PSP/CBD and Mobility
Movement and balance issues in PSP and CBD are caused by the damage to the areas of the brain responsible for these processes. Movement may be noticeably slower, rigidity in the muscle occurs and sitting and standing up becomes more difficult. The gait, posture and stamina deteriorate as the disease progresses. Impulsiveness and balance issue can leads to frequent falls which can be very distressing for both carer and patient.
What can I do?
- Exercise is important. Regular short burst of exercise work best. A physiotherapist will advise on suitable exercises
- Include stretching exercises in your plan.
Why should I include stretching?
Stress builds up in the tissue, the muscles contract and become tense. Stretching works to relieve the stress. It is easy and it can be done at any time of day seated, standing or lying down.
Gentle stretching will
- increase flexibility and improve circulation
- ease lower back pain
- relax muscles and reduces stress
- increase blood flow and the supply of nutrients to the muscles
- reduce muscle soreness
- increase the range of movements in the joints which helps to improve balance
Both exercise and stretching boosts endorphins in the brain which makes you feel good and improves mood.
Muscle rigidity can cause spasms and cramps. Treatment options include massage, heat packs, muscle relaxants or Botox injections
Massage is very relaxing and releases tension in the body. Physical contact is very important to the patient and carer. Massage can bring closeness in a stressful situation without compromising the feelings of the individual’s present. Message is therapeutic.
.Other useful tips
- protective clothing – padded garment can be worn to protect vulnerable parts of the body from falls
- head gear worn to protect the head area can give more assurance for patient and the carer
- altering the weight distribution in PSP by wearing shoes with a higher or built up heel may reduce risk of falls
- technology such as: alarms, fall detectors, monitors for different rooms, sensor lights etc. all have apart to play
Eat a well balanced diet for good health and bone and muscle strength. Patients should not skip their calcium drink/tablets and it is important to take them as prescribed
Calcium is necessary for strong bones. It usually is given in combination with Vitamin D. This helps the adsorption of the Calcium.
Take plenty of fluids throughout the day.
What to do when falls occur
- talk to your doctor
- have a DEXA Scan to assess bone density and risk of fracture from falls
- get a referral to a physiotherapist
- talk to an occupational therapist who will advise on equipment and making your home a safer place
- see your local health nurse who will advise on entitlements
- see an orthoptist to check the eyes . Vertical gaze palsy in PSP makes it difficult to look down and can increase risks of trips and falls.
Following assessment you will be prescribed mobility equipment suitable for your needs. Aids and appliances for mobility are supplied free to medical card holders and if prescribed as part of an in-hospital treatment
Mobility Aids and the Patient
Having PSP/CBD means learning to live with changes in how you get about. Depending on the way the disease progresses you may start with a stick and move to a rolator and eventually a wheelchair. It can be difficult to get your head around this in the beginning. Don’t be embarrassed or afraid. You will find new freedom in the flexibility and movement with every change. These aids are not a crutch they are your weapon against this disease. You will have mobility and independence for longer.
Walking frames should be strong and weighted towards the front. Light weight Zimmer Frames are unsuitable for people with PSP. Rollator’s or wheeled frames with a brake fitted are better suited to people with PSP. Having a seat and basket attached allows you more freedom.
Wheelchairs will require changes to be made to your accommodation. Talk to your occupational therapist about the changes required.
The Irish Wheelchair Association are an invaluable source of information and support. www.iwa.ie
Things to think about and plan ahead.
- type/s of wheelchair to suit your needs
- the ability of the carer to manage the wheelchair
- the house layout and planning a new strategy for accommodating the wheelchair.
- clearing clutter, taking up rugs and mats and widening spaces
- keeping the fire guard in place
- putting in a ramp for access to the house
- choosing to have a ramp in the garden or raised beds and a patio area to sit out and potter in.
- changing from a bathroom to a wet room
- moving to the ground floor
- your transport needs
- type of transport and services available locally to accommodate wheelchair
- car adaptations