tag:blogger.com,1999:blog-43988807683350286322024-02-19T19:42:34.023-05:00Living With DMD - Not The EndPut simply, this blog is a chronicle of living with Duchenne Muscular Dystrophy (DMD).Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.comBlogger29125tag:blogger.com,1999:blog-4398880768335028632.post-39852449812135603112012-03-12T15:20:00.003-04:002012-08-05T15:58:22.534-04:00Iced Earth At The Palladium - 03/09/12<div>
Okay, here's my account of going to see one of my favorite Heavy Metal bands; Iced Earth.</div>
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After getting out of bed, the worst part of the day occurred...WAITING!!! I swear time nearly came to a stop and I kept staring at the clock, willing time to move forward at a faster pace. My uncle Kevin and our good friend Jim arrived at 2:15 just as they said they would. 2:30 comes and the damn van hasn't arrived, so the secretary calls to find out where the driver is. She finds that they are enroute. </div>
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Needless to say, I was not very pleased. I had everything planned out so that we would arrive at the venue before 4:30 to have extra time for any unforeseen problems. The driver finally arrives at about 2:45 and by the time I get in the van and locked in place and ready to go, it was 3:10. At this point, my blood is boiling, but I kept my cool. The drivers usually arrive about 15 minutes before the scheduled pickup tiime. </div>
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Our driver ends up taking a longer route to the venue. In my mind's eye I'm strangling him. When we're approximately 10 minutes away from the venue, my uncle calls Andrew (Iced Earth's tour manager) and leaves a message telling him we're running late because of the traffic we ran into. Again, I want to kill the driver for being late picking us up. A few minutes pass and Andrew calls back and tells my uncle not to worry about being late and to call him when we get there. To top things off, the freaking driver nodded off when we were heading out, so our friend Jim strikes up a conversation with him to keep him awake. </div>
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We finally arrive about 15 minutes late. In the cold, we have about a 100 yard trip to get to the front doors of the venue and when we reach them, we encounter a wheelchair's worst enemy...STAIRS!!! A little step up to door level and beyond the glass doors, steps leading up and steps leading down. </div>
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While Andrew and the venue staff are working on a solution, I've become so cold that I can't drive my wheelchair because my hand has become a popsicle. As we waited, Andrew hands my uncle the VIP stickers and my VIP laminate, which my uncle hung around my neck. After about 10 minutes, it's decided that a side entrance would be the best option. It was that or on the stage. I decided against the stage because when I did that at the same venue 8 years ago to see Iced Earth, the sound was horrible because the speakers are facing out towards the crowd. </div>
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After another 15 minutes in the cold, the door opens and we're led to a small balcony area. This was a pretty good location, but I couldn't see well because I can't look downward due to the position my neck is stuck in, but we made it work out as best as we could. Symphony X was doing soundcheck when we got inside.</div>
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A couple minutes later, Jon Schaffer (rhythm guitar), Stu Block (vocals), Troy Seele (lead guitar), Brent Smedley (drums), Freddie Vidales (bass guitar) and his wife Connie come over to me. With Symphony X doing their soundcheck and me being a bit congested, it was difficult to talk with them, which was frustrating for. If I had made a slight adjust to my ventilator before I left the hospital, I would have been able to speak better. Thankfully Andrew took a few pictures because my camera was dead. I got the autographed Dystopia poster and a guitar pick Jon signed. I really only got to speak with Brent, Freddie and Connie a very little bit. </div>
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As they were leaving for dinner I think it was, they all thanked me for coming. Brent asked if I would like a drumstick after the show and I said definitely!</div>
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Symphony X finished up their soundcheck and sounded simply amazing. I was impressed and couldn't wait for their set. About 15 minutes later, Warbringer began their brutal soundcheck, which practically rattled my teeth. I was looking forward to their set as well.</div>
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Show time...</div>
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The lights go out and Warbringer hit the stage after a messed up intro to which singer John Kevill responded "What the fuck was that?" He said a bit more, but I can't remember what it was. They tore through a very short set of 5 or 6 songs. I was a little surprised it was that short.</div>
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Next up was Symphony X. Their light show had me squinting because the strobes were so bright. I love their music, but only really know one song by name and that's Inferno (Unleash The Fire), which was their final song before a 3 song encore.</div>
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The mighty Iced Earth were next. The intro to Dystopia came on and the crowd roared. All the bands were great in my opinion, but Iced Earth really stole the show. They had an amazing connection with the crowd. They sounded phenomenal, but getting Stu's mic just right seemed to be a battle during the entire set. But damn, he can sing. He was simply incredible and his falsetto screams were ear-piercing. The entire band was flawless. People who have trashed Troy's playing must have bad hearing because his solos were spot on. When they played V and Stu, Jon and Freddie sang the chorus, I got the chills and got teary eyed because I was so happy and it was just so powerful. Watching Over Me was tearjerker because I played that song at my best friend's memorial service over a decade ago. </div>
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Iced Earth made all the difficulties I went through well worth it. As promised, Brent gave a drumstick and it was one he actually played during the show. My uncle told him for me that I didn't get the VIP t-shirt and he took care of it immediately and a few minutes later I had one. After thanking him, we headed out, but not before buying an Iced Earth and Symphony X t-shirt.</div>
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In closing, I had a GREAT time and can't wait to see them again. My most sincer thanks go out to Bill Murphy (Iced Earth's publicist), Ulf Zick (Iced Earth's manager), Andrew Peters (Iced Earth's tour manager) and all the guys in Iced Earth and their road crew for making this night one to remember!</div>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com4tag:blogger.com,1999:blog-4398880768335028632.post-59832538529772886032012-02-06T15:14:00.005-05:002012-02-07T13:01:28.579-05:00Family Matters<span>I always thought family was the most important thing in a person's life. Whether it be immediate family or not. I've found out that for some people, that's simply not the case. My cousin Ben from my mother's side of the family comes to mind here. You so, he lives a mere 10 minutes away from the hospital I live in, yet he can never make the time to come and visit. If it wasn't for my family cookout and family Christmas party, I would never see him.</span><div><span><br /></span></div><div><span>Yes, I certainly realize that his wife and 2 healthy daughters as well as his auto detailing and online business come first and I would NEVER ask to be put before any of it. However, is it really that difficult to put aside a little time to visit me? I would be happy and grateful if it was just a 5 minute visit. Sadly, that's apparently too much effort on his part. His excuse is that he's too busy with his kids and if he were to visit, he would need to bring them and after about 20 minutes they would get bored and want to leave. </span></div><div><span><br /></span></div><div><span>This is a problem why? Is 20 minutes somehow not considered a visit? I'm sorry, but his excuse is in a word LAME. </span></div><div><span><br /></span></div><div><span>Recently, he promised me that I would see more of him. Guess what? The last time I saw him was at our family Christmas party on December 17th. I knew he was just talking out of his ass when he made that promise. I certainly don't hate him in ANY sense of the word, but I sure as hell resent him.</span></div><div><span><br /></span></div><div><span>I can't exactly say I'm very happy with my other cousins either. I know they are busy with their kids and careers too, but in my opinion it's just inexcusable that they can't make a little time for me either. It's pretty sad.</span></div><div><span><br /></span></div><div><span>If there were awards given out to family members that make an effort to visit me, they would without a doubt go to my uncles David and Kevin. I see my uncle David once a week and sometimes once ever other week for an hour or two depending on his work. My uncle Kevin I don't see very often, but he more than makes up for by taking me out to concerts and what not, which is a good deal of work. </span></div><div><span><br /></span></div><div><span>Here's something that I find astounding. People who don't even know me make more of an effort to visit me than my cousins. Case in point. Freddie Vindales the bassist from the heavy metal band Iced Earth drove 2 hours from New Hampshire to visit with me in November of 2010. And in August of 2011, Matt Barlow the former vocalist from Iced Earth and his wife planned the late celebration of their anniversary around visiting me and they didn't even know me!</span></div><div><span><br /></span></div><div><span>I guess it's the same with every family. There are some you can rely on and others you can't. As they say, "What goes around, comes around". And no, I don't wish bad fortune on my cousins. One day they will rely on someone for something and they be let down. Then they will know how it feels to be in my situation.</span></div><div><span><br /></span></div><div><span>Peace,</span></div><div><span><br /></span></div><div><span>Chris </span></div><div><span><br /></span></div><div><span> </span></div>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com1tag:blogger.com,1999:blog-4398880768335028632.post-76815532276483312302011-08-17T13:11:00.003-04:002012-03-02T16:54:29.068-05:00A Very Special Visit<div><span class="Apple-style-span" style="font-family: verdana; ">This past Sunday August 14th was a special day for me. Why, do you ask? Well, that's a simple answer. Matt Barlow and his lovely wife Heather payed me a visit. Matt is one my all time favorite heavy metal singers and in my opinion, one of the best in metal. I place him in league with the likes of Rob Halford (Judas Priest), Bruce Dickinson (Iron Maiden) and Geoff Tate (Queensryche). If you don't agree, you must need hearing aids. ;-)</span></div><div><span class="Apple-style-span" style="font-family: verdana; "><br /></span></div><div><span class="Apple-style-span" style="font-family: verdana; ">For those of you who don't know who Matt Barlow is, he was the vocalist for Iced Earth from (1995-2003 & 2007-2011). He officially retired from Iced Earth on August 6th after the band's awesome performance at the Wacken Open Air Festival in Germany. </span></div><div><span class="Apple-style-span" style="font-family: verdana; "><br /></span></div><div><span class="Apple-style-span" style="font-family: verdana; ">He retired for very admirably reasons. To spend more time with his beautiful wife and adorable boys as well as focusing on his law enforcement career. It takes a real man to put his family first. I really admire him for that because far too many men avoid their obligations to their children, my deceased father being one of them</span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">Before I go into the details of my visit with Matt and Heather, let me first tell you how it all came to be. </span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">In March 28th I sent a message to Matt on his personal Facebook page asking if he would consider coming to visit me at some point in the near future. Three days later, he sent me a reply, saying he would definitely try to make it north to see me sometime this year. Needless to say I was pretty excited. </span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">Fast forward to August 8th. Matt's wife Heather sent me a message through his Facebook page to inform me that they would be in my area on August 14th because they were celebrating their 11th wedding anniversary in my area and actually asked if I would be up for visitors. I was like HELL YEAH! I couldn't type my reply fast enough! LOL</span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">I told two of my nurses about it almost immediately after reading the message. They thought it would be a nice gesture to make Matt a gift.. A few ideas were tossed about. Eventually we settled on making a t-shirt. It was black and said Iced Earth with an ankh (Egyptian cross) just below the space between the words Iced and Earth. On the back it had all the albu titles that he did vocals on. We also got him a good luck card. For Heather, we got a small Gerber Daisy plant (unfortunately she accidentally left it behind). For both of them, we got an anniversary card. My nurses got a small selection of food, including grapes, chips, pretzels and dip. They decorated the visitor's lounge with my Iced Earth flag and black and blue ballons. It looked pretty cool.</span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">Now ont the actual visit...</span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">I was down in the visitor's lounge with one of the respiratory therapists making last minute preparations for the visit; putting out the food and adding some more balloons. We put the Wacken show up on the computer for what I felt was the appropriate atmosphere. </span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">I had planned to be in my room when they arrived where I had Iced Earth playing on my computer. I was going to talk to them for a little while in my room and then tell them I had a surprise for them and then lead them to the visitors lounge. I was just leaving the lounge to go to my room when one of the nurses told me my company had gone down to my room. I headed toward my room and halfway down the hall I met up with Matt and Heather Barlow.</span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">My plans were changed, but that certainly didn't ruin the surprise. Instead of going to my room, I told them I had a surprise for them and I lead them to the visitor's lounge. This was after greeting them of course. They were both pleasantly surprised and thanked me, saying I didn't need to do what I did. They were both extremely down to earth and easy to talk to. They've the nicest people you would ever want to meet.</span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">Matt then said he had some things for me. First he gave me a small Horror Show poster. Exactly the same as the one he's giving away on his official Facebook page when it hits 5,000 likes. He then gave me a really cool Horror Show banner. Next he pulled out 3 pieces of paper, which turned out to be autographed set lists from the Danish band Volbeat. They were at their show in Pennsylvania the night before. Heather told me that Matt did a song with them, but I can't for the life of me remember which one it was because I don't really know Volbeat. Matt autographed the Horror Show poster and one of the Volbeat set lists. They kept one for themselves and I got to keep two. :-)</span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">We talked about music mostly and he told me some cool stories. </span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">When he had long hair and he headbanged or windmilled, he would get his hair caught in Jon's tuning pegs. He said he lost a lot of hair from the right side of his head and that it would be hanging from Jon's guitar. </span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">He also told me that he was disappointed that Century Media didn't record any of the Horror Show tour for a DVD. The band had worked hard on that tour doing three different sets complete with pyro, which isn't cheap. For the record, he didn't say anything derogatory about Century Media. Matt is too much of a class act to trash people.</span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span" style="font-family: verdana; ">The visit lasted for just over two hours. Before they had to leave, Matt gave me a goodie bag he was given at Wacken. It included patches, a shot glass on a chain (at least that's what I think it is), a keychain and a rain poncho just to name a few of the items. </span></div><div><span class="Apple-style-span" style="font-family: verdana; "><br /></span></div><div><span class="Apple-style-span" style="font-family: verdana; ">We then went to my room to exchange farewells. They both thanked me for allowing them to visit. Talk about humble people. They said they would be back to visit at some point</span><span class="Apple-style-span" style="font-family: verdana; ">. I intend to keep that Gerber Daisy plant alive to give to Heather. :-)</span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">That was the end to an amazing couple of hours I'll never forget.</span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">Peace,</span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">Chris</span></div>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com0tag:blogger.com,1999:blog-4398880768335028632.post-29043433317734309742011-06-25T17:55:00.002-04:002011-06-25T18:09:56.327-04:00Pissed Off At The World - Addendum<span style="font-family: verdana;">I just wanted to clarify something regarding my last post. I'm not looking for an escort or prostitute. Escorts are allegedly safer as far as STDs go, but they don't come cheap. Prostitute are far too risky for many reasons. Who knows what nastiness they might be carrying. I don't want to let some psycho into my life. I really have enough to deal with in life as it is.<br /><br />My ultimate goal is to find a wonderful woman to have a meaningful and physical relationship with. As I said before, a female friend with benefits wouldn't be a bad thing.<br /><br />Peace,<br /><br />Chris <br /></span>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com0tag:blogger.com,1999:blog-4398880768335028632.post-52037692359237649972011-06-24T20:51:00.002-04:002011-06-24T21:51:50.580-04:00Pissed Off At The World<span style="font-family: verdana;">For the past couple of days I've been filled with anger and frustration. I'm basically pissed off at the world. Heavy metal is the only thing keeping me from losing my freaking sanity and it helps get rid of my aggression.<br /><br />One of the biggest things that's just about pushed me over the edge is the feeling of loneliness that's practically consuming my soul. I long for female companionship so much that it's almost physically painful. I'm not just talking about friendship. I want some intimacy in my life once more. I once had that, but those past relationships failed for one reason or another. I'm at the point where I'm craving sexual activity like a damn drug.<br /><br />Of course I want a meaningful relationship with intimacy, but I honestly don't see that happening anytime soon. Is it so wrong to hope to find a female friend with benefits? I see nothing wrong with this.<br /><br />Some who read this may think I'm a pervert or sex manic, but those who know me at all know this isn't true. I'm a human being with sexual desires like anyone else. If this labels me as a bad person then so be it. I know what kind of person I am and I really don't care how people who don't know me chose to judge me.<br /><br />A disabled person having strong sexual desires is not a damn taboo as some people still think it is. I'm a normal man who just happens to have a disability.<br /><br />Peace,<br /><br />Chris<br /></span>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com2tag:blogger.com,1999:blog-4398880768335028632.post-37233303239192024472011-05-08T13:18:00.003-04:002011-05-08T15:44:56.361-04:00Amon Amarth At The Paradise Rock Club<span style="font-family:verdana;">So, last night after what seemed like an eternity of waiting, I went to see the death metal juggernaut from Tumba Sweden, Amon Amarth! It was an incredible show that I won't soon forget.<br /><br />I wish I could say that the evening went smoothly, but I had my share of what would best be referred to as "technical difficulties". First off all, the battery that powers my ventilator decided to act up earlier in the week. The ventilator's power meter was showing that the battery was not holding a charge, so the maintenance and respiratory department where virtually scrambling to find and fix the problem before I was to go out.<br /><br />Maintenance could find nothing wrong with the battery, but my ventilator was not in agreement, so my respiratory therapist swapped out the ventilator with a recently calibrated one. Still, the power meter was showing that the battery was not holding a charge.<br /><br />Fast forward to Saturday. Before I get up into my wheelchair, my respiratory therapist checks the power level and it reads eighty percent, which is a good charge. By the time I get into my chair, the power level reads sixty percent. So, they immediately plug in the battery charger and hope for the best. Things don't improve. Every time respiratory unplugs the charger, the power level starts dropping. At this point it's looking like I may not be going out. I called my uncle who was the one going with me and I had him call the nightclub where the concert was being held to find out if they had an outlet so my ventilator could be plugged in.<br /><br />I was in luck! They said they we could hook up an extension cord.<br /><br />Meanwhile, the staff almost cancel the trip on me until I told them what the people at the nightclub had said. The biggest concern everyone has was would the battery hold the charge during the ride to the show. I was confident that it would.<br /><br />When it was time to go, my charger was unplugged and the battery was dropping. By the time I got into the van and strapped down, the power level was down to fifty-five percent. Once we were on our way, my uncle checked the power level again and it was hovering just over </span><span style="font-family:verdana;">fifty </span><span style="font-family:verdana;">percent</span><span style="font-family:verdana;">. During the ride, he kept checking the power and it was holding at fifty </span><span style="font-family:verdana;">percent</span><span style="font-family:verdana;">. When we got to the club about forty minutes later, it was still </span><span style="font-family:verdana;">fifty </span><span style="font-family:verdana;">percent</span><span style="font-family:verdana;">. Once inside the club and at our seats, we plugged in immediately.<br /><br />Two other things that were not in my favor was needing to get suctioned a lot and being uncomfortable. Thankfully I endured and managed to enjoy the show.<br /><br />Now onto the show...<br /><br />The lights go out and the crowd of nine hundred rabid metalheads roar in unison. The recorded intro begins and the crowd is screaming. Then the mighty Amon Amarth take the stage one by one. The roar of the crowd is ear piercing at this point. Immediately they launch into the song War Of The Gods and the crowd is headbanging, pumping fists, crowd surfing and singing every word. The band were as tight as could be. Johan Hegg's guttural growling voice put forth the lyrics with epic power. Fredrik Andersson was a beast on the drums, thundering with fury. Ted Lundstrom's bass pounded with aggression. Olavi Mikkonen and Johan Soderberg played the rhythms and solos flawlessly. They sounded just like they do o their albums, a hundred times better. They played two sets. For their first set, they played their new album Surtur Rising in its entirety. </span><br /><span style="font-family:verdana;"><br />War Of The Gods<br />Tock's Taunt - Loke's Treachery Part II<br />Destroyer Of The Universe<br />Slaves Of Fear<br />Live Without Regrets<br />The Last Stand Of Frej<br />For Victory Or Death<br />Wrath Of The Norsemen<br />A Beast Am I<br />Doom Over Dead Man<br /><br />For their second set they played the following.<br /><br />Twilight Of The Thunder God<br />Masters Of War<br />Live For The Kill<br />With Oden On Our Side<br />Asator<br />Varyags Of Miklagaard<br />Thousand Years Of Oppression<br />Without Fear<br />Victorious March/Gods Of War/Death In Fire<br /><br />Encore<br /><br />Cry Of The Black Birds<br />Runes To My Memory<br />Pursuit Of Vikings<br /><br />At the end of the show, Olavi Mikkonen handed my uncle a guitar pick for me and Johan Hegg handed him the set list for their second set. I was thrilled to get some mementos from them.<br /><br />Once the crowd had thinned out, I ran into Freddie Vindales (Bassist of Iced Earth) and his wife. We couldn't really talk much because it was too loud. He told us that Brian Slagel, founder and owner of Metal Blade Records was there and that if I wanted anything autographed by the band, that he would handle it. Unfortunately, my ride was waiting and we couldn't wait around. However, Mr. Slagel did hook me up with an Amon Amarth tour t-shirt.<br /><br />I really wish I had had time to stick around and chat with Freddie and Brian as well as possibly meeting the band, but I still had a blast. I can't end the post without thanking the staff of the Paradise Rock Club. They were extremely helpful and accommodating to my needs.<br /><br />Peace,<br /><br />Chris<br /><br /><br /><br /><br /><br /><br /><br /></span>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com0tag:blogger.com,1999:blog-4398880768335028632.post-32064071327326286952011-04-14T15:45:00.002-04:002011-04-14T16:18:59.288-04:00Slightly Pissed Off<span style="font-family: verdana;">I'm sure everyone has had something piss them off for no real reason at all. This happened to me about 25-30 minutes ago. One of the aides on my floor was helping me with some repositioning. When she was repositioning my lap tray, which I use my mouse on, we were having difficulty getting my hand just right. I was getting frustrated, which got her frustrated. When she said she could only gives me 2 more minutes because she had to help put other people to bed, I lost my cool. I said I'm tired of always being the one who has to wait and that I was going to report it. When she left my room, I shouted that this hospital is a joke and no better than a nursing home. Then I hit my buzzer because I needed a suction. The respiratory therapist asked me what I wanted and I told her what I needed. She told me to hold on because another patient's ventilator alarm was going off and she had to check. I got miffed because two nurses were in the hallway doing narcotics count, which I know is very important. However, does that somehow exclude them from the responsibility of checking on a patient when their ventilator is alarming?<br /><br />I can't tell you how many times I've needed a suction quite badly only to be told I had to wait because the nurses were either doing report or narcotics count. Am I mistaken of is breathing not a priority any longer?<br /><br />Peace,<br /><br />Chris<br /></span>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com0tag:blogger.com,1999:blog-4398880768335028632.post-22838587919862689812011-04-13T13:55:00.004-04:002011-04-13T15:48:48.529-04:00Ventilation<span style="font-family: verdana;">My introduction to any sort assisted ventilation came when I was around 14 or 15. I was waking in the morning with horrible headaches and was rather tired. An ABG or Arterial Blood Gas revealed that I was retaining Co2 because my breathing was being comprised by DMD. My Pulmonary doctor prescribed the use of what was know as a <a href="http://160.109.101.132/respcare/pulmowrp.htm">Pulmo-Wrap</a>. It wasn't the most comfortable thing because the air blowing into it wasn't very warm. It was also quite loud as it was basically a vacuum cleaner motor that powered it.<br /><br />I noticed a big difference in my breathing right away. The headaches were gone and I felt more energetic. Once I became accustomed to it, the noise wasn't so bad, but being cold remained an issue that was never really resolved. It just felt so good to be properly ventilated that I didn't worry about being cold. I did well with the Pulmo-Wrap for about 4 years.<br /><br />Around the age of 17 or 18, my Co2 levels were beginning to climb again. This time I ended up in a behemoth of machine know as an <a href="http://en.wikipedia.org/wiki/Iron_lung">Iron Lung</a>. It was far more comfortable than the Pulmo-Wrap. It wasn't as loud and the air wasn't cold. As DMD continued its relentless attack on my respiratory system, I was in the Iron Lung 18+ hours a day and using oxygen when I was out of it and up in my wheelchair.<br /><br />After 3 or 4 years of being a virtual prisoner in the Iron Lung, I got fed up with it and told myself that there had to be something better. Something I hadn't considered or didn't know about. There was. It was a tracheotomy and using a ventilator.<br /><br />I knew nothing about any of this until having a heart to heart conversation with my doctor. At the end of that conversation, I was sold on the idea. However, before my doctor was okay with my decision, I visited some patients who were on ventilator at the very hospital where I have resided for nearly 21 years. They were all up and about on portable ventilators enjoy life. That's all I needed to see to know it was the right decision for me.<br /><br />So, in January of 1990, I became a ventilator user. It was a decision I have never regretted. I don't recommend that the younger people with DMD who are having difficulty breathing run out and get a tracheotomy and go on a ventilator. Yes, it is certainly an option to consider when the time is right. With the current level of technology, there are several Non-Invasive Ventilation (NIV) out there. <a href="http://www.doctorbach.com/">Dr. R. John Bach</a> is a M.D. that many people have consulted regarding NIV and have been very successful.<br /><br />Although I personally don't agree on his philosophy <span style="font-style: italic;">"No DMD person should ever require a trach tube or develop any respiratory complications. If people follclosely what we describe here, respiratory difficulties can be eliminated." </span>I world be irresponsible for not mentioning him in this blog entry.<br /><br />Take the time to weigh every option carefully and decide what is best for you. In the long run, it's what works well for you. I strongly urge parents of children with DMD to explain everything and allow them to be a part of this important decision. Don't force anything on them because they are the ones directly impacted by this.<br /><br />Peace,<br /><br />Chris <span style="font-style: italic;"><br /></span></span><br /><span style="font-family: verdana;"><br /><br /><br /><br /><span style="text-decoration: underline;"></span></span>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com1tag:blogger.com,1999:blog-4398880768335028632.post-57047706498999245562011-04-12T22:00:00.000-04:002011-04-12T22:02:31.457-04:00Blogging More Often<span style="font-family: verdana;">I created this blog with the intention of sharing my experiences living with DMD. I have done that to some extent, but I have so much more that I should be sharing. It's not always easy to know what to write about. I have become so accustomed to the relative monotony of my life that I don't feel I have anything useful to say, but many people have said that I have a lot to offer. Being among the older guys with DMD, I should be sharing my experiences with the younger people with DMD as well as their families and loved ones. I'm sure that those that DMD doesn't affect would find what I have to share. So, I'm going to do my best to blog on a regular basis. Even if I don't really have much to say, something is definitely better than nothing. In my upcoming blog entries, I plan on writing about what it's been like living in a rehab hospital and growling up with DMD. I'll still write about other things as well. I hope those that read my blog will find continue to find it interesting and informative.</span><br /><br /><span style="font-family: verdana;">Peace,</span><br /><br /><span style="font-family: verdana;">Chris</span>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com1tag:blogger.com,1999:blog-4398880768335028632.post-46521351675184991192011-03-08T16:16:00.004-05:002012-02-12T14:34:01.936-05:00A Special Visit<span style="font-size:100%;"><span style="font-family: verdana;">In late October, I sent an email to the manager of one of my favorite heavy metal bands; Iced Earth. I asked about meeting the band at the hospital I'm in. I got a response a day or two later. To make a long story short, the manager emailed the band's bassist, Freddie Vindales asking if he would give me a call. After discovering that the hospital was less than 2 hours away, he decided that he would visit. I was stunned when the manager emailed me to inform me of this. The following is a message he wrote that was posted to the Discussion forum on the Iced Earth Facebook page on November 7th, the day after his visit with me. I don't know why I didn't think to share this until now, but here it is for your reading pleasure.</span><br /><br /><span style="font-family: verdana;">Peace,</span><br /><br /><span style="font-family: verdana;">Chris </span><br /><br /><span style="font-family: verdana;">---</span><br /><br /><span style="font-family: verdana;">A few days ago, I got an email from our manager who received a request from an IE fan. He has been in a hospital/rehab facility for the past twenty years due to being on a ventilator, and he had asked if the band could visit sometime. My manager asked me if I would mind talking to him on the phone. That would not have been a problem at all. I looked up where the hospital was and found out that it was about an hour and a half south of where I live. So I decided that instead of a phone call, I’d just drive down and see him in person. So today I headed down from New Hampshire into Massachusetts to see him.</span><br /><br /><span style="font-family: verdana;">I arrived almost a half an hour later than I said I would because of the Boston traffic. There was a broken down bus blocking my exit from the freeway, and the crazy people down there (we refer to them as Massholes) didn’t make things any easier by driving so slowly. At any rate, I made it to the hospital and found my way up to the room. There I met a man named Chris Webb. He was wheelchair bound and on a ventilator due to having Duchennne Muscular Dystrophy. Other than that, he was like any other cool metalhead, so we got along great from the start. I brought him a couple of CDs. The first was the “I Walk Among You” single and the second was “The Crucible of Man,” but it was the promo version that we in the band got before the album was released. I signed both of them for him. I brought my laptop along because I had compiled some pictures from my travels over the last couple of years, and I wanted to show him some things that really no one else besides the band and crew had ever seen. We went through the pictures, and I told him the various stories that accompanied each. I had fun retelling the stories and he seemed to have fun hearing them. We talked mostly about music and our favorite bands (we’re both huge Maidenheads). He even met Metallica, which I never have. We traded stories about meeting various musicians. He also told me some interesting things about being in the hospital. For instance, his old ventilator didn’t have a battery backup like the one he has now. When power outages would happen, it would take about 30 seconds for the backup generator to kick in. He said those 30 seconds seemed like a lifetime. He also told me how in the past he would be cranking up the music in his room at the hospital, then the nurses would tell him to turn it down because the subwoofer was rattling the floor. I thought that was awesome.</span><br /><br /><span style="font-family: verdana;">I had only planned on staying about 30 minutes because I had dropped off my wife at the nearby Ikea store beforehand, and I needed to meet her to do some shopping. I ended up staying almost an hour because the time seemed to fly by. Just before I left, one of the nurses was nice enough to snap a picture of us that I sent to Chris as soon as I got home. We’ll definitely keep in touch, and I hope he’ll get to see us play sometime in the near future.</span><br /><br /><a style="font-family: verdana;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgd5-5ege-Nz3XMFnSkInacHksf7xqSDLgS4r9jKck3Tv0rp4_N_URLmIKuwHZOaMs9JiBZGFKLRW3I1haXPLaCFpKUeXMh1n6aUB_iCc3MPsFi9NQ_3nZsYqj6fUNOHnDmgHCOC5oYTDM/s1600/Chris.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="cursor: pointer; width: 320px; height: 181px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgd5-5ege-Nz3XMFnSkInacHksf7xqSDLgS4r9jKck3Tv0rp4_N_URLmIKuwHZOaMs9JiBZGFKLRW3I1haXPLaCFpKUeXMh1n6aUB_iCc3MPsFi9NQ_3nZsYqj6fUNOHnDmgHCOC5oYTDM/s320/Chris.jpg" alt="" id="BLOGGER_PHOTO_ID_5581821238885571826" border="0" /></a><br /><br /></span>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com0tag:blogger.com,1999:blog-4398880768335028632.post-64421073545793796272011-02-20T21:37:00.001-05:002011-02-20T21:41:44.630-05:0043 Years Of Kicking DMD's Arse!<span style="font-family:verdana;">Today I celebrated my 43rd birthday. It was by no means an extravaganza, but it was very nice nonetheless. The nurses on the 7-3 shift crept into my room as I was sleeping and decorated my room. I was completely unaware of this until I was being transferred from my bed to my wheelchair. They tied a happy birthday balloon to the back of my wheelchair as well as taped a happy birthday day banner to the back of my portable ventilator. On a bulletin board in my room and on my door were two more happy birthday banners.</span><br /><br /><span style="font-family:verdana;">After getting positioned in my wheelchair, one of the RNs came in and put a cardboard crown on my head. It was similar to the one you used to get at Burger King. I'm not sure if they still have them. Anyhow, the banner on my portable ventilator soon became my sash. I was king for a day minus the power one wields.</span><br /><br /><span style="font-family:verdana;">A little while later I was beckoned to my room for the traditional singing of "Happy Birthday". I was then presented with a nice little chocolate cake, which read "Happy Birthday Chris" in blue frosting, which turned my tongue dark blue! The cake was quickly devoured by myself and the 7-3 staff. They then pulled out my gift, which was a black t-shirt with images of Albert Einstein sticking his tongue out. It's very similar in design to Andy Warhol's famous painting of Marilyn Monroe done in funky colors with the image repeated nine of twelve times. I think this t-shirt is very cool.</span><br /><br /><span style="font-family:verdana;">I've spent a good amount of time today thanking people on Facebook that sent me birthday wishes. I was pleasantly surprised at how many people wished me a happy birthday. It's really a nice feeling to know how much some people care even if you don't know them very well at all.</span><br /><br /><span style="font-family:verdana;">Yesterday, my uncle David stopped by for a couple of hours, which he does every other weekend anyhow. It was as always, a nice visit. He gave me a birthday card with 50 bucks. Money is always a nice gift. On Friday night, one of the nurses on the 11-7 shift that has been taking care of me for years came into my room with a plastic bag, which contained 4 music DVDs from him and his family. It was an unexpected gift and one that will find much use.</span><br /><br /><span style="font-family:verdana;">In closing, I would like to dedicate my 43rd year of life as a memorial to my fellow DMD brothers and sisters that have fallen to this hideous unrelenting beast. And I want to be a source of strength to those younger than myself who are also battling this monster on a daily basis. I want their parents and loved ones to have a glimmer of hope.</span><br /><br /><span style="font-family:verdana;">Peace,</span><br /><br /><span style="font-family:verdana;">Chris</span>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com1tag:blogger.com,1999:blog-4398880768335028632.post-911848876018597042010-10-05T17:09:00.002-04:002010-10-05T18:10:56.615-04:00Lack Of Respect<span style="font-family: verdana;">One of the worst things about living in an institution is the complete and utter lack of respect from various staff members. Don't get me wrong, not all of the staff are disrespectful. Some are actually respectful and extremely nice and do go above and beyond the call of duty. Others are nice, but don't always listen to me and do things the way I want. And you have others who are nice one minute and 'El Diablo' the next.<br /><br />I really do put up with too much crap with certain individuals, but unfortunately these individuals are the ones that really know my care. It's a big catch 22. If I complain about so and so not doing things the way I want then I'll end up having people who don't know their arse from their elbow talking care of me, which is a total nightmare. So, I just bite my tongue and deal with my care not being done the way I want all the time. I wouldn't call it abuse or neglect, but it does get my blood boiling.<br /><br />I have my routine and reasons for doing things the way I do. It's been this way for the 20 years that I have lived here. So many people here have absolutely no clue at all what it's like living with Muscular Dystrophy. If I ask to be moved a little bit and I get moved too much and tell whomever is doing my care, I'm called a pain in the ass. Some nurses/aides say it jokingly, but I'm convinced that others use the term to be hurtful or make themselves fell high and mighty or even superior. If I were to report the way I'm sometimes treated, people would be fired so fast, but I doubt the powers that be world even listen or really care.<br /><br />My advice to others with DMD who have not yet had to be in a hospital for any amount of time would be to put your foot down from the get go if you are hospitalized for whatever reason. If you need your parents or legal guardian(s) to speak on your behalf, so be it. The same holds true for hired caregivers. You need to let them know who's the boss or you will more than likely be taken advantage of and treated like a second class citizen.<br /><br />Peace,<br /><br />Chris<br /></span>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com0tag:blogger.com,1999:blog-4398880768335028632.post-4271971286561922992010-09-27T17:41:00.002-04:002010-09-27T19:29:19.364-04:00Farewell Ron<span style="font-family: verdana;">On Thursday September 16, a good friend of mine unexpectedly passed away. Ron had Limb Girdle Muscular Dystrophy and was just 50 years old. It wasn't this disease that robbed myself and others of this wonderful person, but something else, which I don't know.<br /><br />I suppose how is of little consequence when compared to why. I ask myself this of every friend I have lost during the 42 years of my existence, but an answer I can embrace and accept has yet to come. I'm getting off track here. This blog post is supposed to be about my good friend Ronald C. Pepi and not myself.<br /><br />I never really met Ron face to face as far as I can remember, but I distinctly recall seeing him around at the Massachusetts Hospital School (MHS).<br /><br />For those of you who don't know, MHS was a school for the disabled which consisted of a fully wheelchair accessible campus that had a high school, elementary school. hospital, gymnasium and a few office buildings as well as 4 dorms, which were referred to as cottages. Each cottage was setup according to age. Most students lived at MHS during the week and went home on weekends, holidays and school vacations. Some were day students who came from home every day.<br /><br />Ron was a day student and 8 years older than I, which is why we never met face to face. He was in the high school crowd and I was in the elementary school crowd.<br /><br />Fast forward to mid to late 2007. I discovered that I could play World of Warcraft when I decided to sign up for the 14 day free trial. Scott, one of the nurses who works at the hospital I live in was also a friend of Ron's. They had become friends when Ron was here for 4 months after breaking his leg. I told Scott I was playing Warcraft and it turns out that he and Ron also played. He wrote done the name of the server/realm they played on and their character names. I immediately made a character on that server/realm and added them to my friends list.<br /><br />Talking to Ron in the game and later on Facebook and AIM was like talking to someone I had known for years. I only knew him by name from years ago. Now we were good friends. I came to know Ron as Zugzugdahboo, his character's name. His guild friends called him Zug for short. He simply <span style="font-weight: bold;">LOVED </span>Warcraft. It was practically in his blood. It quickly became my all time favorite game.<br /><br />Once my 14 day trial ended, I joined World of Warcraft as a paying member. Now I was able to join Ron's guild, the NationalRifleAssociation, reflecting his NRA enthusiasm and gun ownership. He was very helpful in helping me learn Warcraft basics. It wasn't long before he became like a big brother to me, always there for in game and out.<br /><br />He genuinely cared about me and all those he considered true friends. That's without a doubt the greatest trait he possessed. He was definitely one in a million and I really miss him. Once I get an Internet connection resolved and I can log on to Warcraft, I will become the new Guild Master (GM), which is the wish of his sister. It will be an honor to keep his guild going in his name. R.I.P. my friend.<br /><br style="font-style: italic;"><span style="font-style: italic;">"Smile when you think of me. My body's gone that's all." -- Megadeth - 'A Tout Le Monde'<br /><br /><span style="font-style: italic;"></span></span></span><span style="font-family: verdana;">Peace,<br /> <br />Chris</span><span style="font-family: verdana;"><br /></span>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com2tag:blogger.com,1999:blog-4398880768335028632.post-89744333711789118232010-08-04T18:28:00.002-04:002010-08-04T19:34:34.164-04:00A Night To Remember!<span style="font-family: verdana;">In order for you, the reader to understand the title of this blog post, some background information is needed.<br /><br />Back in November of last year I started a friendship via Facebook with a wonderful woman by the name of Jessica whom is now a dear friend of mine. Through her I met another wonderful woman; Julie. Since March, she has been visiting me on a weekly basis. We have become great friends during the five months we have known each other.<br /><br />She just finished being trained to take me out, which involves knowing how to suction, ambu and the operation of my ventilator. Normally, it's a simple process, but the respiratory therapists forgot to document what they taught Julie or they documented it wrong, so they had to go over everything about three times. Although it was frustrating, it was worth it in the end.<br /><br />Jessica had made plans to visit me from New York a while back and we decided that we would take in a Red Sox game.<br /><br />Well, that game was last night and it was a blast despite some minor problems. It was a very exciting game that the Red Sox won 3-1 and featured a bench-clearing scuffle between both teams. Although I was a bit nervous being out with Julie for the first time, I really enjoyed being out of the hospital with friends instead of family or a respiratory therapist. It truly was a night to remember! I'm looking forward to my next outing with Julie.<br /><br />Peace,<br /><br />Chris<br /><br /><br /><br /><br /><br /></span>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com0tag:blogger.com,1999:blog-4398880768335028632.post-2502332016995385832010-06-18T14:25:00.003-04:002010-06-18T16:32:07.608-04:00More Accomplishments<span style="font-family:verdana;">As I said in my last post, I will mention some of the other accomplishments I have made towards my goal of independent living. I am working on getting the documents necessary to get a state ID so that I can set up my own bank account. As it is now, my money is kept in a patient account and accessing it is just one big hassle. Having my own bank account will give me full control over my money, which in turn gives me more independence. It's definitely a win win situation for me.<br /><br />Last week I asked my doctor if he felt I was stable enough from a medical standpoint to live in the community. It took him a week to get to me and as expected, he is basically giving me the run around. He doesn't seem to understand the whole independent living thing. I e-mailed my Resource Coordinator about having a meeting with the hospital staff that will be involved as well as my uncle. I'm hoping such a meeting will clear up any misconceptions anyone may have and get everyone on the same page.<br /><br />Peace,<br /><br />Chris<br /></span>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com0tag:blogger.com,1999:blog-4398880768335028632.post-17943756117580211462010-05-25T20:33:00.004-04:002010-05-25T21:28:12.675-04:00Accomplishments<span style="font-family: verdana;">Before I get started, I want to make certain that everyone understands that my friend Julie is in no way influencing my decision to leave the hospital. It's something I've wanted for a LONG time. She has just given the in person support I needed and is helping me. I'm the one calling the shots.<br /><br />The accomplishments I've achieved thus far are certainly not milestones by any stretch of the imagination. However, they are important steps to get the ball rolling on this MAJOR undertaking.<br /><br />I've been talking with someone from my local Independent Living Center (ILC) since last year. They assigned a mentor to me shortly after getting in touch with them. Like myself, he has DMD, but he's younger than I and isn't vent dependent. He uses Non-Invasive Ventilation (NIV). His experience living independently has been very insightful thus far as well as his input. Having him involved in this process is definitely a plus.<br /><br />About a month or so ago, I was assigned a new Resource Coordinator. I was a bit apprehensive about this at first because I thought it was going to be a setback bringing a new person up to speed with my case. I was pleasantly surprised to find out this woman knew exactly where things stand after meeting with her in person. She's a wonderful person that truly wants to see me succeed and feel completely comfortable doing so.<br /><br />There are more accomplishments to share, but my eyes are getting tired. I will share more in my next post.<br /><br />Peace,<br /><br />Chris<br /><br /></span>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com0tag:blogger.com,1999:blog-4398880768335028632.post-83100799374606084432010-05-24T19:49:00.003-04:002010-05-24T20:29:13.860-04:00Moving Forward<span style="font-family: verdana;">The focus of my blog is going to change a bit. I plan on chronicling my step by step journey to leave an institution after 20 years to move into the community. I finally made the decision to stop being scared and move forward. Most of the support I've had has come from friends in the DMD community online, which has meant a lot because I really don't have family support except for maybe 2 people. A few other people in the rehab hospital I live in have voiced some degree of support, but nothing very motivating. The motivating force that has helped me gain the confidence I needed to make this BIG decision has come from a VERY special person that has only been in my life for about 4 months now. Those of you who are friends with me on Facebook have heard me mention my good friend Julie on several occasions. She is one of the most sweetest women I have ever had the honor and pleasure to meet. She has a heart of gold and is dedicated to helping me achieve my goal of getting out of this hospital that has been my home for FAR too long. Expect to see more post detailing my slow but steady progress on this journey.<br /><br />Peace,<br /><br />Chris<br /></span>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com0tag:blogger.com,1999:blog-4398880768335028632.post-74285259593098828122009-09-11T14:11:00.003-04:002009-09-11T15:05:28.006-04:00Stripped Of Confidence<span style="font-family:verdana;">One of the worst things that has happened to me during my nineteen year incarceration in an institution is basically having my confidence stripped away from me. Very few of the staff members support the idea of someone like myself living outside of the hospital setting. In fact, I have actually had a few people laugh at the idea, which practically felt like a physical slap in the face. I know I shouldn't let that affect me, but it did knock my confidence down several notches.<br /><br />Sadly, institutional bias is far more rampant than a lot of people believe. I know for a fact that there is a lot of ignorance regarding disabled people living independently. You wouldn't believe the number of people that I have encountered that don't think a person with a severe disability has the potential or capacity to live and thrive outside of an institution. It's exactly this kind of attitude that keeps people like myself from pursuing a life of freedom.<br /><br />Back in 2003, I was extremely close to leaving the hospital and moving into the community. I ended up backing out because it didn't feel like I was going to be safe. The agency I was working with just didn't seem to comprehend the kind of living situation that someone who is ventilator dependent requires. However, some of the blame rests with myself because I was too timid to speak up and make a real effort to explain what I wanted and needed. Another thing that wasn't very helpful, was the fact that my social worker was constantly pointing out what could go wrong. Obviously, being the one on the ventilator I'm acutely aware of what could go wrong and I would take steps to minimize the possibility of something going wrong.<br /><br />Now I'm at the point where I really want to make an effort to get out of the hospital, but it's not easy when you don't have the support of your own family and the people who care for you on a daily basis. Don't get me wrong, I do have the support of my fellow DMD Pioneers and others in the Disabled Community and I really do appreciate it. I just need to stop being scared of change and forge ahead regardless of the challenges I will certainly face.<br /><br />I also need to give my local ILC a serious kick in the ass because for over two years I have been working with them and getting absolutely nowhere. Every time I feel I'm ready to take the next step, something happens within this ILC that completely sidetracks me. First, the guy I was working with nearly two years ago ended up having serious health problems and had to quit and then the ILC closes and goes through some sort of restructuring. The last time that I heard from them was in July. The Director of Services told me that they were still interested in working with me and that there were going to set up a time to meet with me. I know that I'm responsible to follow up on such things, but I assumed that they would start the ball rolling. Unfortunately, I haven't heard back from them even after I sent them an e-mail about two weeks ago. I'm not sure if I should send them another e-mail and give them a chance to respond or should I tell them to close my case and work with the other ILC that covers my area. All I know is that the longer I remain idle, the more hesitant and nervous I'm going to be.<br /><br />Peace,<br /><br />Chris<br /></span>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com2tag:blogger.com,1999:blog-4398880768335028632.post-75017986138139869562009-08-30T16:09:00.003-04:002009-08-30T16:30:04.392-04:00A New Direction<span style="font-family:verdana;"><span style="font-family:verdana;">I have decided to take this blog in a somewhat new direction. Because I have lived in a rehab hospital for just over 19 years I have a good deal of experience with institutional living and believe that I have a lot to share with those who read this blog. I will still continue to write about other things that happen in my life, but I will focus more on my experience living in an institution. I hope what I write will be informative and helpful in some small way.<br /><br />Something that has been happening to me for quite some time is that my doctor rarely if ever discusses things that he orders. I have tolerated it because I know I have the right to refuse anything. This past Monday, one of the nurse came into my room the CBS (Capillary Blood Sugar) machine and said that she had to take my blood sugar. I figured she had made some sort of mistake because she is not one of our regular nurses. I told her that I don't get my blood sugar checked. She then went to the charge nurse about it and she came into my room to tell me that my doctor had ordered it taken three times a week or two weeks because I had recently started getting tube feeds and he wanted to make sure it wasn't affecting my blood sugar.<br /><br />I have no problem with such things being done, but it would certainly be nice if my doctor would take a couple minutes to tell me that he is going to order something and why. I honestly don't think that is asking too much. When he doesn't tell me, I feel like I have no control over my life. I will be speaking to him about this issue the next time I see him. Hopefully he will listen to what I have to say.<br /><br />Peace,<br /><br />Chris<br /></span></span>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com1tag:blogger.com,1999:blog-4398880768335028632.post-44086134691921251482009-05-18T15:03:00.002-04:002009-05-18T15:29:56.936-04:00Moving Towards Freedom<span style="font-family:verdana;">On April 28th I made a big decision, one I hope to follow through with this time. I contacted my local ILC known as Independence Associates. I informed them that I would like to look into the possibility of moving out of hospital and into the community. This is something that I have attempted a few times in the past, but fear has always derailed any real progress. I am rather nervous about the prospect of leaving the security of the hospital that has been my home for nearly 2 decades, but I have to make some changes in my life if I hope to find some real happiness and a sense of accomplishment. It's hard to keep my fear at bay, but if others who have DMD and are also ventilator dependent can live independently, there is absolutely no reason why I can't do it as well. At this point, I'm waiting to meet with the people from Independence Associates. I keep telling myself that I can do it and that my life will greatly improve.<br /></span>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com1tag:blogger.com,1999:blog-4398880768335028632.post-65688742074135542372009-02-20T15:03:00.003-05:002009-02-20T16:28:18.628-05:00Turning 41 And Other Thoughts.<span style="font-family: verdana;">Today marks my 41st year of life. I say it that way because I didn't actually celebrate this birthday in the traditional sense with a birthday cake and being serenaded with the birthday song. I'm not upset about it this fact, but I do wish I had made plans to go out and do something special. I will say that I celebrated my gratefulness to be alive and in good health. For this, I'm extremely thankful. My birthdays always make me pause to reflect on those who are no longer living. I can't help but feel a slight sense of guilt, but I know that I'm still here for a reason that I don't quite know.</span><br /><br /><span style="font-family: verdana;">During the past two weeks I have started to become close to someone that I considered to be just a casual friend. Out of respect for him, I will not divulge his name, but I will say that he was a member of two of my favorite heavy metal bands. We have been discussing spirituality and such. This isn't something that I have ever really talked about with another person. I've just never felt very spiritual in any way. Some may look at his views as somewhat crazy, but I have been able to relate to them. He is studying the martial art of Ninjitsu for a few months and he told me that the mental aspects of it had been very beneficial to him and have allowed him to forgive those that had wronged him in one way or another. He also said that he feels better than he ever has in his life. He has been giving me some great advice on how to avoid negative energy in my life and it has slowly begun to help me. I'm more aware of the negativity around me and find myself paying more attention to my thoughts and actions. For example, when I feel something beginning to frustrate me, I close my eyes and let myself relax and not give in to my frustration. I've been trying to be positive and I have noticed that unexpected things have happened. A friend of mine from school who I haven't heard from in about 18 years contacted me and I was thinking about taking another college course online and a few days later, my vocational rehab counselor e-mailed me to inform me that he is going to be retiring and he wanted to know if he should close my case. In my opinion, positive thinking really does work. It has also started me to think about working to leave the hospital and move out into the community despite my fear. With any luck, I will find a way to overcome being scared to follow a big dream of mine</span><br /><br /><span style="font-family: verdana;">Peace,</span><br /><br /><span style="font-family: verdana;">Chris</span>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com1tag:blogger.com,1999:blog-4398880768335028632.post-55366274708961096452008-12-22T14:48:00.005-05:002008-12-22T14:55:42.803-05:00Family Christmas Party And Some Random ThoughtsWell, as usual, my family Christmas party, which was this past Saturday was a success. Everyone that was expected to attend was there despite the nonstop snowfall. My cousin Stacy was the first to arrive along with her husband and their two sons. As I was showing my cousin where the party was going to be held, she told me that she was going to kill our uncle David because of a little prank he had played on her. She had called him when she arrived at the hospital and asked him where he was. He told her that he was laying on his couch watching football. My cousin asked him what he was doing at home when the party was today. He said that the party wasn't scheduled for Saturday, but rather Sunday. After he said this, there was a long pause of silence before my cousin responded saying that her aunt was going to kill her for giving her the wrong date. My uncle wanted to continue with the prank, but apparently he couldn't contain himself and finally told her that he was on his way. He really had her going for a few moments<br /><br />Everyone in my family has a great sense of humor and love to laugh. There are never any arguments among members of my family. Sure, there are definitely disagreements, but not to the point of voices being raised or feelings getting hurt. Everybody gets along extremely well. I have heard of families that can't get along and are constantly arguing. I'm very grateful that my family is respectful and civilized to one another<br /><br />After my cousin Stacy and I entered the room, other people began to trickle in. Before I knew it, most of my family was there and the kids were running around and having a great time with one another. I was getting tired just watching them. As I told a friend of mine, if we could harness the energy of children, we would never need to rely on oil again.<br /><br />There was plenty of food, but unfortunately I had difficulty chewing most of it, so I didn't have very much. I really can't complain because I'm nearly 41 and I'm still able to eat by mouth and not need a feeding tube, which I once had before getting trached and had removed shortly thereafter.<br /><br />This may sound strange to some of you, but for some reason I never feel completely comfortable around the children of my family. Don't get me wrong, I really enjoy seeing them, but I get very self-conscious about my disability and become rather quiet day. This has been an issue for me for some time now.<br /><br /><br />Anyhow, a good time was had by all and we all look forward to doing it again next year.<br /><br />Before I end this post, I want to wish all of you that read this a Merry Christmas. I won't say happy holidays because I find it ridiculous that there are people in this country that are offended by others traditions. It's time that people grow up and stop whining about somebody somewhere having a nativity scene in front of their home or what have you. I'm not exactly a religious person, but I have never been offended by how others celebrate their respective beliefs. I live in a Jewish rehab hospital and I don't take issue if I see a menorah. Although I'm a bit steamed about the hospital deciding that Christmas trees cannot be displayed at the nurses stations, but only in patient's rooms. Well, I rambled on long enough and kind of got off topic.<br /><br />Peace,<br /><br />ChrisChris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com0tag:blogger.com,1999:blog-4398880768335028632.post-47264500838213605682008-12-17T21:11:00.003-05:002008-12-17T21:58:01.830-05:00Unexpected EncouragementI was speaking with Scott Sands briefly last evening on Yahoo Instant Messenger. He asked me why I haven't blogged recently and I told him that I feel that I never have anything interesting to write about. His reply really got me thinking. He said to write about uninteresting things. He's absolutely right! I don't have to have something spectacular happen to me to write. And it just now occurred to me that the title of my blog is about life with Duchenne Muscular Dystrophy. What he said was certainly unexpected encouragement.<br /><br />I plan on trying my best to write something at least once a week. Hopefully I will be able to start making blogging more a part of my life as it should be. I can't let World of Warcraft become the only thing that keeps me occupied. Just because I live in a rehab hospital doesn't mean that I don't have something worthwhile to write about. I would say that my living in an institution should give me a lot to share with those of you that read my blog.<br /><br />Before I end this post, I would like to share something good that's happening this coming Saturday. It has become somewhat of a tradition for my family to have a Christmas party here at the hospital. We have been doing this for about 5 years now and it's something I always look forward to because it's one out of two times a year that I have the opportunity to see family members I don't see very often. It's always a good time. I plan on blogging about it.<br /><br />Well, the clock is close to striking 10:00pm, which is the time that the nurses come to get me into bed for the night, so I must say farewell for now.<br /><br />Peace,<br /><br />ChrisChris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com0tag:blogger.com,1999:blog-4398880768335028632.post-46895808776991635272008-10-16T19:26:00.003-04:002008-10-16T20:06:29.881-04:00Feeling Hopeless<span style="font-family: verdana;">I know it's been nearly 2 months since my last post, but because I live in a hospital there's never anything of interest happing to write about. I mean I don't exactly have what one would call an active social life. Sadly, I spend much of my time in my room playing World Of Warcraft these days. It certainly helps keep my mind off of things I'd rather not think about, but I know that's not very healthy. It's like people that drown their sorrows or what have you in a bottle. I may forget my troubles for a while, but they are still there after I finish playing. I suppose that I'm beginning to feel hopeless about changing my situation. It's difficult to find the motivation to make serious changes in my life when I don't really have people in my life that support me as far as pursuing independent living goes. Don't get me wrong, I have people I know online who have been rather supportive, which I really appreciate, but it's not the same as having someone you see in person. I could go on and on about this, but I don't wish to bore you, the reader of this blog.<br /><br />Peace,<br /><br />Chris<br /></span>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com2tag:blogger.com,1999:blog-4398880768335028632.post-77451767308326358122008-08-27T16:20:00.004-04:002008-08-27T17:28:09.932-04:00Death Magnetic<span style="font-family: verdana;">For many heavy metal fans worldwide, September 12th is a much anticipated date. It's the day that Metallica will release their 9th studio album entitled "Death Magnetic". <br /><br />Metallica has been ridiculed by numerous fans for the direction they took their music in 1991 when they released their self titled album "Metallica" also referred to as the Black Album. <br /><br />Subsequent releases have veered away from traditional old school heavy metal to become more commercial and radio friendly if you will. Sadly, a lot of Metallica fans have come to call the band sellouts. Now I have an issue with this term. Is it really selling out to experiment with one's music style and try to evolve their sound? In my opinion this is certainly untrue. Many bands in the past and present have done this. This is the natural process of creating music. <br /><br />Without treading into unexplored territory, a band can easily become stagnant and uninventive. Certainly there are bands that stick with a distinct sound and rarely if every stray from a formula that works. AC/DC comes to mind and they have been very successful. However, this isn't always the case as anyone who listens to music knows all too well. <br /><br />Many fans, including myself find Metallica's earlier albums to be the best work put forth by this iconic metal quartet. However, unlike these fans, I have enjoyed every album they have released and have the utmost respect for their decision to go in a different musical direction. Does this mean that I like every song? Hell no! There are some songs I simply don't like, but I don't say they suck or other such things.<br /><br />Two of the new songs on the upcoming album, "The Day That Never Comes" and "Cyanide" can be heard on YouTube. Both songs are very good, but "The Day That Never Comes" really grabbed my attention. It sounds like Metallica has rediscovered their roots while maintaining some of their newer sound to some degree. Will this be Metallica's return to their old school metal sound? We will find out soon enough.<br /><br />Peace,<br /><br />Chris<br /></span><br /><object width="425" height="344"><param name="movie" value="http://www.youtube.com/v/-UNfNpjWz-Y&hl=en&fs=1"></param><param name="allowFullScreen" value="true"></param><embed src="http://www.youtube.com/v/-UNfNpjWz-Y&hl=en&fs=1" type="application/x-shockwave-flash" allowfullscreen="true" width="425" height="344"></embed></object>Chris Webbhttp://www.blogger.com/profile/17511220801819255125noreply@blogger.com0