Once upon a time in a land not too far away, three little boys quietly waited for one of the boys' mothers to come outside. You see it was laundry day and Alex's mother would be coming out of the house with some laundry to hang on the clothesline. She thought nothing of it when she heard the giggling behind her just thought it was her son being funny. Until all of a sudden she heard the chants of three little boys and she was being blasted from three directions by Super Soaker squirt guns. She screamed and ran for the house. Before she could get to the house, she was cut off by her son and one of his friends. The three of them stood, two boys giggling and one mother begging when suddenly the woman made a break for the front of the house. The three boys took off in the opposite direction to cut her off. When the boys rounded the corner of the house they stopped dead in their tracks… there stood the woman with a smile on her face and the garden hose in her hand.
I remember those days well. I may be older and a little shaky but I still have my sense of humor. My journey with Parkinson’s began when I was just 45 years old. Out of the blue one morning I woke up and I just didn’t feel the same. One side felt weaker, not a lot, but enough where I noticed it. Then I noticed a slight tremor in my leg. Not one to mess around with one’s health especially since I was a single mother, I made an appointment to see a neurologist. The appointment consisted of various tests none of which were blood related. It took him a total of 10 minutes and he told me I had restless leg syndrome. He gave me some medication and sent me on my way. One week later I called the doctor and said, “Nothing has changed”. He prescribed another medication and told me to take that as well as the first medication.
After just 2 days, I was at work, feeling dizzy, disoriented, and out of sorts. My speech was garbled. A coworker walked into my office at the same time I was reaching for my purse. Looking up I asked her to take me to the hospital because I feared I was over medicated. The next week I was out looking for a new neurologist. I found a gem of a man, someone who came highly recommended. One important thing was that he listened to me. I told him the symptoms and I told him the diagnosis given to me by the previous neurologist. He then examined me using the same tools that an officer would use to evaluate a drunken driver. A blood draw was not needed.
When he confirmed my suspicion that I had Parkinson’s, I wasn’t surprised. He asked, “How does it make you feel?” To which my reply was, “I can’t give it back can I?” I then asked my doctor if he would mind if I got a second opinion. “By all means. Where do you want to go?” I told him that I wanted to go to Mayo, but I knew it would take a while to get in there. Knowing that I was anxious my doctor managed to get me into Mayo within 2 days. Once again the examination was very similar to my neurologist in St Cloud. After the exam the doctor shared with me that at first glance he couldn’t believe I had Parkinson’s. I was passing the test and everything looked good until the math quiz. Take 7 from 100 and keep going backwards. Augh! Math had never been my strong suit. I started shaking like crazy. I like to call it doing the ‘funky chicken’.
After everyone agreed with my diagnosis it was time to set up a plan of action. Before leaving Mayo I met with one of their research teams where I again answered questions and underwent the same mobility test, but this time there was blood drawn. I then was placed on the National Registry. This registry is used to communicate any findings on a cure for Parkinson’s as well as to keep in touch with those people that are registered and monitor their progress with Parkinson’s. Everyone in my family was evaluated to rule out Parkinson’s, with the exception of my brother, who was not yet 40 years old. A couple years later, when my brother turned 40 years old, Mayo contacted him and made arrangements to have him flown in from Anchorage, Alaska to undergo an exam. The final outcome after all the exams, was that out of a family of 8 only one person had Parkinson’s.
Knowing that my life would need changing, I decided to put together my bucket list. Just because I had Parkinson’s didn’t mean I had to stop living. With the urging of a friend I took up the art of trap shooting. That sport had me hooked from day one and I still do it today. I’ve won a couple of tournaments too. I’ve always wanted to try archery and found out very quickly that this was a sport I enjoyed and still enjoy today. I found that the only thing holding me back was me. If I was to say I couldn't do something because of Parkinson’s, that would be very untrue. In fact, I've been more curious about things that I normally would be scared to try since my diagnosis.
I had put off seeing a neurologist here in Fargo because I didn’t want to let go of my neurologist in Saint Cloud for fear of not finding a suitable replacement in Fargo. I was living in Moorhead and driving to St Cloud once a month to see my neurologist. Then came the day when my neurologist informed me he was going to be retiring. Nothing's worse than having to switch doctors. You have to re-educate and gain a mutual understanding, as well as a mutual respect and trust. So I hit the pavement again and found a neurologist in Fargo. Then my nightmare began.
The doctor I saw said it is looked like I didn’t even have Parkinson’s. I said to give the medication credit for that. Just the same, the doctor informed me that he was taking me off of all of my meds to get a baseline. Days after I’d been taken off my medication, I had lost control of the normal functioning of my body. I needed help feeding myself, bathing, going to the restroom and so much more. One time when I was alone, I needed to go to the restroom and I literally had to crawl on my stomach to get there. It was an awful time, until finally I panicked and called an ambulance. I wasn’t feeling safe anymore. I couldn’t cook for myself…I couldn’t feed myself…it was frustrating and scary.
Normally, you would expect that your doctor would see you because of the difficulties you were having but this doctor held off and said to wait for my appointment which was another 4 weeks away. I was in the hospital for 2 days and even then, one of the doctors that saw me said I didn’t have Parkinson’s. Since I couldn’t walk they couldn’t send me home. And since I didn’t have a ‘disease’ I was placed on the fifth floor of Sanford with the diagnosis of conversion disorder. For the next month I was subjected to counselors and psychiatrists trying to convince me that I did not have Parkinson’s and it was all in my head. After a month, I still could not be transferred home so I was put in a nursing home.
Nobody was convincing me that I didn’t have Parkinson’s. I just laid there. It was awful. My family continued to hold conversations with the doctor stating that he should examine me again. He finally relented in July and when I was rolled into the room in a wheelchair his face went white. He knew right then and there that I had Parkinson’s. An examination did not take place as he said he was referring me to another specialist, Dr. Harlow - and within 5 days, gave me verification, hands down that I had Parkinson’s. The day after I saw her she had given me new meds. I was amazed… I had JUST taken them and I could walk.
Now the task was to find a place for me to live. On October 1st, 2015 I was sprung from the nursing home and now I am back to independent living, buying my own groceries, taking care of myself, driving my car, and I even have a job again. In other words, I have my life back. To sum it all up, sure, there are good doctors and not so good doctors out there. But you need to be your own advocate and not give up. As they say they’re physicians not magicians. At the time, I started doctoring with Dr. Harlow Sanford had just purchased a DAT scanner. This machine shows a color picture of the brain that shows the different chemical levels in the brain. It helps the diagnosis for Parkinson’s to be that much more accurate. Parkinson’s should never stop you from doing something. It just might take you a little longer. And those water fights I had with my son? We still have them. Only this time I’m using the sprayer at the kitchen sink.