Friday, August 30, 2013

Spinal Cord Injury Study

As many of you know, I spent part of the 1974 and all of the 1974–'75 school year going to school at the University of California, Berkeley. That first year, I lived in a special residence program for students with disabilities at Cowell Memorial Hospital, which was the student health service on campus. The third floor had one wing with twelve students of which ten of us had spinal cord injuries, and four of us had broken our necks playing football.

It was an excellent program and way ahead of its time for students with severe disabilities attending classes, living on campus and a pioneer in helping to get educations for students with disabilities.

When we left for summer vacation, they closed the door and integrated us into the general population of the dormitories. At the time, that was unheard of. But, Berkeley had Ed Roberts! Ed was a pioneer for the disability community, which started with that residence program.

When I came back to Berkeley in the fall of 1974, my dad and uncle came with me. We dropped Terry off at McClellan Air Force Base near Sacramento, and dad spent a few days before he flew back to Worthington. 

I got settled in to Room 118 Putnam Hall in Unit 1 of the dormitories just off the campus. Sometime during that year, professor Nancy Crewe, PhD, from the University of Minnesota who was beginning a Longitudinal Spinal Cord Injury Study, contacted me and she wanted to know if I wanted to be a part of it.

I was more than anxious to be a part of it, and Nancy and one of her PhD students flew to Berkeley to interview me for the first part of the study. While Nancy was at the University of Minnesota, she interviewed me several times in person, or sent out forms for her study on our successes, failures, frustrations, education, employment, general health and a host of other concerns.

It was always interesting to know I was a part of a study of such importance she would fly halfway across the country to meet me for the first time. Once I moved back to Minneapolis, I worked with her and one of her PhD students, Jim Krause. Jim is also a C5-6 quad, and we have many similarities.

Nancy eventually moved to Michigan State University and left the study in Jim and his associates very capable hands. Once Jim received his PhD, he moved on to Shepherd Spinal Center in Atlanta where he worked for several years on the study. Eventually, Jim moved to the Medical University of South Carolina where the survey is being worked on today.

That is what brought me to this blog post and the meeting Richard Aust, Program Coordinator II, from the Medical University of South Carolina. Tuesday, we spent three hours with four participants in the study, of which I was the only one who has been with it since the beginning.

We had an interesting conversation, and he had an agenda with questions he wanted to get through. There were periods during our discussion where I made it rather difficult to keep on his agenda!

He did come up to me during our break and thanked me for my input. I believe he got a little more from me than what he was expecting! I told him, "I thought that is why you wanted me here was to give my opinion. Am I correct?" I gave him a polite smile and he agreed with me. The entire three hours was videotaped so Jim will be able to see just what took place.

It just so happened, I had several of my books with me and gave the other three participants and Richard a copy to share with Jim. Jim already has read it in ebook form, but I want them to have paperback versions and see if we can get one version or the other into the hands of the remaining participants.

At one point, I asked Richard how many of the original one hundred participants were still involved in the program. Care to take a guess? I was pleasantly surprised when he said, "Forty-two of the original one hundred are still participating!" After nearly forty years of living with spinal cord injury, 42% of us are still alive and able to fog a mirror!

One of the participants had his personal care attendant with him, and I noticed she was already reading the book before our session was through. I received an email from him the next day, and he said his attendant thought my book was "Wonderful!" He said he was going to read it now. I will take that endorsement any day!

On my way out of the building, I ran into another friend and his wife who were waiting to go into the next session. I am anxious to see what this round of information will tell the researchers about our study. 

I look forward to your comments.




Jane said...

Hey Mike,

Exciting to read of all the people connected with studying spinal cord injuries and your considerable contributions to improving quality of life for those affected. I love your vitality, and your valuing of the many people who have been a part of your journey so far. Keep writing, my friend!

Ruona said...

Great story Fat Cat. It is amazing......actually, you are amazing. Ruona