I know this web page is long, but It's just too important for me to tell my whole story. While I've done well with Parkinson's, I have also experienced an inherited clinical depression disorder that almost cost me my life. Please read this page in it's entirety. Major depression can end your life much faster than PD. And if you suffer from depression, please get in touch with me - or anybody who can help you.
My sense of taste and my sense of smell disappeared. I knew that because suddenly, cheap wine tasted as good as the pricey stuff.
After having open heart surgery, I found I had lost the ability to a jacket on from behind my back. Shortly thereafter, I started to have extremely severe bouts of constipation. Having a bowel movement was like trying to pass a broom handle.
The tip of my right index finger began to tap on the steering wheel when I stopped at traffic lights. It was then that I thought that I might have PD. But since the symptom seemed so trivial, I decided to adopt a "wait-and-see" approach. Months later, during my annual physical, my family practice doc examined my tremor for a full five seconds saying, “It’s just an essential tremor, nothing to worry about.”
Yet as the finger-tapping became more frequent and pronounced, I could still make it stop by just focusing my awareness on my right hand. I was becoming more convinced it was PD. That July, I went to a neurologist who made the diagnosis of PD. We agreed to not start meds even though my gait was a little slower and my arms didn’t swing as much as before. When I asked him what I could do to make a difference, he responded by saying(and I quote him) “Exercise! Exercise! Exercise!” It was then that I decided to take up yoga to integrate my body and my mind more completely - great decision.
I joined our local PD support group. OMG! It was so dull and depressing. About a dozen people attended the monthly meetings. There was no laughter, no optimism. But about then, the director stepped down because his wife had become critically ill and the guy running the meetings couldn't get around as well. So two months after my first visit, I stepped up and became the director. I was the only medical professional in the group. I had one more skill, twenty years earlier I was a professional speaker on the topic of “Health and Humor.”
2013 and 2014:
I visited my neurologist three more times, once every six months. He began to shake his head when he witnessed the failure of my symptoms to progress, saying he’d never seen this before.
I kept on asking this question: "WHY AM I DOING SO WELL?"
I didn't get an answer to my question, but I decided to go ahead anyway and push my exercising (which now included weightlifting) even harder. I started taking three yoga classes a week and practiced it at home daily.
My neurologist said he’d never seen a PWP do so well. So, in case is was misdiagnosed, he finally ordered a DAT Scan. It came back positive. He just shook his head and kept mumbling “It’s gotta be the exercise.” Because I was doing so well, I decided to go on the Internet and set up a website. I started a podcast which I called, “Sweating out Parkinson’s Disease.” For the next three years, I interviewed fellow PWPs from all over the English-speaking world. By that time, my PD was getting a little worse; so my neurologist tried a number of meds that didn’t help at all (Azelect, Sinemet, Amantadine, and Cogentin.) I concluded I just didn’t need them.
That autumn, I attended a neurology conference on PD. I asked the most senior speaker there the following question: “Could it be that I have a milder case of PD.” He literally growled at the idea, flatly stating that there was no such thing as a "mild case." When I pressed my question, “Why am I doing so well?” he (no joke) literally waved me away with a hand gesture and didn’t answer.
I formed a 501(c)3 non-profit corporation to take my ideas abroad by offering to treat PWPs in Uganda. I figured there would be less of an organized medical resistance to the idea. What I didn’t anticipate was that the PD group in Uganda was actually a front for a group of criminals that was bent on fleecing well-meaning Brits and Americans out of their money. After a week there and seeing only five cases of PD from among the hundred people I examined, I made a visit to the medical director of the regional hospital. After he had interviewed me and my Ugandan "staff" together, he abruptly told the "team" to get out of his hospital or he would have them arrested. He told me to stay in the room.
When we were alone, he said, “Doctor Hageseth, unfortunately we see this happen too often to well-meaning people from the US and UK. You are in danger. You should have nothing more to do with these men. I suggest you fly back to the United States as soon as possible.”
I did as he said. I flew home and closed down the charity. I sent the remaining funds to a group in the UK who wanted to help PWPs in Africa just as I had.
I finally started Carbidopa-Levodopa and for the first time, it helped to relieve my tremor and muscle spasms.
The Covid pandemic came and I stepped down from being the director of our local PD group. More importantly, an illness that has haunted my family for generations elbowed its way into my brain. I'll gladly take Parkinson's disease over severe biological depressive disease anytime.
My mother suffered from major depression starting in her early thirties. In 1946 when I was five years old she was committed to the state mental hospital in Jamestown, North Dakota. She received twenty "shock treatments" over a period of three months. Once home, it took from September to December of 1946 for her return to normal. She was flaky and shaky and had lost her memory of me being her third child. But in time, her memory did return ... mostly. The depression recurred two years later. Same ECT, but fewer treatments, and she returned home, this time recovering more quickly. And to all of our amazement, the following year, she renewed her license as a registered nurse and returned to working in our local hospital. She was one of a select group of RNs who made up "the special duty section." Those nurses cared for the sickest patients much as ICU nurses do today. When antidepressants appeared in 1954, she started them and never returned to the psychiatric hospital again.
Little wonder I ultimately became a psychiatrist. My brother, sister, and I have a total of nine children. Three of the nine have attempted suicide at some time during their lives. One succeeded.
I knew I was haunted by the 'great darkness,' but interestingly it made me a much better psychiatrist. I knew what my patients were going through. I also treated patients with electro-convulsive therapy. I became to be 'go-to' doc for patients experiencing "treatment-resistant depressive disease." I left medicine in the early 2000s. Needing a break from medicine, I became a television producer making cable television shows about bird-hunting dogs.
I then tried my hand at medical research for new anti-depressant therapies. It was dull and boring. I also worked on medical projects in Third-World countries, specifically Honduras and Uganda. And then since 2011, I devoted myself to helping persons with Parkinson's disease.
Fast forward to the pandemic, all hell broke into my life. I became possessed by the demon of suicidal depression. Anti-depressant medication caused me to fall resulting in a shattered knee and then three months later a broken hip. So I chose the treatment that saved my mother's life and saved the lives of many of my patients. I had electro-convulsive therapy. IT WORKED!. And it wasn't all that bad. And something else I found out, ECT improves Parkinson's symptoms very well. No DBS for this cowboy. If my PD gets to that point, I'm going to get ECT again.