In December of 2018 we had gone to lunch with a friend after returning from our family vacation to Universal and visiting family in Florida. As we sat at lunch at Panera Bread I repeatedly had to lean across the table to hear John. His hearing hasn’t been the greatest since the military so I originally thought it was due to the background noise in the restaurant. Even leaning across the table to hear him didn’t help much. I had to ask him to speak louder multiple times. To be honest, I was a bit annoyed at this point and was wondering what his issue was.
Fast forward……January 2019. John would speak softly still and his voice would trail off at the end of the sentence so I kept having to ask him to repeat. At this point, I think he thought I had a hearing problem. I was sitting at the table in our breakfast nook while he was making breakfast one weekend morning. I noticed that his left forefinger was doing this twitching thing. I asked him why was he doing that. John replied, “doing what?” I said, “moving your finger like that.” John didn’t realize he was doing it. This was the beginning of what was to come.
Being who I am, a researcher at heart I started researching twitching fingers, and soft voice. I landed upon a page that described a lot of what John had been experiencing for a few years. He has had horrible painful leg cramps where his leg tenses and his toes curl for about 5 years. I would wake up as he jumped out of bed in excruciating pain and rub his calf for him until it stopped. I came up with the Parkinson’s Disease ‘diagnosis’ and sent him to our family doctor to discuss it with them. John went alone and the doctor agreed to send him to a neurologist.
Neurologist Visit- John went alone in April as I was at work and at the time was unable to miss during his appointment due to a meeting. The neurologist had John fill out paperwork and then examined him. He told John that ‘his wife is a very smart woman’ and that he ‘agreed’ with my diagnosis. This neurologist referred him to Missouri for a DATSCAN as this is a specialty scan not performed everywhere. I never want to be told by a specialist that I am smart ever again……
DATSCAN- I took the day off and travelled to Missouri with John. He had his scan April 26th. We left at 6 am and arrived at Mercy. Initially they gave him the ‘potion’ to drink and sent him out to the waiting room with me. This was at 1030 am. At 1145 they came out to tell us the machine was broken and he was the only scan that day. I replied that we drove 2.5 hours and would wait all day if needed. They sent us to lunch while the repair guy came to fix it. We went to Hu Hot and enjoyed our lunch. We had to be back by 1. At 1 they were able to confirm the machine was repaired and gave John the IV injection needed. We were then told to come back at 4 for the scan. We left and went to the Springfield Zoo and enjoyed it. We returned at 4 and at 430 they started closing down the waiting room. John and I were the only ones left and were moved to a dark waiting room in the Radiology area. John was taken back and I watched a talk show. Thirty minutes later John was done and met me back in the waiting room. We hit Star Bucks and began the journey home.
John called to find out the results of the DATSCAN and the neurologist moved his appointment from late May to May 2nd. I knew this wasn’t a good sign. I went with him and the neurologist comes in before the nurse could finish and very bluntly told us he had some bilateral reduction in dopamine uptake and that he was being diagnosed with Parkinson’s disease. He then put John on medication (which they forgot to call in) and I asked about different exercises. We were sent on our way with a follow up in November. Nothing else…..no additional information or support.
FAST FORWARD….. I did more research because that’s what I do. After crying every day until vacation in July which going to my sister Amber’s house was a lifesaver and made us feel normal I actually didn’t cry there. I found a Parkinson’s Clinic which our insurance didn’t cover in MO and then landed upon a Movement Disorder Specialist (MDS) Neurologist in Fayetteville. I made him an appointment for October an went to that appointment with him. At this point we met with a social worker, did memory testing which he failed, met with the Dr, confirmed the medication dosage, and was referred to a million other specialists for testing. This included: Speech (choking), MRI for memory, Neuropsychological testing, Sleep study, and I think that was it at that time.
John's Journey 