Patient Sue Jackson smiling on holiday

Sue Jackson shares her personal experiences of living with MND and how we have supported her.

"I was diagnosed with Motor Neurone Disease in April 2020. This is a devastating diagnosis as there is no cure and a life expectancy of only 3 to 5 years.

I was a very active and social person before my diagnosis. I enjoyed walking in the countryside, dancing, ice skating, going to the gym and meeting friends.

It is now July 2022 and most of my muscles have become very weak. I now struggle to walk and use a wheelchair, and only my right arm is still functioning but not very well.

My speech and swallowing are thankfully not affected yet, but will probably fail over the next year or so.

Coming to terms with my diagnosis

My life has changed enormously from a fulfilling active lifestyle, to one where I am completely dependent on others to do most everyday activities, such as dressing, going to the toilet, sitting up in bed, and making meals, etc.

Treetops has helped me enormously to come to terms with my diagnosis, life expectancy, and complete change of lifestyle.

Peer support

Treetops holds monthly informal meetings for MND sufferers and their carers. This has been a great way for me to meet other people going through similar experiences to myself, and to chat to them about ways of dealing with all the issues and problems that we face.

SPRING Programme

Treetops also has an excellent 12 week programme - SPRING- which I took part in during 2021. It's a series of weekly chats that covers many topics that are useful for anyone dealing a life-limiting diagnosis.

All areas covered were useful. They included dealing with anxiety, managing my symptoms, emotional resilience, looking after yourself, planning and prioritising, your personal legacy, funeral planning, spiritual needs and planning for the future.

We also discussed a lot of OT (Occupational Therapy) adaptations and aids. This was an area of concern to me as my body gradually loses muscle function.

There was something to learn and gain from all sections of the programme.

Couple smiling on holiday

It is a very flexible program that can be changed to focus more on each person's individual needs - skipping some sections and focusing more on others as required.

Before the programme, I worried a lot about the future and what was going to happen to my body. Now I worry a lot less, and feel more able to cope.

I understand what adapted aids there are to help me, and I have more emotional resilience and plans for the future.

Additional support

Treetops is always a very welcoming and peaceful place to visit, and the staff are very friendly and helpful. There are many other activities to explore, such as Book Group, adapted exercise classes, counselling, adapted Tai Chi, and complementary therapy sessions.

Treetops has been an invaluable support during this very difficult time. I’m sure they will continue to provide me with excellent care & support in the future. Thank you!

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