Hospice helps patient with motor neurone disease enjoy life again

Categories: Care.

I tell my young grandsons I have got a bad leg. They don’t need to know granddad has a disease that may give him just a couple of years or so to live.

I used to be a fit 71 year old. I could climb Ivinghoe Beacon with my grandsons, kick a football around in the garden and go out walking. Not anymore. It breaks my heart. But I have learnt to manage my illness, put things in place and enjoy life once more.

Peace Hospice Care helped turn me around. I also got great support talking to Glenn Phillips, the founder member of the local Motor Neurone Disease Support Group and other members of the group who truly understand what I am going through.

If it wasn’t for this combined support, I don’t think I would be here. That is how bad I felt. My diagnosis left me in a terrible place in my mind.

Before my diagnosis, I was a carer for my partner Zoe, who has multiple sclerosis, I looked after my two young grandsons Ollie and Oscar each week and enjoyed doing my garden.

MND took that away from me. I couldn’t deal with it.

I was referred me to Peace Hospice Care by my doctor. My eldest granddaughter broke down in tears when she heard the word ‘hospice’. She thought it was the end of me. Instead it was the beginning of a new me.

I was given a full assessment at Peace Hospice Care Starlight Centre and given a counsellor and physiotherapy group once a week. I made myself turn up and trusted the experts.

At the same time I went to a support group for people with motor neurone disease. I remember having a ten minute chat with the founder member of the group. That made a huge difference. He was inspirational and understood what I was feeling. He confirmed that I would never get used to MND but I could find a way to manage it.

Peace Hospice Care has helped me find that way and manage my deteriorating health. The support of the physiotherapists at the hospice and other healthcare professionals has been overwhelming.

I used to turn up for my weekly physio with my head down. Now I walk in happy and have a laugh with other members of the group. We keep each other going.

In the near future I am going to join the hospice weekly walking group and meditation drop in sessions. I will also continue talking to my colleagues with MND and I know my family are there for me.

All this support has enabled me to get my life back on track. I urge anyone who is out there desperate for help to not suffer alone.

I want everyone to know about the hospice and Starlight Centre. I can’t speak highly enough about them. I wear the hospice badge on my summer hat and I praise them constantly.

I may be a granddad with a bad leg but I have certainly taken big steps forward since my diagnosis. I thank everyone who has stood by me and helped me through the dark days. I am enjoying life again. I really am.

For further information on the Starlight Centre’s programme of supportive courses, complementary therapies and workshops contact 01923 330330 or starlightcentre@peacehospicecare.org.uk

To find out more about the MND support group for people with MND and their carers in the South Herts Area, please contact Jenny Fellas by email: chris_jennyfellas@hotmail.com

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