-------------------- From: FKKR09A@prodigy.com (MRS MARGARET L SESSIONS) To: tom.mckeever@mit.com Date: Tue, 13 Feb 1996 15:44:34 EST Subject: Re: MCS -- [ From: Margaret Sessions * EMC.Ver #2.10P ] -- I, too, have an allergy to different scents. I can go to the mall and go by the scented candle store, smells good, but then I start to itch. I have PPS and don't know if it is just an allergy or what. Never knew anyone else had this problem. Margaret in Florida * WCE 2.1G1/2037 * A Buddhist nudist practices Yoga bare. --- WILDMAIL!/WC v4.12 * Origin: SPACECON Med/Disab. BBS - Home of ye POST_POLIO ECHO. 1:374/22.0) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: D2J00000 Date: 02/13/96 From: STEVE JANICK Time: 07:35pm \/To: ALL (Read 3 times) Subj: Medicaid Position January 15, 1996 DRAFT POSITION PAPER MEDICAID WHAT IS MEDICAID? Medicaid is the basic safety net health care program for 37.5 million Americans including 4 million individuals with disabilities. Medicaid includes not only the traditional acute health care services such as Physicians, Hospitals and pharmaceutical, but it also pays for diverse services such as wheelchairs, personal assistance services, transportation, therapies, home modifications, disposable medical supplies, and even long term care such as nursing home care, home health care such as alternatives to institutionalization and even housing and care in group homes. It is an entitlement program for low income children and women, children and adults with disabilities and the poor frail elderly. Medicaid has a means test and an maximum assets test. In New Jersey, approximately 3,900 developmentally disabled individuals are funded for institutional care in intermediate Care Facilities - Mental Retardation (ICF-MR), 3,000 receive group housing, 3,700 receive day training services, and over 1,000 individuals receive respite care. Approximately 21% of Mental Health expenditures and 50% of Community Based Mental Health Services are funded by Medicaid. HOW IS THE PROGRAM PRESENTLY FUNDED? The present program is funded 50 % by the Federal Government and 50 % by the State of New Jersey. WHAT IS PROPOSED FOR CHANGE IN MEDICAID? The congressional proposal is to rename the program - Medigrant and make block grant to the states. Originally, the congressional proposal reduced the projected size of the program by $ 182 billion over the next seven years, although the more recent Congressional budget decisions have reduced these program cutbacks to approximately $ 117 billion. Each state would be able to change its own priorities and the items on which it pays for services. The program would no longer be an entitlement program, and the program would vary from state to state. Unless a state decided to retain the safety net aspects of the program, the entitlement element would cease with the funding change. Most states would change from fee-for-service payments to managed care providers. In New Jersey, managed care is already being implemented for low income women and children (approximately 25 % of budget), and plans are being discussed for managed care for individuals with disabilities in 1997. The long term aspects of the former Medicaid program such as housing, nursing home care, community waivers and respite care are still to be discussed. Among the types of services that seem to be at risk are payments for adaptive equipment, personal assistance services, behavioral supports, respite, and services for integrated and inclusive community based activities. WHAT IS THE PRESIDENT'S POSITION? The President proposes to retain the national safety net concept with modifications to give the states some flexibility. His reductions amount to $ 54 billion over seven years. The President would however cap the federal governmental exposure. This cap would utilize the 1995 expenditures for acute and long term care divided by the total number of disabled persons for each state; there would also be a maintenance of effort provision for each state. Because of the manner in which the State of New Jersey previously budgeted and expended Medicaid dollars, the cap and the maintenance of effort provisions could negatively affect New Jersey. The program would continue to serve approximately 4 million persons with disabilities and continue to utilize a fee-for-service delivery system. WHAT I CAN DO? You can call the White House at (202) 456-1111 and express your opinion. You can call both Senator Bill Bradley (202) 224-3224 and Senator Frank Lautenberg (202) 224-4744 and express your opinion. You can call your Congressional representative and express your opinion, Robert Andrews (202) 225-6501 Frank LoBiondo (202) 225-6572 James Saxton (202) 225-4765 Chris Smith (202) 225-3765 Marge Roukema (202) 225-4465 Frank Pallone (202) 225-4671 Robert Franks (202) 225-5361 William Martini (202) 225-5751 Robert Torriceiii (202) 225-5061 Donald Payne (202) 225-3436 Rodney Frelinghuysen (202) 225-5034 Richard Zimmer (202) 225-5801 Robert Menendez (202) 225-7919 * OLX 2.2 TD * DEN BBS, Hackensack, NJ, 1:2604/305, 201/342/3273 --- FLAME v1.0 * Origin: DEN BBS - Hackensack, NJ - (201)342-3273 - (1:2604/305) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: D2K00000 Date: 02/15/96 From: MARTHA LILLARD Time: 12:13am \/To: ALL (Read 3 times) Subj: Ventilator dependent? I sleep in an iron lung and would very interested in chatting with anyone out there who is ventilator dependent, especially if you are now using the iron lung or a rocking bed, or any kind of non-invasive ventilator. --- Maximus 2.02 * Origin: the silent scream * 1-405-943-1068 (1:147/27) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: D2K00001 Date: 02/15/96 From: MARTHA LILLARD Time: 12:33am \/To: LD WALKER (Read 3 times) Subj: MCS I read of your sensitivity to scents with great interest. I too have been exxperiencing a much greater sensitivity to scents in the past few years. I can not at all be exposed to solvents, or certain types of them anyway, or I have the terrible symptoms of the eyes and breathing you mentioned. Also severe nausea. So far, most perfumes don't affect me, but a few do. Smoke seems to e the worst public culprit. I am now allergic to cigarette smoke. I develop asthma after being exposed to it for just a few seconds. I used to live at home andgrew up with my father smoking 4 packs a day and it was never a problem. Now I can't even look at a cigarette! I don't know exactly what the cause of all this is. But I have an idea that our immmune systems have been so overworked compensating for our neurological oss and dealing with our additional emotional stresses that it is growing weaker sooner, just like the neuron sheathes are. We are aging a little faster than most others our age in some ways. So far, I have been abl to deal with the scent problem much easier than the fatigue. I saw you said you were the opposite. I have a great lot of aralysis and was completely paralyzed in the beginning, so I imagine most all of my neurons are compromised and probably demyelating (sp). I'm doing body-imaging to help prevent this. I find that a lot of my own symptoms are very much like the people with Chronic Fatigue Syndrome. I feel I have this either instead of pps, or in addition to it because of the many strange symptoms that pp people don't seem to have. ou are one of the first I've known to even mention any skin/sensitivity roblems! My allergies are very bad now, and greatly contribute to my fatigue, I think. I do take allergy extracts each week and they help some. I think the key to the best health we can enjoy is in reducing our stress. Write back sometime. I won't wear any perfume ! --- Maximus 2.02 * Origin: the silent scream * 1-405-943-1068 (1:147/27) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: D2M00000 Date: 02/16/96 From: AM0095@MAIL.ARROWNET.COM Time: 12:00am \/To: TOM MCKEEVER (Read 3 times) Subj: Scents and PPS NOTE: This message was originally in conference "UNET - ALT.LAW.ENFORCEMNT" and was copied here by Tom Mckeever. From: "K. MacClewage" To: Multiple recipients of list POLIO Date: Fri, 16 Feb 1996 05:00:34 -0500 Subject: Scents and PPS >I have intended to ask for some time now if any of the Polio Survivors >have had a problem with extreme sensitivity to scented products. Having gone in with bulbar, getting the others later, I find that I am more and more reactive to smoke, scents (although me reactions are more lung than skin, etc) and the cold (react asthmatically now). Additionally, I thought I had heard/read that so many of us have allergies which worsen as our PPS does. Mine have to be certain. I can not handle dust now at all, even to read an older book. Sigh. So, although the reactions may not be as intense, and each of us is unique, it makes *scents* to me! Kara MacC --- WILDMAIL!/WC v4.12 * Origin: SPACECON Med/Disab. BBS - Home of ye POST_POLIO ECHO. 1:374/22.0) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: D2R00000 Date: 02/16/96 From: TOM MCKEEVER Time: 12:00am \/To: LD WALKER (Read 2 times) Subj: Scents and PPS NOTE: This Message was originally addressed to Tom Mckeever from Am0095@mail.arrownet.com and was forwarded to you by Tom Mckeever -------------------- From: "K. MacClewage" To: Multiple recipients of list POLIO Date: Fri, 16 Feb 1996 05:00:34 -0500 Subject: Scents and PPS >I have intended to ask for some time now if any of the Polio Survivors >have had a problem with extreme sensitivity to scented products. Having gone in with bulbar, getting the others later, I find that I am more and more reactive to smoke, scents (although me reactions are more lung than skin, etc) and the cold (react asthmatically now). Additionally, I thought I had heard/read that so many of us have allergies which worsen as our PPS does. Mine have to be certain. I can not handle dust now at all, even to read an older book. Sigh. So, although the reactions may not be as intense, and each of us is unique, it makes *scents* to me! Kara MacC * WCE 2.1G1/2037 * DESQview vs. Windows is a no-Win situation. --- WILDMAIL!/WC v4.12 * Origin: SPACECON Med/Disab. BBS - Home of ye POST_POLIO ECHO. 1:374/22.0) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: D2T00000 Date: 02/22/96 From: HJK WILSON Time: 07:30pm \/To: TOM MCKEEVER (Read 2 times) Subj: Scents and PPS >I have intended to ask for some time now if any of the Polio Survivors >have had a problem with extreme sensitivity to scented products. I have always been extremely sensitive to smells or maybe only since I had Polio at 11--the worst for me is the odor put in natural gas. I seem to smell it wherever gas is used. Luckily I live in an all electric area TM> Additionally, I thought I had heard/read that so many of us have TM> allergies which worsen as our PPS does. Mine have to be certain I am currently having troubles with eyes watering, especially at night or if I attempt to read while reclining or lying down. I hate to blame everything on Post polio--maybe it is just aging. But I fear I will miss a real illness or problem by discounting it as Post polio ... "Yield to temptation, it may not pass your way again." - L. Long ___ Blue Wave/QWK v2.20 --- WILDMAIL!/WC v4.12 * Origin: Shots Fired....BBS (214)203-9274..Garland, Texas (1:124/3151.0) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: D2V00000 Date: 02/24/96 From: LD WALKER Time: 07:45pm \/To: TOM MCKEEVER (Read 2 times) Subj: scents Tom and all, thanks for the replies about my problem with scent allergies. Since I posted, I now have began to have a reaction when reading a newspaper or magazine that has been recently printed; sneezing and itching. From the few replies, it seems at this point that at least it will not be suffered by polio survivors on a regular basis. That's good news. Everyone hang in there, maybe tomorrow the miracle cure that works. :-) L D Walker --- GOMail v2.0 [94-0125] * Origin: H-E-B BBS Help!!! get me out of here!!! (1:130/901) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: D2W00000 Date: 02/25/96 From: TOM MCKEEVER Time: 10:35pm \/To: HJK WILSON (Read 2 times) Subj: Scents and PPS Greetings, Hjk!! While you were muttering to Tom Mckeever, <02/22/96>, you spake thusly: HW> >I have intended to ask for some time now if any of the Polio Survivors >have had a problem with extreme sensitivity to scented products. HW> I have always been extremely sensitive to smells or maybe only since I had HW> Polio at 11--the worst for me is the odor put in natural gas. I seem to HW> smell it wherever gas is used. Luckily I live in an all electric area Now (after 30 years smoking), Cigarette smoke almost makes me retch... TM> Additionally, I thought I had heard/read that so many of us have TM> allergies which worsen as our PPS does. Mine have to be certain HW> I am currently having troubles with eyes watering, especially at night HW> or if I attempt to read while reclining or lying down. HW> I hate to blame everything on Post polio--maybe it is just aging. But I HW> fear I will miss a real illness or problem by discounting it as Post polio Been there - Done that - ended up with a Quadruple bypass!!!! :-) Take care!! Tom.. (tom.mckeever@mit.com) (ksc_admin@ids.net) SPACECON/BRAVEHEART BBS (1:374/22) (407) 459-0969 452-8969 453-5393 (1200-28800 Baud) (Home of INFOLOG, OTVIEW, & POST_POLIO and CARDIAC Echoes!!) OUR WC5 BBS: HTTP://spacecon.ids.net or TELNET/FTP spacecon.ids.net! * WCE 2.1G1/2037 * The only good Polio Virus is a dead Polio Virus! --- WILDMAIL!/WC v4.12 * Origin: SPACECON Med/Disab. BBS - Home of ye POST_POLIO ECHO. 1:374/22.0)