Forty Years And Counting!

Forty years ago I was a student at the University of California in Berkeley. I received a letter from Nancy Crewe, PhD at the University of Minnesota asking me if I would be interested in being interviewed for a longitudinal study she was starting on life after spinal cord injury (SCI)?

She asked me to call her with my response and if I was interested, she would come along with one of her students and interview me in my dorm room. I called her and agreed to meet with the two of them in our study room down the hall from my room. As I remember, we talked for several hours and she had many questions regarding my life to that point, expectations, and an inordinate amount of form questions.

Shortly after our discussion, I moved back to Minneapolis to a job I had created selling modified vans for a company that had sold me my first van. I was also supposed to meet people who had recently suffered spinal cord injuries and needed equipment like wheelchairs, shower chairs and various other equipment prescribed by their doctors as they left rehabilitation.

I ran into Dr. Crewe one day in the old Rehab 7 Unit at the University. We chatted for a while when she told me she was happy to know I was now at the University and if I wanted to continue to be a part of her study?

Obviously, I did and did my first few interviews in their offices at the hospital. It was during that time I met Jim Krause who was one of Nancy's PhD candidates. Several years later Nancy moved to Michigan State University but continued to remain an integral part of the program. Jim remained at the U and once he received his PhD moved to Shepherd Center in Atlanta. After spending some time there he moved to the current location at the Medical University of South Carolina. That is where the program is run out of today and Jim is the director working with a fine staff of people who were instrumental in putting on our event this last weekend.

Saturday I took part in a small roundtable discussion group with eighteen people, many of them I have known from being long time Minnesota Gopher basketball fans. It was fun seeing people outside of Williams Arena.

At one point, Jim asked if there were any new topics we would like to address as the study moves on and in to different areas.

I mentioned studying Eastern medicine and how alternative, preventative medicine is working its way into the Western model as East meets West. In the twelve years I have been receiving acupuncture, healing touch, guided imagery, herbal therapy, hypnosis and others the traditional Western medical community has begun to integrate Eastern ideas. I believe it is a good thing as Western philosophy begins to practice a more holistic approach as they do in the East.

The second day was a celebration of forty years since the program has started. Jim told me of the one hundred initial participants, fifty-five are still involved! I believe those are extraordinary numbers when we were all told our life expectancies were extremely short. "9-3-71" is often the answer I give when someone asks me my date of onset. In my case, in the fall of 1971 the doctors asked my family to come down to the waiting room so they could speak with them. One doctor told my family my life expectancy was nine years! I guess I beat those numbers! Others had even more horror stories then I did. 

I'm attaching a photograph of the people at the event at the Nicolet Island Pavilion with the forty-year survivors and the fifty plus behind us: 

As always, click on the image to enlarge it: 

That is Jim and me in the middle of the group. I had to wear my Minnesota shirt since I graduated from there in 1980. It still seems hard to believe it has been thirty-five years since I graduated from college!

The next picture has all of the people who were at the event as more and more people are being added to their studies:

Again, click on the image to enlarge it:

Between an ongoing slide show behind the very accessible stage, slides were shown of statistics from the study, several slides of participants (one of mine included), speeches were given, awards were given, I had a great piece of Minnesota Walleye and much reminiscing, meeting new people, mentioning people who have left us, and I believe everyone would tell you they had an enjoyable afternoon and evening. 

As I understand it, this blog post will be in some way linked on the MUSC website so it will be available to everyone in attendance.

I would like to share one particularly interesting fact I got out of all of the storytelling that took place over the two days. The longest person I knew before this weekend who has survived severe spinal cord injury was fifty-two years. I found out Saturday the longest anyone knows of right now who has survived a spinal cord injury is fifty-eight years! That gives me a new goal to shoot for! Who knows what the next ten years will bring to survivors of spinal cord injury?

As always, I look forward to your comments.

Later, and I do mean later,

Mike
 

I Made It 43 Years ... And Counting!

"9-3-71" is my response when someone is filling out a form in a doctor's office or some other person wants to know my injury onset. It is hard to believe it has been forty-three years ago tonight since I had my accident.

If you were one of the people at the game, I am guessing you remember something about that night and the ensuing months when many lives were affected by an instant in time. That is a phrase I use often, "an instant in time" can change anyone's life forever. I am guessing everyone will agree with me they all have their own "instant in time." Some of you have more than one instant in time.

That is not a very difficult prediction to make. Our instants are not always negative like that one was for me. I have had many "instants in time" that have proven to be very positive experiences. I am sure you have too.

I remember that entire day as if it happened yesterday. I cannot tell you where the last forty-three years have gone. I would guess many of you feel the same way. Life goes on. It has always amazed me just how fast our lives fly by. It seems like when we are young, we cannot wait to grow up and time drags on.

Now, as adults, at least for me, time is measured in years and a year goes by incredibly quickly. I remember being a boy and anxious to get old enough so I could finally play varsity football and basketball.

As a freshman, I ran on the track team and missed getting my letter by one point. I lettered my sophomore year in track and proudly wore my letter jacket for just a few minutes one day because I did not get it until the summer before my accident.  Summer in Minnesota is not the time to be wearing a letter jacket! I still have it and it looks brand-new.

I cannot begin to tell you how many times someone will walk up to me and tell me they were at the game, or they remember my accident. They all tell me what kind of an impact it had on them and how it affected the way they looked at football, taking risks, how fortunate they were not to have gotten hurt playing football, or more often their lifelong struggle with an injury they received playing football.

People will tell me how their shoulder hurts or they have a bad knee because of a football injury. One of the things I always tell them when they say they compare their injury with mine is not to do that. I do not believe it is a matter of degree.

If you have an injury or trauma of any sort, that is your issue and you need to address it. I do not believe you should compare it to "What happened to Mike." Too many times people do that and I want them to know they have to address their own issues their own way.

September third is always a bittersweet day for me. I have always felt the bitterness of the day my first life ended and my second life began. I believe very strongly I have had two lives. The life before my accident lasted sixteen years and now I am forty-three in this second life.

It is hard to imagine I am only several months away from turning sixty! I still feel like a young boy much of the time. I just go to bed earlier now!

I feel the sweetness in knowing I have lived another year. I say that because when I was in Sioux Falls for the first ninety-nine days after my accident, the doctors came into my room and asked to talk to my family members. My parents did not remember this, but my sister remembers it vividly. The doctors told my family my life expectancy was nine years.

I guess I beat those expectations. The thing is, those were the statistics on life expectancy for spinal cord injuries in 1971. High-level neck injuries like mine did not live long because of complications due to the injury. Now, they are able to deal with many of those complications and I can expect to die of the same thing most of the rest of us will and that is heart disease.

Doctors keep telling me they do not know what to do with certain problems I come up with because they have not had to deal with those issues and people with spinal cord injuries who have lived that long because we are living longer all the time.

I know a couple men with spinal cord injuries who are alive and they are well over fifty years post injury. I often post about new developments in spinal cord injury and regenerating nerves. I know it will happen, I just do not know when it will!

I want to attach this photograph taken by Jim Brandenburg. He took nine photographs that night as he was beginning is incredible career as a photographer for the Worthington Daily Globe. You may see the rest of his photographs of that night on my website at: www.patcom.com.

I distinctly remember the applause I received as they carried me from one end zone to the other to wait for the ambulance. I never understood that applause because I had just suffered a traumatic injury and people were clapping. I felt like I was a Christian who had just been mauled by a lion in the Coliseum and people were clapping. That did not make any sense to me. I now know why they did it out of respect. The thing is no one knew what had just happened. I write about this in more detail in my book "I Still Believe In Tomorrow."

Click on the image to make it larger:

Now, I am off to acupuncture and I am sure I will feel a complete state of calmness after my treatment.

As always, I welcome your comments.

Later,

Mike

Just Think

Last Sunday the Minneapolis StarTribune published an article in their science+health section entitled "THE POWER OF THOUGHT" and addressed the issue of spinal cord injuries and implanting a computer chip in the skull of a young man enabling him to think and move his paralyzed arm.

I have always said, "I know they will find a way for people with spinal cord injuries to regain the function of their paralyzed limbs." Actually, I believe it was more like, they will find a way for us to walk again!

The article was originally published in the Washington Post and was written by Jim Tankersley. They talked about the first patient trying to use a computer chip implanted in his brain at Ohio State Wexner Medical Center. It was invented by scientists at Battelle, a nonprofit, research organization.

From what I gathered from the article, they needed to embed a chip into the brain that "reads" commands from the brain and transfers them to his arm, which is wrapped in a sleeve of electrodes around his arm and they stimulate the muscle fibers in his hand to move.

There are several pictures in the article and it is in the beginning stages, but doctors involved are very encouraged by their initial results. The idea of bypassing the spinal cord by using thought technology is still in its infancy. I am excited to see where it goes from here.

The subject of the article is four years post injury. From this article and other articles I have read, it is getting more and more to the point where the length of time between injury and actual retraining and reusing paralyze limbs is getting longer and longer.

This is just the latest article I have reviewed which discusses alternative ways doctors are attempting to get people with spinal cord injuries to be able to at least function at a somewhat higher level than they are today.

It would be wonderful to get to a point where I could use my hands on my own instead of having to use various assistive devices to help me function with my hands. That would just be the first step. I know processes like these take a long time. I also know there are several people studying various alternatives to getting spinal cord injured persons more function back. It is happening all over the world, and people are doing amazing things. This is just the latest, and who knows, possibly the greatest attempt at getting function to return.

There are always going to be very smart people working from different positions and different techniques trying to get people with spinal cord injuries to function at higher levels. That is the exciting part for me as I close in on forty-three years of living with my injury.

One of the things it frustrates me is when I am constantly told we just have not seen that Mike, because most spinal cord injuries do not live as long as you have! Right now, the record for longevity after a spinal cord injury I know of is fifty-one years. That is not long enough. I want to see more than that. I am sure there are a number of other people out there who feel the same way I do.

I look forward to your comments.

Later,

Mike

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.


Later,


Mike

Blue Food Dye And Spinal Cord Injuries

There is an old joke that asks, "What color does a Smurf turn if it is choking?" Now, what happens to a lab rat whose spinal cord is damaged, when you infuse the same blue food dye they use in M&Ms and Gatorade into that rat's blood system? The answer: it turns Smurf blue!


The rats get some functional return, but they turn blue. However, this is a good news/good news story. The first good news is the rats' spinal cords get healed to varying degrees. The second good news is the blue color eventually goes away.

In a recent interview, lead researcher Maikn Nedergaard, from the University of Rochester Medical Center, told ScienceNews' Rachel Ehrenberg. "It could be [as simple as] you drink blue Gatorade on the way to the hospital."

You can read the entire article from gizmag.com by clicking here.

The article ends with this paragraph which I really like: "Here's hoping that this simple technology shows similar results in humans, and that it makes it through into clinical use around the world as soon as possible. Any treatment that can reduce the severity of spinal cord injuries stands to vastly improve the quality of life for victims, and for such little expense this seems like an enormous breakthrough."

I have always said science is amazing; and eventually they will find a way to cure spinal cord injury. I never would have guessed drinking blue Gatorade in the ambulance on the way to the hospital would be part of the equation!

Any comments?

Later,

Mike

Morton Cure Paralysis Fund

I have been asked to give the closing speech at the Third Annual Research Symposium for the Morton Cure Paralysis Fund this Sunday afternoon. The keynote speaker is Dr. Anthony Windebank of the Mayo Clinic. He is the director of the Neural Regeneration Program where his research group is focusing on restoring function to damaged spinal cords.

I am excited to hear his message. It promises to be very informative. Who knows, it may lead to another post. You can read all about MCPF and their upcoming symposium by clicking here.

I introduced you to MCPF in my May 3, 2008 post when I quoted them regarding asking questions about spinal cord injuries (SCI). The entire MCPF website is full of good information touching on everything from the basic physiological facts of a spinal cord injury to the latest articles on SCI research.

Last year's symposium was very informative when Dr. Wise Young from Rutgers University told us about his spinal cord research in New Jersey and China where he is working with humans in clinical trials. You can watch the entire symposium including Dr. Young's presentation by clicking here.

Check out the links above and feel free to comment.

Later,

Mike