Jill’s Jottings - Los Angeles


Footpath lack of ‘Cross-Overs’
First thing that hit me was ‘accessible contrasts’. I kept seeing Disability Aid shops and disability rights information describing how to lodge complaints if access was inadequate, but on the other hand I saw 50% of foot path crossovers were cliff hangers causing me (& Mary-ann) frequent anxious moments while I wheeled along the road for varying distances until I could again mount the footpath.

Richard Daggart & PPS Support Groups
I was impressed by our host Richard’s ability to fit such an active lifestyle around living with a tracheostomy & 24 hrs care services. Richard has a minivan adapted with side ramp and sliding door and a device that locks his wheelchair/portable ventilator in the front passenger position. I also learnt from Richard the difference between CPAP (continuous air pressure, so harder for weak muscles to breath out) and BiPAP (2 air pressures, 1 softer for breathing out that does not tire weak muscles so much).

Rancho Los Amigos & Orange County PPS support groups have similar issues such as the need to focus on pacing activities. ‘Choose your battles’ was a phrase I picked up. Support group members said many GPs still have no knowledge of correct PPS management, but at least they have access to two Los Angeles medical facilities skilled in PPS issues who can provide assistance and advise their GPs.

My manual W/Chair
Bringing my light weight manual w/chair was a good decision. Mary-ann is a great help pushing me around airports and visits, and the w/chair doubles as walking frame and luggage carrier. I am also experimenting with ways to minimize shoulder stress such as using my left leg to supplement wheeling, works especially well going backwards. I’ve bought a light folding ($31.00 USD) walking stick to give me two sticks for walking. Most aids in the shop seemed similar to Australian prices, but wider selection. Scooters & w/chairs seemed about 30% cheaper.

Airport staff seem more familiar with wheelchairs i.e. recognising my w/chair has removable wheels. Mary-ann wheels me to the plane, then staff stow the w/chair & return it to the plane door on arrival.

Rancho Los Amigos
This is a huge Rehabilitation facility with a wide range of assessment, treatment and mobility skills. Most impressed by their Seat Pressure Mapping which results are projected on screen. Saw a Screen Key Board that selects letters by holding the pointer over a character & can learns its user’s words. Saw a w/chair ‘joystick’ hooked to computer controls and a Voice activated computer 85% accurate for the cost of $200 USA. Ref: Wireless controls info X-10.com (Radio Shack) & Home automation Smart Home go to

Although Rancho has a ‘Model House’ which displays a range of familiar aids plus technological that controls house appliances via plug in activators to remote control functions, there does notseem to be an Aids Display such as Yooralla’s ‘Independent Living Centre’ in Melbourne.

Rancho PPS Clinic staff are Dr, Nurse, OT, PT, Orthotist, with access to i.e. Psychologist, Speech Therapist, etc. Rancho’s focus is detailed Muscle Strength testing to target useful exercise, avoid weak muscles damage from exercise and indicate function level to be achieved. Usual danger signals of ‘stop before getting tired or feeling pain’ were often referred to, likewise ‘Listen to your body’ so recovery with No Pain is achieved. Rancho prescribes home exercise programs rather than refer to local exercise program to avoid ‘trainer/therapists’ altering the exercise regime and teach Polio’s to explain their needs and avoid being put into harmful situations.

Initial assessment lasts 2 hrs. Polio/PPS diagnosis made from Asymmetrical muscle strength, what a person could do at their peak and what now, i.e. look for a pattern of illness, recovery, PPS decline. Did PT have difficulty keeping up with other children is another pointer to earlier polio infection. Pain best treated by Pacing lifestyle activities, not medication. Rancho’s PPS Guru Dr. Perry has done a lot of research on Polio walking patterns. Rancho tries to include family members to help them understand & support PPS needs. Rancho considers PPS similar to accelerated ageing, and warns that muscle contractures can start as early as 4-14 days if not treated while a Polio is confined to bed.

UCLA
UCLA is a huge medical facility that also treats PPS. The PPS clinic now describes itself as a Centre without walls because it arose after multidisciplinary team funding was removed. They have changed from in-house treatment teams to involving local medical services. To minimize local Treating Health Professionals changing UCLA’s advice, they stress the need for Individual (not Group) programs as all PPS are different & teach PPS folk to understand & explain PPS issues to others - know what they can do and what not to do.

UCLA find offering a free lunch to Medical Students to attend PPS lectures increases attendance.

Jill Pickering