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--------- Forwarded message ---------- From: Ivan M Suzman <[log in to unmask]> To: [log in to unmask] Date: Tue, 17 Jul 2001 21:51:49 -0400 Subject: MJFoxFoundation has Michael Claeys, Maine homecare decision: Janet Paterson Message-ID: <[log in to unmask]> Hello, friends....I'm finally back , after re-gaining 25 pounds since my March 21st abdominal surgery , and am still improving. I have been able to balance on a step-ladder for painting, and am amazed and grateful at my progress . I am active in my yard and have a prize crop of black raspberries this year. Our friend from PAN, Michael Claeys ,is the Research Policy coordinator at the MJFF in New York City. He can be reached at the 212 area code phone number for the MJFF, which is in the AT&T long distance directory. Donations for the Michael J. Fox Foundation for Parkinson's Research are directed, I am fairly certain, to the East Coast, at a Times Square , New York, P O Box, and not to an old PAN address from Santa Rosa, California. Secondly, I entered a Bible study support group six weeks ago here in Portland. This is helping me to develop patience and spiritual strength. I need this, as I am now awaiting a decision on my new appeal to retain at-home attendatnt services, which the Bureau of Elder and Adult Services again wishes to cut to 5 hours from 13 hours per day. The last day of testimony was June 28th. The resulting, immense, 600 page transcript has recorded my appeal. I have had the opportunity to present my neurologist, several friends, and several personal care attendants as witnesses, as well as myself. We have defined dyskinesia, on-periods, off=periods, freezing episodes, discussed the medications, the night-time care, the differences between the impact of being a PWP with a later-life onset history, as opposed to a much earlier onset Parkinson's , and many issues that arise when a person who is active in the community is being assessed against a baseline of sedentary, nursing-home patients. Although a dour and hostile attorney tried to break me on cross-examination, she did NOT succeed. My attorney , Helen Bailey of the (federally-funded) DIsabiiity Rights Center, has done a superb job with closing arguments, and a decision is expected by the middle of August from Kevin Concannon, the Maine Commissioner of Human Services. If I lose, I will have to go to court against the Maine authorities. How ironic and sad when Maine could spend its limited monies to enhance my work for all PWP's, instead of wasting precious energy on attacking my credibility. Hopefully the light will prevail. Letters to Commissioner Concannon may show that I am not alone and that people are watching for the outcome of my now nine-month long appeal. I would respectfully request that Janet Paterson not post and re-post so many articles. it clogs my disc space and makes it hard to receive and enjoy the PIEN messages that I am searching for. Sincerely, Ivan Suzman 51-39-36 16th year patient since symptoms first seen and still SMILING :-) to all of you! ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn