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 Like Simon's Attitude

I received my inspiration for this post from a young friend who has a disability. He wrote me a note and shared a story about twenty-year-old Simon Wakelin, of Rhydargaeau, a small village near Carmarthen, West Wales. I am sure you all know where that is located!

At age eight, he was diagnosed with Duchenne Muscular Dystrophy, a muscle-wasting disease that has forced him to use a wheelchair ever since. He loved driving the tractors at his grandpa's farm before his diagnosis and liked taking care of his family's lawn. With the help of a friend, he has designed a lawn mowing wheelchair and has become the youngest lawn mowing businessman in his village.

I love hearing and learning about people's life stories. I tell mine for a living and have people telling and writing me about themselves all the time. It is wonderful! Young Simon's is yet another such story. For a young man with such an extremely involved disability to take on a physically-challenging career and make it work, is extraordinary.

Here is a photo from the article:

Click on the image to make it larger:

You may read the entire article by clicking here.

My favorite quote of Simon's is: Having a disability does not have to stop you from doing the things you want to. I love that coming from such a young man! Now, that motivates me!

Read it and see what you think of this young entrepreneur the next time you go out to mow your lawn. There are also several dozen Comments you may enjoy.

I look forward to your comments.

Later,

Mike 

Discrimination Takes A Blow

I know it has been almost two weeks since I last posted, but I have my reasons. I will not go into them here, but it has been an extraordinary period.

I want to tell you about a couple who both have cerebral palsy and live in Mississauga, Ontario, a suburb of Toronto, and have been given permission to keep their newborn son, William, to raise on their own.

I first learned of their situation shortly after William was born through a friend I met at one of the Virginia Youth Leadership Forums I spoke at a few years ago. It is great fun for me to keep in touch with these young people as they finish high school, go off to college and share their stories as several of them keep me informed of their lives and accomplishments.

Anyway, back to Charlie and Maricyl's story. They were initially told their baby would be taken from them because of their disabilities. At a family conference they showed they were capable, with an extended support system, to raise their child on their own. It truly is a wonderful story of the system working. You can read the Toronto Star's story by clicking here:

The article was written in early May. I wonder how they are doing? 

As always, I look forward to your comments.

Later,

Mike

For My Young Friends With Disabilities

I know many of my subscribers are young students with disabilities from either the Youth Leadership Forums I have done or high school students who have sent me emails after I visited their schools. This post is especially for you. For any of my adult subscribers who know a young person with a disability who is or will be soon attending college, please forward the attached article on to them.

First of all, this article was originally published in U.S. News & World Report in early December. I received it yesterday when a young Facebook friend posted it on my Wall. According to the article, there are about one point one million undergraduate students with physical disabilities in the country.

That may not be a large number of total college students, but each one of those students has their own story on what it took to get there, just like I did almost forty years ago. And guess what? Only five schools in the country offer enough services for a student with serious physical disabilities to live on campus. One of those is U.C. Berkeley! I lived on that campus in 1974 and 1975! Now, thirty-seven years later, only four more schools are offering that luxury. That is appalling!

To read the article, just click here.

I am anxious to hear what you think about it. Please feel free to comment.

Later,

Mike

I Love My Parkinsons Disease

Yes, I was shocked too. My personal care attendant and I were on the freeway yesterday and drove up behind a car with I LOVE MY PARKINSONS DISEASE on the back window in four-inch letters like you would see on the front door of a house. We followed him for a while and eventually drove up beside him. I wanted to roll down my window and ask him what he meant by it.

I did not do that, but it has bothered me ever since. I Googled the sentence and found nothing. I cannot think of a reason why anyone would love Parkinson's Disease. Can you?

On another note: I have had some requests about the status of my book. Sadly, I have nothing to report. The publisher told me it would be ready by Thanksgiving. They told me it would be ready in one to two weeks when I submitted it November eighth.

I just received a call from the the publisher and evidently they sent me the proof, but I never received it. I am very disappointed. I wanted it to be ready for people who are not into football and had their Tryptophan nap to be able to read it Thursday afternoon or evening. I trust it will be ready and online soon.

I want to wish all my readers a Happy Thanksgiving, and keep checking back to see the status of I Still Believe In Tomorrow.

As always, I look forwards to your comments.

Later,

Mike

SCI Facts and Figures

In reviewing some of my recent posts, it seems I am focusing on disability issues. I want to continue doing that and give you a great website to learn more about spinal cord injury facts and the incidence and prevalence of SCI in the United States. If you are a spinal cord injured person, have a family member or friend who has a SCI, or just want to learn more about the issue, you should check out this page and the rest of this website.

According to the National Spinal Cord Injury Database's website:

The National Spinal Cord Injury Database has been in existence since 1973 and captures data from an estimated 13% of new SCI cases in the U.S. Since its inception, 26 federally funded Model SCI Care Systems have contributed data to the National SCI Database. As of October 2007 the database contained information on 25,415 persons who sustained traumatic spinal cord injuries.

You can get to the rest of this piece by clicking here.

One of the interesting trends I have seen these last several years is the changing terminology. One word in particular is changing — quadriplegia is being replaced by tetraplegia. They mean the same thing, and I am not quite sure why the change. Do you know? This article uses tetraplegia throughout.

In my mind, I will always be a quad. To me, a tertra is a tropical fish. Of course, that's coming from an old quad.

I look forward to your comments.

Later,

Mike