Meet Tanya

Tanya Goulart was diagnosed with Motor Neurone Disease (MND) in January 2024, after experiencing symptoms since 2018. Her condition had slowly progressed from problems with walking and balance, to losing grip strength in her hands. The official diagnosis came as a devastating blow; particularly as Tanya and her family were still grieving the loss of her sister to breast cancer just months earlier.

Reflecting on that time, Tanya shared, “Straight away you’re thrown a massive team of people – breathing, dietitians, palliative care, speech, OTs. It was really overwhelming having to tell my family. We were grieving the loss of my sister, grieving for the life I’m no longer going to have, grieving for my children, my husband, my parents.”

Tanya was already aware of Priscilla Bacon Lodge, as her sister had received support in the original building on Unthank Road in Norwich. With help from palliative care nurses based at the new Lodge, and from the Motor Neurone Disease Association, Tanya visited to find out about the services and support groups on offer. “We decided yoga obviously wasn’t for me!” she joked.

Tanya began receiving psychological therapy, which she continues on a fortnightly basis. She explained how important this support has been, “Coming and speaking to the team here isn’t going to change the outcome, but it’s a release. I don’t want to let it all out in front of my children and my husband, so it does really help. Some weeks I don’t even talk about MND, but I can just say ‘Today’s been a good day’ or ‘This week’s been rubbish.’”

Since then, Tanya has embraced a range of services at Priscilla Bacon Lodge, including complementary therapy. “They do lovely massages of my hands. I used to love having my nails done, and really miss it, but unfortunately, salons don’t cater for people in wheelchairs. I get that chance to switch off, relax, and forget about things for a little while. It just makes me feel like the time before MND.”

Although she found music therapy in groups wasn’t for her, Jane the Music Therapist worked with Tanya to find something she did enjoy – guided meditation. She has also joined arts and crafts sessions, where staff adapt activities to her physical needs. “I didn’t think I was going to be able to do it because I don’t have the pincer grip anymore, or much strength, but they made everything work. MND takes so much away from you, so just being able to sit and do crafts is lovely. It gives me that chance to switch off and look out at the beautiful gardens.”

She added, “Coming here has definitely improved my quality of life. I got to the stage I didn’t want to leave the house, but I look forward to coming here now. It’s about the only time, other than hospital appointments, that I do go out. When I come here, there’s the café with some great food, and everyone is so lovely. I sit and chat with the receptionists, all the staff, and the volunteers. Even just sitting in the gardens here is so tranquil.”

Tanya’s perception of hospices has completely changed. “At the beginning, you think a hospice is just for people with cancer, but it’s not. You may picture a dingy ward where you’re left in a bed, waiting for your time to die. But here, the doors open into the gardens. I still want to have as much normality around me as possible; I want to be able to see nature and have fresh air. I don’t want to be confined to a ward, or a bedroom where nurses are coming in and out of the house.”

For Tanya, Priscilla Bacon Lodge has become the place she would like to spend her final days.

“I don’t want to die at home; I want peace and tranquillity. My husband has bad memories of his uncle dying in hospital, but this place is so different. It’s not clinical, you don’t get a hospital vibe at all. When you come here, it’s like a warm embrace around you, you just feel the calmness. I feel peace the minute I come through those doors. I don’t know what it is, it’s like a little magic about the place.”

Help us to enhance care for more people like Tanya, and help hospice care live on for all, for now, forever by leaving a gift in your Will to the Priscilla Bacon Hospice Charity.