My Story: College Years to Present
Deciding on a college to attend was no easy task, as there are few that provide all the services necessary for someone with a disability. After much research done mainly by my mom, we narrowed it down to four. One was St. Andrew's College in South Carolina. One visit was enough to convince me that I didn't like it. Their attendant care program was more of a nursing home and they couldn't guarantee that workers would always be there, not comforting at all. Two others were Wright State University of Ohio (which ended up not providing attendant care) and the University of Illinois Urbana-Champaign (which was way too far from home). We settled on the Edinboro University of Pennsylvania near Lake Erie. I'm glad I made the choice.
Edinboro had Personal Care Attendants (PCs) available 24 hours a day, seven days a week when regular classes were in session (unfortunately the cost for this is very high). There were vans available (again for a fee) to take you to your classroom buildings, until 9 p.m. In the dining hall, meal aides were available whenever they were serving food. Also, a very important thing, Academic Aides who provided assistance with homework, research, and testing. All of these things were coordinated through the Office for Students with Disabilities (OSD). Ultimately, all of these things helped me maintain my independence and actually gain more.
Just before beginning at Edinboro University (July 1995 to be exact) I had my first appointment with Dr. John Bach at the University of Medicine and Dentistry of New Jersey. Dr. Bach is a Rehab Specialist who is a strong advocate for Non- Invasive Ventilation for people with Duchenne Muscular Dystrophy. He recommended that I get a pulse oximator to check the oxygen level in my blood and an in/ex-sufflator (coughilator) which is used to assist with coughing. I was supposed use these two things when sick, to prevent getting worse infections. He also requested that I see a cardiologist once every two years to make sure my heart function was normal, which it fortunately has been. Less a month later I was up at Edinboro, great timing, oh well.
My first semester at Edinboro was definitely an eye opening and learning experience. Dealing with new classes, new surroundings and new people is difficult enough, but add explaining to complete strangers how to get you out of bed in the morning and learning what they can and can't do. It could've been overwhelming. After the first semester, I was used to to just about everything and talking to students who had been there really was helpful.
Something that caught me off guard was upon returning to Edinboro for my second semester. A week after returning I came down with a case of pneumonia that forced me to miss two weeks of school. It wasn't much fun, I ended up going back to New Jersey and being hospitalized for about five days. Dr. Bach said that if I had used my coughilator earlier and gotten antibiotics earlier, I could have avoided pneumonia altogether. Of course, he understood that it was still new to me and was just another learning experience. Hahaha! Then two days after getting out I was back up at Edinboro for classes. Some recovery, huh? I ended up dropping three credits off my class load, leaving me with 12, which my doctor agreed was probably the most I should take on at one time. And think, I actually knew people who could take 21 credits at a time, which to me is pure insanity.
I did come down with pneumonia again, the following spring, however I only missed three days of class, because I was hospitalized in Erie, Pennsylvania at St. Vincent's Health Center. Fortunately, the doctors were very helpful and even contacted Dr. Bach to find out how to deal with it well. It's very unusual to find doctors willing to do things differently than they're used to, so I do give them credit. Dr. Bach felt that hospitalization for that instance was unnecessary, unfortunately he was 400 miles away in New Jersey, not in Erie. Fortunately, that was the the last time I had pneumonia and the last time I was actually very sick (Knock on wood). Since then I am always certain to visit my doctor as soon as I feel even slightly ill to get my antibiotics.
In 1998 I started using my ventilator periodically during the day with a mouthpiece, in order to keep my carbon dioxide (CO 2) level low. Basically, to make sure I was inhaling enough oxygen. That definitely helped in making me feel better during the day. In March 2000 I started using a mouthpiece attached to my wheelchair with a ventilator, making even if to use it whenever necessary.
I completed my bachelor's degree in Business Administration/Marketing and graduated from Edinboro University on December 18, 1999. A few months later, on April 28, 2000, my family and I moved to Virginia. We lived in an apartment for nearly nine months awaiting the completion of our condo, but I believe it was worth the wait. Once we, finally, settled in I began searching for something to keep me busy.
Before moving to Virginia I had joined two mailing lists discussing Muscular Dystrophy. After a while, I came to two conclusions: people did not have a full understanding of what options were available for their children and that is very hard to discuss issues that affect older people with DMD in a group where parents of young children participate. So, I took action and created my own mailing lists, NIV Users Group and DMD Pioneers. NIV Users Group was a established on December 31, 2001 to discuss this respiratory alternative to tracheostomy. DMD Pioneers was started in the summer of 2001, but did not attract the membership I expected, so the mailing list was relaunched in January 3, 2002 at Yahoo! Groups. DMD Pioneers Mailing List was a way for adults with DMD and/or their parents to help each other deal with DMD.
I eventually decided that volunteering would be a good way for me to utilize my time. Shortly after moving I joined the condominium's Communications Committee, which was enjoyable but ended up being more trouble than it was worth because we really were not permitted to do much. Shortly before the Committee disbanded, I decided to join the Alexandria Commission on Persons with Disabilities and was appointed in February of 2003. Commission work really keeps me busy, but I truly enjoy it.
As new changes come about, I will be sure to add them as soon as I can.
