Tony talks to us about holidays with his wife Sally through the different stages of Huntington's disease.

Having recently returned from Mexico with my wife Sally, who has Huntington’s disease, I decided to pick up the mantle and put a piece together based on our experiences since Sal’s diagnosis in 2013.

Pre diagnosis

First, a little background. Sal’s mum had quite advanced Huntington’s disease when we met in 1983 and, like many others, I had no idea what it was or how it affected people. Sal and her family put me in the picture and we decided to get on with our lives, marrying in October 1984. I was in the Army and we were posted out to Germany where we happily decided to start a family. We had very few conversations about Huntington’s disease over the years as this was the way that Sally wanted it. I never pushed, rightly or wrongly, even though I was now aware that it could affect our children.

Over the next 18 years most of our “holidays” were spent travelling back to the UK to visit family when I had leave from the Army. After I left the Army in 2002 and as the kids grew up, we were able to have several holidays including a couple of trips to Florida but these were all pre-diagnosis. As the kids became adults we started taking holidays on our own to Spain, Mexico, Dominican Republic, Bulgaria, Turkey and Jamaica.

Adapting post diagnosis

In order to try to settle Sally down after being diagnosed, one of the first things we spoke about was going back to Cancun, so we booked to travel again in 2014. Sally wasn’t really showing too many symptoms at this stage although her posture was changing and she seemed to be leaning a bit when standing up. However, this didn’t stop us from getting out and about as we had before and we had, what I would consider to be, a pretty normal holiday.

We returned to Cancun in 2016 and by this time Sal had started to lose a lot of confidence when we were out in public. She had started to need a little bit of physical support when walking any distance and her expression would often become “flat”. On this occasion she didn’t want to leave the hotel so it was a much calmer, quieter holiday. She was still able to converse but got very upset if people noticed or commented on her demeanour.

We decided that long haul holidays were not for us after that and we had a couple of holidays in Turkey and Bulgaria that were fairly conventional as Sally was still able to look after herself and we didn’t need any special assistance (although Turkey was probably a bit too hilly the second time we went there). 

Our first real struggles came when we went back to Bulgaria in 2018, by which time Sally needed a wheelchair to get around, however, we had decided that we wouldn’t allow this to become a barrier if we could help it. We booked a regular package holiday through Tui but asked them to make sure that there were adapted rooms available, which the hotel was able to provide. Sunny Beach was a really easy resort to navigate if we stuck to the areas close to the beach, which has a long, flat promenade, a pier and even a wheelchair-accessible walkway down onto the beach. However, when you venture more into the town, there are hardly any dropped kerbs and the kerbs themselves are pretty high at 12 – 18 inches. This meant that there were a few times when we had to walk in the road with the wheelchair.

2019 was the last time that Sally was able to have a say in choosing our destination as she was slowly becoming less verbal and less mobile. She surprised me when she asked to go to Jamaica, where we had holidayed in 2009. This gave me quite a lot of personal turmoil as I wasn’t sure that I wanted to travel that far with her or that I would get anything out of the holiday myself. Anyway, I tried to make it as easy as possible, booking the Premium cabin for the journey and, again, ensuring the hotel accommodation was suitable.

"Apart from the obvious difficulty of using the toilet on the plane, the holiday worked out really well. The hotel staff were fantastic with Sally and her needs and I was able to join in with the volleyball on the beach which I’ve always enjoyed."

Post-covid and with Sally now needing full-time care in all aspects of life, we decided that we would take a trip to Florida, to try to create some positive memories for the grandkids (twelve, ten and three) with Sally, rather than just the figure in the corner of the room who didn’t interact with them. When the older two were growing up Sally and I would take them out at least once a week but the youngest really had no other memories of his grandma. With my two grown-up daughters (thankfully both tested negative) this was a great trip for all of us after some really stressful booking issues. When booking the holiday I made it clear that the accommodation had to be wheelchair friendly and despite their constant reassurance of “it should be”, we bit the bullet and switched from a package to flights only having found a private villa to rent which had all the necessary adaptations. We also obtained quite a bit of refund as I was unhappy with Tui for the first time.

Disney Land Florida

"A huge rental car, an adapted villa with a pool, (a two-day hurricane!) and Disney and Universal on tap ensured a fantastic trip. The extremes of colour and noise seemed to really stimulate Sally. She was awake more during the day and slept fantastically well at night."

It wasn’t always easy when it came to food but mac and cheese was a godsend! However, the biggest godsend of all was having my family with us, Lisa and Kelly (our children) were able to take some of the pressure off which meant I didn’t feel like I was on duty all the time.

Onto our most recent trip. Now, this was entirely my decision and was somewhat from a selfish perspective. I decided that we would go back to Cancun, I knew the resort, I knew the hotel and the weather was almost guaranteed. However, I definitely overstretched this time! Sally’s needs have become much more complex and we haven’t slept in the same room for several years, something which I wasn’t prepared for. She is much more restless during the nights, sometimes making little noises whilst she sleeps which are much more magnified when you are next to her. I probably overreacted to this as I was worried that guests in the neighbouring rooms would be disturbed and complain.

The resort itself is definitely not suitable for wheelchairs with very high kerbs, often there would be a dropped kerb, you’d then walk 100-200 yards and there was no dropped kerb to get down! This was both frustrating and extremely difficult to negotiate, especially at 30 degrees Celsius and about 80% humidity. Halfway through the first week I asked the holiday reps to see if we could get an earlier flight back but none were available, which ultimately I was glad about. There was plenty of shade to keep Sally out of the sun but, to be honest, for the first time it felt like really hard work!

So, will I do it again? It’s a really tough question as I’ve always said I want to do as much as we can whilst I’m physically capable of managing the transfers between wheelchair and bed, bath, toilet etc. I certainly won’t be doing a long-haul holiday unless we do Florida again with the girls. The home away from home has so many advantages so it’s either that or an apartment somewhere not too far away as I really do like the sun on my back.