Traveling with Parkinson’s Disease
Last month I was telling my PRO caregiver support group that full time caregiving doesn’t mean you still can’t enjoy traveling together. It takes planning, a sense of humor, perseverance, and a dash of “what the heck was I thinking?” It’s also possible to get the respite breaks you need and deserve while living with PD.
Over the years my husband Joe and I have done a fair bit of air travel, a lot of road tripping, and when Covid hit, like most folks, we pivoted to Zoom visits. In June this year we made our annual trek to our summer cottage in Ontario Canada. We like to go for a couple of months so we drive because we have our dog Jet and a lot of gear. Gear like Joe’s cooler full of meds, his CPAP machine, a wheelchair, a walker, our luggage, food, etc. to drag along with us.
My preference for driving was cemented after I flew with two large dogs in crates, a husband in a wheelchair, our luggage, and our easy 5-hour flight that turned into a 17-hour odyssey. I decided I’d much rather take the time to drive. It’s a long one, about 2500 miles and 5 to 6 days. I do all the driving but at least I can maintain some semblance of control and we manage to get into a workable rhythm. Generally, I pack us each a smaller bag for the road trip, ones that are easy to carry into a hotel and hold our essentials. I can change out extra clothes or meds from the larger bags without having to take them in every night. We try to get on the road by mid-morning, after breakfast and a quick walk for the dog. Along the way there are several pit stops, for gas, potty breaks, leg stretches, food, water. Occasionally we might detour for a sightseeing attraction. If we’re lucky we will have a friend or relative to spend a night with (depending on our route), but if we don’t have that as an option, part way through the day we think about how far we’re going to go and call ahead to get a hotel reservation.
I know lots of people prefer to have predetermined stops on their travels, but it works for Joe and me to remain pretty flexible about that. As long as they take a dog, aren’t outrageously expensive, are clean and comfortable, and have a well-lit parking area we’re happy.
In August we did the return trip to get home in time to fly (without the dog) to Scotland for Joe’s family clan gathering along the borderlands between Scotland and England. This trip took a lot more planning as we were meeting family in Edinburgh and I was going to stay two weeks longer for some caregiver respite and hike Hadrian’s wall with my sister. We had to consider things like electrical connections which are different in the UK compared to the US, so that Joe’s CPAP would work. Some of Joe’s meds need to be kept refrigerated in a special travel cooler. I also wanted to have extra meds in case of a flight delay or a malfunction of his Duopa pump.
I’ve learned that when traveling through airports with a mobility challenged partner having them in a wheelchair is the way to go. The airline staff help you get through the security and customs lines faster, there’s pre-boarding and people just tend to be friendlier and more willing to help, it makes travel so much easier. I can’t recommend it enough.
We booked our flight so that there was some layover time enroute which meant Joe could stretch his legs and we could be a bit more relaxed and unstressed going from one flight to the next. We also booked aisle seats so that Joe had easy access to the restrooms, and we were only a few rows from it which meant I could help him if he needed it. I spoke to the flight attendants before takeoff to give them a heads up and they were very accommodating.
We hadn’t flown with his own wheelchair before, but we did this time because our kids insisted on it and truly it was the best option for him as he could push it like a walker when he had the energy or sit in it when he was tired. It was super easy to gate check before we got onto each flight. Fortunately, he has three strong adult children who were willing and able to help get him around when we toured Edinburgh. At the gathering there were about 160 people with folks coming from Canada, the US, Australia, Europe and the UK. It was Joe’s second gathering having brought his sons more than 30 years earlier. It was quite special that they were returning with their own children. I enjoyed learning about the history of Joe’s clan as well as the other Scottish border clans who wrecked much havoc on the English. And vice versa.
Part of planning this trip included knowing that Joe would have 24-hour caregiving back in Portland while I extended my time away. His kids were able to get him home safely but with full work schedules and child rearing of their own were unable to stay with him. I managed to hire two caregivers who each stayed a week with Joe while I was in England. They are experienced caregivers who came over prior to our departure to learn our routine, meet each other, and familiarize themselves with our home. Corey had worked with Joe before and was able to pick him up at the airport when he arrived. I felt very comfortable knowing his first week he would be with someone he knew and trusted. The second week Emma stayed with Joe and while we
hadn’t worked with her before, we had known her socially for years and I was confident it would work out. I’m happy to report it did work very well. I was able to get some much-needed time off exploring the English countryside with my sister, Joe was well looked after, and we were both still in one piece when we reunited.
To help cover the costs of caregiving we are extremely fortunate to receive a grant through the Veteran’s administration which offers funds to help keep the veteran at home. If your PWP is a veteran I recommend having their primary care doctor connect you with a VA social worker who can inform you of the potential services available. I’m already thinking about some other respite trips knowing how well this one worked and together we’re in the planning stages of a short trip to New Orleans in the coming months. Bon Voyage!