Physical Activity Study

[Admin_MND]

The Association is supporting a project which aims to develop new ways for people living with rare conditions (including MND) to be as physically active as they can and want to be. Exercise can have a large impact on managing day to day life and also general health (bearing in mind that physical activity is a range of activities, not just the gym).

The project is being run by University College London and is funded by the National Institute for Health Research (NiHR). To be successful, the project needs to understand what people living with rare conditions feel are the benefits of engaging in physical activity, and to get their opinions about what should be measured in terms of outcomes from exercise. So, it is essential that the patient groups that the project is seeking to help are involved – this will ensure the study understands what is important to them.

We know that in the case of MND, exercise is not about restoring physical function. What we'd like to know is why it is important to you? For example, does it improved mood, or is it useful in preserving function?

Any information you give will be used to shape the project, and your input will considered as outcome measures are drawn up – you will not be identified in the study.

It would be very useful to have your views on the following:


1. What are your experiences of continuing physical exercise – what are the barriers? What works for you?


2.What do you feel are the benefits of physical exercise for you?


3.What would you measure to show that taking part in exercise has been successful e.g improved mood?


If you would rather send your thoughts direct to a member of staff please email them to [email protected]


Thank you in advance.

[Lynne K]

1). The local 'Beats' team run chair based classes and gym sessions at our local council leisure centre. I was having great difficulty getting up from falls because I didn't have enough core strength. After a couple of weeks of 3 classes per week and a couple of gym sessions I could get up from a fall at home much more easily.
2). Build and/or maintain strength and a feel good factor.
3). How strong I feel in different areas of my body and how energised and upbeat I feel afterwards.

Lynne

[Terry]

1. What are your experiences of continuing physical exercise – what are the barriers? What works for you?
I have always done a lot of exercise and when I found out that I had Mnd I joined a gym / spa. My strength and abilities have declined but I have adapted to do different things.


2.What do you feel are the benefits of physical exercise for you?
I think it's enabled me to keep some core strength and keep me moving. This has benefits in so many ways. I have a slower form of Mnd so it might have actually built some muscle in certain places. I do however think that over doing things has a detriment effect on movement. Now I have to be careful how much gripping, pulling exercise I do as I notice that I can't move my hands much afterwards if I do too much.


3.What would you measure to show that taking part in exercise has been successful e.g improved mood?
Being part of a group or a small gym improves my well being. I have built up many relationships with the staff and many of the others that go there. I do generally have a laugh and talk to others (so called normal people) with my talking machine.

If anyone or the people doing the study want any further info etc, they are welcome to contact me.

Love Terry