Tina’s Story – supported by Phyllis Tuckwell

“When I first got my diagnosis, I was in bits. I didn’t know what was going to happen to me. Phyllis Tuckwell have been a God-send. Without them, I don’t know what I would have done.”

Tina was diagnosed with Motor Neurone Disease (MND) in May 2021, and was referred to Phyllis Tuckwell shortly afterwards.

“It all started back in October 2019,” she says. “I had a very bad back, and I kept catching my foot on things and tripping over. My doctor initially thought it was a trapped nerve and sent me for some physiotherapy, but that didn’t help at all. As time went on I starting limping, and my foot kept catching more and more. In the end I was really struggling to walk.”

Tina was referred for a nerve conductor test, but before her appointment came around, the Covid pandemic hit the UK and her test was cancelled.

“In July 2020 things started to open again, and I managed to get new appointments for my tests. I had MRI scans, a CT scan and nerve conductor tests, and once the neurologist had the results she asked me to come in and see her. I took my daughter, Kerry, with me, and we went in together.”

Tina’s neurologist told her that she had a rare form of Motor Neurone Disease called PMA (Progressive Muscle Atrophy). MND is a neurological disease that affects the nerve cells which control voluntary muscle movements such as walking, talking and swallowing.

“I just couldn’t believe it. It was such a shock. All I could think was why? Why me, why now? I didn’t understand why I’d got this disease. I’ve worked and been active all my life, I’m a very independent person, and now I’ve been hit with this. I felt as though my life was finished, that I might as well just end it. I didn’t want to be looked after or be a burden on anyone, that’s not me. It was devastating. My daughter was really strong. We came home and explained to it my son, Gary, who lives over the road from me. It’s been very hard for them both, but they’ve been so supportive. It took a while for it to sink in. At first I just couldn’t get my head around it. When I told my family, I couldn’t stop crying. I was worried about my job as well, because I love working, and even though I’m 66 and at the age of retiring, I don’t want to. My partner died 15 years ago and I live on my own, so work sort of keeps me going. I didn’t know if I would be able to carry on though, or even be allowed to.”

“Gina, a lovely lady who works with my neurologist at Frimley Park Hospital, came to see me and explained more about MND to me. She said they would help me to get ready for the next stages of the disease, and that I needed to be prepared, because it’s a degenerative disease. She said that I was going to be referred to Phyllis Tuckwell. Well, I was really worried then! I said ‘Phyllis Tuckwell Hospice?’ My first thought was the end of life. But she said ‘no, it’s not just end of life, they can help you to manage your symptoms now, and get you ready for when they get worse’. She told me exactly what Phyllis Tuckwell does, and I was amazed! I never knew they did all that!”

Tina was assessed by Phyllis Tuckwell Advice & Referral Team (ART) who referred her to the Occupational Therapy team, and was visited by Catherine, one of the Occupational Therapists.

“Catherine is so lovely!” says Tina. “She explained why she was there and what she could do to help me. I don’t know what I would have done without her; she’s been absolutely amazing. She came over to see me, and she had on all the PPE because of Covid, and she went round the house and looked at everything to see what I was struggling with. She saw what I could and couldn’t do, and what I needed to help me with those things, and then she organising getting it all for me! I was struggling with using the toilet, so she got me a toilet seat with hand bars on it, to help me stand up, and she’s helped me to get a stair lift and bath lift installed too. Before I got the stair lift I was going up and down stairs on my bottom, my legs just couldn’t take it. I couldn’t carry anything upstairs either, but now I can put things on my lap and go up on the stair lift with them. It’s made life so much easier. I’ve got a wheelchair and a walker too, so I can get around so much more easily now, and I’m not so tired. I’ve got more energy because I’m not struggling so much. It’s surprising how tiring it is struggling to get around the house. She wears PPE for all her visits. She’s very thorough. She always puts on an apron, mask and gloves whenever she comes over.”

“It’s not just equipment for inside the house that she’s helped me with. I was finding it hard to manage the steps outside my front door too. I kept tripping on them and falling over. I had to call my neighbour to come and help me up. Catherine phoned the council and arranged for them to get some handrails put up for me, so now I can manage the steps on my own. She also noticed that I was struggling to get up off my sofa, and arranged for me to get a grant from the MND Association (MNDA) for a riser chair, and now I’ve got it and it’s absolutely amazing! At the time I was thinking ‘I don’t need that, what are you doing?’ I was in denial, because it made the disease and the diagnosis too real for me, but she knew what I needed and she was right. She’s been a God-send, I can’t praise her enough. She doesn’t just look at what I need at the time, she looks at what I’ll need in the future, and gets it all in place so it’s ready for me. If I email her, she gets straight back to me. She’s very good. She always says if I’ve got any questions just to ask her. She listens to me talking about everything, and she says she’s noticed a difference in me since she first met me, that I’ve really come on, and I said ‘that’s down to you and the support I’m getting’. It’s been amazing. I never realised when you get something like this disease, the amount of support that is there is for you. I’m so glad they put me under Phyllis Tuckwell; I don’t know what I would have done without them.”

“Now that Covid restrictions are easing, I’ve been able to go up to the Hospice too. I feel safe there. Everyone wears facemasks and the staff who treat you all wear PPE. I’ve seen Ali, one of their Physiotherapists, and a Complementary Therapist called Alison, who was amazing. Catherine referred me to them both. When I saw Alison, she asked me what massage I would like, and I said my legs and my feet, and she used some oils and gave me the most amazing massage. She said I should relax, and that I could do whatever I wanted to – if I wanted to close my eyes and have a little sleep then that was fine, or I could just lie there and think about things, or if I wanted to cry then I could just cry and let it all out, that was fine too. She said that it was my time and that I should just be however I felt, I didn’t have to try to be anything else. She was just so amazing, and the massage was so lovely, so relaxing. She booked me in for four sessions in total, and I’ve had two of them. The second time I had a back and neck massage, which was wonderful. I think I might have that again next time.”

“One of the times I was at the Hospice seeing Catherine, she said that she thought I might benefit from a bit of counselling. I think she could see that I wasn’t dealing with my diagnosis very well; I was in a bit of denial I think. She said that she didn’t want to pressure me and that it was completely up to me, but that if I wanted to talk to someone then there was someone there who could come and have a chat with me. I think I was just really overwhelmed with everything that was going on. It had all happened so quickly. I’d suddenly gone from being a person who probably had a trapped nerve or something, to being diagnosed with MND and being told that I needed a stair lift, a bath lift, a wheelchair, a walker, a riser chair, and things like that, all at once. It was a bit overwhelming. So I said yes. Catherine arranged for Claire, one of the Counsellors, to come and speak to me. I sat and talked to her, and just let everything out. I told her all about how I was feeling. I spoke to her for quite a while. It was so nice having someone to listen. As Catherine said, you can’t always talk to your family and friends about your illness, because you want to protect them and not upset them. Talking to Claire was really good because I actually told her how I was feeling and she understood. I told her that when I got my diagnosis I didn’t want to carry on, that I didn’t see the point, and she told me that it was normal for me to feel like that under the circumstances. I only had one session with her, but I spoke to her for quite a long time, and she said I can speak to her again anytime I want to, I just need to ring up and arrange it with her.”

“I’ve had so much support since my diagnosis, I can’t tell you. As well as Gina at Frimley Park Hospital and everyone at Phyllis Tuckwell, my two children have been so amazing too. With their help I feel I’ve come a long way. I love gardening and dancing, those are my two passions, but I can’t do either of them now. When I got my diagnosis it was May and I’d been thinking about getting the garden sorted for the summer, and then I found out I had MND and I said to Gary ‘that’s it, that’s my garden gone’, and he said to me ‘come on, we’re going to garden centre to get you some flowers’. I said ‘there’s no point, I can’t do the garden’, but he insisted that we were going. Being there helped, I felt a lot better, and we bought lots of flowers and took them all home, and he did all my garden for me! He did loads and he’s kept it up, he comes over and waters the flowers, and he does my shopping for me too. Whenever he goes anywhere he always asks if I need anything, and he comes over most evenings too, or if not he’ll text and ask if I’m ok. Kerry comes in after work and checks I’m ok too. When I was diagnosed she said to me ‘do you want me to move back in with you?’ and I said ‘no’, so she said ‘you’ll never be on your own, when you need me to I’ll move back in with you’. I’m so lucky to have such wonderful children. I’m a different person now. I’ve gone from being someone who wanted to kill myself, to now accepting the fact that I’ve got this disease, but also I’ve got this support and everybody’s doing everything they can for me. Catherine always says ‘don’t struggle, if there’s anything you need we’ve got lots of things that can help’, and it makes you feel so much better when you’ve got someone there who understands and knows what you need. I don’t know what I would do without all this amazing support I’ve had.”