Traveling With PSP, CBD or MSA: A Guide to a Safe and Smooth Trip

Travel, both recreational and functional, is a crucial aspect of life for many people who have received a PSP, CBD or MSA diagnosis. 

Whether it’s a few hours on the road, a flight across the country or even an excursion around the world, travel shouldn’t stop because of symptoms. Visiting family and friends, sightseeing and finding new places to explore can significantly improve quality of life, so let’s find ways to make it happen!

PLAN

It’s impossible to prevent every little thing from going wrong, but planning ahead can ease stress in the moment and make for a smoother trip.

1. Pre-arrange transportation.

If traveling by plane, call ahead or go online to prepare wheelchair transport. Transportation can be arranged from the moment you exit the car, all the way to sitting in your plane seat. Airlines are usually very good at designating a representative who will ensure that your loved one will get safely through the airport.

If you will not have a car at your destination, it can be helpful to pre-arrange car transport from the destination airport to your lodging, especially if you require a vehicle that can fit a wheelchair.

Tip: Use a gait belt to help the person get down the aisle and into their plane seat.

2. Be prepared for a medical emergency.

If your lodging has staff available, let them know that you or your loved one has PSP, CBD or MSA. This can be especially helpful if you are somewhere like a cruise, at a resort or staying in a hotel and the care partner has an emergency and cannot advocate for the needs of the person with the diagnosis.

Tip: Bring physical resources on PSP, CBD or MSA to give to staff.

3. Think through bathroom options.

Can you or your loved one go to the bathroom on the plane by themselves? Are there rest stops on the way to your destination?

If the person with PSP, CBD or MSA is not using a catheter, make sure there are options to keep them clean and dry when they need to use the bathroom. If there won’t be a bathroom easily accessible, placing thick incontinence pads on seats and wearing incontinence products can help. Be sure to have disposable wet wipes and a fresh set of clothing with you.

Tip: Purchase a portable, hand-held urinal for road trips. These are available for both men and women.

PACK

When packing, 

1. Carry a packet of medical information.

Have a folder or binder of the person with PSP, CBD or MSA’s medical information, including any advance care directives. Add physical materials that have information about the diagnosis, contraindicated medications and specific care requests. This can be helpful if there is an emergency visit to the hospital.

Tip: Print or order a CurePSP Medical Alert Card from our resource library and keep them ready in wallets and bags, complete with a secondary emergency contact.

2. Bring plenty of supplies.

Make sure to pack:

• A lot of incontinence briefs or pads, especially if you are unsure whether you’ll have access to them at your destination.
• Extra clothes in case of spills or bathroom emergencies.
• More medication than is needed for the number of days you plan to be away from home

Tip: Pack these supplies together in one bag for quick and easy access.

3. Consider investing in a foldable wheelchair.

Foldable wheelchairs are great for car or plane travel. They can be easily stored in the trunk of a car or checked at the airport.

Tip: Call your local lending closet to see if there are gently used travel wheelchairs available. Lending closets are great places to find mobility aids.

It may require some creativity, but there are lots of ways to continue traveling despite having PSP, CBD and MSA.

CurePSP’s Peer Support program can be a great way to connect with other people who have lived experience with these diagnoses and can provide insight to how to live life well with PSP, CBD and MSA.