Frequently asked questions

The general consensus is that Parkinson’s disease does not directly cause people to die, but the more advanced symptoms can lead to increased mobility difficulties and poor health. Advanced Parkinson’s can make some people more vulnerable to serious and life-threatening infections. However, with advances in treatment, most people with Parkinson’s disease now have a more or less normal life expectancy.

At the moment there is no cure for Parkinson’s but medication to manage the symptoms. Huge amounts of money is spent on research and occasionally there will be a flurry of excitement about ‘discoveries’ which you then, disappointingly hear nothing else about. It is worth getting involved in research though! Ask your consultant or nurse if there is any opportunity locally as this can help forward understanding of the disease.

The risk of developing Parkinson’s increases with age. Most people are over 50 when diagnosed but younger people get it too.

Medication is usually the main treatment, but a multi-disciplinary team approach is the best practice. You may not need all the healthcare professionals at once, but you should have access to:

• Parkinson’s Nurse – we are lucky in Northamptonshire to have a few!      Tel: 0300 0272 277
  
• Neuro physiotherapy – your nurse or GP can refer you to your Neuro Physio if you have seen them before you can call them on 0300 0271 310
  
• Occupational Therapist – for aids and adaptations: 0300 126 100 or you can self-refer online – see our useful numbers section.
• Speech and Language Therapy – your nurse or GP can refer you but if you have seen them before you can call on 0300 0270 027
• Adult Social Care Northamptonshire: 0300 126 1000 – for non-medical support.

Having Parkinson’s doesn’t mean your licence will be affected. However, you do need to let DVLA know you have been diagnosed. They will then send you a self-assessment questionnaire for you to fill out and return. Call them on 0300 790 6802. Obviously, if you do not feel safe driving you must not drive! Some medications can cause drowsiness and if you have any concerns then discuss this with your GP, Parkinson’s Nurse or Consultant. You must also tell your insurance company that you
have been diagnosed. We do not know of anyone who has had their premium increased due to this disclosure.

Having Parkinson’s doesn’t mean you have to stop working. Work is important for many reasons, not just income. Many people really enjoy their work and gain great rewards such as self-esteem, confidence, positive routines, connection to others and personal satisfaction. If you need to or want to carry on working perhaps small changes could be made to accommodate your particular needs. Your employer has a legal duty to provide ‘reasonable adjustments’ to support you if necessary.
However, if you decide to stop working it is important to consider the implications, such as the financial and emotional impact. It is worth knowing that sometimes when people are first diagnosed it can take a while for the treatment to become effective. On some occasions for certain people the first type of medications given may be ineffective. However, changing to a different type may do the trick. Therefore, it is very important not to make any rash decisions before the medication effect has
stabilised.

YES YES YES It is really important to keep doing the things you enjoy doing. Staying or getting fit and keeping active is extremely beneficial in fighting the symptoms of Parkinson’s.

You may be entitled to benefits if your Parkinson’s symptoms are affecting your day to day activities. Personal Independent Payment – (PIP) is a non means test benefit that helps with the extra costs of a long-term health condition or disability for people aged 16 up to age 65 (or State Pension age whichever is higher). It is gradually replacing Disability Living Allowance (DLA).

Attendance Allowance – (AA) is a non-means-tested benefit for people of State Pension age or older. It is to support people who have difficulties or need help with daily living due to disability or illness. Employment Support Allowance – (ESA) You can apply for ESA if you are under State Pension age and you have a disability or health condition that affects how much you can work. You can apply whether you’re in or out of work. There are conditions to working while claiming ESA.

It’s worth noting that your spouse, partner, relative or friend can also claim carer’s allowance if they assist you (see our useful Numbers page)

If you are entitled and have claimed these benefits you may also be eligible for other financial support. You may also be entitled to a blue badge if you are having mobility issues. If you want help with any of these benefits and would like to discuss your options call Angela on 01327 612333

In the UK there are approximately 127,000 with the condition and each year about 10,000 people are diagnosed. This figure increases yearly with diagnoses rising gradually due to our growing and ageing population.