Huntingtons disease & Netti Dynamic CED

STEP 1: Clarify expectations and challenges

Focus on the expected functions:

• Both users and caregivers want focus on skin protection because the user has a stage 1 pressure sore in the buttock area.
• You want to reduce the number of repositioning and ensure a longer upright sitting position.

Read more about Huntington’s disease

STEP 2: Observe and assess the user’s situation

What do I see? When do I see it? Why do I see it?

• The user is diagnosed with Huntington's Chorea with recurring involuntary movements.
• The movement of the limbs, hip and head have been evaluated and were found to show free movements but with involuntary movements with extension movements.
• It has been found that the user throws the head and upper body backwards, pushes the pelvic forwards and hyperextends the hip, knees and feet.
• The extension of the body leads to loss of optimum seating position and causes the user to slide out of the static wheelchair. This sliding creates increased shear- and pressure forces which can be the case for the pressure ulcer stage 1, at the buttocks.
• Body measurements like height, weight, seat width, seat depth and back height have been recorded.

STEP 3: Define seating strategy and set SMART goals

Use SMART – Specific, Measurable, Acceptable, Realistic, Time

• Improve the current seating position to prevent sliding and the therefrom resulting risk for pressure ulcer.
• Stabilize and guide the flow of the involuntary movements.
• Reduce the load on the head and the neck. Check for tension and discomfort in the neck muscles after 1 month
• Allow the user to move the back and hip into extension. Reduce the peak forces at the back and check for pain relieve at the spine in 1 month.
• Extend the user's possibility to take part in everyday activities like trips and excursions to prevent the user from feeling isolated.

STEP 4: Create seating solution

How do I reach the objectives? (Wheelchair, accessories)

• It has been found that the best solution is a Netti Dynamic CED chair.
• Dynamic seat to allow the movement in the hip area.
• Dynamic back to allow movement of the upper body and to help to position and keep the user in the prior adjusted optimum seating position.
• The Dynamic seat- and back will guide the user back to the original optimum position and avoid the sliding out of the wheelchair.
• The dynamic leg supports with a reinforced aluminum foot board equipped with ankle huggers can guide the legs back in the original position.
• Extra upholstery of arm supports and leg supports to prevent the user from getting hurt during the involuntary movements.

Get to know the Netti Dynamic CED chair

STEP 5: Evaluate

Are the goals reached? Look at step 1 and step 3

Short term:

• Seating posture has been improved from the static to the dynamic wheelchair.

Long term:

• Improved skin protection through correct pelvic positioning and reduction of the risk of sliding. The user has no pressure ulcer at present.
• Seating time has increased with 1,5 hour per day.
• Mobility, secure transport possibility and participation in everyday life activities have been made possible with the dynamic wheelchair system.

Find the Netti 5 Seating Steps guide here