Dave's Story

My name is Dave Koch. I am originally from Grand Forks, North Dakota. Both of my parents were physical therapists. As I grew up, I watched them work with all different types of diseases and injuries. My four brothers and I would take turns helping my mom at the nursing home. From about the age of nine we would push patients back to their rooms after therapy sessions. We were frequently around older people. One little lady in particular that I remember was named Minnie. She was a 90-year-old woman, about 4’ 8”, who came to clean our house. She did not drive so she walked to the house. Whenever she was coming we had to clean the house completely. When Minnie arrived at the house, she would do a little vacuuming and I think some dusting. Then she would sit with my mom and have coffee. I learned a valuable lesson from watching how my parents treated people, not just physically but as a whole person – body, mind, and spirit. At one time Minnie had been a patient of my Dad and wanted to continue to be active. That is how she started cleaning our house.

My brother and I moved to Tucson, Arizona in 1980. I went back to school and graduated in 1990 with my Physical Therapy degree. Most of my career has been in home health, dealing with a wide variety of diagnoses. My experience includes treating thousands of orthopedic patients. I have been through various continuing education courses, which have helped shape my career. Some include courses for treating the spine, fall prevention including the vestibular system, and training for treating Parkinson’s disease (PD). I have been certified in a PD treatment approach and have worked with many patients that suffer with PD.

In January 2010, at the age of 50, I had both of my hips replaced at the same time. In 2015, while playing racquetball, I ruptured my right rotator cuff. The rotator cuff surgical repair ruptured and the surgery had to be done again. With each surgery or injury I would take it on as a learning experience. I would push myself in my recovery to see just how well a patient should be able to heal. Yes, I overdid it at times. After my hips were replaced, it took me a full year and a half to get back to playing racquetball at the level I was playing previously. I recorded much of my recovery so that others might benefit. With my shoulder it was also a learning experience as it took some time to get back on the racquetball court, and back to functioning well with all my activities. Everything that has happened to me has been a learning experience and I was able to recover with hard work. I hike rim-to-rim across the Grand Canyon twice a year and recently completed my 30th trip. I continue to play racquetball and enjoy the competition.

Noticing a tremor

Sometime after my hip surgery I noticed a very slight tremor in my left leg. My sense of smell was lost around that time also. I knew that was one of the early signs of PD but did not give it much thought. After the first cuff surgery in 2015, I noticed a tremor in my left hand. For the first time, a patient noticed and mentioned something about my tremor. Since then I have had other patients ask if it’s them shaking or me. It is usually me. Some patients have remarked that their leg is quivering as I have my hand on them. I have to reassure them that they are not the one quivering.

So I went to the neurologist in February 2017 and he diagnosed me with PD. He offered me a pill that is supposed to help with the symptoms. It is very frustrating when you take a pill that is designed for slowing the progression of a disease; there is really no way of knowing if the medication is helping. I have days when I shake more than others and stress definitely increases my shaking. Initially, I was resistant to taking the pill but I am taking it now.

I made an appointment with a PD specialist to get a second opinion, and he confirmed it was Parkinson’s. When asked if I should make a follow up appointment, he stated it would be superfluous, as I was already seeing a neurologist. I looked into participating in a study, but did not qualify for that study and have not pursued anything further at this time. The second opinion was from one of the top Parkinson’s clinics in the country and I’m guessing in the world. I expected that I would be receiving hope of some treatment approaches. My expectations were left unmet. I am not a person who gets discouraged easily but this was a blow to me. As in the past with my other injuries I was willing to fight the fight. But I wasn’t given any gloves or offered a chance to get in the ring. I was being sidelined with no chance to participate in the game. There is no cure and it is a progressive neurological disease. Not a lot of encouragement in those words. Some thoughts run through my mind. I love what I do. How are my patients going to accept my shaking? Like many other PD patients, I have a granddaughter and there are so many things I want to do with her. I’m hoping to hike rim to rim with her in 2026 when she turns 12. Knowing what the progression of this disease can look like, it causes me to question how this will affect my life.

A new learning experience

Everything I have encountered in the past has been restored. I was able to exercise through towards a full recovery. When treating patients, it’s like having a toolbox and you pick the exercises that will assist in the recovery. With PD you look in the toolbox and it’s empty. Being diagnosed with Parkinson’s, as with my past health issues, is a learning experience. There really isn’t a good place to go to find help with slowing the progression of PD. No instructions were given to pursue other things. Maybe they thought because I am a physical therapist, I would know everything that is available. As I have talked with others, their experiences are no different. It is a progressive disease with no cure. They are offered medication that might help slow the progression, nothing beyond medication.

I have always been one to encourage and give hope to my patients. I find myself now in a position of experiencing something new. In the past I have been able to work towards full recovery. I’m sure others with this diagnosis feel there is little or no hope. I have treated thousands of patients in my career with many different diagnoses. The treatments for PD were always after the symptoms had become severe. In my many years of experience I have never had a patient referred for early intervention. I now see how big a problem that is.

I have been known to say there are worse things out there, and truly that is the case. To be really honest, it is difficult. I have always been very physical with my activities. I have worked hard to keep myself in shape so that I can continue to live with the best quality of life. I have always exercised and encouraged others to do the same. I enjoy working with my hands but I’m not sure how long that will last. Hugging and vigorous exercise have been shown to stimulate production of dopamine. I enjoy hugs and physical touch. Maybe part of that is this disease and longing for that stimulation of dopamine. I can stop the shaking but if you notice I’m not shaking, I may be paying more attention to my shaking than what you are saying. I have observed the PD patients being treated poorly by my peers. Because they don’t move as quickly or as well, people think they have less potential. I have been in meetings with health care clinicians and hear their comments that patients can not be helped due to their PD. This indicates a lack of education. Although there is not a cure we can make a difference for people with PD.

Creating awareness

Having treated PD for so many years, and now experiencing symptoms for myself, many questions come to mind. How bad will the symptoms get? Will I be able to continue working and participate in activities that I enjoy? What is the best approach to keep me the healthiest for years to come? Should I cut back on work? What should my exercise routine be? Will the people around me be respectful? Am I doing everything I can possibly do to help my quality of life in the future?

The average Parkinson’s patient is 72 years old. Onset is usually after the age of 50. Navigating the Internet is not easy. A person can see something online, like a video, but it does not give a true picture of what it is to participate in the many interventions. At this time I know there are approaches and treatments that can delay the progression of the disease. My hope is that those suffering with PD can come to one place and be educated on options that are currently available. The event will have presentations, demonstrations, and options to participate in various treatment approaches. Speakers will present the most up to date research to give hope to those in attendance. There will be research studies that attendees can be part of, to help move towards a cure. My hope is that people will be connected with the healthcare provider that can benefit them and allow them to stay functional, safe and positive - something for everyone, from first diagnosis to advanced PD. Approaches to help with body, mind, and spirit.

I will be putting on awareness events for PD starting in 2019 for exposure to many different treatments like dancing, boxing, various exercises, pharmaceutical, counseling, medical equipment, and many, many other approaches. My hope is to address the body, mind, and spirit of the PD patient. There will be continuing education opportunities for the healthcare provider. This would be open to patients, families, healthcare providers, and the community, all in an attempt to improve the quality of life for those living with Parkinson’s while pursuing the cure.