Our DBS Experience

Jean-Pierre - person with Parkinson’s (France)

Jean-Pierre

After more than 10 years of increasing difficulties, including violent on/off periods and dyskinesias it became impossible for me to manage alone. My wife and I decided to apply for Deep Brain Stimulation (DBS) to be carried out.

Living in Paris, we approached two hospitals, firstly Pitié Salpétrière where I had been treated for over two years; the second was Ste Anne. I met with a very good team, received a good explanation about the operation and was scheduled for DBS in September 2003. The third hospital was in Grenoble in the south east of France, where I met with Professors Benabid and Pollak and the whole team, and was accepted for an operation on 1 July 2003.

Why was the DBS such a success for me?

I was accepted quickly and felt I did not have any other choice
My wife was able to find a quieter room for me when one of my neighbours confused my washing affairs with his and another one, would not stop yelling
I trusted the doctors: I knew Professor Pollak, and appreciated that Professor Benabid took the time to meet with me and answer our questions despite a heavy schedule
During a long operation (16 hours) I listened to CDs my wife had chosen for me, and I appreciated that the medical team were both competent and had an excellent sense of humour
Following the operation, I was looked after magnificently by the whole team. Professor Pollak and his team ensured I received my medication on time, I received good physiotherapy and was well treated by the nurses.

Six weeks later I left the hospital, walking and with no more dyskinesia. The one regret is I that I do not live hear the hospital as they have my file and I could trust this magnificent team completely.

Françoise - Jean-Pierre's wife

Francoise

Jean-Pierre was quite lucky when hospitalised for DBS. But some of his experiences have not been so good and he has experienced adverse situations related to heart disease, backbone arthrosis and even in some Parisian neurological departments. Except for the tremor symptoms, hospital staff are usually unaware of the other symptoms, i.e. cramps, muscle pains and non motor symptoms. The majority don’t assess how critical it is to give medication at the appropriate time.

For those with DBS, most hospital staff have no idea how anxious patients are about the dangers of receiving diathermic or MRI treatments. In France, the question is not what solutions address issues and what strategies are the most effective, but how can we raise awareness and improve understanding and management. An excellent initiative has been developed by Dr Anne Frobert who presented a“Parkinson Plan” to the French Ministry for Health and chairman of the Parliament.

It emphasises the importance of information and education of medical carers in the hospital and private sector. As a 2004 British study demonstrated, giving medication at the individually prescribed times can reduce hospital stay by over five days. The cost savings could generate financing the Parkinson Plan within 15 months. A study with other national Parkinson’s associations should be carried out to assess its cost effectiveness.

It’s essential to develop a comprehensive approach to people with Parkinson's (PWPs) that includes the basics of the disease and the need for a psychological approach. Practical literature such as “The Words to Say It” published and distributed to hospitals and nurses by MEDIAPARK should be more widely distributed to explain why PWP’s need special treatment.

Dr Vanderheyden, from Belgium, has developed an excellent multidisciplinary approach and organises annually systematic education programmes for doctors, physiotherapists and nurses. We need a mobilisation of the medical, political and social community similar to what has been achieved for Aids or Alzheimer diseases.

Jean-Pierre & Francoise

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