Newly Diagnosed with Parkinson’s

Table of Contents

Newly diagnosed with Parkinson’s

Many people experience a range of emotions after being diagnosed with Parkinson’s.

It can be difficult to know what to do next. Perhaps you’re feeling overwhelmed or confused about your diagnosis and what it means for you.

To help, we’ve compiled a simple Q&A.

Some of the information below may not be relevant to you right now but may prove helpful in the future. All of the information provided should be used as guideline only and is not intended to replace any professional advice you may have already received.

We always recommend contacting the relevant authorities for the most up-to-date information where applicable.

Who you decide to tell about your diagnosis and when is a personal decision. You may be finding the idea of telling loved ones, friends or co-workers difficult. 

It may take some time to come to terms with your diagnosis and there is no need to tell anyone until you feel ready. You may choose not to disclose your diagnosis for some time.

Some people will willingly talk about their diagnosis while others find it more difficult. There is no right or wrong. It is your decision.

You may find talking about living with Parkinson’s a relief as talking openly helps others understand why some you may no longer partake in particular activities or you find some things less enjoyable than you used to.

  • Eating a balanced diet and taking regular exercise
  • Having a good support network
  • Connecting with people also living with EOPD
  • 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 had even tried before

For more information on medication for Parkinson’s please see https://eopd.ie/index.php/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 a medical card. Please see the link below for more details.

Completed forms need to be submitted to Long-Term Illness Scheme 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

The right exercise can help people with Parkinson’s remain physically activity and reduce discomfort from pain and other symptoms affecting mobility. Exercise done in a group setting can contribute to living a more sociable and active lifestyle, and help improve sleep. It can even assist 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 of exercise per week.

As Parkinson’s affects everyone differently, there is no one perfect exercise to suit everyone. Professionals recommend varying the types and intensity levels of the exercise you do. This approach will help you to stay active in a way that works for you and your condition.

If your symptoms are mild, focus on vigorous exercise such as gym sessions, running, cycling, tennis, circuit training or high-intensity workout classes. There are now many online classes that are a good option for people who are motivated by sticking to a schedule.  

You may choose a form of exercise that targets specific symptoms, like balance or strength, or take a more general approach to improve your overall health and well-being. Exercises such as yoga, tai chi, pilates and table tennis are ideal for improving strength, balance, mobility, coordination and flexibility. Taking regular brisk walks and gardening are also good forms of exercise.  

Remember, the best type of exercise for you is one that helps you to feel good, and remain as fit and well as possible so you can manage everyday life.

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 beneficial for the management of Parkinson’s disease. 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 getting started. 

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

The EU parking permit is issued on behalf of the Department of Transport by the Disabled Drivers Association.  There is an administration charge of €35 per parking card.  The card is valid for two years.

To apply for an EU parking permit from DDAI, a Primary Medical Certificate holder should make contact with by phone, email, or via eligibility wizard (see check eligibility below) confirming contact details and PMC status. Application forms will then be sent.  You will be required submit a copy of the PMC first/second schedule document or a copy of your vehicle registration certificate in your name showing tax exemption.

Post: Parking Card Section, Disabled Drivers Association, Ballindine, Claremorris, Co Mayo

Telephone: 094 936 4054 – 094 936 4266  – 01 8103794

Email: parkingcard@ddai.ie

CHECK ELIGIBILITY

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

An Individuality Pension is a weekly payment issued to people who cannot work because of a long-term illness or disability, who 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 the 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.

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.

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.

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.

If you were previously 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

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

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.

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

  • 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 certain threshold. https://www.gov.ie/en/service/08bb21-working-family-payment/
  • Susi grant https://susi.ie/ To help with college fees, means-tested.

Building a support network

Many people diagnosed with early onset Parkinson’s continue to live their life as normal for many years but there may come a time when you need to ask for help. Sometimes, trying to cope or carry on while feeling under pressure can cause you to feel overwhelmed and stressed. But you’re not alone. There are many independent organisations and groups available to help you.

 

NameWeb address
Department of Social Protectionhttp://www.welfare.ie/en/Pages/home.aspx
Intreohttp://www.welfare.ie/en/Pages/Intreo_home.aspx
EOPD.ie (peer support and information)https://eopd.ie/
Parkinson’s UK (Information)https://www.parkinsons.org.uk/
The American Parkinson Disease Associationhttps://www.apdaparkinson.org/
Revenue Commissionershttps://www.revenue.ie/en/Home.aspx
The Michael J. Fox Foundation (Information)https://www.michaeljfox.org/
National Disability Authorityhttp://nda.ie/
GP and GP Nurse 
National Employment Rights Authorityhttps://employeradvice.ie
Citizens Informationhttps://www.citizensinformation.ie/en/
Neurologist/Parkinson’s Nurse (in some areas) 
Welfarehttp://www.welfare.ie/en/Pages/Workplace-Equipment-Adaptation-Grant.aspx
EOPD.iehttps://www.eopd.ie/
Workplace Relations Commissionhttps://www. Workplacerelations.ie
Public Health Nurse (Over 65) 
Liaison Public Health Nurse for Children & Adult with Physical & Sensory Disabilities under 65 
Community HSE Primary Care Team (depends on locality), for physiotherapy, speech and occupational therapies. 

Multidisciplinary Team

The consultant and GP are responsible for the clinical management of patients with Parkinson’s. The GP is often the first port of call for someone who suspects they have early onset Parkinson’s and will refer the patient to a consultant, such as a neurologist, geriatrician or physician for diagnosis.

The consultant devises and implements a treatment plan, and sees the patient at ongoing, follow-up appointments. The GP remains the main clinical point of contact for patients with early onset Parkinson’s.

The pharmacist undertakes home medicines reviews, including patient education and counselling, and providing drug information.

Where one is available, the clinical nurse specialist (PDNS) acts as coordinator of care between the patient, hospital and community services.

The psychiatrist assists the patient with mental health problems such as depression, anxiety, dementia and psychosis, if necessary. The psychologist/counsellor works with patients using cognitive behavioural therapy and talking through emotional effects of living with Parkinson’s.

The physiotherapist is responsible for the management of mobility problems from the point of diagnosis to later stages of the disease.

The speech and language therapist advises on the management of communication and speech problems, swallowing difficulties and saliva control.

The occupational therapist helps patients adapt to living with Parkinson’s by developing new life skills that take into account his or her capabilities.

The dietician manages and treat dietary and nutritional problems, minimising the risk of weight loss and oral health issues associated with the disease

The social worker assess the patient’s health and social needs, risks and resources. Depending on the outcome, the patient may continue living independently or potentially move to a residential establishment. Due to the fluctuating nature of Parkinson’s and number of symptoms, social worker intervention is an ongoing process.

Patients with Parkinson’s are particularly prone to foot problems because of difficulties with walking, posture and cramps. They may also have difficulty bending over or controlling hand movement to cut their toenails safely. The chiropodist will often liaise with the physiotherapist in addressing foot-related mobility problems and the prevention of falls.

A vital member of the support network, the carer supports or lives with the person affected by Parkinson’s. Their insight is invaluable and can help all members of the multidisciplinary team decide the best course of action for the patient.

About Parkinson’s

Complimentary Therapies

Employment and PD

Management of PD

Support Centre Contact List

Volunteer Groups