On Friday, Brigid and I interviewed Dr. Catherine Thompson, PhD, MS, PT of the Physical Therapy school here at Rockhurst. We were not sure what to expect when we met with Dr. Thompson, and in fact neither of us had even been in the part of Van Ackeren where Dr. Thompson's office was located. It is safe to say we left with a truly unforgettable experience.
Dr. Thompson is the type of person you could speak with for hours about anything. She has been a physical therapist for upwards of 35 years and has extensive experience not only domestically, but in many foreign countries as well. She has treated numerous patients with muscular dystrophy (MD), especially children and young adults suffering from Duschennes MD. I do not exaggerate when I say that Dr. Thompson transformed our outlook on the research project.
We began by explaining the idea of grid-computing. She was not familiar with the concept, but she was very helpful in explaining different ideas of research, therapy, and treatment for people suffering from MD. She was well aware that there is no cure for MD, but she was very well-versed in therapeutic alternatives. For example, she told us about an organization that sells equipment, such as electric wheel chairs, for a fraction of what the equipment actually costs, but makes you promise to return the equipment after your child passes. She said it can be likened to a library, where you can check out the equipment and return it. Children with Duschennes can live in to their twenties, but, according to Dr. Thompson, usually develop respiratory infections and other curable illnesses that end up as the cause of death, because the young adult is unable to cough. Coughing is the usual mechanism for getting out bacterial fluids, but people living with MD do not have enough muscle strength to expel said fluids.
She had an striking amount of compassion, which is the main thing I will never forget about the interview. She truly hurt for the kids who grow up being ridiculed for being clumsy--for kids who are yelled at by their fathers because they are not any good at sports. She recalled a time when she was working with a child in Kyrgyzstan who had been diagnosed with MD, and seeing the pain in not only the child, but the father as well. She reminded us that not all countries in the world have "Disability Acts" that require buildings to have elevators and ramps, and that this family would have an extremely trying time dealing with this disease. Dr. Thompson teaches with the same compassion. Part of her curriculum involves showing her students the poem, "Welcome to Holland", and allowing the students to make worksheets that are designed to address treatment methods, both physical and mental for both child and parent.
With tears in her eyes, Dr. Thompson talked about a poem, entitled "Welcome to Holland". This poem is posted in our blog. It really summarizes our new outlook to the research project. Prior to the interview, I will not deny that the research project was somewhat intangible for myself, as I could not see the fruits of our contribution. This poem brought the project back to a very personal level for both Brigid and I. From a parent's viewpoint, it describes the excitement of anticipating the birth of a child. It then moves to talk about how having a child born with a disability is not what the parent had planned, but how this child is still a beautiful gift with unthinkable potential.
Dr. Thompson gave incredible insight to a devastating disease. She allowed Brigid and I to personally see the affects both
physically and mentally on the patient and the family. After leaving the
interview, we both now know why research for a cure is a very important
aspect of muscular dystrophy, because a cure gives hope in our every day. Until
the cure is found, people need to see Holland how it truly is… a blessing.
