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Dear List Members: For the past 8 weeks, I have been staying at my sister, Fran's, home, helping her and Alan, her significant other, make it through the day and night. Once I had pushed the "send" button on the e-mail sent minutes ago, I regretted not mentioning in the signature line, that I am also honored to be working with the Parkinson Action Network as the South Florida Congressional Coordinator; focusing on getting its message and the message of the Parkinson's community at large out in the light of day. As part of some general background information, TCCP sponsors free exercise classes at Sugar Sand Park for People with Parkinson's and their Care Partners, Mondays through Thursdays at Sugar Sand Park. We passed out fliers yesterday with the PAN website and Grass Roots Connection web site along with telephone numbers for the Florida Department of State Division of Elections for people to call for Absentee Ballots (561.276.1226) and/or to find out the locations where they can get out to vote ahead of time to avoid the lines (561.656.6200 or 1.866.868.3321). On August 9, 2004, I was asked to speak, on behalf of caregivers, at the Stem Cell Awareness Day: "Rally for Cures" an event that was co-hosted by the Genetics Policy Institute with the Miami Project to Cure Paralysis of the University of Miami. Speakers included Janet Reno, former United States Attorney General, Bernard Siegel, GPI Executive Director, Sabrin Cohen, GPI advocate and spinal cord injury patient, Alison Landes, President, Take Charge! Cure Parkinson's, Inc. (caregiver), W. Dalton Dietrich, III, Ph.D. Scientific Director, Miami Project to Cure Paralysis, Juan Dominguez Gendala, MSc, Ph.D. Diabetes Research Institute, University of Miami Again, thank you for your input on the email sent earlier and copied below: In a message dated 8/25/04 10:49:22 AM Eastern Daylight Time, Cureparkinsons writes: > Subj: Your Input on medications appreciated ... > Date: 8/25/04 10:49:22 AM Eastern Daylight Time > From: Cureparkinsons > To: [log in to unmask] > > > > Dear List Members: > > Any input on the following will be appreciated... > > My sister, Fran (51 diagnosed 5 years ago is having a great deal of > difficulty) switched from Permax to Requip because of the caution about leaky heart > valve problems with Permax. She put off starting Sinemet until agonists no > longer were adequate and has started Sinemet with small and slow increases of > dosage as she has had difficulties adjusting to medications. > > She is taking Requip 2 mg/ 3 x per day and has introduced Sinemet 1/2 of > 25/100 mg. 4 x per day, up from 1/4 of 25/100 mg. 4 x per day. Next week she > will alternate the 1/2 of 25/100 and 1/4 of 25/100 for 4 x per day and the > following week will be up to the whole tablet 25/100 mg. 4 times per day. She is > also taking 1/2 tablet of Lodysin 3 x per day, which is the carbidopa > portion of the carbidopa/levodopa, to prevent nausea. When she gets to the full > tablet dosage, she will stop taking the extra Lodysin. > > Fran is experiencing alot of rigidity, difficulty walking, problem with > balance, etc. Do you think this is because she still needs to increase the > Sinemet at least up to the whole tablet 25/100 mg. 4 times per day? Needs > assistance getting in and out of bed, getting to bathroom, getting dressed, getting > showered, eating, etc. The rigidity is a real problem and she has a great > deal of difficulty getting any decent amount of sleep at night for two > reasons... > > the rigidity and frequent urination (whether or not there is anything much > in the bladder). Again, we're banking on an optimal dosage of Sinemet > lessening the too frequent call to the restroom and the terrible rigidity. ANY > suggestions on ways to lessen the difficulties of these two challenges are > greatly appreciated. > > Fran also thinks that the Requip is part of the problem as she doesn't > recall having this much difficulty when she was taking the Permax. We know that > she has to increase the Sinemet and hoping that when she gets the dosage up > she will be feeling better. > > Also, interesting to hear that one person we know is taking Eldepryly > (Selegine) again and found it to help with her symptoms. Fran took that early on > and then stopped. Are they thinking "again" there is merit to taking that > drug and if so, what amount and when? > > Thanks for your input. > > Sincerely, > Alison Landes > Care Person on Fran's Team > Founder/ President > Take Charge! Cure Parkinson's, Inc. > 1489 W. Palmetto Park Road Suite 442 > Boca Raton, Florida 33486 > Tel: 561.620.1970 > Fax: 561.488.5726 > E-mail: [log in to unmask] > Web site: www.cureparkinsons.org > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn