I want to go back to when Autumn’s wedding was. I knew something was wrong and that John had appointments but was blissfully unaware that I was correct in my amateur diagnosis. I want to go back to March at their wedding when the only thing I thought was unusual was that John took his shoes off and didn’t have time to put them back on when the Father Daughter dance started. The shoes are terrible anyway they are corefram from the military and not comfortable. I want to go back to December of 2018 when we took the kids to Universal and surprised them with an on property stay and tickets for three days. I want these days back. The days before…….before the stress, the crying, the worry, the changes that we cannot control. The day to day struggles.

While I know there are far worse things the daily changes or weekly changes are hard. John has always been my Prince Charming and treated me like a Princess. I want for nothing. He cooks, cleans, does the dishes, laundry, makes the lunches, changes the sheets…..I only pay bills and that is definitely not my strong suit.

His Dr appointments are slowing down however we have had some very scary new symptoms. I will try and get better at posting mainly for my mental stability and not under the belief anyone will read this. It helps to put it on paper however sometimes I have to wait until I process some of it.

About 3.5 weeks ago I was in the shower and John was in our bedroom. I knew no children were home. Promise was at a friend’s and Austin was at work. However, John came in the bathroom to tell me hey I’m shutting the door because Austin’s home. I started worrying about why my kid is home and what happened at his job that would cause him to be home. About 5 minutes later John comes back in and says I can’t find Austin anywhere. He said he heard Austin’s voice clear as day say Hey Mama……..at our door. John thought he was sitting on the couch and went out to the living room but couldn’t find him, he look in all the bedrooms, all over the house and garage and then went outside to see if his car was here, which it was not. At this point I have looked Austin up on Life360 and see that he is indeed at work. John comes back in and is clearly shaken and sits on the bed. He was still there when I got out of the shower. John was completely freaked out. I tried to play it off but he refused and said he heard him.

The next night he is out walking the dogs in the dark. It’s quiet. Cold and quiet so sounds travel. He hears my voice talking. John comes inside and says hey were you outside? I told him no, I had been in the bedroom. Another night that week he hears someone yelling outside when he is out there but can’t confirm if he really heard it or no. John called his specialist and they told him if he has anymore he needs to call them back. Great! Just what we need audible hallucinations.

Today, I ask him after reading a Parkinson’s post if he has trouble with buttons. He says yes, that’s why I wear zipper shirts, pullovers or snap shirts. I feel terrible not realizing this. I have to usually ask John twice to do something, and he was supposed to set up a payment arrangement for his MRI etc and I have asked him about 15 times because they won’t talk to me. I text him, call him, and leave him notes. Nope, so now it has been sent collections. Looks like it’s time for the Power of Attorney.

We went to Austin’s banquet for scholarship competitors. It was by invite only if you had a certain ACT score and GPA or higher. Austin brought Serenity too which was nice since she will be attending there in the Fall as well. It was nice to get away and dress up and have a good time. What made it better was Austin decided to spend the night on campus and won the Engineering Excellence Award the next day.

John’s balance isn’t as good and I need to install handles in the bathroom. I am terrified of him falling. He has a followup in March with his neurologist specialist which we will discuss increasing his medicine. John noticed himself shaking at the a meeting on Thursday and grabbed his hand to stop it and then felt like his head was shaking. He is self conscious about this. He does get internal tremors especially at night and asks me if I can feel him or see him shaking.

We have started climbing as a family. Just an indoor gym and John enjoys it. We figure the whole body work out is good for all of us and with John if his balance is bad it doesn’t matter since he is in a harness on the wall anyway and can’t fall. We have gone twice a week since starting about 4 weeks ago.

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.