Newly Diagnosed with 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 that 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.

What is Early Onset Parkinson’s Disease?

When someone who is 21-60 years old receives a diagnosis of Parkinson’s disease, it is referred to as early-onset Parkinson’s disease or young-onset Parkinson’s disease. While the symptoms of the disease are mostly the same at whatever age it develops, younger people will experience the disease differently due to their unique life circumstances. Managing the disease can be particularly challenging for a younger person and their family from a medical, psychological, and social viewpoint.

What sets young-onset Parkinson’s apart from a diagnosis at an older age?

The majority of people diagnosed with Parkinson’s disease are over the age of 60, the disease is often overlooked in younger people, leading many to go undiagnosed or misdiagnosed for extended periods of time.

Once it has been diagnosed, the rate of the disease’s progression is usually much slower in younger than older people, due in part to the fact that younger people have fewer general health problems and are more capable of physical therapy treatment.

Symptoms of young-onset Parkinson’s disease

While common symptoms of Parkinson’s may be similar no matter what age you are, the progression is often different:

• Young people often have more involuntary movement problems due to the most commonly prescribed Parkinson’s disease medication, levodopa. For this reason, young-onset patients are usually initially treated with alternatives to levodopa.
• Other problems associated with Parkinson’s such as memory loss, confusion, and balance difficulties tend to be less frequent in young people with the disease.

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 openly 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.
• 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.

Medication and Parkinson’s

For more information on Medication and Parkinson’s please see https://eopd.ie/index.php/medication/

Building your support network

Many people diagnosed with early-onset continue to live their life as normal for many years.  But there may come a time when it might be better to ask for help than have the stress of trying to cope or hide that you are under pressure to get some things done. It is a form of self-help and reduces stress usually, people want to help but don’t know how to.  The examples below and the list of support services/organisations are for information only and does not mean you will need to avail of all of those listed. 

Importance of a multidisciplinary team approach to managing the care of people with PD

As you travel the Parkinson’s join consider the following teams to deliver the best care plan for you

Consultant neurologist and GP
The consultant and GP are responsible for the clinical management of PD patients. The GP is often the first port of call for someone who suspects they have PD. The GP will either make a diagnosis or, more likely, refer the patient to a consultant, such as a neurologist, geriatrician or physician to ensure an accurate diagnosis.

The consultant will devise a treatment plan and initiate treatment, keeping the GP informed. The GP will be the main clinical point of contact for PD patients, with the neurologist seeing the patient at longer intervals tailored to the individual.

Pharmacist

The pharmacist’s role focuses on home medicines reviews, including patient education and counselling, and providing drug information.

Nurse specialist/community nurses
The PD clinical nurse specialist (PDNS), where one is available, acts as a coordinator of care between the patient, hospital and community services to meet the needs of both patient and carer.

Psychiatrist/psychologist/counsellor
The psychiatrist assists the Parkinson’s patient with mental health problems such as depression, anxiety, dementia and psychosis, if necessary. The psychologist/ counsellor can help with cognitive behavioural therapy and talking through any aspect of Parkinson’s disease that is having an emotional effect, including depression, anxiety and communication.

Physiotherapist
The physiotherapist has expertise in the management of mobility problems from the point of diagnosis to the later stages of the disease.

Speech and language therapist
The speech and language therapist provides specific information and advice on the management of communication and speech problems, swallowing difficulties and saliva control.

Occupational therapist
The occupational therapist enables PD patients to adapt and develop life skills to help with their new or altered capabilities, promoting independence.

Dietitian
As the condition affects muscular movement, Parkinson’s has widespread effects on eating and drinking. Inability to swallow affects the nutritional status and there are also oral health issues to consider, thus weight loss appears to be common.

Social worker
The social worker assesses the PD patients’ needs in order to establish the balance between need, risk and resources for intervention. This may make the difference between living independently or in a residential establishment and should be an ongoing process due to the fluctuating nature of PD and the wide variation in symptoms.

Chiropodist
PD patients are particularly prone to problems because of difficulties they can experience with walking, posture and cramps. They may also have difficulty bending over or in controlling the fine movements of their hands needed to cut toenails safely. The chiropodist often needs to liaise with the physiotherapist in addressing foot-related mobility problems and prevention of falls.

Carer
A vital member of the team, the carer supports or lives with the person affected by PD. Their insight is invaluable and can help all members of the multidisciplinary team do their best for the patient.

Support groups

EOPD.ie

It is important that you take care of YOU in the following ways

• Build a routine that includes you, looking after yourself will help you stay well for your family.
• Keep socialising and continue your Hobbies & Interests. Try something new to keep busy. Some people find they are more creative and take up art.
• Eat a well-balanced diet and follow medication instructions e.g., with food or fasting
• A variety of exercise to help maintain balance, coordination and strength.  Exercising with others adds a social element and can help with the days you need a ‘nudge’ to exercise. Online can be an option also to include in your routine.

Do I pay for my medication?

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 the 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 a new license.

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

Note: 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.

Parking Permit

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 service

Social Welfare Support                                 

Invalidity Pension

An individuality Pension is a weekly payment to people who cannot work because of a long-term illness or disability and are covered by social insurance (PRSI). At 66, you transfer automatically to the State Pension (Contributory) at the full rate. Invalidity Pension is taxable. You are entitled to a Free Travel Pass. You may also get extra social welfare benefits, for example, the Household Benefits Package.

On 1 December 2017, Invalidity Pension was extended to the self-employed. You can read further information on the Department of Social Protection’s website                                                                       

Social insurance contributions                                                                                                                        

Only class A, E, H and S contributions count for Invalidity Pension. You cannot use voluntary contributions to satisfy the PRSI conditions for Invalidity Pension. To get Invalidity Pension you must have at least:

260 (5 years) paid PRSI contributions since entering social insurance

48 weeks of paid or credited PRSI contributions in the last or second last completed year before the start date of your permanent incapacity for work. The start date of0 permanent incapacity (as decided by the Department) is usually after you have been incapable of work due to illness for one year. However, it can be less than one year if you are permanently incapable of work for life.

Medical criteria                                                                                                                           

Invalidity Pension is a payment for insured people who are permanently incapable of work because of an illness or incapacity.To qualify you must:

Have been incapable of work for at least 12 months and be likely to be incapable of work for at least another 12 months (you may have been getting Illness Benefit or Disability Allowance during that time) Or Be permanently incapable of work (in certain cases of very serious illness or disability, you can transfer directly from another social welfare payment or from your job to Invalidity Pension).  A Deciding Officer of the DSP will examine your claim and determine your entitlement based on the qualifying conditions outlined above.

Invalidity Pension and work                                                                                                      

Since 13 February 2012, Partial Capacity Benefit has replaced the previous exemption arrangements where people on Invalidity Pension could get permission to work part-time (known as an exemption) for rehabilitative or therapeutic purposes and keep their full social welfare payment. There is no requirement that the work a person does while on Partial Capacity Benefit has to be for rehabilitative or therapeutic purposes.

Training and employment schemes

If you are on Illness Benefit or Invalidity Pension and want to do a training course, you do not go onto Partial Capacity Benefit. You apply to the Illness Benefit or Invalidity Pension section, as appropriate. If you want to do a Community Employment scheme you apply in the normal way.

Contributions paid in other EU member states

If you were previously insurably employed in a country covered by EU Regulations or in a country with which Ireland has a bilateral social security agreement and you have paid at least one full rate PRSI contribution in Ireland, you may combine your insurance record in that country with your Irish PRSI contributions to help you qualify for Invalidity Pension

Tax implications

Invalidity Pension is a taxable source of income. The Department notifies Revenue of the taxable amount of Invalidity Pension paid to you.

How to apply

To apply fill in an Invalidity Pension application form (INV1) (pdf). You can also get a form from your Intreo Centre or Social Welfare Branch Office. You may qualify for Supplementary Welfare Allowance while you are waiting for your claim to be processed.

If you have been getting Illness Benefit for a period of 468 days, you will be medically assessed for continued entitlement to Illness Benefit and possible entitlement to Invalidity Pension. If, as a result of this assessment, it is considered that you may be entitled to Invalidity Pension, an application form (INV2) will be sent to you. When they get the completed form a Deciding Officer will examine the claim and determine eligibility for Invalidity Pension. This does not stop you from applying for Invalidity Pension in the normal way using application form (INV1). You can get help to fill in your form from your local Citizens Information Centre, Intreo Centre or Social Welfare Branch Office.

If you think you have been wrongly refused Invalidity Pension or you are unhappy about a decision of a Deciding Officer, you can appeal this decision.

Where to apply

Invalidity Pension Section

Social Welfare Services Office
Government Buildings
Ballinalee Road, Longford
Ireland

Tel: (043) 334 0000 (If calling from outside Ireland please call +353 43 334 0000)

Locall: 1890 92 77 70 (Note: the rates charged for using 1890 (Lo-call) numbers may vary)

Homepage: https://www.gov.ie/en/service/d148b9-invalidity-pension/

Email: Invgenenq@welfare.ie

How can exercise help people with Parkinson’s?

 Exercise is good for your well-being and to connect with others. The right exercise can help people remain physically active, and reduce discomfort from pain and other symptoms affecting mobility. Exercise done in a group setting can contribute to a sociable and active lifestyle. and improve sleep. It can even help with issues that many people don’t talk openly about, such as constipation or problems with mood. Many people with Parkinson’s also talk of exercise as a way of taking back some control in order to manage their symptoms, with some going as far as to say it helps them “fight back” against the condition.  It is recommended to do at least 2.5 hours per week.

 What is the best type of exercise for Parkinson’s?

 As Parkinson’s affects everyone differently, there is no ideal solution or exercise for everyone. So, the exercise framework suggests a blend of styles and intensity that will help people with Parkinson’s do what they can at different times over the course of their condition. Some people may be participating in more vigorous (higher-intensity) exercise at the gym, or out cycling and running with friends. Others may prefer a less aerobic-type exercise like Pilates or yoga but also a brisk walk to get your heart rate up can be beneficial. Exercise might be done individually or in a class, and can be targeted to specific symptoms, like balance, or at improving general health and wellbeing. So, to answer this question, we say that the best type of exercise should help people with Parkinson’s to feel and remain as fit and well as possible to manage everyday life. There are now many classes online which can help people who find it easier to have a schedule to follow.  This can help motivate people as apathy can make it more difficult if people are left to their own devices.

Types of Exercise

If your symptoms are mild, focus on vigorous exercise. Try gym sessions, running, cycling, tennis, circuit training or high-intensity workout classes. 

Other exercise types such as Yoga, Tai Chi, Pilates, Table Tennis help with strength, balance, movement, coordination and flexibility. Gardening can also be considered a good form of exercise.  It is important to do a variety of exercises that will work on the upper and lower body for strength and flexibility.  Balance exercises are also important in the management of Parkinson’s. Talk to a physiotherapist or your health professional who knows about Parkinson’s for more advice and to plan the right exercise for you, especially if you’re just started.