LETTERS AND SMS TO THE EDI­TOR

Isis Town and Country - - Opinion -

THIRTY Aussies a day are di­ag­nosed with Parkin­son's dis­ease. The an­nual cost to the com­mu­nity is $17 bil­lion, and 20% of the sufferers are aged un­der 50 (that’s me). Some 100,000 Aus­tralians are cur­rently liv­ing with Parkin­son’s, mak­ing it the sec­ond most com­mon neu­ro­log­i­cal dis­ease. My head has been re­cently shaved due to a deep brain stim­u­la­tion oper­a­tion a week ago. I have a smi­ley face scar just above my fore­head and an­other above my right ear. In to­tal I had 40 sta­ples, which my eight-year-old niece thought looked a lot like a tiara. I was di­ag­nosed at 45 and am now 52. At present I am a lit­tle slow but get­ting faster. My youngest daugh­ter, who is 16, can’t re­mem­ber a time when Parkin­son’s wasn’t part of our life. When I had hair, it was long and curly. On a par­tic­u­larly dif­fi­cult day when I couldn’t lift my arms to brush the knots out, I vis­ited a new hair­dresser who asked what was the prob­lem with hav­ing Parkin­son’s dis­ease. I said that it made my hair knotty. She said it didn’t sound so bad and went on cut­ting. While funny, it is an in­di­ca­tion of the lack of aware­ness of the dis­ease in our com­mu­nity. While deep brain stim­u­la­tion and any tech­no­log­i­cal ad­vances in neu­ro­science grab the pub­lic’s at­ten­tion, these are not avail­able to ev­ery­one. I was lucky to have been in top health cover and also had to pay $25,000 out-of-pocket costs. This money came from re­tire­ment sav­ings. It is not a cure, but gives me some breath­ing space so that I can de­crease the quan­tity of drugs I need to take. Parkin­son’s Qld has a staff of three who serve our state. There are no Parkin­son’s nurses (as yet) and lit­tle fund­ing for gen­eral prac­tice to sup­port Parky people. For the seven years I have lived with the dis­ease, I have been in­creas­ingly frus­trated with the lack of in­ter­est in fund­ing pri­mary health care. I have be­come less in­ter­ested in re­search for a cure and more in­ter­ested in sup­port­ing those of us who want to con­trib­ute to so­ci­ety but find it dif­fi­cult with­out even one nurse prac­ti­tioner to guide us through the maze of med­i­ca­tions and treat­ments. JULIE BURY Coonarr

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