Where can we travel in the later stages of MSA when mobility is limited?
How can we still make the trip fun and memorable for all?
Being in a wheelchair does not mean you have to stay home! You can still travel many places throughout the world. Traveling in a wheelchair is very manageable (and still fun); it just requires more advanced planning.
Where to Go
There are many options for travel in a wheelchair. Do some research online. Look for blogs about handicapped accessible travel for the places you want to go. Do you want to go to a city or to a quieter, more nature-oriented place? Do you want to leave the country or travel to another state? Do you feel more comfortable staying closer to home?
There are many excellent blogs regarding wheelchair travel that can spark inspiration and provide very practical suggestions for specific places you plan to visit. One of the most comprehensive blogs is Curb Free with Cory Lee (https://curbfreewithcorylee.com/.) You can get many destination ideas from Cory’s travels throughout the United States and overseas, so start there and explore places you may want to go. Another popular blog is Simply Emma (https://www.simplyemma.co.uk/) which covers mostly European travel.
Personal tip: When we were planning a winter trip to Iceland, I relied heavily on the Curb Free with Cory Lee blog which had wonderful tips for travel in Iceland in a wheelchair. It inspired us to overcome our concerns and take one of our family’s most memorable trips ever.
Who Will We Travel With?
This is one of the most important considerations for the care partner when planning travel. It can be very difficult for a care partner to travel alone with a loved one in a wheelchair. It is physically challenging and just plain exhausting to manage everything on your own. Strongly consider bringing family members – adult children, siblings, nieces and nephews – or close friends who would be helpful and fun. Think about who in your circle will jump in and assist without being asked. Some family members and friends are uncomfortable pushing a wheelchair, transferring someone to and from a bed, or assisting in the shower. Those people will not provide the kind of help you need. Figure out who will be a true partner in helping the trip go more smoothly.
Personal tip: We made it a priority to take nearly all of our trips with our three young adult sons. Not only did it provide wonderful family time together, but the boys were also invaluable in dividing up the work of pushing the wheelchair, transferring my husband to and from bed, and other daily tasks. We all enjoyed ourselves and no one person felt overwhelmed.
What to Bring/Planning Ahead
The unfortunate reality of MSA is that many patients have medical issues, such as orthostatic hypotension (which can cause balance issues) and incontinence, that require extra supplies and planning when you are away from home.
If you are traveling by plane and staying in a vacation rental, ask the owner or rental company if you can send a package ahead of time. You will be able to travel lighter if you mail extra supplies ahead of your arrival. Send more than you think you will need; you can always bring home the extra items in your suitcase.
Here is a list of items that can be sent ahead in one or two boxes:
- Incontinence briefs
- Personal wipes
- Extra pairs of underwear
- Waterproof bed pads
- Small trash bags
- Portable grab bars for the shower and toilet area (suction shower grab bars are available on Amazon and at medical supply stores)
- Special cups for swallowing issues
- Weighted utensils to assist in eating
Don’t send ahead (pack in suitcase):
- Prescription medicines
- CPAP machine
- Prescription glasses
- Handicapped placard (look up the rules for using handicapped placards where you are going.)
- Anything you would not be able to replace easily
Where to Stay
If you are going anywhere for more than one or two nights, it is often easier and more convenient to stay in a vacation rental. You will have access to a kitchen, more space for the wheelchair, and likely a more comfortable place to relax if you decide to “hang around” for a day. Vacation rentals usually have washers and dryers which can also be useful.
Tips for finding a suitable vacation rental:
- Vacation rental sites like Airbnb and VRBO have search filters that allow you to find accessible rentals. Airbnb, for example, has an “Accessibility Features” section with 28 different filters you can click on for requirements like “no stairs or steps to enter” and “step-free shower.” VRBO has two filters, for “elevator” and “wheelchair accessible.” Whatever site you use, look at the search filters and narrow down your search to places that are more likely to be suitable. If you are unable to find any places, you can remove the filters and look for one-story rentals without significant stairs in the photos. You can always contact the owner through the messaging feature on the site and ask about stairs/steps before you book.
- It is also useful to read the reviews for any place you plan to rent. Sometimes you can gather additional information about the rental or its location that can help you decide if it would work for a disabled person.
What to Do/Activities
If you are going to a beach area, call ahead and ask whether there is a beach wheelchair available. Many beach resorts have beach wheelchairs for rent, and this can be a fun way for you to experience sitting on the beach and even dipping your feet in the ocean. Also check with the county where you are going to the beach as many municipalities offer free beach wheelchair rentals at lifeguard stations. For example, dozens of California beaches offer such service (check out this map: https://www.coastal.ca.gov/access/beach-wheelchairs.html).
Many public swimming pools have a lift chair or sloped ramp designed to assist the disabled to enter the water. Ask about pool access when you book your hotel or vacation rental.
Call ahead at restaurants and ask to reserve a table that works for someone in a wheelchair so they will set up an accessible table before you arrive. In other parts of the world, access is not always as available is in the United States, so especially if you are in another country, it’s a good idea to call or even stop by during the day, if possible, to check it out before making a dinner reservation.
Consider Hiring A Caregiver
If it has become difficult to transfer from wheelchair to bed or shower, consider hiring a caregiver at your destination to assist while you are there. This can make the vacation more relaxing for the care partner. You can search for homecare agencies at your destination and call to ask whether they have someone available for some or all of the days you plan to be there.
Personal tip: When we visited Hawaii during the later stages of my husband’s illness, I called several agencies on the Big Island and was able to hire an experienced caregiver who had been a hospice nurse. She came in the mornings to help get my husband up, showered, and fed. If he wasn’t up to going anywhere, she was able to stay with him while the rest of us hiked or went to the beach, and then we joined him in the afternoon for family time the rest of the day. She made it fun for him by bringing her favorite local food and telling him about her family’s long history on the island. Did we wish he could do everything with us? Of course! But the fact that he couldn’t didn’t lessen the special time we spent as a family most of the time we were there.
Be Prepared for the Inevitable Complications
MSA is an unpredictable disease, especially in the more advanced stages. Planning ahead for issues that may arise will provide peace of mind as you leave home. One of the most common problems is a urinary tract infection that can cause significant issues, especially for an advanced MSA patient. There are ways to be prepared while hoping you never have to take advantage of your advanced planning.
Some things to do before you leave home:
- Research local hospitals. Whether you are going to a large, urban area or a more rural location, figure out where you would go to the Emergency Room if you have an urgent problem while traveling. There are online reviews of most hospitals and emergency rooms, and you can get a sense of which ones might be better than others. It’s better to know ahead of time rather than trying to figure it out in the moment.
- Bring printouts about MSA to provide to ER doctors (print at home and bring with you as you may not have access to a printer.)
- If you frequently get UTIs, ask your doctor if you can take antibiotics with you just in case. Often MSA patients and their care partners know pretty quickly if a UTI has developed, and you can make arrangements with your doctor to call them immediately if you suspect an infection. If you have the antibiotics that typically work for you on hand, it saves a lot of time and effort if they tell you to go ahead and start. Similarly, if you are on palliative care, ask your nurse or doctor before you go if they can prescribe antibiotics to take with you just in case. In addition, most doctors are happy to look at photos so if you have concerns about medical issues that can be captured in a picture, take photos and send them to your doctor before you talk on the phone.
- Bring a UTI test kit with you (AZO makes one, and pharmacies such as CVS have their own brand.) If you suspect a UTI, you can do the test to see what it shows, although be aware they are not always accurate.
Contributed by Patricia Libby Thvedt, former care partner to an MSA patient and member of the MSA Board of Directors.