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. ( 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 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.


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!

Homily: 13th Sunday in Ordinary Time, Year B, 2015

During my years as a music director for the Catholic Church, I provided music for hundreds of funerals. At nearly each one, the first reading came from the book of Wisdom, specifically Chapter 3, which reads “The souls of the righteous are in the hand of God, and no torment shall touch them. They seemed, in the view of the foolish, to be dead and their passing away was thought an affliction and their going forth from us, utter destruction. But they are in peace. For if to others, indeed, they seem punished, yet is their hope full of immortality; chastised a little, they shall be greatly blessed, because God tried them and found them worthy of himself.”

The Scripture passage magnifies the first reading from today, which begins with the statement that “God did not make death, nor does he rejoice in the destruction of the living.” This is such an important idea for us to understand. Death is in the world because of one man, Adam, and because of sin. It is not something God wants, but it is something he must allow, something we must experience. God certainly has the power to remove death from the world, but doing so would mean that God would have to change our very existence, and take away our opportunity to reconcile our lives and return to Heaven. In Salvifici Doloris, a letter on redemptive suffering, Saint John Paul II writes that “Suffering must serve for conversion, that is, for the rebuilding of goodness in the subject, who can recognize the divine mercy in this call to repentance.” By the same token, we need to die so we can be born again in to new life.

But, as always, God will not abandoned us. In today’s Gospel, we see two accounts of Jesus’ healing mercy. The first is when a woman, stricken with leprosy, touches his cloak and is healed by him. Even though a great commotion is happening around Jesus, he is able to tend to the woman as though no one else is there. The second account of his mercy is with Jairus’ daughter, who has died. Just as with Lazarus, death does not worry Jesus. He even refers to them both as asleep and not dead. When he speaks the words “Talitha koum” the girl rises. For us, the hearers of this story, this brings meaning to the words of the Gospel Acclamation we just heard that says “Our Savior Jesus Christ destroyed death and brought life to light through the Gospel.”

Today’s readings confirm for us that death is not permanent, and that eternal life awaits us. However, there is still much for us to do while we are on earth. In his letter to the Corinthians, St. Paul expresses his gratitude to those who have lived their lives well and for others. And he also reminds them of what Christ did for them, and that it is important for them to do the same for others. He tells them they need to supply for the needs of others and ensure that all are taken care of. He even reminds the Corinthians of a principle that was established when the book of Exodus was written: that each person should only take what they need so that everyone will have enough.

Our lives are filled with opportunities for us to live well, to live justly, and to live as Christ taught us. And when our earthly life is over, we can be assured that Heaven awaits us, because Christ conquered death for us.

Homily: 12th Sunday in Ordinary Time, Year B, 2015

As I was preparing my homily for this week, I tried to relate to the situation Jesus and his disciples were in while they were in the boat. I thought about the times life events caused my faith to be tested. I thought about the times that I had to rely on another person to see me safely through a situation. And then I realized that I had been in this exact situation before, as a father.

There have been a number of times when I have been asleep, either in my bed or on the couch, and one of my kids has woken me up to deal with something that was going on. Sometimes it was a “monster under the bed,” a loud burst of thunder, high winds, or strange noises outside. Regardless of the situation, I would rise from my place – often tired and ready to go back to sleep – to deal with the issue. Once all was back to normal, I remind my kids that I am there for them no matter what happens. I had a similar conversation with my daughter last night, when, for a second day in row, she was scared to sleep because of the storms. I assured her that everything was going to be okay and that if anything serious happened I would be right there to help her. She and I both know that to be true, but sometimes she needs some reassurance.

I believe this is the same assurance that Jesus gives his disciples. I could just picture them scurrying about, trying to figure out what to do. They finally decide to wake Jesus up to solve the problem, and can’t believe how easily he handles it. But, rather than only quelling fears, Jesus is actually able to calm the wind – something my kids wish I could do. Jesus is the real deal. And the question he asked his disciples – “Do you not yet have faith?” – is asked by him not for his own sake, but for that of his disciples.  I have said something similar when I have asked my kids “Don’t you know I will always be there for you? No matter what happens.”

The first reading also reminds us of the importance of faith. It takes place after the trials Job underwent, and in it we see God reminding Job of how he protected him despite his hardships. The reading, like the Gospel, also takes place during a storm. Once again, we are reminded that the power of God is greater than anything.

For someone at sea, a storm is a terrifying and dangerous event. But with God, there is safety and calm. There is nothing to fear. This is an important message for us to take away from today’s readings, but I think there is another.

God was not trying to only give assurance to Job. And Jesus was not trying to only reassure his apostles. They were both pointing to a much greater life for us, if we remain faithful and faith-filled. As Paul told the Corinthians, we now have the opportunity, because of Jesus, to become a new creation. We have a Church, given to us as a foretaste of the Heavenly eternity that awaits us. And we have, Body, Blood, Soul, and Divinity, the gift of Jesus in the Eucharist.

God intends for us to be with Him in Heaven. If we are to get there, we need to live accordingly. To help us do so, he gives us the grace we need to see our way through many situations. And when we need some extra help, he is always there, waiting for us.

Homily: 11th Sunday in Ordinary Time, Year B, 2015

I have not seen a mustard plant before. I have seen pictures of one, but not an actual plant. I have seen mustard seeds, though, and I must say that they are remarkable. They are remarkable because they are so tiny, no bigger than a grain of sand. I received a bag of them at a training once, and hundreds of them were able to fit on the face of a quarter. From this tiny seed comes a large plant, one that can grow as tall as eight feet.

Though I have not seen a literal mustard plant, I have seen figurative ones. I have seen them in the children that participate in the formation programs that I oversee, when they leave their classes eager to use their new knowledge and by their participation in the Sacrament liturgies. I have seen them in my children’s classmates at St. Monica, when they gather together to celebrate Mass and through the strong foundation they are gaining in their Catholic faith. I have seen them in the catechists and teachers at our churches and schools, when they share their tremendous gifts with the children they care for. I have seen them in the clergy and the laity, when they do work for and through the Church. I have seen them in my family, when we mark our day with prayer and do our best to live Christian lives. And I have seen them in all of you, as we work together to carry out the mission of Christ on earth. Wherever the seeds of faith have been planted, there is growth. As the first part of the Gospel tells us, we may not know how, but we know it happens.

The Gospel Acclamation for today says “the seed is the Word of God, Christ is the sower.” I feel this is an apt comparison to the work of God in our world. The tree that is planted in the first reading from the book of Ezekiel represents the beauty and fertility of the Davidic house, the line that Jesus will someday come from. Scholars note that this tree can be likened to the cosmic tree, or one tree which draws sustenance from the earth and provides many things for all of creation.

In the second reading from the letter to the Corinthians, St. Paul explains that it is necessary to live a good life and the preserve our bodies because we will someday appear before the judgement seat and our place in the afterlife will be determined. The Jews at the time thought that those who died before them were among the righteous dead in Heaven, but there was no sense of resurrection or eternal life until Christ came. St. Paul’s insistence on living wisely was an attempt to put to rest any remaining ideas new converts to Christianity had that disparaged the body, and to equip people with what they needed live a good life.

St. Paul also noted that we should walk by faith and not by sight. As we go forth in a few moments to receive Christ’s Body, Blood, Soul, and Divinity in the Eucharist, let us walk with tremendous faith and remember the great things we can do in this world with what he has planted in us.