Mel and Jean live in Fife. Mel is a former police officer and fire officer and Jean is a retired teacher. Mel was diagnosed with Parkinson’s disease in 1985 when he was 46 years old. Jean has been his long term unpaid carer. She has supported Mel emotionally and has provided increasing physical support during the last four or five years.
Parkinson’s affects Mel’s sleep in different ways, but for years he was only given very general advice on how to address his sleep problems. The only specific advice he got was to avoid coffee.
Mel tried various tactics, such as getting up out of bed rather than lie awake or playing relaxing music. He tried everything but with very little success. It was not until 2003 that a consultant told them that sleepless nights were a common problem for people with Parkinson’s.
Mel and Jean get support from a specialist Parkinson’s nurse who provides invaluable support both in person and over the phone. If Mel seems to be reacting badly to new medication, for example, Jean can call her and can talk to the consultant right away about changing Mel’s medication. This provides great reassurance for both Jean and Mel. Mel also has support from a physiotherapist from speech and language therapists.
What self management means for Jean
For Mel and Jean, self management is about not letting a long term condition dictate your life. Mel has always made his own informed choices about how best to manage his condition. This includes discussions with doctors and nurses about the benefits and potential disadvantages of trying new medication. With the support of a specialist Parkinson’s nurses only a phone call away, Jean and Mel have peace of mind.
When Mel was first diagnosed there was no specialist community-based support for people with Parkinson’s. Mel and Jean began to get involved in Parkinson’s UK and found that other members all said that sleep was a problem. They recognised a need for people to be able to share their experiences and learn from each other.
Jean and Mel have recently been the inspiration behind the Parkinson’s sleep project, a Parkinson’s UK initiative which provides people with information and practical advice on managing sleeplessness associated with Parkinson’s. They wanted to make sure that others did not go through years of not knowing how to cope with this aspect of the disease like they have.
It is important to realise that sleeping badly (or not at all) isn’t the end of the world and that it should not be allowed to dictate your life. Once you accept that it’s a fact of life, you worry less and just pace yourself the following day.
The sleep project was set up after successfully applying for a grant to the Scottish Government’s Self Management Fund, which is administered by the Long Term Conditions Alliance Scotland.
Mel has always had a self management frame of mind. He has made his own decisions based on information from professionals and his own understanding of his condition. He resists unnecessary medication, making a judgement each time as to whether the benefit of new meds will be outweighed by side effects. If a new medication will provide a very marginal benefit only, Mel may decide that it is not worth taking when balanced against the possible side effects or its impact on his other medication.
Mel and Jean get lots of help from professionals, particularly the specialist nurse who works with them. They have never felt that any of the professionals have discouraged Mel from self managing. They have been supportive and respectful of Mel’s wishes.