Newly Diagnosed with Early Onset Parkinson’s

The diagnosis of Parkinson’s usually comes as a shock and it may be difficult to know what to do next. We have compiled a list of basic questions and answers which we hope you will find helpful. The information provided is a guideline only and is not intended to replace any professional advice you have received. EOPD recommends you contact the relevant authorities for the most up to date information. Also, there may be some information below and on this website that may not be relevant to you for many years to come.

 

Do I pay for my medication?

If you are prescribed medication for a long-term condition such as Parkinson’s the LONG-TERM ILLNESS SCHEME will cover the cost of your medication regardless of your income. All other medication e.g., Antibiotics must be paid for unless you have medical card. Please see link below for more details.
Completed forms to be submitted to Long Term Illness address on form LTI Client Registration Unit, PO Box 12962.

https://www2.hse.ie/services/long-term-illness-scheme/apply-for-a-long-term-illness-scheme-card.html

 

What about driving, and who do I need to notify?

People continue driving for many years with early onset Parkinson’s. However, you do need to let the NDLS know as soon as possible.
Below you will find link to download forms for your GP or Neurologist to sign. You will then need to make an appointment at your nearest NDLS to obtain an new license.

https://www.ndls.ie/medical-fitness/informing-the-ndls-about-a-medical-condition.html

NB. Medical form must be submitted within 3 months of the date your GP/Neurologist completes the assessment.
Note: You can complete online if using my Gov.ie if you have a Public Services Card

 

Contact your motor insurance providers

Parkinson’s Disease may affect your insurance. You need to tell your car insurance company that you have Parkinson’s and they may request a copy of your new licence.
You may need to review other insurance such as travel and health insurance policies.

 

Other Possible Entitlements

• Medical card or GP visit card (means tested)
• Critical/Serious illness cover. Check with your Insurance provider.
• Illness benefit – If you have been working and chose to step back (even temporarily), you may be entitled to Illness Benefit.
• Income Protection schemes – if you have this cover a percentage of your salary will be paid until retirement, you need to step back from work.
• Living Alone Allowance
• Work Family Payment. If your income is below a certain threshold. https://www.gov.ie/en/service/08bb21-working-family-payment/
• Susi grant https://susi.ie/
To help with college fees, means tested.
• For more information on the above please contact Citizen information or see link below.

https://www.citizensinformation.ie/en/

 

Public Services Card

It is possible to apply online for some services using my Gov.ie. To avail of this option, you must have PSC (Public Services Card). Please see link below for details on applying for this card.

https://psc.gov.ie/

NOTE: At the moment it is not compulsory to have this card but it can be convenient to access social welfare services.

Who do I tell?

This is a very personal decision and one that many people find difficult in the beginning. It can take some time to come to terms with the diagnosis yourself before you are ready to tell others. Some people find it ok telling people and are open talking about Parkinson’s while other people find it more difficult with this, you may choose not to disclose it for quite some time. You have to be ready yourself to take this step of telling people especially those outside your family. Some people find it a relief when they do disclose that they are living with Parkinson’s as they may find that people have more of an understanding that some things can be a little more difficult or less enjoyable due to fatigue.

 

What helps manage my condition?

• Eating a balanced diet and regular exercise, (see information).
• Having a good support network.
• Connecting with people also living with EOPD as they understand.
• Reducing your stress levels if possible.
• Having a positive “can do” attitude and taking one day at a time. Many people do things they never thought they would do or have even tried before.