“We were struggling,” said Jayne. “We had absolutely nowhere to go, and we didn’t know what to do. When Phyllis Tuckwell stepped in, it was amazing.”
Jayne’s husband, Bob, has progressive supranuclear palsy (PSP), a rare neurological condition which can cause problems with balance, mobility, vision, speech, swallowing and memory. He was visited by Dr Trish, and one of our occupational therapists, Tori. Our occupational therapists provide a range of support - including equipment, advice and guidance – to help patients maintain their independence for as long as possible. They provide specialist support to help patients continue to manage activities such as showering, eating, going outside and socialising. By meeting with patients regularly, they can work with them as their condition progresses, providing the support they currently require, and looking ahead to prepare for their future needs. Tori has arranged for grab rails to be fitted in Bob and Jayne’s house, prescribed specialist seating which supports Bob and helps him to move from sitting to standing, and ordered transfer aids that Jayne can use to help Bob into his wheelchair. Tori is always planning ahead to prepare to Bob’s future needs, and has worked with Jayne to ensure that these items have been ordered and put in place before Bob needs them, so they are ready for him when he does.
“Tori’s absolutely wonderful,” said Jayne. "She sees things that we don't see and provides equipment that we didn't know about. We’ve got a Molift, which is a standing aid that I can use to help Bob to stand up from a sitting position. We’ve also got a special wheelchair that goes into the shower, so that Bob can have a proper shower. He can’t stand up on his own anymore, and so I used to sit him on the toilet and wash him down, but he wants a proper shower. And now he can have one. We bought a ramp to go up into the shower, and Bob’s carer just wheels him in and then wheels him out again afterwards. It’s absolutely brilliant.”
As Bob’s condition progressed, Jayne needed more support in helping him to stand up, and so Tori prescribed a posturally supportive riser recliner chair. This comfy chair supports Bob to sit and watch TV, and when he wants to stand up, controls enable Jayne to elevate the backrest to help Bob begin to stand. Jayne can then use the Molift to support him to stand fully, and help him into his wheelchair from there.
“It's one of the best things ever, that chair,” said Jayne. “It's not just the equipment though, it's knowing that they're there. That means everything to me, because this is so hard. I can't tell you how grateful we are to have Phyllis Tuckwell. They phone up every week to ask how things are, and I can always pick up the phone if I need them in between. Tori's absolutely fantastic. She's always thinking of the next step, and what Bob will need next, which obviously I don't know. I didn’t know of anything that would help us until Phyllis Tuckwell became involved. I didn’t even know they helped with this; I thought they only helped with cancer. So when they stepped in and helped us with PSP, it was incredible. Just having someone there is amazing.”
“Bob’s losing the ability to speak, and he's lost his sight as well. It took three years for us to get the diagnosis, and all of that time we were just fumbling around knowing that something was really wrong, but not knowing what that was. When you know what it is, you can deal with it. And with the equipment that Tori’s provided, Bob’s always washed and dressed, and then he comes and sits in the chair, and we can do all of that safely. I can't explain to you the safety net that Phyllis Tuckwell have been for us. They've helped in a very difficult situation.”
More recently, Bob has been falling out of bed, and so Tori has ordered him a bed which can be lowered down to the floor, to eliminate that risk of falling.
“He still thinks he can get out of bed,” said Jayne, “but he's not got the strength in his legs. So he was trying to get out and then falling to the floor. It's a big concern, because I can't stay awake all night to watch him. If I know that he's on a lower bed, then I know he’s safe. All we want to do is keep him out of hospital, and that's what he wants as well. All these things, you just don't know about them, because there's no reason why you would. And then you do need them, and you get people like Tori stepping in and coming up with all these ideas. She knows far more than I do, so she can pre-empt what the situation will be down the line, and we can just wait for her to tell us what we need next. As long as we can keep him up and in his chair knowing that he's safe, that's the main thing. That's our aim for as long as we can.”
Tori has now made a referral for Bob to get a more supportive wheelchair, which will support his head and torso as his condition progresses. Jayne and her daughters are also planning to take him and the family to see a pantomime at Christmas, and Tori is supporting them with advice on how best to manage this.
“It's like having a safety net, knowing they're there at the end of the phone,” said Jayne. “It’s brilliant, because you're in limbo really. You don't know what to do and it's devastating, life changing. You don't know where to turn. We're eternally grateful to Tori; her support has been absolutely fantastic. You’re not on your own, with Phyllis Tuckwell behind you.”
