DON ANDERSON SS disability payments are difficult if you dont have the certain words or definitions they are looking for. I have a guideline folder on just how to apply, what to say etc etc. It worked for me and ive given the info to others. The info came from the Parkinsons Action Network in Washington. If you would like a copy of this contact me at 904 553-4627 or email at [log in to unmask] and i'll be glad to send you a copy.It really helped me. I was denied on my 1st appl. but my second try went thru easily. Good luck Don Rob ---------- From: Parkinson's Information Exchange on behalf of Automatic digest processor Sent: Friday, March 14, 1997 8:19 AM To: Recipients of PARKINSN digests Subject: PARKINSN Digest - 13 Mar 1997 to 14 Mar 1997 - Special issue There are 16 messages totalling 922 lines in this issue. Topics in this special issue: 1. Silverman tape 2. virus warning: Fwd: Read carefully (fwd) 3. PWP Employment 4. (LONG) trouble getting approved for disability status - help yhelp ayudar me 5. Udall Bill: Thanks For Helping Convince Sen. D'Amato 6. Can't keep eyes open 7. PENPALS VIRUS HOAX 8. Request for info on hot feet 9. Brain News - Cell Programming Can Now Be Directed 10. PD, ALS and MSA 11. Symmetrel/sex change/'improper' meds 12. Rates of illness in different populations 13. just learning 14. Udall: General Plan & NJ Advocates 15. Introducing myself 16. Udall Re: WE HAVE A PLAN ! ---------------------------------------------------------------------- Date: Fri, 14 Mar 1997 00:46:37 -0500 From: "B.Bruce Anderson" <[log in to unmask]> Subject: Silverman tape I haven't been able to find a Lee Silverman PD Speech Therapist except for one 65 miles away. Has anyone here had any success with a plain old garden variety speech therapist? If so, is there anything in paticular you think I should ask about when I talk to her/him, other than have you had PWPs as patients? I would appreciate any input. BTW, I was quite disappointed in the Lee Silverman video. For $70, I think it was, it was far to short -- about 15 minutes. The process seemed promising, but the price was unfair for what was delivered. ------------------------------ Date: Thu, 13 Mar 1997 22:52:40 -0500 From: Barbara Mallut <[log in to unmask]> Subject: Re: virus warning: Fwd: Read carefully (fwd) Maggie's right, Bill.... There are no "email virus'," however, there CAN be attachments added to an email which can pass on a virus IF executed. I work for Microsoft, and following is the latest virus warnings they sent to our staff. Barb Mallut [log in to unmask] ------------------------------------------------------------------ New Virus Generates Random E-mail by Yardena Arar, PC World (February 21, 1997) -- Microsoft Word and MS Mail users, beware. The latest twist in computer viruses is one that spreads itself by sending e-mail randomly to people on a user's mailing list--along with an infected document. Because any active Word document can be sent, the virus could transmit confidential information as well as the infection itself. And because the e-mail typically arrives from a friend or associate, with the subject line "You've Got to Read This," unsuspecting recipients are likely to click on the Word attachment--thereby infecting their copy of Word and starting the cycle all over again, said officials at McAfee Associates, specialists in antivirus software. McAfee disclosed details about the so-called ShareFun virus after it was reported by an unnamed corporate client earlier this week. A new, prerelease version of McAfee's VirusScan--available for download at McAfee's Web site--can identify and purge the virus. Like the highly publicized Concept virus that infects Microsoft Word documents, the ShareFun virus is written in the macro language used by Word 7 and earlier versions. Also like Concept, it typically travels as an infected Word document attached to e-mail. It is activated when the recipient clicks on the attachment, and from then on infects every Word document created or edited by the user. The difference is that one out of every four times the virus is activated (by editing a Word document), it will seek out MS Mail on the user's machine, choose three names from the mailing list, and send each of them e-mail with a copy of the active Word document. If MS Mail is not present on the user's machine, the virus does not generate e-mail, but it still can be transmitted by infected Word documents sent in any e-mail program. Microsoft Office Group product manager Tom Williams noted that the virus does not affect Microsoft Exchange or Word 97, which uses a different macro language from Word 7. Jimmy Kuo, director of antivirus research at McAfee Associates, said that while he's seen an entire corporate network paralyzed by an e-mail generating virus, ShareFun's threat has more to do with sending sensitive documents to the wrong people. "It's more the situation of confidential information and documents getting out," Kuo said. Williams said users can minimize the dangers of ShareFun and other viruses by observing a few common-sense basics. "The ways you need to protect yourself haven't changed," he said. "Be careful when you open attachments--make sure you know whom it came from and why they sent it. Use tools (available at Microsoft's site) to scan Word, and make sure you install a National Computer Security Association-certified antivirus application." ---------- From: Parkinson's Information Exchange on behalf of Maggie Heeger Sent: Thursday, March 13, 1997 4:29 PM To: Multiple recipients of list PARKINSN Subject: Re: virus warning: Fwd: Read carefully (fwd) Bill Rogers wrote: > > A good reliable friend of mine sent this message to me today > March 13th so am sending it on to you to safeguard your > equipment just in case you get one of the messages. > (snipped the rest) This may be a good reliable friend, but your friend was taken in by a scam. There's no way to get a virus from email...it has to be an ------------------------------ Date: Fri, 14 Mar 1997 03:22:04 -0500 From: Charles Countryman <[log in to unmask]> Subject: PWP Employment I recognize that this statement has no practical value to those PWP who are dealing with employment difficulties. I know, because I've had a few myself and I have helped other disabled workers. But I cann't keep my MAC still! As a local labor union shop steward, I found the remarks from some at management level to be just about what I would expect. Actually when managers talk about P&L statements and workers taking advantage, I wonder if they seriously consider what side of the equation they really stand on. I think that they are too quick in assuming their high and important position (Despite what they may claim to be the "real world.") I am very happy that things have generally improved in labor-management relations since my late grandfather's days. I am also fully aware that those things that help ordinary people deal with major difficulties in life, such as medical insurance, Social Security, disability insurance, and more recently the ADA, came about because ordinary people insisted on their God given rights, not the virtues of management. When my grandfather was injured in an industrial accident in the mid 1920's, I understand that the only thing available for him and his family was his fellow workers "passing the hat." I'm very thankful that people disabled before me and others concerned about the humanity God has given us (including the many managers who have more productive things to do than be mesmerized by P&L) have given me as a shop steward a wonderful law like the ADA. A law very useful in making life better for people and life more difficult for those management types overly engrossed in profit and loss and who assume that workers as a general rule are taking advantage. Charley Countryman (still making life difficult for some managers at 46/6) [log in to unmask] ------------------------------ Date: Fri, 14 Mar 1997 04:33:41 -0500 From: [log in to unmask] Subject: (LONG) trouble getting approved for disability status - help yhelp ayudar me This is a long post, Unless it interests you, pass it by. Sorry for the length, Thx, the Ratman Tribe of Parkinsonians.... I am having a very difficult time with the SS disability approval process. I left my job last April, filled out the appropriate Long Term Disability insurance carrier forms to my company's LTD carrier's liking, had my neurologist sign off on them and got approved for LTD. After the 4th or 5th month the insurance company "encouraged" me to seek disability status from Social Security so the govt would pick up part of the costs. Well I filled out the forms and then took all the info I had submitted to the LTD carrier and cut and pasted it to fit the format the SS board and our State's Dept of Econ Security wanted. Then, I waited. Eventually, their reply came back stating my request had been denied. Talk about giving water to a drowning man. I felt abandoned; I felt like I was rapidly losing control of my life. At this point, the gist of their reply seemed to hinge on the following mantra >>> we have reviewed your medical record and it shows you have received treatment for your condition and that your condition does limit your ability to work. It does show that you may no longer be capable of performing work such as you have done in the past. However, based on your age, education and past work experience, we conclude that your are still able of performing other work which requries less mental or physical effort. <<< Okay, round 2. I hit up our own John "the scribe" Cottingham for some archival information on what the govt is looking for. To be able to outfight your opponent in such verbal jungle warfare ... you have to think enemy, sleep enemy, eat enemy, walk enemy, be enemy. I tried to take the information I provided previously and shape it more in the way that (I thought) showed my limiting factors and problems caused by my disease. I also asked my neurologist, a excellent and well respected doctor who holds a position in the national NPF organization, to write a letter describing the symptoms I had, the problems my Parkinson's caused me, why I was essentially not able to go the distance anymore. Granted, I have my good periods, but I also have my bad periods and net/net the confusion and exhaustion I experience make it too unpredictable and difficult for me to hold down a regular job anymore.. Now, almost a year after I left work, my appeal comes back denied. I am between a rock and a hard place. At the end of the year's time since I was actively working, my company formally terminates me with all rights and privileges thereto appertaining (in other words... take a walk) . I become a ward of their LTD carrier and am offered continuing health insurance if I pay the group rate myself... of course, all this is also contingent upon my being approved for SS disability benefits. If this approval is denied, I have no idea what happens. What am I doing wrong? What is wrong with the system? I thought the purpose was to provide a safety net and protect the worker. Instead I feel like their goal is to humble and humiliate. After being a computer systems analyst for a number of years it now appears the govt's intent is for me to rachet my income down to match my impaired and continually declining abilities until some dismal level is reached at which I am a drooling zombie incapable of making change. Then upon meeting their criteria I can be cashiered out of the system at 60% of a drooling zombie's salary. Well, as the jazzman Les McCann sings "Compared to what?!?" What the hell kind of a system is this? According to SS, my next appeal is a court process. I think I am now faced with procuring the services of a Disability process consultant and/or a Disability lawer (probably both). My questions: 1) have any of you out there had to go this route? 2) what are the chances of success as such appeals escalate? (ie. does it become harder and harder to win based on their recognition that you have been denied previously?) 3) does anyone have any good and hopefully tested suggestions on how to make this process work? If you deem your information on the above topic and the topic itself worth group bandwidth, then fire away. Otherwise would those who think they can help me please send their responses off line and directly to me? I would appreciate all candid remarks and suggestions you can make. If due to circumstances you wish your information or suggestions to remain private or your identity anonymous I will gladly respect your wishes. I realize that while this is a subject of interest to almost all of us on this list it is also a very sensitive issue. I can still joke about it because I usually joke about anything whether that is a good course of action or not but time is running out and I am in a big, big jam.. Thanks, Don Anderson ([log in to unmask]) ------------------------------ Date: Fri, 14 Mar 1997 05:54:51 -0500 From: Dale Severance join list <[log in to unmask]> Subject: Re: Udall Bill: Thanks For Helping Convince Sen. D'Amato Hi Bruce: I expect to attend his speach to the Syracuse Chamber of Commerce which has now been rescheduled to March 26, 1997. If as anticipated he has a question and answer period I will publically thank him for his cosponsership on behalf of the estimated 108,000 New Yorkers with PD. Say Hello to Lupe and the rest of the Pan Handlers Committee. Lost in the hinterlands and Miss NYCity. Dale Severance Syracuse, NY. [log in to unmask] com. ------------------------------ Date: Thu, 13 Mar 1997 15:36:28 -0500 From: Joao Paulo Carvalho <[log in to unmask]> Subject: Re: Can't keep eyes open Direct Imagination wrote: > > Hi again. My father has developed a problem with keeping his eyes open. For > He was having problems with hallucinations, so his his sinemat was cut back. > He now has problems keeping his eyes open at times. Is anyone familiar with > this, and do they have any suggestions? Thanks. Stepehn Hubbard > > Patient > Ray (Father) Age 73, PD 15 years Say,he takes what other meds beyond Sinomet ? REgards, -- +----| Joao Paulo de Carvalho |------ + | [log in to unmask] | +--------| Salvador-Bahia-Brazil |------+ ------------------------------ Date: Fri, 14 Mar 1997 07:06:21 -0500 From: Cyril Gray <[log in to unmask]> Subject: PENPALS VIRUS HOAX Bill Rogers has posted a warning about PENPALS VIRUS. I am sure he meant no harm and I do not want to detract from the importance of this Listserver by getting a thread about this going but this is truly OLD NEWS and is a total hoax. Spreading this is akin to shouting "FIRE" in a theatre. That's just what is intended in the first place. To reassure everyone who may now be concerned, I quote from: http://ciac.llnl.gov/ciac/CIACHoaxes.html# PENPAL GREETINGS! Warning Hoax The PENPAL GREETINGS! Hoax shown below appears to be an attempt to kill an e-mail chain letter by claiming that it is a self starting Trojan that destroys your hard drive and then sends copies of itself to everyone whose address in your mailbox. Reading an e-mail message does not run it nor does it run any attachments, so this Trojan must be self starting. Aside from the fact that a program cannot start itself, the Trojan would also have to know about every different kind of e-mail program to be able to forward copies of itself to other people. This warning is totally a hoax. To satisfy yourself go to:http://ciac.llnl.gov/ciac/CIACHoaxes.html#deeyeneda here is an excerpt: PENPAL GREETINGS! Warning Hoax The PENPAL GREETINGS! Hoax shown below appears to be an attempt to kill an e-mail chain letter by claiming that it is a self starting Trojan that destroys your hard drive and then sends copies of itself to everyone whose address in your mailbox. Reading an e-mail message does not run it nor does it run any attachments, so this Trojan must be self starting. Aside from the fact that a program cannot start itself, the Trojan would also have to know about every different kind of e-mail program to be able to forward copies of itself to other people. This warning is totally a hoax. If you receive an unvalidated warning, don't pass it to all your friends, pass it to your computer security manager to validate first. Sorry Bill, this had to be said! C.W. Gray ------------------------------ Date: Fri, 14 Mar 1997 07:11:32 -0500 From: Susan Stessin <[log in to unmask]> Subject: Request for info on hot feet My dad keeps telling me that his feet are so hot. His Dr. ignored him when he told him about it. He fears it is somethng serious and I wondered if anyone has had that problem. Thank Sincercerily Susan for Normam 72/12 ------------------------------ Date: Fri, 14 Mar 1997 07:35:54 -0500 From: janet paterson <[log in to unmask]> Subject: Brain News - Cell Programming Can Now Be Directed hello all here's some interesting news more than interesting potential i wonder if we'll look in the archives in five years and laugh your parkie sister in another island paradise janet ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~=20 > Cloning Expert Tells NIH That Cell Programming Can Now Be > Directed >=20 > WESTPORT, Mar 14 (Reuters) - Leading with a comment that > cloning research has been a "team game," Dr. Ian Wilmut of > The Roslin Institute in Edinburgh, Scotland, described for > attendees at an NIH seminar his technique of nuclear > transfer that produced Dolly, the cloned lamb. >=20 > Dr. Wilmut outlined the procedure of using an electric > current to fuse cells at specific stages in the cell cycle. > He said that the fusion is characterized by nuclear membrane > breakdown, condensation and then nuclear membrane > regeneration. Of 277 embryos created, only five survived. Of > these, three died within a few days of birth due to abnormal > development, one died of unknown causes and one produced > Dolly. >=20 > "The process is very inefficient," Dr. Wilmut acknowledged. > Either nuclear transfer or culture causes an increase in > birthweight, prolonged gestation, and an increase in > perinatal mortality that is not associated with either > malformations or abnormal development. >=20 > "We can reprogram the development of a cell," an act that > has broad biological and regulatory implications, Dr. Wilmut > noted. "We can take cells from a patient and cause > differentiation or undifferentiation and redirect them," Dr. > Wilmut said. He pointed out that his is an agriculturally > oriented institution, and his colleagues are considering > using his methods to create superior animals for > agricultural uses. >=20 > "This [technique] will provide the opportunity to > study...the mechanisms of aging...and diseases of the > mitochondria," Dr. Wilmut told the Bethesda, Maryland > gathering. >=20 > Meanwhile, the National Bioethics Advisory Commission, > chaired by Dr. Harold Shapiro, held a meeting yesterday at > the Watergate Hotel in Washington, D. C. This presidential > commission has prompted the development of the similarly > named American Bioethics Advisory Commission, which issued a > press release to coincide with the meeting. The American > Bioethics Advisory Commission is a group of scientists and > bioethicists who "...believe that the President's bioethics > panel is biased in favor of experimentation," according to a > PR Newswire report. >=20 > The American Bioethics Advisory Commission's chairman, Dr. > C. Ward Kischer advised caution in reaction to Dr. Wilmut's > cloning success. "The hard data must be examined very > carefully and the results must be repeatable...The 'success' > of one out of nearly 300 attempts is hardly the kind of > statistic that prompts an investment in repeatable > experiments," Dr. Kischer said. >=20 > In Bethesda, Dr. Wilmut echoed Dr. Kischer's words, saying > that he might have had very poor results with one success in > 277, or he might have been extremely lucky--with the odds of > a success one in a million. Only further research will tell. >=20 > Copyright =A9 1997 Reuters Limited. http://www.reutershealth.com/news/docs/199703/19970314scd.html [log in to unmask] ------------------------------ Date: Fri, 14 Mar 1997 08:58:32 -0500 From: Donovan White <[log in to unmask]> Subject: PD, ALS and MSA I haven't been able to find a lot of information that explains the differences in early diagnosis of Parkinson's that distinguishes it from things like ALS and MSA. Does anyone on this list have this sort of information? When I asked my mom's doctor about the possibility of her having MSA, I think (if I remember this correctly) he said that her symptoms appearing on only her left side helped him determine that she has PD. I appreciate any information on this. Thanks again. Debbie White [log in to unmask] ------------------------------ Date: Fri, 14 Mar 1997 09:39:45 -0500 From: Elizabeth Leslie <[log in to unmask]> Subject: Re: Symmetrel/sex change/'improper' meds Thanks to you all for responding on this. Ken, full marks for lateral thinking. But if ever I was faced with a choice that made me emphatically opt for 'improper' medication this is it. I did joke to Ernie recently that 'I need a wife,' but this is not quite what I had in mind! But it did make me chuckle. Beth >Beth, just tell him you demand a sex change operation, so you can get >proper medicationI If he is working for an HMO and trying to save money >by giving you cheaper meds, he'll have to realize the meds will cost his >employers much less than the surgery! (Just kidding!) > > > > >[OO] LOOKING FOR RADIOS! >Ken Becker >[log in to unmask] > > >On Thu, 13 Mar 1997, Barbara Mallut wrote: > >> Beth... I was appalled to read that you're being WITHHELD l-dopa! >>(Sinemet or >> the equivalent). This seems like an issue of _CONTROL_ to me, rather than >> the practice of a responsible and caring physician. >> >> Since PD is a disease which effects each individual is a somewhat different >> manner from every other individual having the disease, what possible >> difference could I take if you were a male, head of household, working to >> support a wife and kids, and going to lose your job because of the disease >> making dramatic inroads into your life?! The disease IS terrible, and >>you DO >> have it, and you're YOU... This is NOT a gender issue or an occupational >> issue, and your physician MUST be appraised of that!! >> >> If the MD then won't prescribe what IS the drug of choice for most >>people with >> PD then get another doctor! Even an internist or family practitioner .... >> heck, even a PEDIATRICIAN can prescribe you Sinemet!!! (or the equivalent) >> >> This is NOT a "gender-related" disease, its' a HUMAN-related disease. Your >> life IS your life. You'll NEVER be that male your MD has declared you not to >> be. You're going to be YOU for the rest of your life, and your physician >> SHOULD be treating you with the most useful drugs for YOU... the person you >> are, not this fantasy he THINKS should get this valuable drug! >> >> And Beth... don't you DARE trash your research project! WHEN you're on the >> right medication, and possibly also an anti-depressant,, you'll be raring to >> finish that research and to move on with your life. >> >> YOU GO GIRL!! >> >> Sending a buncha love your way.... >> >> Barb Mallut >> [log in to unmask] >> >> >> >> >> >> ---------- >> From: Parkinson's Information Exchange on behalf of Elizabeth Leslie >> Sent: Wednesday, March 12, 1997 3:20 AM >> To: Multiple recipients of list PARKINSN >> Subject: Symmetrel >> >> I'm seeking a bit of guidance on this. I've seen the neuro today. He >> agrees I need treatment. He agrees l-dopa would make me fully functional. >> He sent me away with a script for Symmetrel! He told me it could take me 3 >> months to feel any benefit from it. He did agree - a touch reluctantly, >> perhaps even a little sheepishly - that if I were a guy with wife/family to >> support and at risk of losing my job he would not withhold l-dopa. (One >> good thing tho' - I did find out from him how/where to get my Selegiline >> cheaply. That's a relief.) >> >> Guess what folks? I'm not feeling so :) Getting ready to trash my research. >> >> I'd really like to hear from anyone who takes/has taken this med. And any >> other advice you care to fling my way will be welcome. Off-list is fine. >> >> Thanks, >> >> Beth >> ------------------------------ Date: Fri, 14 Mar 1997 10:00:50 -0500 From: Maureen Allen <[log in to unmask]> Subject: Rates of illness in different populations I am writing a grant to fund a project to teach newly diagnosed PWP and their families about the illness using multimedia CD-ROM technology. I would like to ask a couple of questions. I have also askedthe questions of a support group I belong to. 1) What type of information do you think the new PWP needs to know? 2) What type of information do you think caregivers should know? 3) Would you use a computer program that might have information about PD? Some of the information I have read about PWP, gives statistics about how many have the illness and information about gender but they don't discuss the breakdown according to race. I have read that it is not as common in African-Americans and Asians. Does anyone know the racial breakdown? Thanks in advanced. Maureen Maureen Allen, RN-C MPH Business Address: Clinical Tools, Inc 5001 Baum Blvd Suite 720 Pittsburgh, PA 15213 Phone: 688-8970 Fax 688-9493 Email: [log in to unmask] ------------------------------ Date: Fri, 14 Mar 1997 10:06:35 -0500 From: Maggie Heeger <[log in to unmask]> Subject: just learning I've enjoyed lurking, reading and learning about PD. My mother-in-law is 76, and has had "something" wrong with her for about 3 years. Six months ago she was diagnosed with PD. She doesn't have much of a tremor, but she does fit many other of the symptoms. She has dyskenisia while sleeping, sleeps practically round the clock, is severely depressed and anxious, and is currently in the hospital with pneumonia. She and my father-n-law are living in an area with no relatives or friends nearby to help. Just recently Dad arranged with a church group to have a nurse practitioner, a nurse's aide, and a physical therapist come to the house to visit, each coming three times a week. That's helped alittle, because now Mom has some contact with other people. She refuses to become involved in any type of support group or even a senior citizen's center. She just wants to stay home and have everyone leave her alone. Dad complies with that request. (Their relationship has been rocky, and he's glad to ignore her most of the day.) Her medication consists solely of 3 Permax tablets daily. I want to support them, obviously. But I also want to give them concrete suggestions on how they can help Mom live her life to the fullest. Dad isn't willing/able to be her advocate. He just coasts along with whatever seems to be happening. I'm welcome to any suggestions on any aspect of this situation. By the way, we live 10 hours away from them, so it's extremely difficult for us to drop in and visit. How can we help long-distance? It really seems as if Mom is just waiting to die. When we call, she can only talk for a few minutes, as it wears her out. She is either sleeping or lying still with eyes closed much of the day...she shuts out anyone who tries to talk with her or help. This is so heart-breaking.... thanks, all. Maggie Heeger in northern Alabama ------------------------------ Date: Fri, 14 Mar 1997 10:56:27 -0500 From: Margaret Tuchman <[log in to unmask]> Subject: Udall: General Plan & NJ Advocates Thank you Jim Cordy and Bob Dolezal for you inspiring messages! I suggest that we all follow the activity schedule suggested by Bob: Beginning TODAY through 3/21: daily telephone calls and letters to Senators and Representatives at their DC offices. Call capitol switchboard toll free #: 800-962-3524 or 800-972-3524 Write: United States Senate, Washington, DC 20510 Write: United States House of Representatives, Washington, DC 20515 While you are talking to the DC office, get the phone number of the home office and call to schedule a meeting with the members during their break. Keep calling and insist on a meeting between 3/24 and 4/4. We must also get this message out to those PWPs who are not on this listserv. I am sure that many support groups are aware of the urgency for action, but some may not be. Search out groups and provide them with information. Call these national PD organizations and ask for the group(s) operating in your area: PDF - 800-457-6676, NPF - 800-327-4545,APDA Main #-800-223-2732, APDA Young Parkinsonians - 800-223-9776. There is a double tiered mailing planned for New Jersey. Advocates and support groups will be receiving a Strategy Planning Kit by snail-mail: List of NJ Congress Members, List of 104th Congress Co-sponsors, Table of research funding comparison among diseases, Sample letter format, PAN Cost of Parkinson's Disease Survey,etc. Congress Members will be receiving a packet containing: a letter urging their support, List of 104th Congress Co-sponsors, Table of research funding comparison among diseases, Cost of Parkinson's Summary,etc Call PAN for material you need to wage your campaign: 800-850-4726, or contact [log in to unmask] or [log in to unmask] and we'll send you copies of what we have. If you are in NJ and have not been contacted yet, please email me or call me at: 609-921-6258. We are ready!!! Margaret Margaret Tuchman (55yrs, Dx 1980)- NJ-08540 [log in to unmask] ------------------------------ Date: Fri, 14 Mar 1997 11:06:29 -0500 From: Howard Harrrington <[log in to unmask]> Subject: Introducing myself Hi all, I want to introduce myself to everyone. I have been on the net for 2 1/2 years . Dale Severence a dynamic person introduced me to listserv. It is great. My name is Howard Harrington, my friends call me Bud. I am 61 years old and had PD for 6 years. AT age 50 My health feel apart. Up to thattime I exercised every day watched my diet, and did everything I should do to remain healthy. At 50 I had a severe heart attack while vacationing in Washington DC. 21 days in hospital and 14 days in ICU. This is when looking back the first signs of PD appeared. Difficult buttoning my shirts and drooling.I felt something else was wrong besides my heart but I couldn't put my finger on it. Three years later I had to insist that the cardiologist to do something. I was favoring my right side. He refferred me to a neurologist. So with my heart medication an d my PD medication I was takeing over 10 different medication. I also have Restless Leg Syndrom. I don't know if it is from Parkinson or from medication. It is so bad I get only about 4 hr of sleep a night. I get only exhaustion sleep. Another problem is creeping up. My feet have fallen apart. Besides the bunion and caluses.There is a neurological problem. I cant move my toes. Enough already Don't take me as a long winded verbouse person. I never talk about myself. Today I hav e to let it all hang out. I am a reserved person, married and togeth we have 27 y/o twins boy/girl. My wife is my care giver.A grreat person . She is an RN but has retired so that we can live a quality life together.I can't drive so she is my chauffer too. Thanks for reading, Howard (Bud) Harrington [log in to unmask] Bud ------------------------------ Date: Fri, 14 Mar 1997 10:07:06 -0500 From: MR ROBERT A MARTONE <[log in to unmask]> Subject: Udall Re: WE HAVE A PLAN ! Jim and the Rest of the List, Great post! Here is what we are distributing next week through the (Houston Area Parkinson Society) HAPS newsletter to our 1000 members. It's a little different than yours because Joan Samuelson is still talking to Senator Mc Cain and others about introduction on the 29th. Either way we win so Ii am showing alternate dates for the Bills's introduction. HAPS News Letter March 15 Udall Parkinson's Bill Alive and Well The 105th Congress is in session and the new Parkinsons Research Education and Assistance Act (Udall Parkinson's Bill) will be introduced either April 9, or April 23. While the 104th congress did not complete the approval process for last years Udall Bill, it was approved unanimously by the Senate as part of the NIH Reauthorization. Unfortunately the House did not act on the bill so we must resubmit the bill to the 105th congress. Since our last report many positive things have been happening. We have the beginnings of a National Parkinson's Coalition that includes the APDA, NPF PDF, PI and PAN. Early meetings have served to identify differences but have validated the importance of the Udall bill to the PD community. In the Senate, Senator Paul Wellstone (D) MN, and Senator John McCain (R ) Arizona have agreed to be principle Co-Sponsors. In the House Congressman Fred Upton (R ) and Henry Waxman (D) California have also agreed to Co-Sponsor. The bill will have all the key points that the last bill had and will request $100 million. You can help greatly by calling our Senator's and Congressman and by asking them to support the Udall Parkinson's Disease Bill. A schedule of events for the next few months follows. March 24 - April 4, Congress will not be in session and members will be at home in their district offices. This is an excellent time to call and visit them. Let them know who you are and how much you care. April 9, alternate date for introduction of the Udall bill. April 23, Muhammad Ali to testify before the Senate Appropriations Committee - alternate date for Udall Bill Introduction. Expect national media coverage. April 29, Udall Awards Dinner in Washington honoring Congressman Fred Upton (R ) Michigan and Senator Tom Harkin (D) Iowa for their support of the Udall initiatives. The PAN Forum is scheduled for June 9 -12, in Washington. Any one (From Texas, Arkansas and Oklahoma) wishing to be an Advocate should contact Bob Martone at 281-358-5168 and/or the Parkinson's Action Network at 1- 800-850-4726. The forum includes Parkinsonians and caregivers from all over the country and provides in-depth training on how to be an advocate for PD including scheduling visits with your representatives to discuss the Udall bill while you are in Washington. Bob Martone -------- REPLY, Original message follows -------- > Date: Thursday, 13-Mar-97 04:21 PM > > From: [log in to unmask] \ Internet: ([log in to unmask]) > To: Parkinsn Mail \ Internet: ([log in to unmask] utoronto.ca) > > Subject: WE HAVE A PLAN ! > > I'm joinning Bob Dolezal in presenting this plan of action( see separate post). > The plan is the same, the appeal a little different. I hope that one of these > appeals motivates everyone. This plan had substantial input from Teri Whitling > and Bob Martone among many others. After a long winter staring at the specter > of a year of lost opportunity (our failure to pass the Udall Bill), I feel the > excitement of spring and a new initiative building. As the bulbs begin to > break their way out of their dormancy, I see my fellow advocates beginning to > emerge. Just as these bulbs will surely burst into the warm sunshine of > summer, I look forward to basking in the success of passing the Udall Bill. > > HERE'S THE PLAN > > Now is the time. Our leaders have positioned us such that victory is ours > for the taking. That victory is increased funding for Parkinson's research (the > Udall Bill). > We now have a plan. > > 1) WRITE & CALL/VISIT IN DISTRICT - The last week in March and > the first week in April Congress is on recess. Visit every Congressman > and Senator possible during that two week period and politely insist that > they cosponsor the Udall Bill which will be introduced upon their return. Prior > to a visit or if you can't visit - write or call (800-962-3542 the capitol > switchboard, just ask for your Congressman or Senator) Calls and letters are > not as effective as a visit but are the next best thing (on their own ) and > compliment a visit(demonstrating the visitor represents many more) > > 2) INTRODUCTION - The Udall Bill will be introduced by Senator McCain and > Congressman Upton on Apr. 9th. Equally vital to the ultimate success is the > support of their minority counterparts Senator Wellstone and Congressman Waxman > 3) ALI AT APPROPRIATIONS - Two weeks later, on April 23rd, Muhammed Ali will be on Capitol Hill to testify before the House Appropriations Committee. We will > recruit a group of advocates and go to Washington that week to contact any and > all of those who have not yet agreed to cosponsor. Word of Ali's presence on > the Hill should maximize our presence and impact. > > 4) FINALE - On April 29, as the grand finale, PAN has its annual Udall Awards > dinner. By that time we should have as cosponsors the majority of both houses. > > We then will have given our political leaders (McCain, Wellstone, Upton and >> Waxman) a majority in both Houses far earlier than last year and Congress > will not be adjourning early for a presidential election. We will also have > given them something almost as important - a dramatic demonstration of the unity and resolve of the Parkinson's community. A message that we will not be > denied. > > My challenge is to come up with the words that will motivate people, many > who may have never been involved in politics or perhaps do not even know who their Congressman is, to summons up the nerve, resolve, chutzpa, cojones (call it what you will), and go see their Congressman and Senators. There is simply no substitute for seeing your elected official in person. If during that > visit you convey the misery brought about by this affliction and establish that a cure or new effective treatment is close, then that person must look you in the eyes and either say "Yes, I will help" or "No, I will condemn you to a life of disease and suffering". The latter is extremely difficult for one human to say to > another. If you have Parkinson's and would like to do your part to cure this hideous disease, plan on seeing your Congressman in person during those two weeks. Call now as you may have to convince their aides that you will see your elected official if you have to sit on the door step. Tenacity should not be a problem for those who suffer daily with this scourge. You cannot convey this emotion by phone or letter. You cannot convey this emotion through an aide. It takes a personal visit and it works. My wife and I have personally seen 23 elected officials and 19 have agreed to cosponsor. Conversely we have spoken to 20 aides and only 10 of those elected officials have agreed to cosponsor. If you want to one day have the freedom of movement we all use to take for granted, you simply must seize this opportunity. > > This is it folks. We need to get this legislation passed now. We must > demonstrate that the Parkinson's community has the resolve to demand that > we obtain the breakthrough that the neuroscientists tell us is so tantalizingly close. We cannot keep coming back year after year with the same message. This is the year we must get it done. > Jim Cordy > Pittsburgh > [log in to unmask] -------- REPLY, End of original message -------- -- [log in to unmask] ------------------------------ End of PARKINSN Digest - 13 Mar 1997 to 14 Mar 1997 - Special issue *******************************************************************