My Trip to Minnesota: Final Thoughts

Center for Magnetic Resonance Research (CMRR)

The center is located on the campus of the University of Minnesota. They have a lot of equipment on site. Here is a list for those interested. (https://www.cmrr.umn.edu/resources/) They have a 16.4 Tesla machine but it is not for humans… The building is set up in such a way that there is an MRI room down every corridor. It is quite impressive.

In addition to the CMRR, there are quite a few medical facilities on the campus, devoted to high specialized needs. There is also a hospital, as well as an extension of the Mayo Clinic.

The Study

The study was conducted by Dr. Gulin Oz (U of M), Dr. Khalaf Bushara (U of M), and Dr. Gomez (Chicago). My main contact for the study was Diana Hutter. Diane was the person that initially contacted me about the study, and worked with me during the entire process. She also evaluated me when I arrived at the CMRR and stayed with me while I was at the facility.

While I was there, I also met a graduate student who was doing research to find a correlation between the size of a person’s cerebellum and the intelligibility of their speech. The evaluation only took a few minutes, and I was happy to help.

The MRI

The reason for my trip was to have 2 MRIs. The first was done on a 5 Tesla machine. The second was done on a 7 Tesla machine. As a point of reference, most MRI machines operate at 1.5 Tesla. Although there was a major difference in the overall construction and wiring, the scan was the same as those I had done before. The newer machine actually had a fan, which was nice. Believe it or not, I fell asleep.

Hope

Most of you that know me know that I have a generally positive disposition about my medical conditions. I am very blessed in my life and I have so much that helps me get through the day. However, it is sometimes hard to be hopeful that I will live to see significant advances that will improve the quality of life for ataxians. That was not the case, though, during my visit. I was in a “hotbed” of SCA research and I got to meet many people that were devoted to ataxia. I also saw and read about some of the progress being made, and it was very reassuring.

My Trip to Minnesota: Day 3

My first 2 days were loaded with “free time” but that was not the case today. I was checked out of my hotel and at the center by 7:30 a.m.! The MRI I underwent this morning was in the machine that is rated at 7 Tesla (the one of Thursday was 5). They also have a 10.5 machine – the only one in the world!

After the scan I had a quick lunch at a Chinese restaurant and went back to the airport. I got to ride back in a Lincoln with 2 women from Rwanda. We had a fascinating conversation.

At the airport, I had some extra time so I requested wheelchair service. They took me through a side gate and my entire check-in process took about 10 minutes. It wasn’t as easy as it was in Kzoo, but both were better than the alternative of waiting forever in the main line. After the check-in they brought me to my gate, where I watched the arrival time of my flight change to a later time. Then again. Then again. Then again…

When I arrived in Chicago, there was only 4 minutes until my next flight took off. Even if I had rockets on the chair, I would not have made it. The only option was to get a ticket for the next flight for Kalamazoo, which was 5 hours later. The arrival gate also changed 3 times, which meant that I was making a lot of calls to be transported around. I finally arrived in Kalamazoo at 12 midnight.

Tomorrow, I will write a summary of my experience and share some other thoughts.

My Trip to Minnesota: Day 2

My first evaluation today was not until 1 p.m., so I had some time to spare. I spent the morning reading and had lunch at a delightful and delicious Iranian restaurant. When it was time for the evaluation, I took the shuttle to the Center for Magnetic Resonance Research.

When I arrived at the center (only a few minutes from the hotel) I was greeted by Diane. She has been my contact throughout this process. After she completed a brief questionnaire and motor evaluation, we went over the MRI basics. Then I changed into scrubs and we went to the MRI room (the lab has several on site).

For the MRI, they slid my entire body in. My head rested in a “helmet” (a padded square), and they lowered a shield over my face. The scan took about an hour. When it was finished, I returned to the hotel for a nap and went to dinner. I ate at a near little place called the Loring Pasta Bar.

A few fun facts I learned today…

-Dr. Henry Orr, who is currently at the University of Minnesota “discovered” SCA1 in 1993.

-SCA, in its various forms, is more common than ALS.

-The MRI machine is a 110 ton magnet with 720 miles of wire.

-The heating element in the MRI machine requires 40,000 liters of helium to keep it cool.

My Trip to Minnesota: Day 1

Here is some info on my trip to Minnesota for the ataxia research study.

First, I just need to say that air travel with ataxia is not fun. The last time I flew, I went to California. I had a suit, a mini-wardrobe, extra shoes, etc.  This time, I brought a single bag. And even that felt like it weighed 10,000 pounds. It also took a VERY long time to move throughout the airports. During my layover, I was the last person on the flight (instead of the first). I will say that the staff at the Kalamazoo airport was extremely helpful. They gave me a chair to sit on when I needed it, and helped me through the scanner – after I kept crashing into it and setting off the alarm.

Getting on and off the plane, as well as getting in my seat, was a bit of a challenge. Fortunately I only had one charley horse and I was able to control it rather well. If I hadn’t, I might have been considered a security threat.

When I finally arrived at the hotel (via a shuttle) it was around 5 p.m. and I had not eaten. The hotel shuttle did not operate from 4 to 6 because of rush hour traffic, so I walked down to the main area of campus for dinner. It was drizzling which made the walk extra exciting. I had to laugh because each time I crossed a street, the timer started. It used to be the case that I would make it with time to spare. Now, I was getting there after the hand was solid…

Because I still had some per diem left for the day, I went to a local sports bar for a second dinner. Turns out it was karaoke night. So.

Tomorrow, the actual studies begin.

God bless!