Tuesday, October 5, 2010

Lack Of Respect

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.

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.

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.

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.



Monday, September 27, 2010

Farewell Ron

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.

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.

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).

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.

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.

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.

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 LOVED Warcraft. It was practically in his blood. It quickly became my all time favorite game.

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.

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.

"Smile when you think of me. My body's gone that's all." -- Megadeth - 'A Tout Le Monde'



Wednesday, August 4, 2010

A Night To Remember!

In order for you, the reader to understand the title of this blog post, some background information is needed.

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.

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.

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.

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.



Friday, June 18, 2010

More Accomplishments

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.

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.



Tuesday, May 25, 2010


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.

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.

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.

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.

There are more accomplishments to share, but my eyes are getting tired. I will share more in my next post.



Monday, May 24, 2010

Moving Forward

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.