There may be certain organisations you must inform that you have Parkinson’s. This varies from country to country and may include:
- the authority that covers driving licences (if you are still driving)
- your insurance company if you have health or other relevant insurance policies.
You should check if any insurance policies you hold provide cover for long term disabilities and ask what documentation they require you to provide.
In most countries you are not obliged to inform your employer, unless of course your symptoms could pose a health and safety risk to yourself or others, for example operating machinery. See also: Work and Parkinson’s.
Your doctor or national Parkinson’s association should be able to advise further.
Having Parkinson’s may affect your financial situation for a number of reasons:
- You may need to reduce the amount of work you do or stop working.
- You may be hospitalised.
- You may incur additional costs for check-ups or non-state funded treatment such as physiotherapy, occupational therapy or speech and language therapy.
- You may incur additional costs for nursing, home care or special equipment.
It is wise to start planning financially for the future as early as possible. Find out whether you are entitled to any state-funded benefits to compensate for any financial losses you incur.
Am I entitled to any benefits?
There are many types of benefits, under many different names, so you will need to research entitlement where you live. This may be frustrating and take time but it can be very worthwhile in the long term. The following are some benefits you might be entitled to:
- disability or incapacity allowance
- sick pay
- carer's allowance, housing and/or council tax benefits
- travel concessions
- dental and eye care concessions
- help with the cost of adaptations to your home.
What benefits you can claim will depend on the country in which you live and the degree of disability you experience. Benefits may be dependent on income and savings in some countries but in others they may depend solely on your disability, regardless of your financial situation.
The following people should be able to advise you:
- your healthcare professional(s)
- support organisations, including your Parkinson’s association
- other people with long-term conditions such as Parkinson’s
- government offices who deal with disability allowances.
The application forms for benefits can be complicated, so you may want to ask a friend to help you complete them.
In some countries the State also provides compensation for loss of income of a family member or partner who cares for you.
It is not uncommon for one partner to manage family finances and often, for a number of reasons, this information may not be fully shared. This can be problematic if the person who takes care of finance is ill. So it is useful to write down the most important information and jointly review it on a regular basis. If you have a particular system for keeping information then write this down so that others can navigate their way around in the event of unexpected hospitalisation or illness, or if you are no longer able to continue taking care of this.
A good starting point when organising your affairs is an assets list: a comprehensive list which includes details of any bank accounts, insurance policies, stocks and bonds, as well as valuable possessions such as jewellery or antiques. The list can be either typed or hand-written. Details should be updated annually and kept in an easy-to-find location such as a desk drawer or filing cabinet. You may also want to keep a copy with your Will or in a safe deposit box.
It is a good idea to buy a file or clearly mark and file several envelopes containing copies of important legal and financial documents. Originals can be stored in a safe place such as a fireproof box, safe or with your bank, but make sure that you write down and tell someone where these are stored. You may also want to give a set of photocopied documents to a family member or good friend.
Making a Will or renewing it every year may be wise so that no-one can say that you were not of sound mind when you made it in the event of any disputes arising.
Making sure that all your financial and legal documents are up to date and well organised is probably the most important thing you can do. But there are a number of other practical steps that may be helpful:
- Sign up for electronic banking if you have online access as this can save you the inconvenience of going to the bank.
- As your handwriting and possibly your signature may alter over time make sure you give your bank a copy of your new ‘Parkinson’s’ signature. If writing becomes difficult see if you can use Chip and PIN cards so you need only enter numbers on a keypad.
- Securely store an up to date list of all your PIN numbers (personal identification numbers) and passwords. You can buy password manager programmes that securely store passwords on your computer. Avoid obvious passwords like ‘1234’ or your date of birth and use different passwords for different sites. Try and include a mix of upper and lower case letters in a password, as well as numbers and symbols.