Breaks away can feel out of reach after a diagnosis of PSP or CBD. But with the right planning and know-how, they not only are possible but can provide a much-needed break from daily routines, as well as beautiful family moments. Here, Mike Lucas shares details of his relaxing long weekend with family at Longleat.
“In 2020, after my wife, Jane, experienced changes to her speech and movement and started to have falls, doctors thought she’d had a stroke. Next, Parkinson’s was mentioned, but I asked for a second opinion as it just didn’t feel right. PSP was finally diagnosed two-years later, once we had been referred to Dr Ghosh in Southampton.
“Not long after her diagnosis, Jane fell down part of the stairs. She broke four ribs in that fall, so they kept her in hospital where she was mainly in bed for the duration of her stay. This saw her mobility decline quickly. Now, someone must be on hand to help provide support when she is upright, and we use a wheelchair when out and about. I also have carers in three times a week to assist with the morning routine. It can make no end of difference having an extra pair of hands to help out.
“Before Jane’s diagnosis, we were quite an outdoorsy couple, often loving a long walk together. So, trips out exploring, although not as frequent or far away as before, are quite important to us.
“At the end of February, we went to Centre Parcs in Longleat with my two sons, Andrew and Richard, Andrew’s wife, and Andrew’s son, who is nine years old. There was no special occasion for getting away, just a nice family break which helped to break up the usual routine of daily life.
“I was impressed with the three-bedroom, accessible lodge we rented for the weekend. It was much bigger than I’d anticipated. All three bedrooms were double, complete with en-suite bathrooms. The room Jane and I stopped in was fully accessible with a large wet room. I was surprised by the fact our bedroom even came equipped with an electrically controlled profile bed for Jane, complete with cot-sides.
“The whole lodge was on one level, largely open plan, with no carpet, meaning it was easy for pushing the wheelchair around on. And we had an accessible parking bay, right outside of the lodge, where we left my accessible van, which has been revolutionary since Jane’s mobility decreased, all weekend.
“We didn’t need to pack anything we wouldn’t have before Jane’s diagnosis. What we needed for the trip was either in the lodge or could be found on site.
“Everything at the site was all within easy walking range and easy to navigate. It was less than a five-minute push along to the main plaza, which housed the swimming pool, cafes and restaurants. My grandson spent most of his time in that pool, he was absolutely in his element.
“Whilst the others were busy with pre-booked activities or touring the site on their bikes, Jane and I would pop out for a coffee, and then head somewhere for lunch. In the afternoon we walked around the wooded site. It was an accessible area, just a few hills, that you would have to be wary of. If you weren’t up to pushing a wheelchair, they did hire out electric wheelchairs and scooters. There was also a free land train which would take you around the site, which wheelchairs were welcome on.
“We’d cook our evening meal ourselves in the lodge, Jane gets tired quite easily, so it meant she could have a rest whilst we prepared everything.
“All in all, it was an easy, stress-free break, that I would recommend.”
