Guide To Living With Parkinson's Disease

Guide to Living with Parkinson's disease

Reproduced with permission by H Lundbeck A/S and
Teva Pharmaceutical Industries Ltd

  
Society and relationships
Society and relationships
3

Society and relationships

Guide to living with Parkinson's disease republished with permission of
  • TEVA Pharmaceutical Industries
  • H Lundbeck A/S

Travel and LeisureTravel and leisure

This section contains hints and tips to help a person with PD enjoy the full benefit of leisure time, holidays and travel. More detailed information about sport, leisure and travel can be found on the EPDA website: www.epda.eu.com/links.shtm.

Holidays and travel

Holidays are a good way to relieve stress and take a break from everyday life. For a person with PD, it can help to make arrangements well in advance – especially if planning to travel abroad. Some travel tips are given below, and these are also included on the ‘hints and tips card’ supplied in the diary part of this binder.

Tips

General travel tips

  • Plan routes and stopovers – allowing time for extra tiredness and regular stops to stretch aching muscles or go to the toilet.
  • Find out as much as you can about the facilities available at your destination before you set off, e.g., will stairs be a problem?
  • Ask your doctor to provide a letter describing your condition and the medications that you take – in case treatment is needed at your destination. Taking along the prescribing information from each pack of medication, together with a note of the dosage can also be helpful to a treating doctor. In some instances, it is worthwhile to have this letter translated into the language spoken in the country to which you are travelling.
  • When you pack your medication, be sure to pack more than you need in more than one bag – just in case your stay is longer than expected or you get separated from some part of your luggage. It is also a good idea to take along your prescription, and to ask your carer/partner to carry a duplicate pack of medication.
  • Before you depart, ask your doctor to find out the name and address of a GP and/or hospital at your destination – in case of emergencies.
  • Keep your medication in its original labelled container, so that it can be easily identified.
    • Disabled person sign
  • People with mild PD are usually allowed to continue driving – although you should notify the licensing authority and your insurance company (not doing so could render your insurance null and void in the event of an accident). If the service is available in your country, ask your doctor/nurse to help arrange a disabled car sticker so that you can park closer to amenities, and reduce the amount of walking needed. Note that these stickers can go out of date, so remember to check and renew!
  • PD organisations are experienced in offering advice for people with PD who want to travel. Links to contact details of organisations in individual countries, are given at the end of this Guide.

Booking transport and accommodation

  • seatsBook your transport well in advance, and let the travel company know about any special requirements, e.g., extra leg room, assistance getting onto the train/plane/coach.
  • Don’t be afraid or embarrassed to ask for all the help you need. For example, there can be a lot of walking at either end of a journey, and if use of a wheelchair would make things easier, then you should request one. Most companies are happy to provide this, along with an escort to guide you. However, such service isn’t always available, or must be booked in advance, so ask ahead. In addition, some airlines limit the number of people with mobility problems or disabilities it will carry on one plane.
  • Ask the travel company about the assistance they can provide, and compare several different companies. Ask if there will be extra charges for these services.
  • Note that travel insurance may be more expensive, or more difficult to obtain – read the policy carefully as sometimes cover includes illness, but not PD.
  • Find out about car parking, and how close this is to the transport terminal.
  • Booking early is also useful when arranging accommodation, so that you can ask for a ground floor room, or one that is close to a lift. You can also ask about facilities such as ramps, hand rails, or rooms that have been specially designed for less mobile people.

Holidays for carers

Carers also need to plan short breaks and holidays into their caring routine. Many PD and carer organisations offer advice on providing temporary or respite care while the main carer takes a break – this can be a regular arrangement (e.g., weekly), or can be planned to fit in with a longer holiday. Some countries provide State allowances for this purpose.

Travelling abroad

  • It may be useful to learn the phrase “I have Parkinson’s disease” in the language of the country that you are visiting, or have it written down on a piece of card. The EPDA has a ‘Flexicard’ with this phrase written in 13 European languages – see www.epda.eu.com/flexicard, for more information. This, along with other phrases describing any particular difficulties you have, e.g., slowness or quiet speech, can help explain to others why you have special needs.
  • Keep your medication with you in your hand luggage at all times.
  • Check with your doctor or insurer about your health insurance and what it covers at your destination.
  • Contact the embassy of the country you are visiting to ask about their regulations for bringing prescription drugs into the country – this can prevent any problems at customs, and is another reason for asking your doctor to prepare a signed letter describing your medication needs. Some countries also require prescription medications to be in their original labelled containers.
  • Drugs are sometimes known by different brand names in different countries, therefore it can be helpful to find out the name used in your destination country before you travel. Information about these different names can be found on the EPDA website: www.epda.eu.com/medInfo.
  • If you need a syringe to deliver your medication, you will also need to check on regulations in individual countries. If you are travelling by air, explain your situation to the airline – especially if you will need to use a syringe during the flight.
  • If you need vaccinations to travel to your destination country, ask your doctor if these are safe to have in combination with your PD medication.
  • If you are travelling to a different time zone, think about how you are going to plan your medication schedule.
  • It may be helpful to make contact with a PD organisation in the country to which you are travelling before you go. Details of many local and national organisations are held by the EPDA, who can be contacted by telephone: +44 (0) 1732 457 683; by e-mail: lizzie@epda.eu.com; or by visiting the website: www.epda.eu.com.

Leisure activities

People with PD can live full and active lives, and an important part of this is leisure time. PD can make some activities difficult, but often the only restriction is the interest of the individual. A person with PD should make an effort to keep up their social contact, continuing to interact with others and taking pride in their appearance. Someone who is open and honest about PD has no reason to feel anxious when out in public or when in the company of friends.

In addition to improving the overall quality of life, leisure activities can also:

  • provide an interest away from the daily presence of PD
  • take the focus away from ‘self’ and on to others
  • reduce stress and anxiety
  • revive personality and promote independence
  • exercise the body, e.g., gardening, walking; and brain, e.g., crosswords, reading
  • encourage a new or existing interest that makes the most of the often increased sensitivity of people with PD, e.g., painting, photography, textiles, nature appreciation, or music (making and listening)
  • provide an opportunity to enjoy an activity together with a carer.

PD organisations have many local branches, which arrange meetings and activities for their members. People with PD and their carers may welcome the opportunity to contact one of these organisations and meet other people with PD on a social basis (remembering that the topic of conversation is not always based around PD!). PD groups can also give advice on leisure activities that are specially organised for people with disabilities such as PD – these can range from adventure holidays and sailing to more gentle pursuits like visiting stately homes, painting, and appreciating music. Other ideas/advice can be found on the EPDA website: www.epda.eu.com/links. In addition, an occupational therapist may be able to help regarding leisure activities – either by advising on how to maintain existing activities or offering support when exploring new choices.

painting with parkinsons