3 November 2020

Tess Adams is Parkinson’s Disease Clinical Specialist in Milton Keynes, and she talks us through how OT recommended techniques and equipment can help people with IPD.

She says:

I am the Parkinson’s Disease Clinical Specialist in Milton Keynes. I support people with Idiopathic Parkinson’s Disease (IPD) from diagnosis through to end of life. I am based in the community and work under the guidance of consultant neurologists and provide information, education, advice and support about Parkinson’s and its management and care, to people with Parkinson’s, their families, carers and professionals.

The main aspects of my role include:

  • regular reviews to monitor symptoms
  • helping people manage the medication and side effects
  • management of non-motor symptoms through conservative techniques and lifestyle advice including advance care planning
  • referring to allied health professionals, social care and voluntary sector colleagues.

This job is usually done by a Specialist Nurse and I believe I am the only OT in the UK in this role. Previously I worked as a Community OT in Milton Keynes and early in my career I was the sole OT in the Commonwealth Rehabilitation Service in North West Queensland, Australia, where I covered an area larger than Wales and flew to visit service users. Highlights included doing return-to-work assessments underground in the mines and in a shearing shed on a sheep station - but that is a story for another day.

While IPD is often thought of as a physically disabling condition with a fluctuating presentation, it is very complex. In addition to the cardinal symptoms of bradykinesia, resting tremor, rigidity and postural instability, there are many non-motor symptoms, including mood disorders such as anxiety, depression and apathy, autonomic dysfunction, continence problems (particularly constipation and nocturia) mild cognitive impairment, neuropsychiatric problems including paranoia, delusions and hallucinations and dementia. Sleep is often disrupted. Parkinson’s medications have potentially serious side effects including hypotension, impulse control disorder and hallucinations and confusion.

My OT colleagues across the range of community services are invaluable in supporting my patients and their carers. They ingeniously find solutions and I often refer to them. In addition to the work of the OTs in secondary care and the Home First team, I have hotlines to the OTs in Neuro rehabilitation, Falls, Community OT, and the Specialist Memory Service and I am pleased to see the Consultants referencing the work of OTs more frequently in their letters as equipment and technique may be a better option than increasing medication. “Occupational Therapy for people with Parkinson’s” (Ana Aragon and Jill Kings) is an excellent reference book detailing therapeutic practice.

Here are a few “quick wins” and examples of how equipment can help. I think that the humble bedstick (bed lever) is probably the single most useful aid for a person with Parkinson’s. As Parkinson’s is unilateral at onset, trunk rotation is difficult and many people develop rigidity and akinesia at night. A bedstick and a firm mattress (not memory foam) can help, perhaps coupled with an easymove bottom sheet. Check whether the person experiences REM sleep behaviour disorder (vivid dreams with limb movement), it’s not a complete contraindication, but something to consider.

When providing toilet equipment, be aware that constipation is an endemic problem. If a toilet seat is raised check that the person can still get into a good position for defecation. E.g. by raising their feet on a plastic stool so they achieve Rodin’s “thinker” pose.

Dyskinesia can be very disabling and contribute to falls. It is often resistant to treatment because the options are either to reduce Parkinson’s medications which can result in severe off periods, or to add Amantadine which often isn’t tolerated (dry mouth, nausea and confusion). Specialist seating, with inbuilt pressure care, lateral support and tilt in space, is invaluable.

During your observations you may have noticed that for many people with Parkinson’s their gait is more fluid on the stairs compared to level ground, where they may have gait initiation difficulty or freezing of gait. This is because each step of the stairs acts as a “cue”. Cueing techniques are very helpful to people with Parkinson’s.

Parkinson’s is the second most common neurological disorder after Alzheimer’s Disease. Worldwide there are about ten million people with IPD and 400 of them live in the Milton Keynes area. The condition is becoming more prevalent as we age and perhaps because of environmental pollutants. The role of the OT in enabling people with Parkinson’s to live well is invaluable. You are welcome to contact me for information and advice about your patients.