This was a question put by one of our members
recently. Not as my grandchildren (4 & 5 years) have been asking
- "But where has Jack gone?" but rather - when I find I am not
managing any more - what happens now??
Well your GP may need to be involved but a starting point for experienced polio advice might be to ring us at the Polio Network for either a phone consult or an appointment to see Tessa at our Polio Clinic. Often simple measures may be all that is needed.
LATE EFFECTS of DISABILITY CLINIC at RPH Shenton Park Campus may be the next step if you have increasing weakness, pain and fatigue (that has not been completely fixed by taking carnitine, magnesium, B6, manganese etc as advised by Tessa - depending on your problem.) You need a detailed referral from your GP to see Dr Dade Fletcher at this Clinic. There may be a 2-4 month waiting time and you will get a thorough muscle assessment by Jega, the neuro physio, Nikki, the orthopaedic physio and 'your' exercise plan.
ORTHOTIC DEPT RPH Shenton Park Campus - may be advised if you are having problems with walking, a limp, back, leg or foot pain or problems with shoes. A referral from your GP to either Dr Dade Fletcher or Dr George Carter is needed and there is again around a 2 month waiting time.
If ORTHOPAEDIC SURGERY is being considered (eg hip or knee replacement) a neurological assessment by a neurologist experienced in post polio will give a good second opinion as to how well your polio muscles will recover from the surgery - Dr Ross Goodheart has experience here - or can be seen to eliminate other neurological complications or support a PPS diagnosis (eg for Centrelink applications). GP referral is needed. Wait time about 4 months.
SLEEP DISORDER CLINIC for sleep apnoea, a Respiratory or Swallowing Assessment at Sir Charles Gairdner may be on your list if indicated by these problems. You may need a night-time machine to keep your airways open while you sleep, allowing you to breath properly. This can help you with fatigue and pain.
EQUIPMENT for the HOME may entail a visit to the INDEPENDENT LIVING CENTRE or a Home Assessment from your local hospital OT Dept may need to be organised by your GP.
CARELINK - a chat on this 1800 number may give you clues as to what help is available in your area. A call to
ACAT (Aged Care Assessment Teams)
A team of health professionals will assess your ability to continue living independently with assistive services or help to arrange short-term respite - or hostel or nursing home care options. You can be reassessed at any time if your requirements change. Referral is thru your local GP or hospital.
SILVER CHAIN - Home Help, showering assistance and post-op nursing care can be organised by your GP or Hospital but it is advisable to have this set up ahead of time as polios often have unique needs due to their previous disability. Silver Chain has some loan equipment but local hospital OT Dept may be better option post surgery and for long term need.
VOLUNTEER TASKFORCE and PEOPLE WHO CARE or PARA QUAD GARDENING
These groups can provide people to help with work around the home that has got beyond you. There will be a fee involved.
Residential care or Respite is available through the QUAD CENTRE at Shenton Park, particularly for our wheelchair and more disabled polios and has experience with the needs of polio survivors. They have always had a few polios in residence.
SPINAL UNIT - RPH - Shenton Park
Again experienced with wheelchair-bound polios. Try to get referred here if hospitalisation needed for re-evaluation or extended post-op care and physio needed. Otherwise can get physios at other hospitals to consult with Jega if needed.
BACK - UP from experienced professionals like physios Jega and Brenda or Dr John Niblett may be needed or your doctors and hospital staff can ring Tessa - your Polio RN at our Polio Clinic
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