Bronze staute of a Parkinsons' Nurse on leafy background

In my experience, the role of the Parkinson's Nurse is central to the successful management and care of Parkinson's patients.

My Nurse told me, 

"Our job is to enable you to have the best quality of life available to you." 

This illness has many different aspects to it and a Parkinson's Nurse specialises in it and so has an expert and detailed knowledge of it. 

They take some pressure off Consultants' waiting lists. They are usually attached to specialist departments of Neurology as part of a team. They often educate other nursing staff about Parkinson's disease. They call upon physiotherapists, speech and language experts and others where necessary. 

It was around three years after diagnosis that I first saw a consultant {other than the one who had diagnosed me}. I now see him annually. I also see my Parkinson's Nurse specialist annually and the appointments are so scheduled that I have an appointment at the hospital once every six months. 

My Nurse is called Mabel and is based at the JR Hospital in Oxford. 

She is a force of nature: clearly an expert, positive, optimistic, energetic and enthusiastic. I knew instantly that she would be good for me. 

Mabel referred me to specialist physiotherapists, who were part of the team. They too are blessed with the same disposition as Mabel. 

The first physiotherapist I saw thought that adjustments were needed to my medication. She reported back to Mabel. Mabel saw me again at short notice. 

She agreed to the changes to the medication. 

In addition, Mabel was, very concerned that I should take my tablets strictly on time. She explained that failure to do so would produce a sub-optimal performance.  

Sticking to the timetable I find difficult. I persevere, to avoid incurring Mabel’s displeasure! 

- Tony Gregory

How can I get referred to a Parkinson’s nurse? 

Parkinson’s nurses either work in the community or in a hospital to support people. Community nurses can be accessed via your GP upon request. Hospital nurses, such a Mabel, are accessible via the hospital consultants. 

If you struggle to get a referral via the normal means it is a good idea to contact your Parkinson’s Local Advisers. 

Who else can help with a Parkinson’s Diagnosis? 

Parkinson’s is a complex condition that requires specialist help. Upon diagnosis be sure that you are referred to the correct health and social care professionals. All the following may well play a part in your journey, 

  • Neurologists
  • Gerontologists
  • Geriatrician
  • Parkinson’s Nurse
  • Physios
  • Psychologists
  • Speech and language Therapists
  • Occupational Therapists 

Each of the above well help and guide you to living a full and pain free life. The early days of diagnosis can be overpowering so make sure you ask questions and take it slowly. It is these early days that will help you to continue to live with Parkinson’s.  

 

Remember there is no one size fits all for people with Parkinson’s.

 Always ask the question you want to ask, no matter how basic you might think it is. Make sure you are clear on disease progression, potential balance problems and general slowing of movement. The chances are if you want to know others will also want you know, so make that list. 

Be sure to include family member in the learning process and the decision making as their support will be invaluable.   

“If you put your mind to it, you can accomplish anything”

- Marty McFly (Michael J Fox)

 

 

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