Community Ask for June

We’d love to hear your ideas and suggestions

We are getting in touch with an Ask Our Community for June.

Do you have any tips or suggestions to keep cool in the hot weather?

Please email ideas through to


Thank you to everyone who got involved in our Community Asks in May. We would like to share the feedback we received:

One of our community members is asking for some advice. Her adult son wants to write a book about his life with Adrenoleukodystrophy (ALD). He is unable to write the book himself and would need support when developing the content of the book.

A community member suggested the following ideas:

  • decide who the book is for, then choose a style for that audience. I. e. If it is for fellow ALD patients and families and the story is autobiographical use ‘I’ and ‘we’. If it is supposed to inform the wider world and they are not only writing about their own experience they may want to use a more formal style.
  • decide on a provisional structure (that can always be totally changed, so don’t get stuck on the first idea). That structure will help organise ideas about content. E.g. chronologically through their life, or themed around issues they have encountered, or other people they interact with.
  • does the person writing have speech? If speaking is easy invest in a device that can take voice notes and that can be used to label those recordings according to the structure they have chosen to start with. Most good mobile phones do that. If not an old-fashioned Dictaphone that produces MP3 files that you can load onto a laptop or PC. Whatever tech they are comfortable with. That way they can capture their ideas and thoughts and when they feel they have enough to make it interesting then they can look at how to get it into a printable text.

Another community member suggested finding a ghost writer to assist with writing a book and recommended the following websites. They recommended to ask for samples of their writing, or past projects, and find someone who’s voice fits the story that’s going to be told:

Our team has suggested these options: “One option is to contact local colleges and ask if they have any students who are on a writing course that could support this project. Another option is looking at getting a ghost-writer by reaching out to local writing groups or colleges and see if any students completing a writing course would be willing to help.”

Our writer and illustrator or our Children’s ALD Book advised “Someone local would be the best route. A factor to consider is whether or not this is a children’s picture book, a novella, or a longer piece. Writing courses are a good option, but local Facebook groups might be another avenue. A recently retired individual, with fresh time to fill, a pension to support them, and looking to do some good could be ideal, particularly if they worked in a professional capacity where they have some word processing and good English skills, would be a really good fit.”


One of our community members is experiencing increasing difficulty brushing their teeth. This is due to tremors and weakness in their hands and arms. We would like to know whether anyone else has experienced this and if they have any advice or helpful tips.

A community member has suggested a toothbrush called Dr Barman’s Super Brush. It makes the process of brushing teeth much quicker because of the shape of the toothbrush it cleans all sides of the teeth at the same time. They are available on Amazon.

As a team we had some ideas that may be helpful:

  • Brush teeth in sections at a time
  • Sit and rest/balance arm whilst brushing teeth
  • Talk to dentist about prescription toothpaste
  • Listen to music whilst brushing teeth to help calm
  • Use mouthwash to help clean teeth
Alex - The Leukodystrophy Charity