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08-03-2008, 08:47 PM
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#101 | ||
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In Remembrance
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Forget how to spell that expression.
PD Engineer, Your outstanding programs and cutting edge choices are becoming the status quo at UAB, and now it's acquiring partners who each provide a role? Would that be right? And it actually gets all the way to the patient. Extending its rescuing tentacles out into the actual patient community. Last part inspired by Aj's head multiplying creature....lol You are creating new standards of excellence. Go go go. paula Quote:
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paula "Time is not neutral for those who have pd or for those who will get it." |
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08-03-2008, 08:56 PM
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#102 | ||
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Junior Member
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Each ORG has a specific area where they seem to function best. I see no single ORG having the staff or ability to deal with all the needs of the PD community while still pushing for better treatments and a cure. The best solution is to have them all talking to each other and leveraging the strengths of each. Of course we have to continue to each be advocates least they forget why they exist.
The best we can hope for is some type of formal strategic alliance between them or some way to manage each ORGs best assest(s). |
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08-03-2008, 09:00 PM
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#103 | ||
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In Remembrance
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ok that sounds good...lol.
Engineers - simple, clean, precise. thanks! paula  Quote:
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paula "Time is not neutral for those who have pd or for those who will get it." |
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08-03-2008, 09:23 PM
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#104 | |||
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Senior Member
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That research at UAB is terrific. You guys are doing terrific work there.
Along those lines... I did a search on BIG Physical Therapists -- physical therapists who specialize in working with people with Parkinsons disease. I found this listing on the LSVT website. If there are none near you - look for physical therapists who specialize in treating neurological patients. I have been a "test patient" for Dr. Becky Farley when she was training other PTs in these techniques. (Sheryl has as well.) The training is remarkable and I think it would help all pwp. Now I have to get off my duff and get a script from my doctor to get this training. I'm lucky (I know) that there is a trained PT not too far from me. I need to just make myself do it! There are things we can do to help ourselves, but we have to help ourselves - at a certain point no one else can. ==== Arizona Casa Grande Mathews, Carolyn CGRMC 1800 Florence Blvd Casa Grande, AZ 520 381 6326 Flagstaff Carter, Joseph Carter Rehabilitation LLC 1800 S Milton Re, Suite 103 Flagstaff, AZ 86001 928 226 0792 Rogstad, Garett F Carter Rehabilitation 1800 S Milton Rd #103 Flagstaff, AZ 86001 928 226 0792 Thomann, P.T., Cindy S Water Works Well 4850 Yarrow Tr. Flagstaff, AZ 86001 928 699 5647 Thomann, P.T., Cindy S Flagstaff Medical Center 1200 N Beaver Flagstaff, AZ 86001 928 773 2125 Glendale Johnson-Siekmann, Elaine Mayo Arrowhead Primary Care Center 20199 North 75th Ave Glendale, AZ 85308 623 561 5252 Mesa Balbarin, Michael Banner Health Baywood Campus 6644 E Baywood Ave Mesa, AZ 85297 480 321 4240 Blau, Duene K National Neuro 2919 S Ellsworth Rd #111 Mesa, AZ 85212 480 358 6767 Phoenix Bargas, John Banner Good Samaritan CNSP Clinic 1012 E Willetta Phoenix, AZ 85006 602 239 4760 Johnson, Diane R Banner Good Samaritan Neuroscience Clinics 1012 E Willetta St Phoenix, AZ 85006 602 239 6731 Mangold, Mary Lynn SWAN Rehabilitation 1020 East Mission Ste #1 Phoenix, AZ 602 393 0520 Maruyama, Risa St Josephs Hospital & Medical Ctr, M Ali Parkinsons Ctr 350 West Thomas Road Phoenix, AZ 85013 602 406 3222 Robinson, Toba L Private Practice Phoenix, AZ 85054 602 740 8882 Sondergaard, Tove St Joseph Hospital OP 114 W Thomaas Road Phoenix, AZ 85013 602 406 4024 Prescott Connor, Susan Yavapai Regional Medical Center 930 Division Street Prescott, AZ 86301 928 771 5131 King, P. T., Helenlisle "H. L." Yavapai Regional Medical Center 930 Division Street Prescott, AZ 86301 928 771 5131 Scottsdale DeCant, Kris Scottsdale Rehabilitation Healthsouth 9630 E Shea Blvd Scottsdale, AZ 85260 480 551 5436 DeCant, Kris Desert Sky Physical Therapy 10213 N 92nd Str Ste 102 Scottsdale, AZ 85258 480 699 4867 Grady-Smith, Kathleen Scottsdale Healthcare Osborn 3134 N Civic Center Plaza Scottsdale, AZ 85251 480 882 5690 Scheub, Tom Scottsdale Healthcare 3134 N Civic Center Plaza Scottsdale, AZ 85251 480 882 6820 Sedona Nyre, Mary Elle Flagstaff Medical Ctr - Oak Creek Village Physical Therapy 6560 Highway 179 Ste 118 Sedona, AZ 86351 928 282 8428 Tucson Millage, Beth Pima Medical institute Tucson, AZ 520 326 1600 Regan, Shelley Carondelet St. Joseph's Hospital 5610 N. Baybrook Road Tucson, AZ 85741 520 820 9924 Yuma Rinholen, Anna J Yuma Rehabilitation Hospital 901 W 24th Street Yuma, AZ 85364 928 726 5000 ===== California Downey Ruckert, Elizabeth Rancho Los Amigos National Rehabilitation Center 7601 E Imperial Highway Downey, CA 90242 562 401 6847 Turnquist, Patricia Rancato Los Amigos National Rehab Center USC Downey, CA 562 401 6847 Loma Linda Wilson, Dan Loma Linda University Medical Center Loma Linda, CA 92354 909 558 4800 x 66681 Los Angeles Ginoza, Lori USC Physical Therapay Associates 1640 Marengo St HRA 102 Los Angeles, CA 90033 323 224 7070 McLean, Claire University of Southern California 1640 Marengo St HRA 102 Los Angeles, CA 90033-1036 323 224 7070 Yamada, Kimiko USC PT Associates 1640 Marengo St HRA 101 Los Angeles, CA 90033 323 224 7070 ====== Colorado Boulder Benjamin, Carol HealthLinks Clinic 3434 47th St Ste 105 Boulder, CO 80301 303 938 3770 Turvey, Trudy A Healthlinks Clinic 3434 47th St. Suite 105 Boulder, CO 80301 303 443 1937 Greeley Seeger, Jutta North Colorado Medical Center Outpatient Rehab Center 1801 16th Street Greeley, CO 80631 970 3506793 ===== Michigan Detroit Cooper, Brian St John Hospital & Medical Center 22101 Maross Detroit, MI 48236 313 343 3744 Reale, Salvatore St John Hospital & Medical Center 22101 Moross Rd Detroit, MI 48236 313 343 3744 ====== Minnesota Bemidji Prestegard, Corinna Peak Performance - North Country Health Services 1300 Ann St Bemidji, MN 56601 218 333 5898 Golden Valley Walde-Douglas, Maria Struther's Parkinson's Ctr/Park niccolet Methodist Hospital 6701 Country Club Drive Golden Valley, MN 55427 952 993 5495 Minneapolis Delcarmen, Jay Fairview Balance Ctr - U of MN Medical Center 2512 South 7th St Minneapolis, MN 55454 612 273 6224 New Jersey West Orange King, David C Kessler Institute for Rehablitation 1199 Pleasant Valley Way West Orange, NJ 07052 973 414 4755 ====== Nevada Reno WILSON, P.T., Sandra The Continuum 3700 Grant Dr Ste H Reno, NV 89509 775 829 4700 ===== New York Fort Jefferson Reed, Susan St charles Hospital 200 Belle Terre Road Fort Jefferson, NY 631 474 6223 New York Edgar, Heather New York Presbyterian Hospital - Columbia Campus 177 Fort Washington Ave New York, NY 10032 212 305 7818 Laviano, Christine New York Presbyterian Hospital - Columbia U. Med Ctr 177 Fort Washington avenue New York, NY 10032 212 309 7818 Port Jefferson Buraczewski, Christine St Charles Hospital 200 Beile Road Port Jefferson, NY 11776 631 474 6249 Stony Brook Buraczewski, Christine North Island Physical Therapy Route 347 Stony Brook, NY 631 751 7988 ===== Ohio Columbus Castelli, Barbara Wesley Glen 5155 N High Street Columbus, OH 614 846 2106 Worthington Castelli, Barbara Private Practice 370 Tucker Dr Worthington, OH 43085 614 746 8896 ===== Pennsylvania Allentown Falmarin, Hael Marie M. Good Shepherd Rehab 850 South 5th Street Allentown, PA 18103 610 776 3247 Golden, Sue Good Shepherd Rehabilitation Hospital 850 South 5th St Allentown, PA 610 778 9316 Philadelphia Cianci, Heather The Dan Aaron Parkinson's Rehab Center 330 South 9th St., 1st Floor Philadelphia, PA 19107 215 829 7275 Robertson Roxberry, Christine Pennsylvania Hospital - Don Aaron Parkinson Rehab Ctr 330 S 9th St First Floor Philadelphia, PA 19107 215 829 7275 or 7767 ===== Tennessee Nashville Lehman, David A Tennessee State University Physical Therapy Department Nashville, TN 37221 615 963 5946 or 904 501 7737 ===== Texas San Antonio Rodriguez, Melinda A Access Quality Therapy Services 5368 Fredericksburg Rd Suite 200 San Antonio, TX 78229 210 349 0096 ===== Utah St George Gillespie, Scott Dixie Regional Medical Center 1380 East Medical Center Dr Ste 3400 St George, UT 84790 435 251 2250
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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| "Thanks for this!" says: | paula_w (08-03-2008) |
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08-04-2008, 03:09 AM
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#105 | |||
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Senior Member
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http://online.wsj.com/article/SB121727953947391015.html
An Entrepreneur Stricken With Cancer Sets Up Firm To Develop 'Virtual' Biotechs By AMY DOCKSER MARCUS July 29, 2008; Page D1 Jay M. Tenenbaum became a multimillionaire in the Internet boom of the late 1990s. But it wasn't until he was diagnosed with a lethal cancer that he found his calling as an Internet entrepreneur. Partnering for a Cure: Patients with less common diseases often find that they need to get involved with the effort to find new therapies. WSJ's Amy Dockser Marcus talks to CollabRx founder Marty Tenenbaum and COO Jonathan Jacoby about the challenges patients face.Dr. Tenenbaum learned in 1998 that he had melanoma, the most serious kind of skin cancer. He underwent surgery and took an experimental vaccine for a year. Then, nearly five years ago, the cancer returned, having spread to his liver. "That's when I started looking at my mortality seriously," says the 65-year-old from Portola Valley, Calif. Frustrated with his treatment options, Dr. Tenenbaum began investigating other potential therapies. He found dozens of patient-advocacy organizations dedicated to melanoma that raised money and supported scientific research. They "all had good ideas," he says, "but no one had put the different pieces together in the right way that would let them make progress in finding a drug in the lifetime of a patient." So he tapped his own Internet savvy -- and his connections -- to create a company aimed at helping patients develop new therapies faster and cheaper for less common diseases, like melanoma, that often don't attract major pharmaceutical company research funding. He set up his new company, called CollabRx, with $2 million he had available and is trying to raise $3 million more from family, friends and private investors.... ...Dr. Tenenbaum says patients can get started on a project with as little as $50,000 to $100,000. Sums like that, for example, could fund the creation of a molecular profile of a tumor to try to predict what combination of already approved drugs might be effective. If results proved promising, more money could be raised to set up a full-blown virtual biotech -- with a budget in the millions of dollars -- that might test cocktails of therapies in animal models and try grouping patients into subtypes to better tailor treatments for them, among other projects... ...(continued) __________________
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In the last analysis, we see only what we are ready to see, what we have been taught to see. We eliminate and ignore everything that is not a part of our prejudices. ~ Jean-Martin Charcot The future is already here — it's just not very evenly distributed. William Gibson |
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| "Thanks for this!" says: | paula_w (08-04-2008) |
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08-04-2008, 07:09 AM
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#106 | ||
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Junior Member
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Quote:
Sheryl and Jean -- I agree completely. There are some techniques for doing this -- literally. If anyone else is ready to consider that option, let me know and I can share some things that have worked for me and others on other issues. BTW, Sheryl -- in the next 5 months or so, my book "Life With A Battery-Operated Brain: A Consumer Guide to Deep Brain Stimulation for Parkinson Disease, Essential Tremor and Dystonia" will be published. It answers those questions and more. I'll keep you posted on the exact release date. Jackie |
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08-04-2008, 07:14 AM
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#107 | |||
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Magnate
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Many of you on this thread...Paula, Greg, AJ, etc....know that a single entitiy org is NOT going to happen. They tried to come to an agreement yearts ago...partly at the request of PWPs to join together...and each would not let go of their "personal" agenda/mission. They also could not find a joint name for the new single entity org.
So, this becomes a mute point. At the very very bottom of Page 2, I said, "Jean said, 'Many of us responding to this thread have had an occasional seat at the table. Some have attended meetings. Some are part of patient advisory boards.' But is that attendance honestly heard or is the attendance for show; e.g. to make the org look like they care about the PWP voice? (And I don't include PAN in this problem.) Are the views and words spoken by the attendee taken seriously. A couple of years ago, one of those attendee indicated in Jean statement said to me , 'I wonder sometimes if there is a board meeting before the board meeting I attend.' These words have haunted me and stayed with me every since. They were made by someone who has been involved is mega ways in our PD community." For anyone who does sit on a Board or other org table, how is this working for YOU and all of us? If the org don't take those voices which they have choosen to add at this moment in time to their tables, how will they take to a grassroots org? Will they take it seriously? Then there is a bigger problem... Starting a new grassroots organization will have the same healthy/sick problem. Even Jackie/jakiech saw this when stating: "I don't think there can ever be a PD org comprised solely of Parkies (sorry if that term offends anyone) and care partners. Our lives are simply too chaotic for us to do it alone, and let's face it -- this is a progressive disease." The Parkinson Pipeline Project already (as a Core Member, I can speak on this topic) has the problem of who will continue on. The membership gets sicker and sicker as each year passes (eight/nine years now) and to date no one has come along to take over the reigns when the time comes that the project needs to be handed over to someone healthier. Carey said, and I agree, "At some point aren't 'they' counting on our lack of energy to remain divided and mute?" Let us NOT allow "them" to cause us to yoller "Uncle." Our backs may be to the wall, but we do have a voice.
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You're alive. Do something. The directive in life, the moral imperative was so uncomplicated. It could be expressed in single words, not complete sentences. It sounded like this: Look. Listen. Choose. Act. ~~Barbara Hall I long to accomplish a great and noble tasks, but it is my chief duty to accomplish humble tasks as though they were great and noble. The world is moved along, not only by the mighty shoves of its heroes, but also by the aggregate of the tiny pushes of each honest worker. ~~Helen Keller Last edited by Stitcher; 08-04-2008 at 08:51 AM. |
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08-04-2008, 07:20 AM
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#108 | |||
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Magnate
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Education at Medical Schools and Nursing Schools regarding quality of life and hospitalization?
Jean has already made a tiny dent in this area in Arizona. Would a national PD education program help US? I too have been a test patient for much of Dr. Shulman's QofL research, her primary research focus.
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You're alive. Do something. The directive in life, the moral imperative was so uncomplicated. It could be expressed in single words, not complete sentences. It sounded like this: Look. Listen. Choose. Act. ~~Barbara Hall I long to accomplish a great and noble tasks, but it is my chief duty to accomplish humble tasks as though they were great and noble. The world is moved along, not only by the mighty shoves of its heroes, but also by the aggregate of the tiny pushes of each honest worker. ~~Helen Keller |
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08-04-2008, 07:39 AM
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#109 | ||
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Junior Member
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What if we were to come up with two lists of criteria (one for research, one for care) that showed commitment to involving patients or serving the needs of patients, as determined by patients. Sort of like a "union label" (remember the commercials? Look for the union label!) Assuming that we could put those criteria together, it has carrot-and-stick potential. If anyone qualified, we could give them a certificate and do a press conference. If we were so inclined, we could have a media field day by sharing a list or report card of which orgs/projects DIDN"T qualify (that is always tricky and not a good first move). We could launch this effort in April for PD Awareness Month. (In my opinion, that month shouldn't be devoted solely to telling people is, but about what people with PD want and need). I just woke up an hour ago so these suggestions aren't being filtered all that well, but I wanted to throw them out there before i lost them! Off to Atlanta tonight for YOPN (we're going a couple of days early) Hope to see many of you there and continue these conversations. JHC |
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08-04-2008, 09:42 AM
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#110 | ||
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In Remembrance
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I like these ideas Jackie. Rating the orgs isn't something I feel qualified to do, but somehow publishing the actual results that have made it to the patients, perhaps on a timeline to show the rate of progress, could be considered. Just the facts, no judgement.
To the orgs reading these comments, I would strongly keep in mind that this comes, not from the smiling faces you see with all the energy and good will pwps can muster up at conferences, but from the people sitting at home, many alone, who can't make it off the chair right now without crawling or suffering pain. These comments are coming from people who can barely type, whose shoulders are locked, whose mouths are caved in, who can't eat and have to worry about providing themselves with proper nutrition when they don't want to walk to the kitchen. From those who are lonely, who have nightmares, and then read about medical researchers paid to get industry off the hook when they make mistakes. From those who can't afford their meds. And sometimes we do wonder who the orgs really serve. Just as we wonder who anyone, with large amounts of money, really serve when we are not seeing results. I see the suggestions leaning toward looking at what orgs have done to diectly benefit patients. This can be a positive thing, but even the smell of patronizing [oops wrong word we have no smell] - let's say even a hint - will be detected by the more advanced pwps. We make every attempt not to look desperate - but nevertheless - the needs are numerous and BS detectors are fine tuned. Throw in paranoia and control freaks and it becomes apparent why this thread is overdue and should be productive - if there are no me's, just we's. paula Quote:
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paula "Time is not neutral for those who have pd or for those who will get it." |
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