have MND and have a parent, aunt, uncle or sibling who has MND, you may have FMND.
In FMND, it's thought that a faulty gene causes the disease. The faulty gene can be passed from parent to child. Children of a parent who has FMND have up to a one in two chance of inheriting the faulty gene, so the disease isn't passed on to all family members.
Around two out of 10 of those with FMND have a faulty gene called SOD1. It isn't yet known how this causes the disease. Motor neurones have higher levels of SOD1 than other nerve cells, which may be why they are vulnerable if this gene is faulty.
If you have FMND, a blood test is available to see if you have the faulty SOD1 gene. If you do, other family members may request a blood test (genetic testing) to see if they carry the faulty gene. Having the faulty SOD1 gene doesn't automatically mean that you will get MND. Genetic testing will only be carried out after family members have had counselling about what the result of the test will mean.
In the majority of families with FMND, the faulty gene is unknown. In these families there is no genetic test to see if healthy family members have the faulty gene.
Familial and sporadic MND have the same symptoms and care and support are the same for both forms.
Further information
- Motor Neurone Disease Association
08457 626 262
www.mndassociation.org
Sources
- Is MND inherited? Motor Neurone Disease Association. www.mndassociation.org, accessed 30 July 2008
- Genetics & familial MND. Information sheet C. Motor Neurone Disease Association. 2007. www.mndassociation.org
Are there any new medicines being developed for motor neurone disease (MND)?
Yes. There are a number of treatments for MND currently being investigated in clinical trials involving patients.
Explanation
Clinical trials of new treatments are done in three stages - phase I, phase II and phase III. Phase I clinical trials are when new treatments are tested in a small number of people to see if the medicine is safe. Phase II clinical trials test the medicine in larger numbers of people with the disease to see if the medicine is effective. Phase III clinical trials involve even more people with the disease to check both safety and efficacy.
Minocycline (an antibiotic) has been shown to extend survival in animals with MND. However, results from a phase III clinical trial to test if minocycline slows progression and helps maintain muscle function in patients with the ALS (amyotrophic lateral sclerosis) form of MND showed no beneficial effect.
IGF-1 (insulin-like growth factor) encourages the growth of nerves. Results from two trials (European and American) in patients with ALS were inconclusive. A phase III trial to see if IGF-1 slows the progression of weakness in MND is ongoing in America.
Ceftriaxone (an antibiotic) has shown promise in MND research using animals. A phase III clinical trial is ongoing in America to see if it affects survival in patients with ALS.
A number of medicines are in earlier stages of research.
- Co-enzyme Q10 is an anti-oxidant that acts to "mop up" waste molecules before they damage nerve cells. This medicine is currently being investigated in an American clinical trial, following encouraging results from an initial study.
- Glatiramer acetate is a medicine used for the treatment of multiple sclerosis. It was shown to increase survival in animals with MND. However, a clinical trial in Europe found that the medicine didn't slow disease progression or extend survival in people with MND.
The effect of combining different types of medicine is also being investigated.
Further information
- Motor Neurone Disease Association
08457 626 262
www.mndassociation.org
Sources
- Treatment trials. Motor Neurone Disease Association. www.mndassociation.org, accessed 30 July 2008
- Bhatt M, Gordon PH. Current clinical trials in amyotrophic lateral sclerosis. Expert Opin Investig Drugs 2007; 16:1197-1207. www.informapharmascience.com
This information was published by Bupa's health information team and is based on reputable sources of medical evidence. It has been peer reviewed by Bupa doctors. The content is intended for general information only and does not replace the need for personal advice from a qualified health professional.
Publication date: June 2009
Rate this page
