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---------- Forwarded message ---------- Date: Thu, 7 Jan 1999 14:13:44 -0330 (NST) From: Anne Rutherford <[log in to unmask]> To: Ivan M Suzman <[log in to unmask]> Subject: final version of letter to pbs I hope it helps Anne Jan 7 1999 TO PBS NEWSHOUR FROM Anne Rutherford St John's, Newfoundland On Tuesday I called telephone number 703 998 2600 ext 2150 to let pbs know that the Ivan' story was international. The person who answered suggested that I put what I had to say into an e mail. Trusting that this was a sincere suggestion and not just a way to dispose of unwanted callers I am sending this message. Topic: The Need for Residential Options for Young Onset People with Parkinsons. (PWP) First, a few words about my background. A long time ago I was a young PWP. My first symptoms appeared when I was downhill skiing. I was not yet 40. By 1976 I was sitting in doctors' waiting rooms, looking for answers. Finally I diagnosed Parkinsons myself and told my family doctor. That was more than 20 years ago. I am pleased when people call me a Parkinson activist. When diagnosed I lived in Toronto where I developed a talent for starting awareness campaigns and newsletters. Later I moved to Newfoundland, continuing to set up support groups and exercise classes. Young PWP face a number of problems as Parkinsons tightens its grip on them. Work becomes impossible / income stops / marriages fail / children suffer / can't afford drugs / families torn apart / not allowed to drive a car / friends drift away / no place to call your home.......... the list is endless. Twelve years ago I knew a PWP who was in a similar predicament to the one Ivan Suzman finds himself in. My friend had been a successful businessman. When the business went under he could not afford the necessary drugs so he decided to dispose of his remaining assets to qualify for free drugs and assisted housing. When these arrangements were complete and he was on social assistance he could not find housing suitable for a young and active person. Ivan does have suitable housing in fact his house could be used as an example of a home designed for a PWP. But Ivan like others with long term Parkinsons should not be left alone for more than a few hours. This is because the symptoms are unpredictable they can return suddenly and without warning. Then you are stuck and I mean STUCK. So Ivan has a home but there is no one to help him live in it. Ironic isn't it. Most PWP are not fighters like Ivan or my Toronto friend. The PWP forced into residential care but most go peacefully and quietly. The fight has been knocked out of them. They know they cannot care for themselves. They know that they cannot afford round the clock helpers. They cannot speak out for themselves because they have lost the ability to speak. They can't even look sad because the Parkinson mask is expressionless. To review Why does Ivan need caregivers night and day? Ivan has taken meds for years and his condition varies from near normal to nearly immobilized . There are many thousands in this situation. Is there a real need for home care and/or residential programs for young PWP? Ivan is just the tip of the iceberg. In our 100 member support group there are a number of PWP in long term care facilities who would do better at home and there are many over-stressed spouses who would benefit from respite care. Why haven't we heard about this need? The PWP can't talk or write and don't have access to the media. They show up one by one so the numbers are not apparent. Why don't we hear from nursing home residents ? Fear mostly and sedation and being tied in a chair " for their own safety". A great deal of money is being spent on this problem but it seems to be ineffective. Surely we could do better Anne Rutherford