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^^^^^^WARM GREETINGS FROM^^^^^^^^^^ Ivan Suzman 48/12 [log in to unmask] Portland, Maine land of lighthouses 68 deg. F *********************************************************** On Fri, 7 Aug 1998 12:32:26 -0400 Jed Blue <[log in to unmask]> writes: >People out there, (SNIP) >Actually, I like the idea of the Hourglass. >Hilary Blue Dear Listfriends, Good news and bad news from a 12th--year PD survivor. Thanks to more Tasmar, summer heat, and more activity, I am a little better again...temporarily...... I have upped my Tasmar to 250 mg /24-hour day, and my Sinemet is staying at 800 mg/24-hr. day.. I have to split the 100 mg Tasmar tablets with a pill-cutter, into halves and quarter-tablets. The manufacturers ought to consider making lower dose pills, so that we pill-cutters are able to get uniform 25 mg and 50 mg doses. I stopped NADH-no money to buy it-and a public thank you to Bruce Anderson, who sent me a 90-day supply last winter.. It helps, but it is way too expensive. I've been watering and pollinating my tomatoes. They are slowly emerging from the golf-ball stage to something larger, and more tomato-shaped. I have planted and watered 15 new tiger lilies. I have finally re-painted the entire back deck, stairs and wheelchair ramp! But I am still exhausted from the endlessly-tiring caregiver search. Right now, at least I'm not despondent. Like Jacob, I want a cure NOW...a friend took me to the movies last night- Horse Whisperers. When Stacy broke down crying and her mom hugged her, after she told her mom that, with her amputated leg and prosthesis, noone would EVER find her to be desirable, I started BAWLING in my theater seat, right in front of everyone. I felt just like Stacy did. I just lost it-tears tumbled right down my face. This caught me completely unprepared-I finally wiped my eyes on a bandana stuck away in my back pocket. My glasses steamed up, I was sobbing uncontrollably. I was hoping Robert Redford had a tremor and would join our fight against PD! Crazy, unfair thoughts. I was hoping OPRAH would invite me on her show before I am too worn out to help our cause. Sometimes I feel like only a saint would be interested in being around me--I have been left by friends and relatives because of PD. I have to endure MANY hours alone, including off-states and dyskinesias. The world of worshipping the dollar has no time for pokie Parkinsonians like me! Sometimes, I am alone at home, and I end up trying to make sense of my life as it is, and giving up and sleeping on the sitting room floor, when noone can be found for 4 to 7 hours at a time to help me out. I start asking the what if's, like, what if I had a child? what if I lived with mfy aunt? what if I gave up my house? what if I stopped taking Sinemet, and died in a frozen state in my sleep? Why are caregivers supplied only $6.25/hour by the state of Maine?? Is this universal for personal care attendants who you don't pay yourself, due to your own low income?? I'm in my 12th year of PD. How do those of you with 10 years of PD. or more, deal with ACCEPTING PD, when you know it is getting worse and worse?? I do feel like my time is running out. And that is pretty scary. I think my PD is progressing rapidly lately- has anyone noticed how FEW of us are active on the list who have had PD 10 or more years? Ivan 48/12