Below are some of the most frequently asked questions after diagnosis, with references out to further information. You may also find our main guide Living with motor neurone disease helpful, which you can also order as part of a printed introductory pack from our helpline, MND Connect.
I have a diagnosis of MND, can I still drive, and do I have to inform anyone?
A diagnosis of MND is not a bar to driving, it is however a legal requirement to inform the DVLA. The DVLA will probably ask for a medical report from your GP, based on this report and any symptoms you may have, they may offer a time-restrictive licence, this will be subject to renewal and be based on your condition and how the disease affects you. There are driver assessment centres across the UK which will be able to offer advice on adaptations to your vehicle to enable you to keep driving for as long as possible.
Your insurance company also needs to be informed. For more information on how this may affect you, and sources of information for the disabled driver, please refer to Information sheet 07 - Motoring and motor neurone disease (MND)
I used to have a flu vaccine, can I still have this now I am taking riluzole?
Yes the flu vaccine will not affect the riluzole. See Information Sheet 09 - Riluzole
I still have sexual desires, will my sexual function be impaired by MND?
MND will not affect sexual function, however as movements become affected you may need to adapt and express intimacy in different ways. See our information sheets 20A - Sex and relationships for people living with MNDand 20B - Sex and relationships for partners of people living with MND Alternatively contact The Outsiders Club, Sex and Disability Helpline on 07074 993527. Visit The Outsiders Club website.
Will my intellect be affected by MND?
Some people living with MND will experience difficulties with memory, learning, language and poor concentration. This is commonly known as cognitive change. Some of these difficulties may be quite subtle, while for others the change can be more pronounced and noticeable.
Will I become incontinent?
Although the bladder and bowel are not usually directly affected, incontinence may occur if mobility is restricted and getting to the toilet becomes more difficult. Your occupational therapist and specialist nurse can advise you if this is a problem.
Do special diets help with MND?
Special diets will not affect the progression of MND. A nutritious diet will help to ensure you are receiving adequate supplies of vitamins and minerals, which will help with energy levels. An assessment by a dietitian is essential before increasing any part of your diet or taking extra supplements. They may advise a diet high in carbohydrates to help prevent too much weight loss.
What benefits can I claim if I give up work?
We provide a comprehensive list of relevant benefits and entitlements that you may be eligible for, see Information Sheet 22A - Benefits and entitlements.pdfwhich includes details on whether you are likely to qualify and how to apply.
Is my partner able to claim for the Carers Allowance if their working hours have to be reduced to care for me?
Carers allowance is available for people who care for someone over 35 hours per week. The criteria for this allowance is quite complex, if you earn over a certain amount per week you cannot claim for this allowance. If you receive any state benefits such as income support, state pension you may not receive all of this benefit. Please refer to: Information Sheet 22A - Benefits and entitlements.pdf
I have been told I should have a Carer's Assessment as I regularly care for my partner for over 20 hours per week.
There may be support your local Social Services can provide. You will need a carer’s assessment to qualify. See our For carers pages. We also have a comprehensive carer's pack called Caring and MND: support for you which can be ordered from MND Connect 08457 626262.
How do I get a Blue Badge?
You need to contact the Social Services department of your local County Council, for an application form. They will ask for proof of your disability, such as receipt of the higher award for Disability Living Allowance. If you do not receive this benefit or your award is lower, you can still apply, but you may be asked to have a medical examination. You will also need to provide two passport-sized photographs of yourself. For further details on the Blue Badge Scheme see Information sheet 07 - Motoring and motor neurone disease (MND)
Can I get travel insurance?
Travel Insurance can be difficult to get when you have a diagnosis of MND. There are insurance companies which will insure you. Please contact MND Connect for current information. You will probably be asked a series of questions, these will determine the level of cover they will offer, as well as the amount of premium and excess they will apply. No insurance company will offer cover if you awaiting any diagnostic test results. If they ask you if you have been diagnosed with a terminal illness you must make them aware you have received NO prognosis. If you do not they will assume you have been given one and will refuse to insure.
I would like to make an Advance Decision to Refuse Treatment, which will ensure my wishes are carried out should I be unable to convey them. How can I do this?
Before considering writing an Advance Decision to Refuse Treatment (ADRT) you are advised to discuss your wishes with your family doctor. The document needs to be witnessed by two people who will not benefit from your will, it would be an advantage if one signatory could be your doctor. A copy needs to be given to your doctor for your medical records. For detail, see Information Sheet 19 - Advance Decision to Refuse Treatment ADRT
Do I have to pay for a road fund licence if I have MND?
You can apply for this exemption if you receive the Higher Mobility Component of Disability Living Allowance. If you do not receive this award you will have to pay the normal rate of road fund licence. See Information sheet 07 - Motoring and motor neurone disease (MND)
I have several mercury tooth fillings. Will it help to prevent or delay the progression of MND if they were removed?
There is no evidence to suggest the removal of mercury fillings will help to prevent or delay the progression of MND. There is however some concern that removal may lead to a higher exposure to mercury than if the fillings had been left in place.
Are environmental factors significant in MND?
Please refer to Research: Causes of MND
I am having trouble accessing the upstairs bathroom. I think a ground floor extension would solve this problem. Is there any funding available to help with this?
You may be able to get a grant through your local authority. This may take some time so it is best to apply before the need is urgent. It is also essential to apply before you begin any building works. For more information please refer to Information Sheet 22C - Disabled Facilities Grants and housing issues
Do I have to pay the full amount of VAT on items I need to purchase because of my disability.
If the item being purchased is designed specifically for the use of a disabled person, the VAT rate is usually zero. Items that can be used by both disabled and non-disabled people do not qualify for the zero rate.
How can environmental controls help me?
Environmental controls assist people with little movement to control a range of practical operations in the home at the touch of a switch. It is possible to obtain environmental control units through the NHS following an assessment by an Occupational Therapist.
Do I need to register my wheelchair, scooter or carriage with the DVLA?
Some mobility scooters and carriages have to be registered with the DVLA. The DVLA categorises scooters and carriages in 3 classes. Class 3 carriages need to be registered for road use, be licensed in the disabled taxation class and display a nil duty tax disc. Unlike ordinary cars, carriages do not need to provide evidence of Vehicle Excise Duty (VED) exemption when licensing in the disabled class. They are exempt from paying the first registration fee and are not required to display registration plates.
If you are unsure if your scooter or carriage should be registered visit the government online information service GOV.UK and search for DVLA, or contact the DVLA on 0300 790 6801.