[QUAD-L] Muscular dystrophy
Any other muscular dystrophy/neuromuscular disease quads? I'm dysautonomic mitochondrial myopathy, MELAS/MNGIE features. I'm vent-dependent. Hope everyone is having a good 2008 so far. Miri - Looking for last minute shopping deals? Find them fast with Yahoo! Search.
[QUAD-L] FW: ADA Technical Bulletin: January 2008
DBTAC- Northeast ADA Technical Bulletin: January 2008 The DBTAC- Northeast ADA Center at Cornell University provides training, technical assistance and materials on the ADA and accessible information technology throughout New York, New Jersey, Puerto Rico and the U.S. Virgin Islands. This monthly technical bulletin is part of our dissemination efforts and if you do not want to receive this document or would like others from your organization added to our list, please call 1-800-949-4232 or reply to this message. Thank you. Please join us for the January distance learning - Best Practices in Design: Balancing local, State and Federal Requirements to Ensure Accessibility What is best practice when it comes to designing accessible environments? Is compliance with local, state and federal building codes/standards enough? Architects and designers are faced with a myriad of rules and regulations governing accessible design which may require their professional judgment to determine which provides greater access. Join our panel of speakers as they discuss and debate this issue and engage in a dialogue about achieving minimal compliance versus designing accessible and useable environments. Speakers: Jack Catlin, AIA, LCM Architects Doug Anderson, LCM Architects John Wodatch, Chief, Disability Rights Section, U.S. Department of Justice Joe Russo, Deputy Commissioner, Chicago Mayor's Office for People with Disabilities Date: January 15, 2008 Time: 1:00-2:30pm CT Cornell University's Employment and Disability Institute ediONLINE Web Course Series Cornell University's Employment and Disability Institute through ediONLINE provides high quality, low cost training for advocates, consumers and benefits planners in the areas of Social Security Disability Insurance, Supplement Security Income, Medicare, Medicaid and all aspects of Social Security Work Incentives and associated counseling issues. All sessions are web based and require only access to a computer and telephone yet allow for a truly interactive experience. Learn from nationally recognized experts. All courses will meet most continuing education requirements and necessary documentation will be provided by Cornell University. Join us for one class or begin a certificate series! Register at www.edi.cornell.edu COAT Hails Communications and Video Accessibility Act (excerpt from TMCnet) The Twenty-first Century Communications and Video Accessibility Act has been hailed by the Coalition of Organizations for Accessible Technology (COAT) as a dramatic and comprehensive step forward for consumers with disabilities This recently issued legislative measure was released on December 21 and will amend the Communications Act-the statute that impacts the telephone and video programming industries-to add new consumer protections to ensure individuals with disabilities do not get left out or behind as telephones and television programming increasingly rely on digital and Internet Protocol technologies. For more information, please go to http://www.tmcnet.com/news/2007/12/27/3185790.htm February 2008 event focusing on 'How Disability Employment Protection Laws Affect Employer Accommodation Provisions' Cornell University Rehabilitation Research and Training Center on Employment Policy for Persons with Disabilities and the American Association of People with Disabilities (AAPD) are pleased to invite you to the upcoming Policy Forum: How Disability Employment Protection Laws Affect Employer Accommodation Provisions. Date and Time: February 7, 2008, 10:00 AM - 12:00 PM EST. Location: Washington D.C. Panelists: Richard Burkhauser, Ph.D., Cornell University, Policy Analysis and Management Discussant: Michael Collins, Executive Director, National Council on Disability John D. Kemp, Esq., Executive Director General Counsel, US Business Leadership Network You can register online at: http://www.ilr.cornell.edu/edi/register/PolicyForum.cfm and attend the Policy Forum in person or via webinar. If you are attending via webinar please indicate so in the comments field of the online registration form. Appeals for Social Security can now be done on-line (excerpt from SSA's website) Effective December 22, 2007, Social Security began allowing a claimant who has been medically denied at the initial level to file the appeal and the disability report form electronically. SSA instructs those with non-medical denials to should contact their local Social Security Office to request the review, or to call SSA's toll-free number, 1-800-772-1213, to request an appeal. People who are deaf or hard of hearing can call SSA's toll-free TTY number, 1-800-325-0778. See http://www.ssa.gov/d http://www.ssa.gov/ds1.htm s1.htm for more information. WEBINAR ANNOUNCEMENT- Promising Practices: Linking Youth to Employment and Education through Community Service A webinar entitled Promising Practices: Linking Youth to Employment and Education through Community Service
[QUAD-L] Ramblings on health
Over the years I have been amazed at the differences between levels of spinal cord injury. As is so often noted, we vary tremendously. We each have our own demons to deal with, and we each deal with them in often ingenious ways. I have often felt frustrated that it was so difficult to find the answers for seemingly small problems. Until I came up on this list a couple of years ago, I had been relatively isolated from other quads. Reno had no physiatrist, so I just used a family practitioner and she and I dealt with problems as they came up. Lucky for me, I hardly had any problems. The biggest whammy was being bitten by a brown recluse spider, and not having it diagnosed until a lot of damage was done. Luckily, that was during the time I had insurance. The people on this list have so much experience, and are so willing to share it with the rest of us, that many of the small problems can be resolved rather simply. At Santa Clara Rehabilitation, they emphasized keeping everything simple. Since I had very little access to information about quads, I kept it simple. The first 14 years bowel care consisted of digital simulation every third day, but after realizing that I was major lactose intolerant we changed it to four times a week-Monday, Wednesday, Friday, Saturday-and I’ve stayed on that routine since then. I did not even have a urologist that was familiar with quads, so I just stayed with intermittent catheterization, not knowing the options. I do use an overnight bag with a 14 F red rubber catheter overnight as I do not have anybody to cath me. I’ve been very fortunate and do not have many UTIs, and have never had a serious one. I must admit that having to stop activities in order to be cathed is somewhat of a nuisance, but if it means that I will not have to deal with UTI’s I will continue to live with the scheduling problem. Of course, I cannot be sure that that is why I do not have UTI problems, but if it ain’t broke, why fix it? My new urologist told me that one of the advantages of using intermittent catheterization is that my bladder has stayed a normal size, and I am able to hold around 500 CC’s before my body lets me know it is time. If I watch what I eat and drink that is usually around 6 to 7 hours. Except for pressure sores I have enjoyed remarkable health, and thanks to the clinitron bed my pressure sores have been cured, and I hope that I can remain free of pressure sores. Because I cannot feed myself, it has been relatively easy for me not to gain weight because I hate being fed by other people. One would think after 17 years that I would be comfortable with it, but the only time it works well is when I share a plate and realize I am not keeping somebody from eating their food. JIt’s also very difficult to snack when I have to ask somebody else to fix it for me. This summer I had many tests done, because my physiatrist was appalled that I have not had scans done regularly. Everything was just OK, and luckily for me everything was in its right place J. They noted I had a couple of gallstones, and wanted to watch them. But over the holidays everything changed. My years of being healthy made me unaware of how sick I was. When my daughter said that I was yellow, and I had several days of burning pain in my stomach, I went to the ER. Except for being yellow, everything appeared to be OK-blood pressure, no fever, pulse rate OK, and my urine was rather dark, but not really worrisome. They were extremely busy in the ER, but we let them know I would need to be cathed in a couple of hours. They were very understanding, and came out a couple of times to let us know they had not forgotten us, and were able to get me into a room as quickly as possible. Everything changed however when they found out I was passing a gallstone and had pancreatitis, and they moved into high gear. I was admitted, and they explained my options, and we all agreed that I would have to have my gallbladder removed as soon as the pancreatitis subsided. My body was ready two days later-not my mind J-and I went to surgery, only to wake up with a tracheotomy! Certainly not what I was hoping for, as the anesthesiologist had said there was a 5% chance that I would have to have a tracheotomy. Unfortunately the scar tissue from my first tracheotomy prevented a simple intubation, and my daughter had to agree to a tracheotomy. Now I was facing a much longer stay in the hospital. I was in ICU for nine days because I had a major bleed-rapid response and all the rest-and really came face to face with my mortality. My care there was absolutely great, but then I had to move to a more long-term facility. WOW what a difference. Got there on Tuesday and, and by Thursday I wanted to leave. I went for hours without anyone checking in, no call button that I could use, and no way to call for anybody. Convinced my Dr. to take out the tracheotomy on Friday, and after a night from hell on Friday night, convinced him I would be much safer at home
Re: [QUAD-L] Muscular dystrophy
Hi Miri, Welcome to the Quad-list, lot of good people here good information. I'm Lindaf living in NW Indiana with a C 4-5 complete injury since 87. Again, welcome. Lindaf
Re: [QUAD-L] Old-timers and newcomers_Checking in
Hi Eric, I didn't start posting to the Quad-List until 2002, but I was e-mailing a member, and reading the Q-List's posts before then. Stay strong. With Love, CtrlAltDel aka Dave C4/5 Complete - 31 Years Post Texas, USA Eric W Rudd [EMAIL PROTECTED] wrote: 08/97 Eric W Rudd [EMAIL PROTECTED]
Re: [QUAD-L] Ramblings on health
Joan it was indeed a pleasure to hear from you again. Sorry to read of your recent past weeks and hope that you will return to better health early this year. Make sure that you personally convey to your doctor that any wishes for services or equipment be listed as doctors orders. If its not written as doctor's orders its not done. When the hospital or nursing center violates a doctors orders, it falls back on the doctor. Keep in mind that you are in our thoughts and prayers. Please continue to post and... rant. (wink, wink) W In a message dated 1/9/2008 3:59:08 P.M. Central Standard Time, [EMAIL PROTECTED] writes: I know as I get older that my health issues may become more of a problem, but hopefully I will be wise enough to catch them at the beginning and not let them progress to the hospital state! At Santa Clara they emphasized that we should be in control of our bodies, and not let our bodies be in control of us. I continue to think that God has a purpose and a plan for us, and that our job is to focus on the positive aspects of our lives, educate as many people as possible that wheelchairs are only the way that we walk, and try to improve things for those who will follow. Forgive my ramblings, but thanks for listening. From snowy Reno Joan **Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp0030002489
Re: [QUAD-L] jim boen's obit
Does anyone know how old James Boen was when he died? -- Keep on Rollin, Paul -- Original message -- From: William Willis [EMAIL PROTECTED] Boen, James R. Probably the longest surviving quadriplegic in America, Jim Boen died December 6, 2007. He had an idyllic childhood in Peru, Indiana, graduated from high school in Appleton, WI and attended Dartmouth College where he broke his neck during his Junior year doing the giant swing on the high bar in 1951. After 9 months in the hospital (where he learned a million jokes), he took correspondence courses, attended Lawrence University and graduated from Dartmouth with high distinction in mathematics. He earned his MS and PhD in math at the University of Illinois where he met his wife, Dorothy. After teaching at Southern Illinois University, a year at the University of Chicago and teaching algebra at the University of Michigan, he became fascinated by biostatistics and spent several years at Stanford working on a post doctorate before coming to the University of Minnesota in 1964. He was a full professor in biometry for 24 years and Associate Dean of the School of Publi! c Healt h for 14 years before retiring in 2000. He found that as a quad, he could shoot a gun, so target shooting and hunting became his passion. Besides his wife of 50 years, he is survived by son, Dean (Dyna), granddaughter, Elly; daughter, Susan Koehn (Brad) and grandsons, Aidan and Alex Bendini; and extended family, Grace and Rick Sheely. A service will be held at the Cremation Society Chapel, 7110 France Ave. S. in Edina (952-924-4100) at 1 pm December 17, with visitation at 12 and reception following. Memorials suggested to the Boen Scholarship CC: [EMAIL PROTECTED] From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Subject: Re: [QUAD-L] oops Date: Mon, 17 Dec 2007 08:17:14 -0500 What did he die of? On Dec 17, 2007, at 7:07 AM, William Willis wrote: I found Jim Boen's book here. Hope it works. http://www.jimboen.com/50index.htm Date: Sat, 15 Dec 2007 17:23:43 -0800 From: [EMAIL PROTECTED] To: quad-list@eskimo.com Subject: [QUAD-L] oops sorry... www.startribune.com/obituaries Lucinda C-4,5 complete July 31, '05 Mpls., MN Never miss a thing. Make Yahoo your homepage. Don't get caught with egg on your face. Play Chicktionary! Check it out! The best games are on Xbox 360. Click here for a special offer on an Xbox 360 Console. Get it now!
Re: [QUAD-L] Muscular dystrophy
I have Multiple Sclerosis. Am wheelchair bound have use of 3 limbs. KK People are so worried about what they eat between Christmas and the New Year, but they really should be worried about what they eat between the New Year and Christmas. Anonymous
