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Two people reading a book titled "Huntington's Disease Heroes" indoors.
Two people reading a book titled "Huntington's Disease Heroes" indoors.

Patient Stories

Paramjit’s Story

"The beginning of living"

Paramjit shares her experience of Treetops Hospice and the difference it makes to her. Paramjit’s daughter, Sheenam, is living with Huntington’s Disease.

“It’s difficult to put in words what Treetops means to me. It’s a feeling as soon as you enter. Everybody that walks through the door is facing either their own death, or the death of a loved one.

More about our support for carers and loved ones of those living with a life-limiting condition

As soon as I walk in through those doors, it’s as though a heavy burden has been taken away from me. I’m no longer alone. I’m supported, I’m understood, I’m acknowledged.

A sea of compassion

Treetops gives holistic support in terms of really being seen, really being understood, really being heard. And being acknowledged and done in such a way that doesn’t make you feel different or odd or there’s something wrong with you. There’s a sea of compassion.

There’s tears, there’s laughter, there’s frustration and anger. All those human emotions are there. It feels like there’s a net that is held by the staff and the volunteers, and they won’t let us fall.

This place brings out the depth of humanity; the depth of care, of support, of what life is really all about.

There is an acknowledgment at a heart level of what people are going through. There may not even be conversations with some people. But just that look, just a glance, just a hug, touches the humanity of who we are.

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Although I thought of a hospice as being about the end of life, for me, this is beginning of living.

I can let my barriers down here

There’s no judgment of whether I’m doing things right or wrong, crying or laughing, supporting or being supported.

This is a place where I can really let my barriers down. Where I don’t need to pretend that I’m coping.

It feels as though it’s breathing life back into us. I no longer hold onto my breath when I come in. I’m able to let go. I’m able to release. I realise that I actually breathe from my belly while I’m here, whereas other times my chest is very tight, very hard.

I’ve seen no other place like this. It’s accepting. It’s all embracing. Everybody is welcome.

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Making our days count

Treetops takes away that feeling of death being something you have to fear. The whole ethos is about living. And making the most of our moments, because none of us know when our last moment will be, when our last breath will be.

It concentrates on making our days count. And to really embrace who we are, what we are, where we’re at in our lives. We’re all on this path together. We were all born and we will all die. What we don’t know is where or when or how.

I have no words to thank Treetops. I’m in total gratitude to each and every one of the people who strive to make this place so special, to give life to life.”

What is Huntington’s Disease?

Huntington’s Disease is a condition caused by a faulty gene within a person’s DNA, that damages nerve cells in the brain, causing them to stop working properly.

Over time, the disease affects movement, cognition, and mental health.

There are approximately 7,000 people living with the incurable disease in the UK. Less than 10% of people have Juvenile Onset Huntington’s Disease, a rarer form of the disease.

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9 June 2016

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