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When we spoke with people with Huntington's disease about being supported to engage in more or different physical activities, they agreed with their peers who said:
It sounds simple and it is possibly the most important part of helping anyone start something new. Get to know the person not the disease. A person with Huntington's disease may not have developed symptoms yet, may have minimal symptoms that do not interfere with physical activities or may have started to develop some symptoms. The symptoms that people experience in early disease are unique to the person. This means that any expectations about the challenges an individual may face with physical activities may be inaccurate and unhelpful. The important thing is to make sure that a person can share their concerns or physical difficulties. How to create a welcome where the person feels free to talk about any concerns that they have, feels able to ask questions without fear or anxiety is your first priority.
If you are working as part of a scheme, sports or recreational activity club or project it will be important that you follow any guidance that they have. The main challenge for you is how to create an open environment where a person feels able to disclose any concerns that they may have. If you are a member of an inclusive sports or activity club, you will have processes for medical screening and risk assessment of new members already in place. For any advice regarding this go to your sports association or governing body for the activity you’re taking part in.
It is about letting the person tell you if they have any concerns about the activities you are planning together. That means creating a friendly, safe, and open atmosphere. Some pointers that can help include:
Planning Ahead
Planning Ahead
Does the person coming to do the activity know what to expect and what the plan is?
If the practicalities are all sorted both people can concentrate on meeting each other. This really helps to get the first meeting on the right track.
Take a look at the checklist below:
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