Wednesday, August 17, 2011

A Very Special Visit

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. ;-)

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.

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

Before I go into the details of my visit with Matt and Heather, let me first tell you how it all came to be.

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.

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

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.

Now ont the actual visit...

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.

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.

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.

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. :-)

We talked about music mostly and he told me some cool stories.

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.

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.

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.

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. I intend to keep that Gerber Daisy plant alive to give to Heather. :-)

That was the end to an amazing couple of hours I'll never forget.



Saturday, June 25, 2011

Pissed Off At The World - Addendum

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.

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.



Friday, June 24, 2011

Pissed Off At The World

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.

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.

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.

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.

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.



Sunday, May 8, 2011

Amon Amarth At The Paradise Rock Club

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.

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.

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.

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.

I was in luck! They said they we could hook up an extension cord.

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.

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
fifty percent. During the ride, he kept checking the power and it was holding at fifty percent. When we got to the club about forty minutes later, it was still fifty percent. Once inside the club and at our seats, we plugged in immediately.

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.

Now onto the show...

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.

War Of The Gods
Tock's Taunt - Loke's Treachery Part II
Destroyer Of The Universe
Slaves Of Fear
Live Without Regrets
The Last Stand Of Frej
For Victory Or Death
Wrath Of The Norsemen
A Beast Am I
Doom Over Dead Man

For their second set they played the following.

Twilight Of The Thunder God
Masters Of War
Live For The Kill
With Oden On Our Side
Varyags Of Miklagaard
Thousand Years Of Oppression
Without Fear
Victorious March/Gods Of War/Death In Fire


Cry Of The Black Birds
Runes To My Memory
Pursuit Of Vikings

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.

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.

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.



Thursday, April 14, 2011

Slightly Pissed Off

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?

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?



Wednesday, April 13, 2011


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 Pulmo-Wrap. 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.

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.

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 Iron Lung. 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.

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.

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.

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. Dr. R. John Bach is a M.D. that many people have consulted regarding NIV and have been very successful.

Although I personally don't agree on his philosophy "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." I world be irresponsible for not mentioning him in this blog entry.

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.



Tuesday, April 12, 2011

Blogging More Often

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.



Tuesday, March 8, 2011

A Special Visit

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.




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.

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.

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.

Sunday, February 20, 2011

43 Years Of Kicking DMD's Arse!

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.

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.

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.

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.

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.

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.