tag:blogger.com,1999:blog-19709428488616750702024-03-21T22:44:32.836-04:00Banding Together for PALSALS Grumpyhttp://www.blogger.com/profile/03197310566321587027noreply@blogger.comBlogger43125tag:blogger.com,1999:blog-1970942848861675070.post-26091448108917187612008-05-17T22:09:00.003-04:002008-05-17T22:13:04.264-04:00<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM6bKeWHPeNRTWzlXJ5obzHzfGfvs4rapYW7ljTE_E2VCHUCNYgzaWM7USmQFMc5JQqWZsGZoFyuZm1UtenlE7WL9dnNXxJCuJZp44SuW65a5lQLv6Ga1ZtD693IkmYB6dRv-5MiFr9bY/s1600-h/support+group+5+17+2008.gif"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM6bKeWHPeNRTWzlXJ5obzHzfGfvs4rapYW7ljTE_E2VCHUCNYgzaWM7USmQFMc5JQqWZsGZoFyuZm1UtenlE7WL9dnNXxJCuJZp44SuW65a5lQLv6Ga1ZtD693IkmYB6dRv-5MiFr9bY/s400/support+group+5+17+2008.gif" alt="" id="BLOGGER_PHOTO_ID_5201535038422303778" border="0" /></a><br />The Tampa Support group says thanks to Ken Patterson for his courageous journey to Washington DC to raise awareness about ALS. Yes the group is actually a little blurry.ALS Grumpyhttp://www.blogger.com/profile/03197310566321587027noreply@blogger.com4tag:blogger.com,1999:blog-1970942848861675070.post-53918157326264844092008-05-17T21:38:00.002-04:002008-05-17T21:41:14.478-04:00Here is a video of Ken Patterson's courageous trip by wheelchair from Orlando to Washington, DC. The video covers Ken present a wreath commemorating all the veterans that have died from ALS. And then he arrives at the Advocacy Day flagship hotel in Washington, DC.<br /><br /><object width="425" height="355"><param name="movie" value="http://www.youtube.com/v/nmmU5NTHk7I&hl=en"></param><param name="wmode" value="transparent"></param><embed src="http://www.youtube.com/v/nmmU5NTHk7I&hl=en" type="application/x-shockwave-flash" wmode="transparent" width="425" height="355"></embed></object>ALS Grumpyhttp://www.blogger.com/profile/03197310566321587027noreply@blogger.com1tag:blogger.com,1999:blog-1970942848861675070.post-83527076755811386482008-05-12T20:27:00.001-04:002008-05-12T20:29:29.879-04:00May is ALS Awareness Month- at least in Florida<table border="0" cellpadding="0" cellspacing="0" width="600"><tbody><tr><td><a rel="nofollow" target="_blank" href="http://web.alsa.org/site/R?i=eIRP3n0pIRZ7lrkAjwhL9g.."><img alt="" src="http://webfl.alsa.org/images/alsa/stationery/2k6/als_logo.gif" border="0" height="85" width="180" /></a> </td> <td><img alt="" src="http://webfl.alsa.org/images/alsa/stationery/2k6/masthead2.gif" height="85" width="186" /> </td> <td> <table border="0" cellpadding="0" cellspacing="0"> <tbody> <tr> <td background="http://webfl.alsa.org/images/alsa/stationery/2k6/nav_level1.gif" height="23" width="234"> <div class="topnavtext" align="right"> <a rel="nofollow" class="topnav" target="_blank" href="http://web.alsa.org/site/R?i=mGhio368hRp4LWAGLSMYxA.."><span style="font-size: 80%; color: rgb(204, 0, 0);font-size:78%;color:#cc0000;" ><span class="yshortcuts" id="lw_1210637985_0">Donate Now</span></span></a> <span style="font-size: 80%; color: rgb(204, 0, 0);font-size:78%;color:#cc0000;" > | </span> <a rel="nofollow" class="topnav" target="_blank" href="http://web.alsa.org/site/R?i=iEHzx0dhMRa3AGDecis8WQ.."><span style="font-size: 80%; color: rgb(204, 0, 0);font-size:78%;color:#cc0000;" ><span class="yshortcuts" id="lw_1210637985_1">Register for ALS Info</span></span></a> <span style="font-size: 80%; color: rgb(204, 0, 0);font-size:78%;color:#cc0000;" > | </span> <a rel="nofollow" class="topnav" target="_blank" href="http://web.alsa.org/site/R?i=ioHTlot_KpeyXMg6uAZybg.."><span style="font-size: 80%; color: rgb(204, 0, 0);font-size:78%;color:#cc0000;" ><span class="yshortcuts" id="lw_1210637985_2">Contact Us</span></span> </a> </div> </td> </tr> <tr> <td background="http://webfl.alsa.org/images/alsa/stationery/2k6/nav_level2.gif" height="19" width="234"> <div class="topnavtext" align="right"> <a rel="nofollow" class="topnav" target="_blank" href="http://web.alsa.org/site/R?i=WsafDgqeS2el56_JEL9IsQ.."><span style="font-size: 80%; color: rgb(204, 0, 0);font-size:78%;color:#cc0000;" ><span class="yshortcuts" id="lw_1210637985_3">Tell a Friend</span></span></a> <span style="font-size: 80%; color: rgb(204, 0, 0);font-size:78%;color:#cc0000;" > | </span> <a rel="nofollow" class="topnav" target="_blank" href="http://webfl.alsa.org/site/CO?i=ajaLZdbQH3ZoJ3KTTFH4p4-yKOOO2X7E&cid=0"><span style="font-size: 80%; color: rgb(204, 0, 0);font-size:78%;color:#cc0000;" ><span class="yshortcuts" id="lw_1210637985_4">Email Preferences</span></span></a> </div> </td> </tr> <tr> <td background="http://webfl.alsa.org/images/alsa/stationery/2k6/nav_level3.gif" height="20" width="234"> <div align="right"><a rel="nofollow" class="topnav" target="_blank" href="http://web.alsa.org/site/R?i=YTYrhhmW5oWAGAEVhu-e6w.."><span style="font-size: 80%; color: rgb(204, 0, 0);font-size:78%;color:#cc0000;" ><span class="yshortcuts" id="lw_1210637985_5">Visit Our Website</span></span></a> </div> </td> </tr> <tr> <td><span style="font-size: 90%; color: rgb(0, 0, 0);font-size:85%;color:#000000;" ><img alt="" src="http://webfl.alsa.org/images/alsa/stationery/2k6/nav_level4.gif" height="23" width="234" /> </span> </td> </tr></tbody></table> </td> </tr></tbody></table> <table border="0" cellpadding="0" cellspacing="0" width="600"> <tbody> <tr> <td background="http://webfl.alsa.org/images/alsa/stationery/2k6/headerline.gif"> <div class="chaptertext" align="center">The ALS Association Florida Chapter</div> </td> </tr></tbody></table> <h2>Florida Cabinet Joins the House and Senate in Declaring May to be “ALS Awareness Month”</h2> <p>The ALS Association Florida Chapter is celebrating another advocacy success. The Florida Cabinet soon plans to echo the actions of the House and Senate in proclaiming May to be “ALS Awareness Month.”</p> <p><span style="border-bottom: 1px dashed rgb(0, 102, 204); background: transparent none repeat scroll 0% 50%; cursor: pointer; -moz-background-clip: -moz-initial; -moz-background-origin: -moz-initial; -moz-background-inline-policy: -moz-initial;" class="yshortcuts" id="lw_1210637985_6">Governor Charlie Crist</span>, along with Florida Cabinet members Bill McCollum, Alex Sink, and <span style="border-bottom: 1px dashed rgb(0, 102, 204); cursor: pointer;" class="yshortcuts" id="lw_1210637985_7">Charles Bronson</span>, will make the proclamation in a meeting scheduled for <span style="border-bottom: 1px dashed rgb(0, 102, 204); background: transparent none repeat scroll 0% 50%; cursor: pointer; -moz-background-clip: -moz-initial; -moz-background-origin: -moz-initial; -moz-background-inline-policy: -moz-initial;" class="yshortcuts" id="lw_1210637985_8">Tuesday, May 13</span> in Talahassee. <strong>Association supporters, patients, and caregivers are welcome to attend the short ceremony. Please meet in front of the cabinet meeting room in the Capitol Building no later than 8:45am. </strong></p> <p>The resolution will dedicate the month of May to educate the public about the devastating effects of Lou Gehrig’s Disease. Cabinet members hope their efforts will aid the fight against ALS, while supporting patient care and biomedical research. </p> <p>“This resolution is the culmination of a six week campaign. For the first time, ALS will achieve recognition across the entire state and gain distinction in the minds of state legislators,” Dara Alexander, ALS Association Florida Chapter President, said. </p> <p>The ALS Association thanks Attorney General Bill McCollum for his support of this resolution and ALS Advocate Ed Kourt for his efforts in meeting with state leaders. As a result of this resolution, we anticipate great success in educating the public, increasing funds for research and patient care, and ultimately taking another big step toward making ALS a disease of the past.</p>ALS Grumpyhttp://www.blogger.com/profile/03197310566321587027noreply@blogger.com4tag:blogger.com,1999:blog-1970942848861675070.post-65044276339597922342008-05-12T14:05:00.005-04:002008-05-12T14:35:56.325-04:00What next?We can only hope that all our emails are still wending their way through the desks of the <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3ZmybAkqDIQKy709V8pUFrvg4obyoIsVRGpcRphPtvDRq0Iox6P8P8Pz9vbcPI47kHlkZT9i3qQKb84rEX0Bc-ngoOvSo4VEAh9hZDPu-bV-XYczKO2ljkQ7f-TwyWXnVJ74NS6c_4Ho/s1600-h/tows_photoid_top.gif"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3ZmybAkqDIQKy709V8pUFrvg4obyoIsVRGpcRphPtvDRq0Iox6P8P8Pz9vbcPI47kHlkZT9i3qQKb84rEX0Bc-ngoOvSo4VEAh9hZDPu-bV-XYczKO2ljkQ7f-TwyWXnVJ74NS6c_4Ho/s200/tows_photoid_top.gif" alt="" id="BLOGGER_PHOTO_ID_5199557785803080690" border="0" /></a>celebrities. One day we may here that one or more of them picked up the ball and will do a segment on ALS. Certainly we generated a collection of stories that will live on telling of living and dying from an "orphan" disease.<br /><br /><br /><br />May is ALS Awareness Month but so far the only ones who seem to be aware is the ALS community. I have seen nothing in the print or broadcast media, just emails from MDA and ALSA to me.<br /><br /><br /><span style="font-weight: bold;">Ken Patterson </span>should have completed his tour yesterday. Ken's <span style="font-weight: bold;">Rolling Over ALS Tour</span> was a <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY_1FKzl5b1h6wGmOgE0cbynOpDdCT6TVlBvPHhzF3nptp7muGBLrsgKmUsFpRgDGa3cMmNSFEDd58U62jqZ9VfyAjuvKUo5bmVxH5tE6EFn2B2TvadCkaTKInPqmKi-9mBnUztA07DEw/s1600-h/van+and+trailer.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY_1FKzl5b1h6wGmOgE0cbynOpDdCT6TVlBvPHhzF3nptp7muGBLrsgKmUsFpRgDGa3cMmNSFEDd58U62jqZ9VfyAjuvKUo5bmVxH5tE6EFn2B2TvadCkaTKInPqmKi-9mBnUztA07DEw/s200/van+and+trailer.jpg" alt="" id="BLOGGER_PHOTO_ID_5199558661976409090" border="0" /></a>courageous action to put some meaning and muscle into awareness. If you are reading his journal on the tour, at least there seems to be one gaggle of folks out there that know of a lone man in a power chair followed by a van and trailer plastered with ALS awareness ribbons. This gaggle slowed down long enough to give this courageous soul that ubiquitous single fingered salute. I say "right on" Ken and Glenda, you both deserve medals.<br /><br /><br /><br /><br />Maybe we will see a new path or a new campaign growing out Advocacy Days in<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3WpwKoS8N1Fni3Bk-VEt9Om0LFSMXEmuIvQBKIfzS80cRWppcmkUUalPOPe46S9L7HLHxD4bpsvZkOtdowCLCRy4Y51KLrmWT00CoAY5hsLxXNye8iXc8VwLo6ZAM9lID3S_oRsY97-I/s1600-h/washdc.jpg"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer; width: 161px; height: 109px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3WpwKoS8N1Fni3Bk-VEt9Om0LFSMXEmuIvQBKIfzS80cRWppcmkUUalPOPe46S9L7HLHxD4bpsvZkOtdowCLCRy4Y51KLrmWT00CoAY5hsLxXNye8iXc8VwLo6ZAM9lID3S_oRsY97-I/s200/washdc.jpg" alt="" id="BLOGGER_PHOTO_ID_5199559164487582738" border="0" /></a> Washington DC this week. Just getting some news on the ALS Registry Bill will be a bright light of discovery shining through the darkness of any news since December. There were rumblings that some of our fellow PALS are planning a visit to the offices of Senator Tom Coburn, the single roadblock to the ALS Registry Bill to see if putting a face on the disease and the rage and frustration will somehow break through his erstwhile roadblock mentality, and maybe the presence of 500 or more PALS on Capitol Hill will stimulate the other 99 Senators that Coburn is thumbing his nose to show some guts and bring the legislation to the floor for an up or down vote. <br /><br />Let's see what we hear and what we see come out of Advocacy Day.ALS Grumpyhttp://www.blogger.com/profile/03197310566321587027noreply@blogger.com1tag:blogger.com,1999:blog-1970942848861675070.post-90659101968421368882008-04-19T14:00:00.002-04:002008-04-19T14:14:47.937-04:00Ken Patterson Is Rolling!<a href="http://www.orlandosentinel.com/orl-als1908apr19,0,7296903.story">Orlando Sentinel Front Page Feature</a><br /><br />I highly recommend all adding encouraging comments to Ken on the Orlando Sentinel story.<br /><br />When I watched the national evening news last night, I thought that it would be totally cool and appropriate for ABC News to honor Ken as Person of the Week when he rolls into DC. CBS News does a similar concept story weekly called "Assignment America."<br /><br />Here's the link to contact ABC News --<br /><a href="http://abcnews.go.com/Site/page?id=3068843">Contact ABC News</a><br />Select "Contact World News with Charles Gibson" to submit a suggestion to honor Ken as Person of the Week.<br /><br /><br />Here's the link for CBS News Assignment America --<br /><a href="http://www.cbsnews.com/sections/assignment_america/main500617.shtml">Contact CBS News Assignment America</a> There is a link there to Submit Your Story to nominate Ken.<br /><br />This is the perfect opportunity to honor one of our heroes whose whole purpose in this ambitious trip is to raise awareness about ALS. He knows the value of some news coverage, so let's try to help him get some national press! In order to get their attention, I think we need to make the messages short and simple... just enough to tweak their journalistic juices to follow Ken's journey.rknt50http://www.blogger.com/profile/03197278009726205789noreply@blogger.com1tag:blogger.com,1999:blog-1970942848861675070.post-8666704853443533132008-04-15T22:07:00.002-04:002008-04-15T22:12:26.935-04:00Keep Posting<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn4raLacLoisfT9F1vErVuCo0V1bOylSRpfrPwAUtSWJKrXVWdhXctgEkRugQCqEESvUnFa3iQj8YC05miLIgTtTmWorovk1oadxu3XVYlwZUCxRmPiLPfl6kzId0865OJtKmuUPRb7Bg/s1600-h/grumpy6.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn4raLacLoisfT9F1vErVuCo0V1bOylSRpfrPwAUtSWJKrXVWdhXctgEkRugQCqEESvUnFa3iQj8YC05miLIgTtTmWorovk1oadxu3XVYlwZUCxRmPiLPfl6kzId0865OJtKmuUPRb7Bg/s200/grumpy6.jpg" alt="" id="BLOGGER_PHOTO_ID_5189660148916181746" border="0" /></a><br /><span style="font-family:verdana;font-size:100%;"><span style="color: rgb(204, 0, 0);">We are doing pretty good with number of stories posted. They all fill in the tapestry of living with ALS as each of our lives are threads woven into that tapestry. </span> <span style="color: rgb(204, 0, 0);">Keep the stories coming. </span> <span style="color: rgb(204, 0, 0);">If anyone hears from any of the celebrities, please shout it loud right here on the blog. </span></span>ALS Grumpyhttp://www.blogger.com/profile/03197310566321587027noreply@blogger.com1tag:blogger.com,1999:blog-1970942848861675070.post-68911629031645782962008-04-15T21:28:00.003-04:002008-04-15T22:05:36.852-04:00My mother's story-ALS took her lifeOur MotherMonday, March 3, 2008 By: Nicole Arredondo .Our mother was diagnosed with ALS in Feb 2006. She had gone for at least a year with symptoms from ALS that when undiagnosed. ALS is hard to diagnose, because it can mimic so many other disease in it's early stages. In Feb of that year she was using a cane and able to move around with no other assistance. Shortly after she was only able to walk using a walker or she would fall. She was unable to hold herself up without assitance. Her speech at that time was beginning to slow down and at times vey difficult to understand. By thanksgiving, she had minimal speech and was completely in wheelchair, unable to move her legs at all and little use of her arms and hands. At the beginning of 2007, my mother lost all of her speech and barely able to move her arm out a little and minimal movement of fingers. In the spring of 2007, we had to insert a feeding tube, because of the dramatic loss of weight she was no longer able to swallow without choking. She had to be assisted in every area of daily living and was not able to move at all on her own or even to communicate. By early summer, she had lost all movement of hands and fingers.Our mother died on September 9, 2007. It is ironic, because that was grandparent's day. She loved her grandson very much. She was his "nanna". I tell this story, because I cannot comprehend some days what she went through or why. I cannot begin to understand what she was thinking or even the pain that she endured as her body deteriorated right before her eyes. She was a beautiful and spunky woman of independence. Always had things done perfectly or worked until it was. She loved with all that she had and made sure that everyone was always taken care of. We love and miss her so much. I will be married in November of this year, she will never see me that day...nor will she ever meet my little babies that I will have. But I will be sure that they know who their nanna was and that they will grow up helping to honor her memory and working to save the lives of those living with ALS and those not yet diagnosed.Thank you for listening to my story. God Bless You All.<br /><br />In loving memory of my mother-Nicole Arredondo in Lexington KY<br /><a href="mailto:nmarredondo75@hotmail.com">nmarredondo75@hotmail.com</a>CoCohttp://www.blogger.com/profile/00361583987234193496noreply@blogger.com1tag:blogger.com,1999:blog-1970942848861675070.post-75043412644856300812008-04-13T16:22:00.002-04:002008-04-13T16:27:57.781-04:00I Hate ALS<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMByjtFgOD9-5U4BUGamQ_96jrJqjA3WYcpFrlOTPITe0pfPsbR234axz4uB7qVUJZcw8qSP0OcVvhtWDPpQhzI4ISAhrenDYEMNOdK3zJ4RRzGSxGM01odeha7aK8asXudMZP672-k61Z/s1600-h/Ethan.jpg"><img id="BLOGGER_PHOTO_ID_5188828542958080802" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMByjtFgOD9-5U4BUGamQ_96jrJqjA3WYcpFrlOTPITe0pfPsbR234axz4uB7qVUJZcw8qSP0OcVvhtWDPpQhzI4ISAhrenDYEMNOdK3zJ4RRzGSxGM01odeha7aK8asXudMZP672-k61Z/s320/Ethan.jpg" border="0" /></a> My friend Ethan was 8 when he wrote this story for a candlelight vigil in May 2007. His grandfather passed away shortly after on July 18th 2007. He has asked me to help him send his story.<br /><div><br />My name is Ethan Dolph, and my grandpa has ALS.<br />I hate ALS<br />It’s sad for someone to have Lou Gehrig’s disease and horrible for family members too. My grandpa chokes when he tries to eat and drink. He falls down. He can’t use his hands to brush his teeth or send me e-mails. He has a feeding tube because he can’t swallow, and the only real food he can eat is applesauce and sometimes hot cereal. He can’t smile.<br />He used to be able to work with wood and help us fix things, and whenever Mommy had trouble, she’d call him. Five years ago, he built me a playhouse. But now he can’t build things like he used to. And sometimes I’m scared of talking to him on the phone because I might not be able to understand him and answer his questions.<br />Grandma has had to call 9-1-1 three or four times to get help when he fell. She is always working hard, because taking care of the house and Grandpa is hard work.<br />We’ve all been sad about him having ALS, and whenever I start talking about it to Mommy, it makes me cry. But the good thing is I still have fun with my grandpa. After we found out he had ALS and would start getting worse, we planned a trip to New York with him. We had lots of fun there. I helped drive his power scooter in Central Park, and we went up the Empire State Building. We go to Spokane on many weekends to see him, and I can hold his hand or we can watch the Speed channel together.<br />I’m also glad that people from the ALS Association in Spokane help Grandma so much. They make food for her and visit. They help get the things my grandpa needs, like a power chair and a lift so Grandma doesn’t have to call the firemen all the time. They help her figure out the insurance papers and which doctors to talk to. And all the people in the group know what ALS is like, so they have lots of good ideas about how to have a better life with ALS.<br />I pray for my grandpa every day. When I grow up I hope that someone will find a cure for ALS. Maybe it will be me.</div>Live out Loud-Jennyhttp://www.blogger.com/profile/10396783134310617592noreply@blogger.com1tag:blogger.com,1999:blog-1970942848861675070.post-16144109905485294512008-04-11T13:20:00.002-04:002008-04-11T13:22:56.648-04:00Dunedin man walks for Lou Gehrig's disease cure<blockquote> </blockquote> <p>By <a rel="nofollow" target="_blank" href="http://www.tampabay.com/writers/article379086.ece"><span class="yshortcuts" id="lw_1207934360_0">Tamara El-Khoury</span></a>, Times Staff Writer<br />Published Thursday, April 10, 2008 8:00 PM</p> <hr noshade="noshade" size="1"> <table class="grtable300" align="right" border="0" cellpadding="0" cellspacing="0" width="302"> <tbody> <tr> <td> <div class="soc_box"> <input id="view" value="print" name="view" type="hidden"><table border="0" cellpadding="0" cellspacing="0" width="100%"> <tbody> <tr> <th colspan="4"><br /></th> </tr><tr> <td class="soc_logo"><br /></td> <td><br /></td> <td class="soc_logo"><br /></td> <td><br /></td></tr> <tr> <form target="_blank" name="printView" action="http://www.tampabay.com/news/health/article451830.ece" onsubmit="return ShowFormWarning()" method="post"></form> <td class="soc_logo"><br /></td> <td><br /></td> <td class="soc_logo"><br /></td> <td><br /></td></tr></tbody></table></div> <div class="soc_box"> <table border="0" cellpadding="0" cellspacing="0" width="100%"> <tbody> <tr> <th valign="top"><br /></th></tr></tbody></table> <div id="socialDiv" style="overflow: hidden; visibility: visible; width: 302px; height: 0px;"> <table border="0" cellpadding="0" cellspacing="0" width="100%"> <tbody> <tr> <td class="soc_logo" valign="top"><a rel="nofollow" target="_blank" href="http://digg.com/submit?phase=2&url=http://www.tampabay.com/news/health/article451830.ece&title=Walking%20the%20walk%20for%20a%20cure&bodytext="><span title="Digg this story!" style="width: 0px; height: 0px;"></span></a><br /></td> <td valign="top"><a rel="nofollow" target="_blank" href="http://digg.com/submit?phase=2&url=http://www.tampabay.com/news/health/article451830.ece&title=Walking%20the%20walk%20for%20a%20cure&bodytext="><span class="yshortcuts" id="lw_1207934360_5">Digg</span></a></td> <td class="soc_logo" valign="top"><a rel="nofollow" target="_blank" href="http://www.facebook.com/share.php?u=http://www.tampabay.com/news/health/article451830.ece"><img alt="Add this story to Facebook" src="http://www.tampabay.com/resource/images/fbook.jpeg" height="16" width="16" /></a> </td> <td valign="top"><a rel="nofollow" target="_blank" href="http://www.facebook.com/share.php?u=http://www.tampabay.com/news/health/article451830.ece"><span class="yshortcuts" id="lw_1207934360_6">Facebook</span></a> </td> <td class="soc_logo" valign="top"><a rel="nofollow" target="_blank" href="http://www.stumbleupon.com/submit?url=http://www.tampabay.com/news/health/article451830.ece&title=Walking%20the%20walk%20for%20a%20cure"><img alt="Submit this story to Stumbleupon" src="http://www.tampabay.com/resource/images/stumble.gif" height="16" width="16" /></a> </td> <td valign="top"><a rel="nofollow" target="_blank" href="http://www.stumbleupon.com/submit?url=http://www.tampabay.com/news/health/article451830.ece&title=Walking%20the%20walk%20for%20a%20cure"><span class="yshortcuts" id="lw_1207934360_7">Stumbleupon</span></a> </td></tr> <tr> <td class="soc_logo" valign="top"><a rel="nofollow" target="_blank" href="http://reddit.com/submit?url=http://www.tampabay.com/news/health/article451830.ece&title=Walking%20the%20walk%20for%20a%20cure"><img alt="Submit this story to Reddit" src="http://www.tampabay.com/resource/images/reddit.gif" height="16" width="16" /></a></td> <td valign="top"><a rel="nofollow" target="_blank" href="http://reddit.com/submit?url=http://www.tampabay.com/news/health/article451830.ece&title=Walking%20the%20walk%20for%20a%20cure"><span class="yshortcuts" id="lw_1207934360_8">Reddit</span></a></td> <td class="soc_logo" valign="top"><a rel="nofollow" target="_blank" href="http://del.icio.us/post?url=http://www.tampabay.com/news/health/article451830.ece&title=Walking%20the%20walk%20for%20a%20cure"><img alt="Submit this story to Del.icio.us" src="http://www.tampabay.com/resource/images/delicious.gif" height="16" width="16" /></a></td> <td valign="top"><a rel="nofollow" target="_blank" href="http://del.icio.us/post?url=http://www.tampabay.com/news/health/article451830.ece&title=Walking%20the%20walk%20for%20a%20cure"><span class="yshortcuts" id="lw_1207934360_9">Del.icio.us</span></a></td> <td class="soc_logo" valign="top"><a rel="nofollow" target="_blank" href="http://www.newsvine.com/_wine/save?popoff=1&u=http://www.tampabay.com/news/health/article451830.ece"><img alt="Submit this story to Newsvine" src="http://www.tampabay.com/resource/images/newsvine.gif" height="16" width="16" /></a></td> <td valign="top"><a rel="nofollow" target="_blank" href="http://www.newsvine.com/_wine/save?popoff=1&u=http://www.tampabay.com/news/health/article451830.ece"><span class="yshortcuts" id="lw_1207934360_10">Newsvine</span></a></td></tr></tbody></table></div></div> </td></tr> <tr> <td> <div class="adtag" id="medrect"><noscript><br /></noscript></div> <table border="0" cellpadding="0" cellspacing="0" width="302"> <tbody> <tr> <td><img alt="Bill Motley, who has Lou Gehrig’s disease, takes his dog, Tessie, out for a walk while his wife, Camille, sees him off." src="http://www.tampabay.com/multimedia/archive/00018/0421156216_18612d.jpg" border="1" height="592" width="300" /></td></tr> <tr> <td> <div class="photo-credit">[JIM DAMASKE | Times]</div> <div class="photo-caption">Bill Motley, who has <span style="border-bottom: 1px dashed rgb(0, 102, 204); cursor: pointer;" class="yshortcuts" id="lw_1207934360_11">Lou Gehrig</span>’s disease, takes his dog, Tessie, out for a walk while his wife, Camille, sees him off.</div> <hr noshade="noshade" size="1"> </td></tr></tbody></table> <div class="apvideobox"> <div id="flashcontent"> </div></div></td></tr></tbody></table> <p>DUNEDIN — Bill Motley served in the <span style="border-bottom: 1px dashed rgb(0, 102, 204); background: transparent none repeat scroll 0% 50%; cursor: pointer; -moz-background-clip: -moz-initial; -moz-background-origin: -moz-initial; -moz-background-inline-policy: -moz-initial;" class="yshortcuts" id="lw_1207934360_12">U.S. Army</span> during the <span style="border-bottom: 1px dashed rgb(0, 102, 204); cursor: pointer;" class="yshortcuts" id="lw_1207934360_13">Vietnam War</span> and later sweated his way through 16 marathons.</p> <p>Today, he considers himself lucky to be able to walk and talk. After all, many of those diagnosed with his disease can't. </p> <p>There will be a time when amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease will take away those abilities. Until then, he's using his voice to spread awareness of ALS and his feet to raise money for research.</p> <p>Saturday, he and his supporters — dubbed the "Motley Crew" — will walk 3.1 miles at Bright House Field in <span style="border-bottom: 1px dashed rgb(0, 102, 204); cursor: pointer;" class="yshortcuts" id="lw_1207934360_14">Clearwater</span> in the ALS Association's annual fundraiser. Hundreds will participate at 2:30 p.m. in the Walk to Defeat ALS, which raises money for research and patient care.</p> <p>Last year, 477 people raised about $100,000. The goal this year is for 600 participants to raise $185,000, said Kamden Alexander, spokeswoman for the ALS Association's Florida Chapter.</p> <p>There is no cure for ALS, a progressive neurodegenerative disease that paralyzes those who have it. Although their minds stay sharp, those with ALS progressively lose their ability to walk, talk, use their arms and eventually the ability to breathe. The disease is considered rare and is found in about two per 100,000 people in the general population.</p> <p>Motley, 59, a <span style="border-bottom: 1px dashed rgb(0, 102, 204); cursor: pointer;" class="yshortcuts" id="lw_1207934360_15">Dunedin</span> resident, worked as a police communications officer for the city for more than 20 years. After the Pinellas County Sheriff's Office took over, he worked in the code enforcement department for <span style="border-bottom: 1px dashed rgb(0, 102, 204); background: transparent none repeat scroll 0% 50%; cursor: pointer; -moz-background-clip: -moz-initial; -moz-background-origin: -moz-initial; -moz-background-inline-policy: -moz-initial;" class="yshortcuts" id="lw_1207934360_16">Dunedin</span> and then Tarpon Springs.</p> <p>He and his wife of 32 years, Camille Motley, have six adult children.</p> <p>Motley began developing symptoms in 2003 when he started dropping his head and couldn't hold his right arm up when running. His left arm was already paralyzed from a motorcycle accident in 1970. Like all patients who are diagnosed with ALS, he was given two to five years to live. But Motley's progression has been slow.</p> <p>"(God's) keeping me around for a reason," Motley said.</p> <p>His marathon days are over. He can't lift a glass or button a shirt, but Motley is still active. His running buddies threw him a surprise party and bought him a racing three-wheeler. He serves on Dunedin's ADA Committee and Environmental Quality Committee. He's part of an ALS support group.</p> <p>"I'm not going to be idle," he said. "I'm going to do as much as I can to make this disease known because it's so rare."</p> <p>He thinks his military service made him more prone to developing ALS and encourages other vets with the disease to file a claim with their local Veterans Administration officer.</p> <p>Although many questions remain about the cause of ALS, studies have shown that those who served in the military are nearly twice as likely to have ALS than those who didn't serve, according to the ALS Association.</p> <p>Motley hasn't lost his competitive spirit. He and another ALS patient are in a challenge to sign up 100 people to their teams.</p> <p>"You've got to have your faith, you've got to stay involved in the community," Motley said. "Focused, focused, focused, focused. Just like running a marathon."</p> <p>He wants people to say he ran a good race.</p> <p><i>Tamara El-Khoury can be reached at <span style="border-bottom: 1px dashed rgb(0, 102, 204); cursor: pointer;" class="yshortcuts" id="lw_1207934360_17">tel-khoury@sptimes.com</span> or (727) 445-4181.</i></p>ALS Grumpyhttp://www.blogger.com/profile/03197310566321587027noreply@blogger.com0tag:blogger.com,1999:blog-1970942848861675070.post-82686129982466748382008-04-10T19:02:00.003-04:002008-04-10T19:09:40.880-04:00Life in reverseApril 13th, 2006. 47 years old. I sat stunned, alone in my primary care doctor’s office as she repeated the dx of ALS. After a few years of tests and MRI’s to figure out why my right side was diminishing in strength, this was what it had come to. She appeared to be as stunned as I.<br />After a lifetime of establishing myself as a driven, determined, and fiercely independent individual, I was being forced to face a reality of slowly losing every ounce of dignity and independence until I would be totally dependent on everyone around me. Being told that no matter how much I drew upon my stubborn determined strength I had nurtured within, it would be and indeed was happening anyway.<br />I had been raised surrounded by a great supportive family. 4 brothers, 2 sisters, and 2 parents of German heritage proud to be able to outrun and outlive any tragedy sent our way. I was the third child, and had lived the most colorful life of any of my brothers and sisters. Our parents encouraged and exemplified a strong work ethic. I had always been taught never to let the obstacles get in my way. If you come up against something you find in the safest and fastest way over it or around it. There was always at least one way. So naturally, being told there was no way around ALS was probably the most difficult thing that I would ever encounter in my lifetime. I was being forced to reverse every life lesson ever learned.<br />Remember the aftermath of 9/11? Remember how stunned we all were, and how angry that this could happen to our nation, and how numb we were? Then slowly the feeling of camaraderie overcame every one of us. No matter how angry we were, we could not help but to be inspired by what it brought out of each and every one of us. Strangers comforted strangers-the poor reached out to the rich. The famous stood shoulder to shoulder with street people. Slowly across our nation we were unified by tragedy. We were fueled by knowing that there would be light at the end of that tunnel, that we would one day began to heal. Then slowly it began. Little by little we returned to our lives, and a part of us relinquished that anger and pain. Sometimes it seems that we may have almost forgotten.<br />My observation since my own diagnosis of ALS is that “PALS” (patients of ALS) are stuck in our own “9/11”. We were put there when we were given the dx of ALS. We reach out to each other to keep one another afloat. We comfort a wife when her husband's life is snatched by the hostile disease ALS. We remind each other daily that we are not alone, that there are many of us who know this pain. We are in fact all we do have to reach out to. We do not see the light at the end of the tunnel-for there is none. As in no cure, no treatment, no remission. Imagine being stuck there. We have been unable to get the attention needed from our government, from our media and from our peers. Instead we find strength from those left behind, and we learn from their struggles. Like vultures we are forced to survive on the remnants of their loss. While I would not for a moment trade the golden friendships I have forged with these people, the most courageous people I’ve ever met in my life, I would still like to see the day when no one has to suffer from the merciless claws of ALS. Please do your part to help us gather some attention for this orphan disease.<br />Sincerely,<br />Jenny Hoff<br />Spokane WashingtonLive out Loud-Jennyhttp://www.blogger.com/profile/10396783134310617592noreply@blogger.com0tag:blogger.com,1999:blog-1970942848861675070.post-89230972307198887952008-04-05T23:58:00.003-04:002008-04-06T00:04:38.164-04:00Keep on posting, please<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5MMnqeJ_Fzgkm9iNnKppGPXP8LxfEt3hyphenhyphenwC2QJMPsIZtL7K4cKGIwWGrJz9wncuO_m_0wiHIhyphenhyphen4X1TKK-67QHYfWoIk0yabJf493-qRgbHbr__tspwz0h8r-jW0kLjjbjN0hN0KTjkwY/s1600-h/grumpy2.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5MMnqeJ_Fzgkm9iNnKppGPXP8LxfEt3hyphenhyphenwC2QJMPsIZtL7K4cKGIwWGrJz9wncuO_m_0wiHIhyphenhyphen4X1TKK-67QHYfWoIk0yabJf493-qRgbHbr__tspwz0h8r-jW0kLjjbjN0hN0KTjkwY/s200/grumpy2.jpg" alt="" id="BLOGGER_PHOTO_ID_5185978030236816242" border="0" /></a><br /><span style="font-family: verdana; color: rgb(255, 0, 0);">We now have 38 who have indicated they wish to be authors. We have a ways to go to get all we need to make an impact. If you haven't posted your story yet, or emailed it to the celebrities, it is not too late. Make it a project to complete by Tuesday. We can only get our message out if we band together. </span>ALS Grumpyhttp://www.blogger.com/profile/03197310566321587027noreply@blogger.com1tag:blogger.com,1999:blog-1970942848861675070.post-2997641989137953792008-04-05T01:32:00.002-04:002008-04-05T02:24:37.695-04:00Jay's storyMy husband is a composer, a teacher, an inventor, an artist, a pianist, and an avid prankster. Before ALS attacked his body, laughter permeated from our household, and music could be heard at all hours of the night. I remember initially, the nights he would awaken with horrible cramps in his legs, and rushing to buy calcium tablets thinking it was some kind of vitamin deficiency. I remember that a man who could type 150 wpm on the computer keyboard, and in the next instant sit down and play a mean Rachmonanoff, was suddenly unable to open a ketchup packet. I remember the fear that me gripped when the doctors starting throwing around the acronym "ALS". I had done my research, and I knew what it meant...3 to 5 years, and a horrible piece by piece deterioration of his physical body, ending in death, most likely by suffocation.When we received the news, Jay sat quietly staring. It was Fall of 2005, and by Christmas, he was using a cane. He watched the girls unwrapping their gifts and a deep sadness gripped him. "How many more Christmas's?" he wondered... By April of 2006, he was in a wheelchair, and by the following Fall, he was unable to play his beloved piano. The year 2007 brought the full time use of a breathing device called a Bi-pap machine and a feeding tube and no more of his favorite beef ribs. It was also the end of family dinners...By Christmas 2007, he was experiencing respiratory failure. In January of 2008, Jay was ventilated, effectively taking all of his speech and leaving him completely dependant on a machine for his life.We do not have the funds to hire full time nursing care, so my daughter's and myself have learned the ins and outs of vent care, tube feeding, changing dressings, transferring, and generally caring for a completely paralyzed ventilator dependant person. Some nights, no one sleeps. Often, we hold each other and cry at what these two years have wrought, but most of all, we are grateful. Grateful for each day that we are together and what it has taught us.Jay has never lost his fighting spirit. He has composed an entire children's musical using a software program and one functioning finger. He is quickly learning an eyegaze system, so that when the use of his last remaining finger leaves him, he will still be able to communicate using his eyes and a computer keyboard. He is now composing a string quartet, and completing his 9th time reading through the Bible. He is his daughter's hero, and my beloved. We have been given two years to learn a lot about each other and the love and compassion of those around us. I will not pretend that the suffering and losses are not huge, but I will say, that we have chosen to walk this road with a positive attitude and peace in our hearts. We are human, and we grieve, but we know that something far greater than us is at work here and that the human spirit is far stronger than we think it is.The best outcome, would be a cure. My husband would be able to walk his girls down the aisle on their wedding days. He would see his younger daughter's graduate high school and his older daughter's graduate college. He would grow old with me in the small town we always dreamed of living in together. In my dreams, I see a cure for this disease, and a monster being destroyed. I see people with ravaged bodies whole again... I see my husband.. able to hug me and tell me in his precious voice, that he loves me.TJ ThompsonCALS to Jay Thompsontjhttp://www.blogger.com/profile/12500578706866400995noreply@blogger.com1tag:blogger.com,1999:blog-1970942848861675070.post-33696183168625857582008-04-01T23:58:00.001-04:002008-04-02T00:09:50.068-04:00Paula Ann Jenkins 61<br />Diagnosed with ALS 4/07 Passed away 2/08<br /><br />Left behind 3 adult children 39, 38, and 28 years old. 3 grandsons, one granddaughter (2 months old), 1 mother, many friends, and 2 cats<br /><br /><br />To Whom It May Concern:<br /><br />Obviously…letter writing campaign going on-wanted to give my 2 cents worth!<br /><br />I keep re-edting this letter and am having a really hard time getting it out because I keep trying to find the words to sum up the craziest thing that ever happened to me. I'll never be left without a story to tell that is for sure. You want a funny story, sad, pathetic, inspirational? Well it all happened and it all happened in one year. <br /><br />A year ago today my mother was alive and in the midst of tests and «I don't know what's wrong with yous». At this time last year we had no idea that the rest of our lives were going to be spent without her. And I had no idea that my sister would not be talking to me! Life changes on a dime.<br /><br />My mother passed away 10 months after she was diagnosed. Some people like to call what we've been through a journey and that is not being trite or overdramatic -I feel like I've been through a war I've done things I thought I would never have to do, made decisions that I never dreamed would have to be made. <br /><br />When my mom was finally diagnosed I expected my mother to have the opportunity to fight this disease with every resource available. <br /><br />I did not expect:<br /><br />• That my mother’s life would be shortened because we didn’t have a wheelchair accessible van to get to the better doctor.<br /><br />• That a terminally ill person would have to wait 4 months to see a doctor! THAT is disgusting! I had to beg and plead for my mother to get medical attention from day one to day last. She was given the worst care and bad advice from people with degrees every step of the way!<br /><br />• I did not expect that my mom would have to sit in her own feces for hours because her morning health aide overslept, and her afternoon aide just decided not to show up for work that day!<br />.<br /><br />Lest you think I’m a whiner I’ll give you the up sides.<br /><br />• My mom had a rough time in her life -like everybody else some was her own doing some just bad luck. She lived with a lot of fear and frustration. All of that went away when she got this. I am proud of my mother she died with dignity, strength and courage.<br /><br />• MANY MANY people went way above and beyond for my mother. These stories are the ones that made it so hard to keep this letter to just one page. I want to give everybody their due and tell about each person and their kindness, generosity, and compassion. <br /><br />• My mom and I laughed our asses off on many occasions. I hold the record -6 minutes! to whip a wheelchair out of the trunk – lift my mom INTO the wheelchair and onto the toilet at the 7 Eleven!<br /><br /><br />AND I never realized until now:<br /><br />That if I live to be 78 years old I will have lived more than half of my life without my mother in it!! And that is what this is about. Some attention needs to be paid to ALS, to find a cure, a treatment, a test. Please read all of the e-mails believe me you will be blown away by the stories I know I have. <br /><br />Thank you<br />Stacey LiskStacey Liskhttp://www.blogger.com/profile/04925520495312546052noreply@blogger.com1tag:blogger.com,1999:blog-1970942848861675070.post-73713090671039389172008-04-01T13:04:00.002-04:002008-04-01T18:37:39.088-04:00My letter to OprahDear Oprah,<br /><br />I have heard you say many times on your show, “everyone has a story to tell”. I’d like to share with you mine.<br /><br />I could tell you about the year 1992 when my husband and I lost our King Crab boat in the Bering Sea of Alaska. It was out fishing crab, sank due to bad weather, and all 6 people,were lost at sea. My husband and I supported each other as we worked our way thru the despair.<br /><br />I could tell you about the years 1996, 1997, and 1998 when I was diagnosed with a rare form of cancer, cancer of the appendix, and fought hard to live despite doing many rounds of chemo that tried to kill me. My husband kept me in fighting shape and took care of our kids, who were 4 and 6 when I was diagnosed.<br /><br />I could tell you about the year 1997, when in the midst of my cancer fight; my best friend was killed in a freak boating accident. She was 36. My husband kept me literally kept me standing thru the shocking and sudden loss of my Madeleine.<br /><br />But instead, I’m going to tell you about the year 2005. You see, that was the year my husband was diagnosed with ALS-Lou Gehrig’s disease. ALS is a horrible, rotten, no good disease that will eventually rob my husband of all movement in his body, breathing included. Imagine if you can my husband, my handsome, barrel chested, physical, commercial fishing husband struggling to pick up a toothbrush to brush his teeth, or a hairbrush to brush his hair. This same wonderful person, who 5 years ago was helping to move 700 pound crab pots around the boat deck, now must devise clever ways to get a fork to his mouth because he doesn’t have the muscle strength to lift that fork. So, now, it’s my turn to stand and support my husband and fight hard once again.<br /><br />I am writing to you in hopes of bringing awareness to this insidious disease. There are approximately 30,000 people living with this disease in the US. Most have a life span of 2-5 years. There is one medication that can help extend life 2-6 months, yes months. ALS is fast and cruel in its progression. A National ALS registry is on the cusp of fruition. This would allow the disease to be tracked, trends spotted, new beneficial drugs to be discovered, and ultimately a cure found. However, the bill has been blocked by one lone US Senator from Oklahoma. Maybe with your national media awareness that could change.<br /><br />ALS patients are probably some of the most selfless, shining spirits you could meet. They face incredible odds and challenges everyday. Talk about “giving big”! ALS patients “give big” in many ways. Some live in wheelchairs to keep them mobile; some live with ventilators to help them breathe, and some speak with communication devices to keep their voices heard. But it is the spirit of the ALS patient (PALS) that “gives big” back to many many people. The challenges they face, make those of us who care for PALS realize that life is not about the big things, the cars, the money the glamour, but instead living life with love, laughter and compassion. While physically they have “given big”, the soul of the ALS spirit seems to shines bigger and brighter each day they live, breathe walk and talk.<br /><br />May is National ALS Awareness month. One of our PALS is working to raise awareness in a big way. He is going to ride his wheelchair from Florida to Washington DC! You can check out his “giving big” spirit at <a href="http://www.rolloverals.org/">http://www.rolloverals.org/</a> Most days, everything about ALS is hard. Maybe with your help, we could have one day, where things seemed a little easier.<br />Thank you so much for your time.<br />Jenny Gore DwyerJennyhttp://www.blogger.com/profile/15376206159459735584noreply@blogger.com3tag:blogger.com,1999:blog-1970942848861675070.post-39383637777939211092008-04-01T12:13:00.002-04:002008-04-01T12:31:28.652-04:00All for what?<p><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_5iaQOGSnPic/R_H_mse9PyI/AAAAAAAAAG0/oYQGEpMJAwY/s1600-h/Photograph.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer;" src="http://3.bp.blogspot.com/_5iaQOGSnPic/R_H_mse9PyI/AAAAAAAAAG0/oYQGEpMJAwY/s200/Photograph.jpg" alt="" id="BLOGGER_PHOTO_ID_5184205686321266466" border="0" /></a><span style="font-family: trebuchet ms;">Sunday evening, March 30, 2008, my sister Ruth was admitted to the hospice wing at our local hospital to stabilize her meds and move into their hospice house to live out her final days. She was only diagnosed with ALS in January, three short months ago. It is a scary fiery crash. <br /><br />She signed a Do Not Resuscitate order and will not get the feeding tube that can keep her alive. I guess she is tired of fighting this, and I don't blame her.</span><br /><br /><span style="font-family: trebuchet ms;">I have failed her........I couldn't save her, I couldn't fix "it", I couldn't get what she needed to stay ahead of this.</span></p><p><span style="font-family: trebuchet ms;"></span><br /><span style="font-family: trebuchet ms;">It is best that I truly learn what that means and let her go........this is my last attempt at ALS advocacy, albeit, it is to surrender.<br /><br />The only thing that I can hope for now is that someday, ALS will wreak it's havoc on some influential person and their famous family.<br /><br />Someday, ALS will kill the "wrong person", then something will be done to help people with ALS and their families all over the world who suffer mercilessly with the freight-train-like ravages of this disease.<br /><br />Dear God; it just makes me want to vomit to even think that........</span></p><p><span style="font-family: trebuchet ms;"> Pat Harbachuk (CALS, sister) to Ruth Rogers</span><br /><span style="font-family: arial;"></span></p><p><span style="font-family: arial;"></span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_5iaQOGSnPic/R_H-oMe9PxI/AAAAAAAAAGs/ZlBjDN8K0Uk/s1600-h/DSCF0014.JPG"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer;" src="http://1.bp.blogspot.com/_5iaQOGSnPic/R_H-oMe9PxI/AAAAAAAAAGs/ZlBjDN8K0Uk/s200/DSCF0014.JPG" alt="" id="BLOGGER_PHOTO_ID_5184204612579442450" border="0" /></a><span style="font-family: trebuchet ms;">My sister Ruth went from the photo at the top to the one at the bottom in three short months. It is frightening.</span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_5iaQOGSnPic/R_H-oMe9PxI/AAAAAAAAAGs/ZlBjDN8K0Uk/s1600-h/DSCF0014.JPG"><br /></a></p>ALS Grumpyhttp://www.blogger.com/profile/03197310566321587027noreply@blogger.com1tag:blogger.com,1999:blog-1970942848861675070.post-78380689741111014822008-03-31T15:30:00.005-04:002008-03-31T22:13:55.736-04:00Celebrity Addresses<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1McIgO8oh1nktU3CxnXL2OUiVhyphenhyphenbdWkquOOpLKE-q5Nfg0D6DMP1QsXJ2V4CxjJW4ifwczO7LDxpAGL-JVqYqlQhBU8gqw6B-97biA1GfqgYO5zas-QD9looQG1AzbrxYTHZOimxnma8/s1600-h/tows_photoid_top.gif"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1McIgO8oh1nktU3CxnXL2OUiVhyphenhyphenbdWkquOOpLKE-q5Nfg0D6DMP1QsXJ2V4CxjJW4ifwczO7LDxpAGL-JVqYqlQhBU8gqw6B-97biA1GfqgYO5zas-QD9looQG1AzbrxYTHZOimxnma8/s200/tows_photoid_top.gif" alt="" id="BLOGGER_PHOTO_ID_5183993506237961042" border="0" /></a><br /><span style="color: rgb(153, 51, 0);font-family:verdana;" >As my Daddy used to say, "It looks easy but it ain't." And that explains the methods to reach the four celebrities. Some require you to use a form on their website and the address below will bring you to that form. It requires personal information, so each of you will have to fill them out. I tested it and found that it works fine. </span><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdGTdE9_MyaUm9kEw7HB8NRX_3blgiEYXEn0Yoqs_WOnhsmT2PYZhby1Q8Qi_xWUKiSuAuUzF8WBCYxnlG8eCQhxTkfrdKvX5y3X_cve_HecuUScB-xKm6sggvPmIDOJWVaWZ4NgYHKN0/s1600-h/king.larry.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdGTdE9_MyaUm9kEw7HB8NRX_3blgiEYXEn0Yoqs_WOnhsmT2PYZhby1Q8Qi_xWUKiSuAuUzF8WBCYxnlG8eCQhxTkfrdKvX5y3X_cve_HecuUScB-xKm6sggvPmIDOJWVaWZ4NgYHKN0/s200/king.larry.jpg" alt="" id="BLOGGER_PHOTO_ID_5184094180271379298" border="0" /></a><br /><span style="color: rgb(153, 51, 0);font-family:verdana;" >I used a simple cut and past operation. I highlighted the letter I had written and copied the entire text that I wanted to send. Then in each of the forms you merely have to paste that text in the appropriate "Subject" box. It took my entire text with no apparent problem. </span><br /><br /><span style="color: rgb(153, 51, 0);font-family:verdana;" >Using the forms, it is not possible to send photos. For Ellen, I found an alternate email address that should allow photos to be attached or included.</span><br /><br /><span style="color: rgb(153, 51, 0);font-family:verdana;" >I also found two snail mail addresses. Oprah clearly states they do not accept snail mail. </span><br /><br /><span style="color: rgb(153, 51, 0);font-family:verdana;" >So tomorrow is the day to let your emails fly. I got acknowledgments from each of them. </span><br /><br /><span style="color: rgb(153, 51, 0);font-family:verdana;" >The bad news is that Montel is broadcasting his last live show in late September and will go off the air. They still said my email was being referred to the producers, so all may no be lost.</span><br /><br /><span style="color: rgb(153, 51, 0);font-family:verdana;" >Good luck my friends and fellow PALS and CALS.</span><br /><br /><br /><p class="MsoNormal"><b style=""><span style="font-size:130%;">Oprah</span><o:p></o:p></b></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><a href="http://www.oprah.com/email/reach/email_showideas.jhtml">http://www.oprah.com/email/reach/email_showideas.jhtml</a></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><b style=""><span style="font-size:130%;">Larry King Live</span><o:p></o:p></b></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><a href="http://www.cnn.com/feedback/forms/form5.html?12">http://www.cnn.com/feedback/forms/form5.html?12</a></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><b style=""><span style="font-size:130%;">Montel Williams</span><o:p></o:p></b></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><a href="http://www.montelshow.com/mail/">http://www.montelshow.com/mail/</a></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Viewer Services<br />The Montel Williams Show<br /><st1:address st="on"><st1:street st="on">433 West 53rd St.</st1:street><br /><st1:city st="on">New York</st1:city>, <st1:state st="on">NY</st1:state> <st1:postalcode st="on">10019</st1:postalcode></st1:address></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><b style=""><span style="font-size:130%;">Ellen DeGeneres</span><o:p></o:p></b></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><a href="http://ellen.warnerbros.com/show/respond/?PlugID=10">http://ellen.warnerbros.com/show/respond/?PlugID=10</a></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><a href="http://ellen.warnerbros.com/">http://ellen.warnerbros.com/</a></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">The Ellen DeGeneres Show<br /><st1:address st="on"><st1:street st="on">PO Box 7788</st1:street><br /><st1:city st="on">Burbank</st1:city>, <st1:state st="on">CA</st1:state> <st1:postalcode st="on">91523</st1:postalcode></st1:address><br />Attn: Fan Mail</p>ALS Grumpyhttp://www.blogger.com/profile/03197310566321587027noreply@blogger.com0tag:blogger.com,1999:blog-1970942848861675070.post-89690648952343161602008-03-31T11:12:00.006-04:002008-03-31T11:28:57.170-04:00A Young Woman's Story About Living With ALS<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8QEl4ywITVvoU14NJ7eFhyaZ7lAdUgkSIG0zyGWWKcGFEyylsSNKyDSi5-PdBAZXxOn3aRCD84y1xLM0Mh1cX53NEG0Hs2Ib7YM9ymBQ3KxqeVETGEyv3y_LgcwRTb4fGUaqG3ziz_jxr/s1600-h/Kristen+.jpg"><img id="BLOGGER_PHOTO_ID_5183926409307998658" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8QEl4ywITVvoU14NJ7eFhyaZ7lAdUgkSIG0zyGWWKcGFEyylsSNKyDSi5-PdBAZXxOn3aRCD84y1xLM0Mh1cX53NEG0Hs2Ib7YM9ymBQ3KxqeVETGEyv3y_LgcwRTb4fGUaqG3ziz_jxr/s320/Kristen+.jpg" border="0" /></a><br /><div>My name is Kristen. I am a young, energetic, newlywed. I am a dental assistant, certified nurse’s assistant and a nursing student. My husband and I enjoy spending time with family and friends, playing softball and volleyball, hunting, fishing and vacationing in northern Wisconsin. We dream about having a family and growing old together. Our future is bright!<br /><br />That was me before the fall of 2000 when everything changed. I started walking strange and was losing dexterity in my fingers. After lots of tests and different doctors in February of 2001 I ended up in the Neurology department at the Mayo Clinic in Minnesota. When you’re from the Midwest you know it’s serious if you have to go to Mayo. They don’t mess around. We were told to prepare to spend a week there. They would continue to do tests until a diagnosis was made. We spent less than a day at Mayo and received the worst news and what should have been the best news of our lives. I left Mayo that day with the diagnosis of a terminal illness, ALS, and the shocking news I was going to be a mother. I was 24 years old.<br /><br />It was a long 9 months. I was given 2-5 years to live. How was my husband going to raise a baby, take care of me and continue with his job as an electrician?<br /><br />Fast forward 7 year and all I can say is God had a much different plan for our lives and time has a way of working things out. My husband has stood by me through good and bad. We have a beautiful 6 year old son. I started my own business putting 8mm reels, VHS tapes, pictures and slides on DVD. I’ve outlived the 2-5 years I was given. Over all I have a pretty good life. That doesn’t mean me or my family have an easy life. ALS is a harsh and ugly disease that affects the entire family. A lot of people walk away because for one reason or another they aren’t able to deal with the reality of ALS. I am very lucky my Mom was able to retire and become my primary caregiver along with my husband. The only functional movement I have left is my head and neck. I’m also able to speak a little. Otherwise everything is done for me.<br /><br />One thing people have a hard time with is my quality of life. They don’t understand how I consider what I have to be a good and productive life. I learned long ago not dwell on the losses and be thankful for what I have. I spend everyday watching our son grow. That is my reason to keep going.<br /><br />My gripe is insurance companies be it Medicare, Medicaid or private insurance. It’s a constant battle to get them to pay for the things I need. I’m fortunate; my dad is very familiar with how the insurance companies work. He keeps pushing until they finally pay. The latest challenge has been getting my electric wheelchair adapted so I can drive it by myself. I have been waiting 4 months for insurance to approve the new parts. In the mean time I only have my manual wheelchair. Which means when I actually get out and go to Wal-Mart my mom has to push me with one hand and the cart with the other. It shouldn’t have to be so hard to get the things we need covered by insurance and my problem is minor compared to some of the horror stories I’ve heard.<br /><br />We, as a community of people “living with ALS”, need you to help raise awareness about ALS. There is no celebrity who has been touched by ALS to make our disease a household name like Cancer or Parkinson’s disease. Please help give Amyotrophic Lateral Sclerosis a face.<br /><br />Sincerely,<br />Kristen Sauer <a href="mailto:sauergirl@milwpc.com">sauergirl@milwpc.com</a> </div>Kristenhttp://www.blogger.com/profile/00280040982351305628noreply@blogger.com19tag:blogger.com,1999:blog-1970942848861675070.post-47424303511774054012008-03-30T17:45:00.004-04:002008-04-04T12:25:13.127-04:00Madelyn H. aka Lou G. and Me<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij5p0cqreBX-Q6BeyXJM9eglOQWSp4A76vcQYNAdXEublXLjFXAzJV6TfWxmfm00V2h6pJ4J_w_WYl_mppZiL-TjuDlWxr0yAEVGXhax0irUzhMkA8H1ShMVnAL90xXYMl1O7istmjDE0/s1600-h/Queen_Maddy.jpg"><img id="BLOGGER_PHOTO_ID_5185421498454977090" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij5p0cqreBX-Q6BeyXJM9eglOQWSp4A76vcQYNAdXEublXLjFXAzJV6TfWxmfm00V2h6pJ4J_w_WYl_mppZiL-TjuDlWxr0yAEVGXhax0irUzhMkA8H1ShMVnAL90xXYMl1O7istmjDE0/s320/Queen_Maddy.jpg" border="0" /></a><br /><div><strong></strong></div><br /><div><strong></strong></div><br /><div><strong>Hi, my name is Madelyn and was diagnosed with <span class="blsp-spelling-error" id="SPELLING_ERROR_0">ALS</span> at the age of 48.</strong></div><div><strong></strong> </div><div><strong>Often referred to as a "princess" i had fun no matter what!</strong><br /></div><div><strong></strong><strong>"Do you have a credit card for your purchase..let me run that for you...<span class="blsp-spelling-error" id="SPELLING_ERROR_0"><span class="blsp-spelling-error" id="SPELLING_ERROR_0">oops</span></span> I should try out for the Yankees with a throw like that!" When really I was hiding my <span class="blsp-spelling-error" id="SPELLING_ERROR_1"><span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">embarrassment</span></span> of how that <span class="blsp-spelling-error" id="SPELLING_ERROR_2"><span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">credit</span></span> card ended up 50 feet away. </strong></div><br /><div><strong>After several times of <span class="blsp-spelling-error" id="SPELLING_ERROR_3"><span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">winging</span></span> credit cards across the way I went and got my hands checked out..this was in February of 2005...carpal <span class="blsp-spelling-error" id="SPELLING_ERROR_4"><span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">tunnel</span></span> and ulnar nerve damage in both..hmmm....both...ok lets get theses fixed. Left done first...a <span class="blsp-spelling-error" id="SPELLING_ERROR_5"><span class="blsp-spelling-error" id="SPELLING_ERROR_5"><span class="blsp-spelling-error" id="SPELLING_ERROR_1">ok</span></span></span>...now we do right...2 weeks later still no right response..very weak, unable to grasp anything...lets do occupational therapy...6<span class="blsp-spelling-error" id="SPELLING_ERROR_6"><span class="blsp-spelling-error" id="SPELLING_ERROR_6"><span class="blsp-spelling-error" id="SPELLING_ERROR_2">mths</span></span></span> in tears the doc says I <span class="blsp-spelling-error" id="SPELLING_ERROR_7"><span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">haven't</span></span> <span class="blsp-spelling-error" id="SPELLING_ERROR_3">giv</span><span class="blsp-spelling-error" id="SPELLING_ERROR_8"><span class="blsp-spelling-error" id="SPELLING_ERROR_8">en</span></span> enough healing time...more occupational therapy, but changed therapist..within 4 visits the <span class="blsp-spelling-error" id="SPELLING_ERROR_9"><span class="blsp-spelling-corrected" id="SPELLING_ERROR_9">therapists</span></span> says to me..here is the name of a hand surgeon see him asap. <span class="blsp-spelling-error" id="SPELLING_ERROR_10"><span class="blsp-spelling-error" id="SPELLING_ERROR_10"><span class="blsp-spelling-error" id="SPELLING_ERROR_4">ok</span></span></span>..<span class="blsp-spelling-error" id="SPELLING_ERROR_11"><span class="blsp-spelling-error" id="SPELLING_ERROR_11"><span class="blsp-spelling-error" id="SPELLING_ERROR_5">i'm</span></span></span> scared...</strong><br /></div><br /><div><strong>the new doc had his person do an <span class="blsp-spelling-error" id="SPELLING_ERROR_12"><span class="blsp-spelling-error" id="SPELLING_ERROR_12"><span class="blsp-spelling-error" id="SPELLING_ERROR_6">emg</span>..</span></span>.2.5 hours long head to toes...Both docs called me a day later...and said we have an appointment set up for you for a neurologist. Me and hubby get to our appointment to have doc and a student come in..doc looks <span class="blsp-spelling-error" id="SPELLING_ERROR_13"><span class="blsp-spelling-error" id="SPELLING_ERROR_13"><span class="blsp-spelling-error" id="SPELLING_ERROR_7">thru</span></span></span> the file and says "you have L<span class="blsp-spelling-error" id="SPELLING_ERROR_14"><span class="blsp-spelling-error" id="SPELLING_ERROR_14"><span class="blsp-spelling-error" id="SPELLING_ERROR_8">ou</span></span></span> G<span class="blsp-spelling-error" id="SPELLING_ERROR_15"><span class="blsp-spelling-error" id="SPELLING_ERROR_15"><span class="blsp-spelling-error" id="SPELLING_ERROR_9">ehrigs</span></span></span> disease/<span class="blsp-spelling-error" id="SPELLING_ERROR_10">ALS</span>... I suggest you get your affairs in order and get shit done fast..oh yeah eat whatever you want while you can...see ya in six weeks as he's walking out the door. Even his student sat their with his jaw open.</strong> <strong> I immediately sought out a neurologist familiar with <span class="blsp-spelling-error" id="SPELLING_ERROR_11">ALS</span>.</strong></div><br /><div><strong>My grandson was born Sept.7<span class="blsp-spelling-error" id="SPELLING_ERROR_12">th</span>, I got this <span class="blsp-spelling-error" id="SPELLING_ERROR_17"><span class="blsp-spelling-error" id="SPELLING_ERROR_17"><span class="blsp-spelling-error" id="SPELLING_ERROR_13">dx</span></span></span> in <span class="blsp-spelling-error" id="SPELLING_ERROR_18"><span class="blsp-spelling-corrected" id="SPELLING_ERROR_18">Oct</span></span>..had to put my 13 yr old dog to sleep in <span class="blsp-spelling-error" id="SPELLING_ERROR_19"><span class="blsp-spelling-corrected" id="SPELLING_ERROR_19">Dec</span></span> and by end of <span class="blsp-spelling-error" id="SPELLING_ERROR_20"><span class="blsp-spelling-corrected" id="SPELLING_ERROR_20">Jan</span></span> my daughter and grandson ran off with an army guy and I <span class="blsp-spelling-error" id="SPELLING_ERROR_21"><span class="blsp-spelling-corrected" id="SPELLING_ERROR_21">didn't</span></span> see or hear from her for over 8 months.</strong><br /><br /></div><br /><div><strong>Getting out of bed much less going to work were not a priority. </strong><br /><br /></div><br /><div><strong>I was born and raised in New York..a <span class="blsp-spelling-error" id="SPELLING_ERROR_22"><span class="blsp-spelling-corrected" id="SPELLING_ERROR_22">Yankees</span></span> fan since I was knee high to a coke bottle..new all about Lou Gehrig...my hubby and i even had a sports room in our house my side was <span class="blsp-spelling-error" id="SPELLING_ERROR_23"><span class="blsp-spelling-corrected" id="SPELLING_ERROR_23">Yankees</span></span> <span class="blsp-spelling-error" id="SPELLING_ERROR_24"><span class="blsp-spelling-corrected" id="SPELLING_ERROR_24">memorabilia</span></span> but I have since taken it down. It became an <span class="blsp-spelling-error" id="SPELLING_ERROR_14">erie</span> sense of coincidence for me.</strong><br /><br /></div><br /><div><strong>In the last two years I have had to give up control, of everything...personal, physical and emotional. I gained a new respect for life and my <span class="blsp-spelling-error" id="SPELLING_ERROR_15">moto</span> became "Live hard, live fast" and a greater depth of love. My daughter and grandson are back in my life and my hubby/caregiver is the loving man I always new he was. He never new what a checkbook was much less sorting whites and colors was till this event. I refer to it as an event because this diagnosis took our lives as we knew them and never gave it back.</strong><br /><br /></div><br /><div><strong>Friends..came and went...family came and waited, for what I have no idea. </strong><br /><br /></div><br /><div><strong>Then..what do u mean I cant stay home alone cause I fell....whats the big deal? After 5 falls I agreed. This is where the fun begins. </strong><br /><br /></div><br /><div><strong>What do you mean you don't provide coverage for this or that. Who's supposed to help me while hubby <span class="blsp-spelling-error" id="SPELLING_ERROR_25">tries</span> to work? Yup...I've got family all over, but not here where I am. Why wont anyone HELP ME!</strong></div><div><strong></strong><br /> </div><div><strong>With every hint of a cure, I wonder could this be it, could this be the cure? The one thing that will get me past the 5 year mark....</strong></div><br /><br /><div><strong>So I sit here watching everything go by me. Filling my time being as productive as I can and thank God for His arms around me.</strong></div><br /><br /><br /><div><strong></strong></div>Madelyn H.http://www.blogger.com/profile/01280452197556451392noreply@blogger.com1tag:blogger.com,1999:blog-1970942848861675070.post-10678705360184445542008-03-30T01:27:00.005-04:002008-04-01T17:11:51.591-04:00ALS and Me<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjljKlYsLP08est0pNWs2Ij9SE-x_9AQV8gRrZSoOnS-Mv60JzkYNy0ZgsgveJ7Ulzeamu_zz6MQoDkxShbP6RpOpI112XhbhckDy5hV9x3FCIlVO0wlIuvKWmA9Vs5D45AP6Pj9fzUaTE_/s1600-h/IMGP2401.JPG"><img id="BLOGGER_PHOTO_ID_5183407705651260338" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjljKlYsLP08est0pNWs2Ij9SE-x_9AQV8gRrZSoOnS-Mv60JzkYNy0ZgsgveJ7Ulzeamu_zz6MQoDkxShbP6RpOpI112XhbhckDy5hV9x3FCIlVO0wlIuvKWmA9Vs5D45AP6Pj9fzUaTE_/s320/IMGP2401.JPG" border="0" /></a><br /><div></div><br /><div>ALS is a devastating disease that cripples the body by affecting the lower and upper motor neurons. In my case, it has started slowly with weaknesses of my right hand. It has now affected my breathing (with a need for a breathing machine), swallowing of liquids, and some speech. It has also given me leg pain, spasms, a slower gait. It usually strikes ages from 40 to 70. I’m 45 years old, with two teenage boys who still need their mother to drive them around. I use a steering wheel knob to drive my car.<br /><br />With this diagnosis, I am expected to be completely paralyzed before reaching my death. Prior to this formal diagnosis in late 2005, I worked in hospitals as a respiratory therapist, helping both young and old patients with their breathing issues. It caught me completely off guard when I found out I had ALS and that this disease can actually kill me within two to five years.<br /><br />I admit the fact that there is no such a thing as a “pretty” death. However, I have come to the conclusion that this disease is like as if you were sentenced to life in prison without the possibility of parole and on top of it, you know that you are going to be executed in a slow, unusual and cruel manner. I sometimes describe the way I feel about my breathing problem as a boa constrictor wrapping around my chest walls, taking away my ability to take a breath.<br /><br />People with ALS often struggle with the idea that they are going to become completely dependent on their family members. I'm often left feeling guilty about the disease, when I know that there was nothing I did wrong to cause this upon myself. Every day, every week, changes such as losing strength from muscle atrophy, bring on new challenges to adopt. The other day I was so tired and exhausted, I could not even hold a utensil for long, and I had to allow my husband to spoon feed me like a baby.<br /><br />Imagine! And I ask you to put yourselves in the shoes of an ALS patient. At advance stages, people still can live quite a long time (in many cases extending their lives 10 years plus) if they have an elective tracheostomy, which requires a surgical procedure to open up the wind pipe to go on a full life support respirator machine. Long before this happens, one will also require a feeding tube. The paralysis marches on and overtakes your whole entire body. The only method of communication may be by blinking your eyes. One may then be left in what is called a locked-in syndrome, where he or she will not be able to communicate with the outside world.<br /><br />I was told that I had a slow progressive type of ALS. However, with this disease, nothing is ever slow enough. I ask you to join me to open up your hearts to gain more understanding with this bleak picture for all people with ALS and the huge challenges that their families face as the care giver. I would like to encourage people out there to gain interest in learning more about this orphaned disease which was first described in 1869 by the French neurologist, Jean-Martin Charcot. Without the development of medications that can halt or cure the disease progression, the chances of my two teenage boys losing their mother before they graduate from college is realistically very high.<br /><br />Juri Kameda</div>jurihttp://www.blogger.com/profile/13082788117779512761noreply@blogger.com3tag:blogger.com,1999:blog-1970942848861675070.post-71042567206509485902008-03-27T21:51:00.002-04:002008-03-27T21:54:02.871-04:00Martin's Story - An Uneasy Truce<p class="MsoNormal"><span style="font-family: "Trebuchet MS","sans-serif";"><span style=""> </span>I will always equate the peak of my career in banking, as the day I was made a corporate officer, with the title of Assistant Vice-President.<span style=""> </span>I knew I had gotten a position through perseverance, struggle and my sense of independence.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-family: "Trebuchet MS","sans-serif";"><span style=""> </span>Of these three qualities, the one that is most damaged by my life with </span><i style=""><span style="font-family: "Trebuchet MS","sans-serif";">amyotrophic lateral sclerosis, </span></i><span style="font-family: "Trebuchet MS","sans-serif";">is independence.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-family: "Trebuchet MS","sans-serif";"><o:p> </o:p></span></p> <p class="MsoNormal"><span style="font-family: "Trebuchet MS","sans-serif";"><span style=""> </span>It was somewhere in the middle of 2006, that I was shopping with my wife at a local grocery store. She commented on the fact that I must be tired, as I was dragging around the store.<span style=""> </span>Since I had had vascular problems with my left leg for some time, I mentioned that my foot seemed to be dragging.<span style=""> </span>But she was right in that I was feeling fatigued.<span style=""> </span><o:p></o:p></span></p> <p class="MsoNormal"><span style="font-family: "Trebuchet MS","sans-serif";"><span style=""> </span>Looking back on it now, I clearly see that particular event was the herald of ALS!<span style=""> </span>Each time I discovered my left foot dragging and felt fatigued over small things, I shrugged it off.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-family: "Trebuchet MS","sans-serif";"><span style=""> </span>It was the beginning of 2007 when I realized that I seemed to be losing power in my right hand.<span style=""> </span>Naturally, I didn't associate the dragging left foot and a weaker right hand.<span style=""> </span>I bought an exercise training ball and worked my weakening hand with it.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-family: "Trebuchet MS","sans-serif";"><span style=""> </span>Little by little weakness became more apparent.<span style=""> </span>At about the same time, my cardiologist was concerned over the fact I couldn't do the treadmill during a stress test.<span style=""> </span>Combining that with the weakness in my hand, he referred me to a rheumatologist.<span style=""> </span>That doctor ran a couple of tests, but said she couldn't help me any further.<span style=""> </span>She referred me to a neurologist.<span style=""> </span>Of course all of these referrals took time, and the months were going by.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-family: "Trebuchet MS","sans-serif";"><span style=""> </span>When I finally got to see a neurologist, he ran numerous tests... carotid doppler, EMG, EEG, blood work, etc. Finally, he told me that in his opinion, I had ALS.<span style=""> </span>When he briefly explained to me what that was, it was as if the floor had fallen out of his office.<span style=""> </span>My wife gasped and I just sat there feeling very cold.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-family: "Trebuchet MS","sans-serif";"><span style=""> </span>I went home and immediately got on the Internet, finding out all I could.<span style=""> </span>I registered, online, with ALSA and MDA.<span style=""> </span>I ordered all kinds of literature on it.<span style=""> </span>I called my local ALS clinic and scheduled an appointment.<span style=""> </span>I was lucky, in so far as I live only 20 minutes away from <st1:placename st="on">New York</st1:PlaceName> <st1:placetype st="on">State</st1:PlaceType>'s <st1:place st="on"><st1:placetype st="on">University</st1:PlaceType> <st1:placetype st="on">Hospital</st1:PlaceType></st1:place> were the clinic is held.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-family: "Trebuchet MS","sans-serif";"><span style=""> </span>Of course, I was now totally positive that the neurologist had made a big mistake.<span style=""> </span>Once I had gone to the clinic, they would set the record straight.<span style=""> </span>But that was not to happen... the diagnosis was confirmed.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-family: "Trebuchet MS","sans-serif";"><span style=""> </span>I won't go into all the nitty-gritty, as we all know what it is.<span style=""> </span>Suffice it to say, that at this point in my life, my right hand is almost useless and my right arm is atrophied.<span style=""> </span>My left hand is still viable, but weakening and that arm is quickly becoming useless.<span style=""> </span>My left leg, the culprit that was the first to go, now frequently feels like so much dead meat, while my right leg is weakened.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-family: "Trebuchet MS","sans-serif";"><span style=""> </span>The three qualities that made my career and in which I placed so much trust, have all come to play a part in this unique disease.<span style=""> </span>Struggle is the most obvious and I am finding the simplest things in life, now require a struggle.<span style=""> </span>I cannot get to my feet from a chair without often breaking a sweat.<span style=""> </span>Reaching for my drink at dinnertime requires Herculean abilities.<span style=""> </span>And so each day, becomes a struggle.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-family: "Trebuchet MS","sans-serif";"><span style=""> </span>I know I must strive for perseverance, for, while the end result is always the same, the knowledge that you are persevering can give one the direction and focus to carry on, which is of the utmost importance.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-family: "Trebuchet MS","sans-serif";"><span style=""> </span>But above and beyond all, is independence!<span style=""> </span>I have fought, kicking and screaming, against losing my independence. <span style=""> </span>My caregiver-my wife-would ask me, "Can you do this?"<span style=""> </span>to which I would reply, smiling, "Marty can do anything!"<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-family: "Trebuchet MS","sans-serif";"><span style=""> </span>As time goes on, however, and my wife is helping me to walk, to brush my teeth, to comb my hair and to dress, the phrase changed into "Marty can do <i style="">almost</i> anything!"<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-family: "Trebuchet MS","sans-serif";"><span style=""> </span>I cannot let anything steal my independence, but ALS seems to always have the last word.<span style=""> </span>With that in mind, ALS and I have called an uneasy truce.<span style=""> </span>I am learning how to live with ALS and maintain an <i style="">"independent dependence".<o:p></o:p></i></span></p>Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-1970942848861675070.post-66878323494922892112008-03-26T11:48:00.004-04:002008-03-26T12:11:12.298-04:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiL06NKOGcrk2NW1h6vU5jr0LfPbXp0Bk2HpcQMZCQNai0l_k4vYR7l7YqsdBhk5TI0plDwGl4fFJq7c51siudsbSuJG1tov1NmKFdgF0lURTy6-tQpkx74agdGmJ0m6EnKiOGul7oGcIo/s1600-h/Pictures+369.jpg"><img id="BLOGGER_PHOTO_ID_5182082146985813234" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiL06NKOGcrk2NW1h6vU5jr0LfPbXp0Bk2HpcQMZCQNai0l_k4vYR7l7YqsdBhk5TI0plDwGl4fFJq7c51siudsbSuJG1tov1NmKFdgF0lURTy6-tQpkx74agdGmJ0m6EnKiOGul7oGcIo/s320/Pictures+369.jpg" border="0" /></a><br /><div><span style="color:#ff0000;">This is the letter that I wrote and used while speaking to our Congressman and Senators from Alaska at the ALS Advocacy Day May 2006.</span></div><br /><div><span style="color:#ff0000;"></span></div><br /><div></div><br /><div>Linda B. (Teal) Kreider<br />PO Box 1596<br />Ward Cove, Alaska 99928-1596<br /><br />May 16, 2006<br /><br /><br />My Dad; in addition, was a wonderful husband for 54 years, awesome Grandfather, Great Grandfather and Uncle Charles Melvin Teal, Sr. He was born in Falls City, Oregon on March 28, 1925. “Mel” worked as a logging truck driver, yarder engineer and many other positions in the logging industry and then worked in road construction. We moved to Wrangell, Alaska in 1962 where my dad worked with Dick Sykes. In 1963, we moved to the Prince of Wales, Ratz Harbor, and my father worked with Clarence Kramer for several years. When I started high school, my father wanted his children to be in a public school, so we moved into the “town of Ketchikan”. My father continued to work at many different road construction sites throughout Southeast Alaska. My father loved the logging industry, loved working on the front-end loader, and played cribbage any time. He taught all of his kids to play cribbage, and to this day we still all play cribbage and his grandchildren and great grandchildren play!<br /><br />Dad has four children, two daughters and two sons. All of who reside in Alaska. I watched my parents suffer the loss of my younger brother, Gregg in 1993. On the day of my brother’s funeral, my dad told me that he never thought he would be alive to bury a child of his and hoped that he would never have to do this again. Well, my father will not have to… my father lost his short, but courageous and hard battle to ALS, better known to people as “Lou Gehrig’s Disease”. He passed away on May 16, 2006 at 3:00 AM, Alaska Pacific Time at the age of 81 years young!!<br /><br />The last time I saw my father, was Saturday morning, May 13, 2006. I went up to the New Horizon’s, a long-term care unit at the Ketchikan General Hospital before I left on my flight to attend the Annual ALS Association’s National ALS Advocacy Day and Public Policy Conference this week here in Washington, DC. Dad and I talked earlier about me going. He was so proud of me; he wanted his body to be donated to research for ALS. He said that this disease needs to be stopped! He told me to “give them hell honey”. I kissed him good-bye, we held each other, and I told him I would be bringing back pictures of me in front of the Lincoln Memorial and other pictures. I told him I would be lighting a candle for him and others at the Annual Candlelight Vigil Monday, May 15. I also told him that I would hold that candle in memory of Lu Tice, my oldest son’s grandmother, who also passed away 2 years ago to ALS. (Grandma Lu Tice also worked in the same logging camp as my father.) My dad smiled and said I could make a difference, “all we can do is try honey; anything is worth a try”.<br /><br />I really did not want to be so far away from him. Dad was “diagnosed” in January 2006, just 4 months ago, although he was having symptoms in October 2005. Dad’s last day to “walk on his own” was November 4, 2005. He used a walker for a month or so, then to a wheelchair. Because of Medicare regulations, he was not eligible for Home Health Care at that time. They said, “Just because he chooses not to go down the 18 stairs, and be lifted by several of us, he is not eligible for home health care”! We took my dad south to the Swedish Medical Center for appointments, 6 specialists, who ruled out all other disease that COULD be causing all the problems. However, the doctor’s best diagnosis was “it appears to be a lower motor neuron disease”. That was it… My dad’s comment was “at least I am 81 not 51”, and “I have had a great life, done all the things I have wanted to do, I am happy with my life, it’s complete”. I knew then that we had a fight on our hands.<br />There we were, my dad and mom, and me… standing there…with the look of “where do we go now? what do we do? We had been in Seattle for almost 2 weeks. My sister in law gave us passes to come down to Seattle. My father believed that Medicare was assisting in the trip or he would have never gone. We stayed in hotels, spending well over $3,000.00 in food and accommodations and transportation. Medicare did not reimburse for travel and accommodations even though the services that my dad needed were not available in Ketchikan. The trip down was worth it, we needed to know what it was that dad had. It was not a definitive diagnosis, but a start. We signed up on ALS’s website, got our books for patient, caregiver, family member and for the physicians in Ketchikan, so they could have some resources too. Great information and wonderful resources. Well, my best description of that is: It is Christmas Eve and I am looking at an instruction book on how to put together a huge dollhouse in less than 2 hours! ....Everything that I read was overwhelming. No chapter or support group in Alaska to contact. We were lost. We moved my mother and father out their home for the last 16 years into my family’s home on February 18, 2006, so that dad did not have to have any stairs to maneuver with the wheelchair. The wheelchair he had was a loaner from a friend. A prescription for a custom-made wheelchair was given to the local healthcare equipment distributor, as my dad is 6’4”. The chair he had was made for someone about 5’ or less. It took more than 5 weeks to get this chair and when it was delivered, it was the exact chair of what he already had. Dad told him to take that back and get what his physician ordered. I called the company myself. I was told, “that is all I GET REIMBURSED FROM MEDICARE”, I told him to repeat what he just said, and he said it AGAIN. I told him that was fraud...that my father was to have a chair that fit HIM. I told him I did not care what it cost, that my dad needed a chair that fit him and to get it now! It took another 2 weeks and we got it. About 2 weeks later, my father needed to have a hospital bed. The story on the hospital bed was pretty much the same “can’t have a larger one, as Medicare doesn’t pay for a different size”. My father was so uncomfortable, his feet hit the footboard, and we had to move him and the mattress up several times a day, as he would slide down. The mattress had to be replaced as it “fell apart”, the motor to the bed fell off, and it had to be replaced. Yet, the company still refused to get a bed for a person over 6’ tall as the company said “Medicare doesn’t pay for this; this is all that is allowed”.<br /><br />On May 4, we had to have the ambulance take my father to the Ketchikan General Hospital. He was having difficulty with his bowels. He was in so much pain, I have never known my dad to cry, and he cried. He was admitted into observation, as “Medicare doesn’t recognize this as medically necessary treatment or condition to be admitted for long-term care”. My father had not had a bowel movement in 3 days. The doctors and nurses had to physically reach up and remove the feces. This went on for a couple of days, making sure there was a male nurse with long fingers to assist in this! Dad was humiliated, embarrassed, etc. We got my father into long term care, not sure what happened paperwork wise, but he got to go into a nursing home. He had lost use of all his back muscles. Swallowing became harder and then, breathing was becoming difficult. He was receiving oxygen, but was not put on ventilator. He did not want to live that way.<br /><br /><br />I attended the Candlelight Vigil Monday evening. I received a call a few hours before the vigil and was told that my father had taken a turn for the worse, and had developed pneumonia. His doctor told me that he and my dad had spoken earlier about me and the he did not want me to come home. He wanted me to continue doing what I came to do and so I did. During the vigil, I held my cell phone out, my sister put the phone up to my dad’s ear, and he heard the music, smiled, and nodded his head. He knew I was there. I told him I was looking up at the Lincoln Memorial and with the Washington Monument at my back and candles were lit for him and all others with ALS and those who have lost their courageous and hard battles to ALS. I cried and cried; my fellow advocates were there to hold me and I felt so selfish in my crying over my father’s dying as one of the ladies I was standing with has her husband at home who has had ALS for over 10 years.<br /><br />I promised my dad and my family that I would attend and stay throughout the session and make my journey to Capitol Hill and, here I am to encourage and plead for you pass the ALS Registry Act (H.R. 4033/S.1353), legislation that would authorize the Centers for Disease Control and Prevention to create and maintain a single nationwide, ALS registry. This ALS Registry Act would help identify the incidence and prevalence of ALS in the US and collect data, which is urgently needed for ALS Research, disease management and the development of standards of care. A National ALS Registry will also promote a better understanding of the disease, help to determine causes of ALS and significantly enhance the nation’s efforts to find a treatment and cure for ALS.<br /><br />Also, please support ALS specific research at the Department of Defense’s (DOD) Neurotoxin Exposure Treatment Research Program (NETRP). Currently, there no funding appropriated to the NETRP is used to conduct ALS specific research despite the fact that studies repeatedly have shown the military personnel are at a greater risk of dying from ALS than those in the general population.<br /><br />Linda (Teal) Kreider, daughter of Charles Melvin Teal, Sr.<br /><br /><br /><br /><br /></div>ketchikangirlhttp://www.blogger.com/profile/13024986008476507441noreply@blogger.com0tag:blogger.com,1999:blog-1970942848861675070.post-27513469668136923262008-03-22T06:59:00.003-04:002008-03-31T21:15:59.264-04:00R's Letter to Oprah, Ellen, Larry, Montel...I'm always appreciative of comments/edits for the draft. I don't mean to be maudlin, but I thought a dose of reality might convey some urgency. Thanks. R<br />_____<br /><br />Dear Oprah, Ellen, Montel, Larry,<br /><br />This week the folks who read your mail have encountered a barrage of letters from people dealing with ALS. It has not been a wild coincidence. People with ALS support each other online. They share a common frustration and rage at being handed a diagnosis without the medical options that give them any fighting chance. They find ways to try to get the word out about ALS.<br /><br />If this campaign to engage you to get this public health problem out of the shadows fails, they won’t give up; however, many of their bodies will soon give out. In a few years, many of them will be gone.<br /><br />So if we don’t get some help now, there will be another group of people with ALS in 2011 who get a great idea to band together and get some help from someone with a major media voice. Most of the names will be new ones. The letter-writers of 2011 are enjoying healthy and productive lives right now. The stories will be all too similar. It won’t stop until we do something about it!<br /><br />Every 90 minutes an American gets the diagnosis. Every 90 minutes we bury an American who has died from ALS. Please use your voice to stop this deadly revolving door now. It has gone on too long. We Americans can do better. What better place to focus our collective energy!<br /><br />Sincerely,rknt50http://www.blogger.com/profile/03197278009726205789noreply@blogger.com0tag:blogger.com,1999:blog-1970942848861675070.post-12643786287218591812008-03-21T21:22:00.001-04:002008-03-21T22:38:39.802-04:00Jim's Story<span style="font-weight: bold;"> My name is Jim and I have Amyotrophic Lateral Sclerosis (ALS), otherwise known as Lou Gehrig's disease.<br /><br />My terminal journey began in 1999 when I noticed ordinary activities such as mowing the grass were completely exhausting. Throughout the summer of 1998 it took 45 minutes to cut the grass, by mid 2000 it would take almost 3 hours because of the numerous breaks I had to take. In the spring of 2001 my wife took on the job because I couldn't walk more than 30 or 40 steps. Numerous doctors had no idea what was happening to me. Late one afternoon my wife suggested she should take me to the emergency room. After a heated discussion off to hospital we went, because she said I looked bad--of all things. She got me situated at the admitting desk and went to park the car. While she was gone I stopped breathing. I awoke 5 days later, permanently on a ventilator. I can truthfully say, if my wife had not been so persistent, I would have died around 5:30pm May 17, 2001.<br /><br />ALS affects every victim differently. I know of several victims who noticed a slight unusual weakness and within 8 months they were unable to move, not even open their eyes. When the progression is this fast, within a very few months you are faced with making a decision that only "other people have to make." Are you going to be placed on a ventilator? You have no idea whether the disease’s progression will plateau, be a slow steady decline, or accelerate. Financial concerns, family stress, mobility, and medical care are some of the factors on one side of the balance scale with certain death on the other. The two individuals that I referred to--one opted not to vent and promptly died, the other went on a vent to live until his youngest child graduated from High School. This individual was totally paralyzed, unable to even open his eyes for 3 years, but the goal was achieved. As he wished a few months after graduation the vent was withdrawn. This disease does not affect your mind or your hearing but over time your body becomes completely useless. Statistics reveal that life expectancy is 2 to 5 years after diagnosis; however, I have known several victims who passed 6 months from the onset and a few who are still alive over 30 years after their diagnosis. I almost died without a diagnosis. How many are not as lucky as I was? ALS may well be the cruelest disease on earth; this is arguable because there are all too many torturous fatal diseases. Do not think it can't happen to you, as I once did. It is not only ALS that can permanently change your life--there are numerous others including paralyzing injuries.<br /><br />Why did I create this site? My purpose is to have a website to make the public more aware of ALS. In addition, I want to have an uncensored public forum. Censorship suppress truth and ideas! I am also concerned with our politicians and the way they waste taxpayers' money on pork-barrel projects. We should not pamper them because of their position--they are throwing billions away every year and cutting funds that could benefit the terminally ill and permanently injured. That's my story; please help me prevent it from becoming your story, or the story of a member of your family, a loved one, or a friend!<br /><br />Be well,<br /><br />Jim AKA- pigiron308@yahoo.com<br /></span><p class="MsoNormal"><b style=""><span style="color: rgb(102, 0, 102);"><a href="mailto:pigiron308@yahoo.com"><span style="color:purple;"></span></a></span></b><b style=""><span style="color: rgb(102, 0, 102);"> <o:p></o:p></span></b></p>Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-1970942848861675070.post-66314270575109376012008-03-21T21:18:00.001-04:002008-03-21T21:20:47.721-04:00Marty Allen's Story - A Real Tough Guy<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_5iaQOGSnPic/R-Recce9PuI/AAAAAAAAAGU/sehc_a-Ut9M/s1600-h/Marty+Allen.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer;" src="http://1.bp.blogspot.com/_5iaQOGSnPic/R-Recce9PuI/AAAAAAAAAGU/sehc_a-Ut9M/s200/Marty+Allen.jpg" alt="" id="BLOGGER_PHOTO_ID_5180369314158296802" border="0" /></a><!--[if gte vml 1]><v:shapetype id="_x0000_t75" coordsize="21600,21600" spt="75" preferrelative="t" path="m@4@5l@4@11@9@11@9@5xe" filled="f" stroked="f"> <v:stroke joinstyle="miter"> <v:formulas> <v:f eqn="if lineDrawn pixelLineWidth 0"> <v:f eqn="sum @0 1 0"> <v:f eqn="sum 0 0 @1"> <v:f eqn="prod @2 1 2"> <v:f eqn="prod @3 21600 pixelWidth"> <v:f eqn="prod @3 21600 pixelHeight"> <v:f eqn="sum @0 0 1"> <v:f eqn="prod @6 1 2"> <v:f eqn="prod @7 21600 pixelWidth"> <v:f eqn="sum @8 21600 0"> <v:f eqn="prod @7 21600 pixelHeight"> <v:f eqn="sum @10 21600 0"> </v:formulas> <v:path extrusionok="f" gradientshapeok="t" connecttype="rect"> <o:lock ext="edit" aspectratio="t"> </v:shapetype><v:shape id="_x0000_s1026" type="#_x0000_t75" style="'position:absolute;" filled="t"> <v:fill color2="black"> <v:imagedata src="file:///C:\DOCUME~1\HP_ADM~1\LOCALS~1\Temp\msohtmlclip1\01\clip_image001.jpg" title=""> <w:wrap type="square" side="largest"> </v:shape><![endif]--><!--[if !vml]--><!--[endif]--><span style="font-size:13;">Marty Allen was a tough guy.<span style=""> </span>He was an athlete, a U.S. Marine, a recovering alcoholic, a tree doctor and he had ALS.<span style=""> </span>He was my best friend.<span style=""> </span>Marty once said, “Everytime you hear an umpire yell “play ball”, jump in and enjoy life.<span style=""> </span>Play hard<span style=""> </span>and play to win, but after the game, always be willing to shake your opponents hand whether you win or lose.”<span style=""> </span>That's how Marty dealt with his ALS.<span style=""> </span>He jumped in; he enjoyed life, he played hard and he played to win.<span style=""> </span>He tried so hard to fight the ravages of ALS.<span style=""> </span>He tried to live every day to its fullest.<span style=""> </span>He tried to be grateful for what he had instead of mourning what he lost.<span style=""> </span>He tried to inspire others with his attitude and his courage.<span style=""> </span>Marty won all those battles except for the first one – he died from ALS on July 29, 2003 at the age of 55.<span style=""> </span>However, while fighting this last battle, he so inspired his loved ones that they have continued the fight in his name.<span style=""> </span>Marty taught his friends who travelled by his side as he lived with ALS, that just like in baseball, its not about whether you win or lose but how you play the game.<o:p></o:p></span> <p class="MsoNormal"><span style="font-size:13;"><o:p> </o:p></span></p> <p class="MsoNormal"><span style="font-size:13;">Since Marty lived and died with ALS, I have come to learn so much more about this devastating disease.<span style=""> </span>I am a physical therapist and yet when Marty was diagnosed, I knew NOTHING about ALS.<span style=""> </span>The sad thing is that many health care providers don't know enough about ALS.<span style=""> </span>At one point, Marty was applying for medicare coverage and going before a board of doctors at a local hospital.<span style=""> </span>One of the doctors, hearing his slurred speech, despite knowing his diagnosis of ALS, asked him if he were drunk.<span style=""> </span>Countless times, we had to tell health care providers what ALS was, how to manage his care, and what to expect (as best we knew it).<span style=""> </span>More often than we can count, we had to inform people that ALS affected his body, not his mind.<span style=""> </span>If knowledge is power, Marty's fight against ALS was an uphill battle.<span style=""> </span><o:p></o:p></span></p> <p class="MsoNormal"><span style="font-size:13;"><o:p> </o:p></span></p> <p class="MsoNormal"><span style="font-size:13;">It is ironic that Marty fought, as a U. S. Marine,<span style=""> </span>for the health of his country,<span style=""> </span>worked as a tree doctor for the health of the trees he so loved (sometimes using powerful chemicals), and then at the age of 52,<span style=""> </span>those two things may have contributed to his losing his health and ultimately, at age 55, losing his life – the villain, ALS.<span style=""> </span>He is not alone.<span style=""> </span>Why?<span style=""> </span>How?<span style=""> </span>A state registry would allow researchers to track cause and effect and better be armed to search for a cure or way to control symptoms.<span style=""> </span>Yet few states have instigated this and a national bill is being held up in the senate.<span style=""> </span>ALS is an<span style=""> </span>orphan diseases - little known and little revenue for research.<span style=""> </span>Yet many of our veterans who have survived war time, now face the terror of being twice as likely to face a battle against ALS.<span style=""> </span>In light of increased awareness of environmental issues, ALS should be in the forefront as a disease which truly seems to be the byproduct of environmental toxins.<span style=""> </span>Awareness is key and YOU can help.<span style=""> </span>ALS is a disease that takes young, healthy, vital people and strips their muscles away one by one until they are forced to either live out their days on a ventilator or die of respiratory failure.<span style=""> </span>YOU can make a difference by the millions that you impact.<span style=""> </span>Ted Koppel did that years ago with Morrie Schwartz.<span style=""> </span>Advances have been made since then on “how” people live with ALS thanks to modern technology.<span style=""> </span>Yet, hardly any advances have been made in a cure or public awareness of this horrible disease.<span style=""> </span>As Marty's friend, I promised, I would help make sure to continue his fight against ALS.<span style=""> </span>Please help us to honor those who have died and those who are living with ALS so their battle is not in vain.<span style=""> </span><o:p></o:p></span></p> <p class="MsoNormal"><span style="font-size:13;"><o:p> </o:p></span></p> <p class="MsoNormal"><span style="font-size:13;"><o:p> </o:p></span></p>Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-1970942848861675070.post-1401642888438443942008-03-21T21:11:00.002-04:002008-03-21T21:14:28.953-04:00ALS Me - Gary's Story<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_5iaQOGSnPic/R-RdR8e9PtI/AAAAAAAAAGM/9spZyY_Y3o0/s1600-h/GaryWatkins.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer;" src="http://3.bp.blogspot.com/_5iaQOGSnPic/R-RdR8e9PtI/AAAAAAAAAGM/9spZyY_Y3o0/s200/GaryWatkins.jpg" alt="" id="BLOGGER_PHOTO_ID_5180368034258042578" border="0" /></a>My name is <st1:city st="on"><st1:place st="on">Gary</st1:place></st1:city>. I was a school teacher for 37 years in the state of <st1:state st="on"><st1:place st="on">Washington</st1:place></st1:state>. I had planned to teach one more year, but this thing called ALS forced me to retire. <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">I had worked at staying healthy for years, and when I turned 60 a couple years ago, my daughter assured me that 60 was the new 40. I felt pretty good about that until I started having trouble walking. I went to the doctor and he tested my blood and found that my thyroid was out of whack, so that’s what he treated. It didn’t help; and finally I went to a neurologist who determined that there was something serious going on with me. After seeing a specialist, I was told I had some form of motor neuron disease. Several months later it was determined that I have ALS.</p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">In less than a year, it has effected my walking (I now use a walker and wheelchair), my hands are weaker, my breathing capacity is diminished (I use a BiPap machine at night, and sometimes during the day.) and I recently had a PEG feeding tube put in my stomach.</p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">This has not been fun. It is especially difficult for my wife who has to do so much to take care of me. She even has to do the manly things I used to do, like take out the garbage. Of course there is no more cutting the lawn, (not that I liked that!) So much now falls to my wife. My children and grandchildren don’t quite know how to deal with it either, except they know that I can’t do much with them anymore. </p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">I know there are many diseases that are devastating, but because most people die of ALS in two or three years, it seems to go relatively unnoticed. When my wife or I tell someone that I have ALS, they either give<span style=""> </span>a blank stare, or look very sad because they had someone they love die from ALS.</p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">At present, there is almost nothing that can be done for people with ALS except to treat their symptoms. Rilutek, the only FDA approved drug for ALS does virtually nothing.</p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">No one would wish this disease on anyone; however, it seems that only when high profile people get it or pay attention to it is their any public awareness. It was more than 60 years ago that Lou Gehrig died from this disease that bares his name. What has been done since that time to treat or find a cure?</p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">It is my prayer that by raising awareness, there will be a nation hue & cry to do something about this ongoing yet unknown disease.</p> <p class="MsoNormal"><!--[if gte vml 1]><v:shapetype id="_x0000_t75" coordsize="21600,21600" spt="75" preferrelative="t" path="m@4@5l@4@11@9@11@9@5xe" filled="f" stroked="f"> <v:stroke joinstyle="miter"> <v:formulas> <v:f eqn="if lineDrawn pixelLineWidth 0"> <v:f eqn="sum @0 1 0"> <v:f eqn="sum 0 0 @1"> <v:f eqn="prod @2 1 2"> <v:f eqn="prod @3 21600 pixelWidth"> <v:f eqn="prod @3 21600 pixelHeight"> <v:f eqn="sum @0 0 1"> <v:f eqn="prod @6 1 2"> <v:f eqn="prod @7 21600 pixelWidth"> <v:f eqn="sum @8 21600 0"> <v:f eqn="prod @7 21600 pixelHeight"> <v:f eqn="sum @10 21600 0"> </v:formulas> <v:path extrusionok="f" gradientshapeok="t" connecttype="rect"> <o:lock ext="edit" aspectratio="t"> </v:shapetype><v:shape id="_x0000_s1026" type="#_x0000_t75" style="'position:absolute;"> <v:imagedata src="file:///C:\DOCUME~1\HP_ADM~1\LOCALS~1\Temp\msohtmlclip1\01\clip_image001.jpg" title="2008" cropleft="5471f" cropright="12195f"> <w:wrap type="square"> </v:shape><![endif]--><!--[if !vml]--><br /><!--[endif]--></p> <p class="MsoNormal">My story is just beginning. And they don’t usually last very long. Two springs ago my wife & I visited our son in <st1:state st="on"><st1:place st="on">New York</st1:place></st1:state> where I first noticed something was wrong. Last spring, I had been diagnosed a month and had a lot of trouble walking, often using a wheelchair. This spring I will depend on one for all my mobility. I pray that I will be able to return in a year.</p>Anonymousnoreply@blogger.com0