Holiday Planning Tips for Caregivers of Parkinson’s Disease

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We all look forward to a holiday as a much needed break. Planning a holiday can be exciting. Planning a holiday however with someone with Parkinson’s Disease can be stressful. It needs a lot of preparation which can be daunting. Read on to find some things to consider. Planning ahead can make it a more enjoyable, and less stressful holiday.

Despite the extra planning, it does not mean that having Parkinson’s Disease that you cannot travel.

One of the first things I had to accept when adjusting to being a carer wife of someone who has Parkinson’s Disease was that our holidays would be different. That a lot of adjustments and allowances would have to be made.

Professional Advice on Holiday Plans

• One of the first things and essential is to speak to your Parkinson’s Consultant or nurse. Talking through your plans can really help with advice on scheduling travel and medication.

• Talking through holiday travel time schedule and destination with professionals can help to clarify any concerns and advice.

• Checking medication and ensuring you will have enough with professionals is essential alongside timezone changes.

Travel Preparations – Where to Travel for your Holiday with Parkinson’s Disease

Thinking about where to go on holiday is important. Depending on where you are at with your Parkinson’s Disease journey can dictate your choice of holiday. For example, it may be that you have always enjoyed long distance holidays in hot climates. Or maybe you enjoy activity holidays that require a great level of fitness, or even holidays in colder climates.

Wherever your choice of holiday destination, it is important to recognise that more planning and organisation needs to be made. Expectations also need to be realistic when you holiday with Parkinson’s Disease.

Hot Climate

Hot weather can cause fatigue for someone with Parkinson’s Disease. It can make symptoms worse and cause dehydration. Regulating body heat can be problematic. Low blood pressure which is common in Parkinson’s Disease can make dizziness much worse in heat and cramping can increase. Experiencing side effects of heat can result in a pretty miserable holiday for both of you.

Some Tips for a holiday in the Sun

• Don’t stay out in the sun for too long. Try and stay indoors or under an umbrella between 11 am and 3pm.
• Drink plenty of water to stay hydrated. A bottle of water to carry around with you is ideal.
• Wear loose light clothing. Breathable light clothing is ideal to reduce sweating.
• Using air conditioning to keep your room cool.
• Avoiding over indulgence of alcohol and caffeine which can trigger sweating. A side effect of Parkinson’s Disease is that body regulation is disrupted and often do not sweat enough. We need to sweat to cool our bodies down.
• Use high factor sun cream. People with Parkinson’s Disease have an increased risk of skin cancers.
• If fatigue is an issue due to the hot climate or terrain, speak to your holiday company to see if you can hire mobility aids such as a scooter, wheelchair or rollater.

Some Tips for a holiday in Colder Climates

• As said above, someone with Parkinson’s Disease can struggle to regulate body temperature. As with heat, it is also an issue with cold weather. Wear warm clothing for the climate.
• Having Parkinson’s Disease will lead to reduced ability to be active and keep our body core temperatures up.
• Plenty of hot drinks to stay hydrated and keep warm.

Useful Tips for Active Holidays

Depending on where you are in your journey of Parkinson’s Disease, level of fitness will vary. Despite level of fitness, it is important to keep active for as long as possible. Activity helps the emotional and physical aspects of Parkinson;s Disease.

Apathy is a frustrating side effect and can impact on someone’s interest in any daily and holiday activities. When this is present, they often need a lot of encouragement. If you have shared interest in activities in the past, they may appear ambivalent about these due to their apathy. This is often hard on partners to understand. Believe me, I have been there! It is natural to want things to stay the same, including holidays.

It may be useful to consider their interest and ability or want to participate when booking a holiday. For example, one of the last activity holidays we took together proved very difficult emotionally. We often enjoyed a short break looking at the wonderful historical sites in various countries which involved a certain amount of walking. Looking at terrain, distances and weather I thought I had it all covered with mobility scooter, clothes, access. The lack of interest and motivation had not been anticipated at that time.

I did not understand what apathy is at that time. I felt incredibly frustrated and upset as I spent much of the time on my own. My husband sat in the hotel room watching TV. My expectations were that we would continue as we had previously with just a few changes but not so.

Another issue to consider when out and about on holiday is constipation. Majority of people with Parkinson’s Disease suffer constipation. It is a debilitating side effect that can lead to spending much time to and fro to the toilet. Accidents also occur which can cause some embarrassment and difficulty going out and doing things.

With these considerations in mind, packing essentials when out and about is essential. A bag is needed. This large tote bag is ideal, however you can use an everyday rucksack. This rucksack is one that I have made and is for sale in my Etsy shop. If using a wheelchair there are some really good wheelchair bags that are ideal for packing essentials.

Things to pack in a bag when out and about:

• change of clothes,
• wet wipes,
• gloves,
• bags to put soiled wipes/clothes in such as nappy bags is a must.
• incontinence pants/pads if used.

Holidays in your own Country with Parkinson’s Disease

If you are holidaying in your own country, it can be a bit easier to plan. Packing the car up with all essentials as above, wheelchair. walker, scooter; whichever you use. If you do not want to take these or if your car does not have a big enough boot, check out through your holiday booking about hiring equipment needed.

When choosing your holiday accommodation. Check out accessibility. Think about steps in and out. Look at the bathroom accessibility. A wet room is always better than a bath or shower cubicle. Consider whether you can park close by and whether this is important.

There are many self catering accommodations that are accessible for mobility users. Hotels often have accessible rooms. Look on the internet or speak to the companies direct. Some self catering accommodation offer hire of equipment too which is often a bonus and can make your holiday more comfortable.

When choosing your location, look at what is in the area that is accessible. If there will be a bit of walking or pushing a wheelchair for example, check if it is flat. You don’t want too many hills. If you are going to the beach for example, some offer a beach accessible wheelchair so worth checking out.

Make sure you have enough medication with you for your holiday. Speak to your pharmacist to have it dispensed earlier if you think you will run out during your holiday. Take your list of medication with you. If you need to seek medical input whilst you are away, it makes it a lot easier.

Travelling Abroad with Parkinson’s Disease

• Consider travelling flight times. Try and find a flight that will fit in with your regime for medication, off times.
• Book mobility assistance at the airport. Airports are legally obliged to provide full free assistance at the airports on and off the plane. This is available worldwide.
• A good medication pill bag to carry your medication in is a good idea. A bag will keep it all together and not get lost.
• Check out and get advice from your holiday agent regarding accessibility, local hire of equipment if needed.
• Make sure you have medical travel insurance that covers Parkinson’s Disease. Here in UK, Staysure is very reasonable.
• Book flight seats that have extra leg room and near the toilets. More accessible room can help make your flight more comfortable.
• Depending where you are travelling to, check if any vaccinations are needed. Some vaccinations may affect your medication and cause side effects.
• Discuss with your doctors regarding airport scanners. They can affect things such your pulse generator for Deep Brain Stimulation (DBS).
• Take your Blue Badge if you have one with you if you are travelling to EU countries such as Norway and Switzerland.
• If you are UK based you can order a Parkinson’s UK alert card from Parkinson’s UK which tells people you have Parkinson’s. Its a plastic card to go in your wallet.

I have hopefully outlined a summary of ideas and tips for making your holidays a little less stressful. Some issues I have personally found when taking my husband who has Parkinson’s Disease and Dementia away for short breaks are worth highlighting.

• A different environment can be confusing for them
• Different routines can be equally confusing. Try and make them as similar as possible.
• Take any adaptive equipment with you. For example, adaptive cutlery and plates. Bibs and trays. My husband uses a scoop plate and bendable cutlery. Take it with you!!
• Hotel beds do not always have waterproof mattress or covers, even in adaptive rooms. Take kylie sheets with you if needed. I found this out the hard way after accidents.
• Take plenty of incontinence pants if needed.
• Eating out and going to breakfast. My husband found this very confusing and stressful due to different environment and eating ability. I found ordering breakfast to the room easier. Eating out was based on a day by day assessment of how he felt. Accessible, comfortable environment and vibe was key.
• Small trips out was better than a long day out.
• If in UK get a RADAR key for disability toilet access. RADAR keys get you in to disabled public toilets nationwide.. You can buy these from your local Council office or on Amazon. You often find that going to the toilet can dominate your day when you are with someone with Parkinson’s. Constipation is a major issue. Having access to a disabled toilet is a must.
• Take a bag with essentials for any accidents with you, you can guarantee you will need them.

Enjoy your Holidays

I know it does appear daunting but being prepared and doing a bit of detective work before you choose to go away for any break big or small makes a difference. Making memories is important to us all.

Hopefully taking some of my tips will help some of you enjoy making your memories and enjoying your holidays together.

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I look forward to hearing your experiences of holidays and what you have found useful. Please share, it may help others reading this post too.