Join an Amyloidosis support group, or contact others in your State who are involved with Amyloidosis. Just talking to someone who understands exactly what you are going through can ease your burden. You may be able to swap useful information too. Create your own medical record of your patient. There will be many times when you will be in a situation when there is no copy of your patients' medical history available, so you need to be assertive in forming your own medical history. You and your patient will be able to identify trends showing progress or regression. Here is an example of Jim's chart (.xls file) in Microsoft Excel. Give each doctor and specialist a copy of the BJH Guidelines (pdf file) on Amyloidosis to keep with your patient's records. Your patient has an extremely rare disease and the majority of doctors will have little or no experience with Amyloidosis. Many doctors do not know the current procedures being employed in Amyloidosis Centres, eg in the UK ,Europe, & USA. Make a list of everything you use during an in-patient stay at hospital, and keep a bag handy with these things at home. If an emergency arises at home, and your patient is suddenly taken for a stay in hospital, it is one less hassle to have to think about what they will be wanting! eg. personal radio, favourite lollies/sweets, shaver etc etc Our list (.doc file) for example, in Microsoft Word. If your patient is in a 2 or 1-bed ward in hospital, ask the nurses if you can have a folder bed or mattress, if you wish to sleep the night next to your patient. Nurses are usually very co-operative in the Oncology wards. Or bring your own bedding, with the nurses' permission. Emergency department beds are notoriously hard and uncomfortable. To make a long wait on a trolley more comfortable for your patient fold a double bed doona/duvet/quilt on the mattress, before they lie down. You will need to use your own, as they don't provide them at the hospital. We keep one in a bag ready to go, when our patient needs frequent hospital admissions whilst on chemotherapy. Apply for a pension from Centrelink: Centrelink info for Illness and Carers Pensions. Apply for a disabled sticker for your car. Criteria is usually the use of a walking stick, and forms can be obtained from your local council & certified by your local GP. If you are having trouble paying bills, apply to the Leukaemia Foundation for financial support. They support Amyloidosis as a blood disorder- but their funds are sometimes limited or unavailable. Have an Occupational Therapist (from your hospital or ask your local GP) assess your house, to offer advice if your patient has trouble with mobility. Don't hesitate to bring mobility aids into your home, as these can greatly improve the quality of life for your patient. We strongly recommend that you purchase a very light-weight wheelchair, if your patient has trouble walking, as these are much easier for you to lift into the car. Many recycled mobility aids are available through Op Shops or through schemes in major cities. There are numerous mobility support groups for Australia on the internet. Some examples are:
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Ask for a referral to a Neurologist and Rheumatologist to look into the problem of pain. Non steroidal inflammatories (NSAIDS): Brufen, Naprosyn Aspirin must be used with caution. Consult your GP. Apply menthol rubs like Dencorub externally. Hot water bottles. Diversions: Watch a funny video – your Favourite comedy etc. Laughter is the best medicine! Don't watch the news on TV for a while, or read the newspapers. Play cheerful songs on radio or tape, CD, etc. not mournful classical music or sad hymns. Try to have visitors who are cheerful, not morbid. Try to go out, even if just for a short drive to look at something beautiful eg. a sunset, or the sea, etc. so that you have something to talk about apart from your own physical problems. Many 'diversions' are free or inexpensive, and are excellent value therapeutically. Retail therapy (shopping for something that’s an 'indulgence', like chocolates, or cakes, or a nice drop of wine, perfume, etc.) Carers should consider wearing cheerful clothes - bright colours. Try not to appear to be in mourning, before your patient has died.
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