Patient Advice

Doug: I also had two strokes in September 2016, so I have had a double whammy regarding neurological conditions. I have had to adapt and change my way of being, which is okay, but it can be very difficult some days. I think it is important, if we can, to get psychological support, if needed, to find ways of coming to terms with a progressive disease. A progressive disease means that you need to adapt, constantly, to the progression of that disease. This means having to be quite strong psychologically; I personally think that it is, in some ways, more important than the physical aspects.

Richard: I find Acceptance Commitment Therapy helpful. You can learn it from a book and it is designed to increase mental flexibility and problem solving. For more information browse resources on this platform.

Tatum: My biggest advice would be to accept things – sit with the pain, sit with the anger and the frustration. Don’t suppress it and put it to one side. After some time, you will become proactive with it and you ask, “Well, what can I do?” and “How can I get the balance right?” It takes years, but it does work out in the end. The advice I would give is: listen to yourself and communicate. Communication is the biggest thing.

Donna: Eventually, some people with a neuromuscular condition may find the progression of the disease leaves them unable to work, and they have to start claiming benefits. Unfortunately, many find that simply turning up to the Job Centre with a letter from their Doctor, will not suffice. Often, the claimant will be required to attend an assessment by a ‘health professional’, who will grill them on all aspects of the condition, including topics that can be very difficult to talk about. Sometimes the claimant may be asked to perform physical exercises to prove their (lack of) strength. Lack of awareness about neuromuscular conditions is usually the root of these problems. Many have never heard of the different types, or the variability in symptoms from day-to-day. The general advice is to always describe your symptoms as they have been on your very worst day, otherwise you may have to go down the very frustrating appeal process.