I Can’t Dance – The Parkinsonian Shuffle
Hello and welcome to my website.
My name is Stephayne and I have Parkinson’s Disease. “Abnormal striatal activity in the putamen bilaterally” is one of the ingredients on my label. The purpose of this website is to share our experience with the disease in as close to “real time” as we can. Sharing our experiences as they occur, while they are fresh in our minds. This is the best way for us to share these experiences since, there is no dilution of our thoughts and memories due to passing time. I guess you could say this blog could be used to raise awareness as well but, I don’t really know how many people will actually happenstance across my website without searching specifically for Parkinson’s Disease or my name. Perhaps, and most importantly, my ramblings here will reduce the mystery of what can happen to a “normal” person and family who is confronted with this disease. Hopefully while bringing comfort to anyone who also may be going through this. With normal language, from a normal girl, typed in by myself and my very supportive husband Jim.
So, this is normal? I actually have never been “gracefully coordinated” or well balanced as in not being able to even stand on a skateboard or ride a motor scooter. I’ve also never been very good understanding maps and my “internal compass” as my husband calls it, “seems to have no north”. I have always been easily disoriented in malls, parking lots and so on. Thank goodness for my GPS in my car, a gift from my husband! I also have suffered from shoulder pain for the last ten years. I never knew these issues could in fact have been early indicators that there may actually be something wrong in my brain.
In mid March 2017, I went to my primary care doctor because I was shaking severely from time to time. During the exam, he held his finger out and moved it around. He asked me to follow it with my eyes then try to touch it. I could not. He said it seemed to be a neurological issue and he referred me to a neurologist.
It took us several attempts to find a neurologist that was even taking appointments before October! We found it quite difficult to believe that not a single neurologist would take the time to see me. My husband was particularly upset and in my opinion, his frustration is well founded. In attempt to understand this perspective you must know this little basis of comparison tid-bit; He once owned an electronics design & manufacturing business that he started from a shed and grew to a 4000 sq foot industrial facility. He and his pro-ecological designs became very successful. To his great dismay, it was bought out due to action of his financial partner and Jim eventually ran out of money. To keep the bills paid, he held two full time, overtime jobs at one time for three years at the tune of up to 120 hours a week. To this day he still works around 70 hours a week even before he does his “busy work” he calls it. He says excitedly “just a few more years” at his current job before “finally taking a long ride”. Empowered with a work ethic of a locomotive, he does not retain a very kind opinion of any individual in a profession that supposedly is motivated by the desire to help people with serious medical issues but, will only help from 9 to 5 five days a week and then get paid how much? I was blessed with three kids I was a single mother with a full time job for a while so, I tend to strongly agree with Jim and I could not wait months to see a neurologist.
Persistence pays and we finally did find a neurologist. Later that month, I went to see her. The neurologist told me it was probably just anxiety and I need to see a psychologist or psychiatrist. We were guessing that is why we were able to get an appointment with this young neurologist? Myself or my husband were pretty upset with the “opinion”, we knew something else was wrong and I was pretty upset and stressed. We put off seeing the psychologist but, I did undergo with the prescribed MRI and blood work. Blood work revealed nothing, all was fine there but, we heard nothing of the MRI results from the neurologist.
Around mid June 2017, I noticed my movement was becoming more impaired. My thought process was becoming a bit delayed, my handwriting was becoming more difficult and smaller, I could not get comfortable in my chair at work, on the sofa at home or while bedding down for the evening. My movements in the following days became more difficult. I had to move around more “voluntarily” meaning that I had to think about my movements before making them as compared to just walking, standing up or just grabbing that bottle of water. Additionally, my job is pretty stressful and I found myself not being able to cope emotionally as well as I had before. I masked the problems to the best of my ability and subdued sharing how I had noticed in increase in my issues, even to my husband.
The icing on the cake however, was what happened at my friends birthday party 07/16/2017.
My husband and I were having a great time at the party. We are both people watchers but, I do love to dance. I was at this time, experiencing more difficulty moving, to a point where it was noticeable by others. I tried back straight, chin out and “just walk” approach but, my body would just not listen. Well, we were sitting at a table by ourselves and I was sipping on half a cup of Muscato, I only drink perhaps twice a year, the DJ was working the crowd and people were dancing. I was feeling inspired to dance so, I made my way to the dance floor. I tried to lift my feet and dance but, it was as if I was in some kind of strong gravity. I did not feel like there was a weight on my feet but, they just would not “go”. I became very upset. I made my way back to the table holding back an outright bawl of tears. My husband was very concerned and comforted me with a hug, back rub and successfully proceeded to divert my attention from the elephant in the room. He is good at that. Out of courtesy, we stayed until a couple other folks split before we said our goodbye’s. That night was one of realization, recognition and acceptance. We were both convinced I had something very wrong with me and it was getting worse.
My husband and I talked about my symptoms. He said smiling “there definitely must be something askew up there” [my head] let’s hope it’s not serious. His smile went away as he continued, “I hope it is not Alzheimer’s or Parkinson’s disease” which, did scare me a bit as he took my hand. That evening, he started reading some medical books his mom had left him and began researching online. After I got home from work the next day, he was also finishing up his day but, a little earlier than usual, about two hours earlier. I was struggling to get comfortable on the couch. Jim came over, took my phone, opened a web page and handed back to me information that covered the symptoms of Parkinson’s disease. Ding, ding we have a contestant, Mr. Parkinson, come on down! We were both convinced that’s what it was because I had every single symptom. He then presented me with a list of about twenty other disorders / diseases that have very similar symptoms to Parkinsonian syndrome. We were convinced that the neurologist was wrong and that we, and my primary care doctor were right. There is some kind of neurological problem.
I returned to the neurologist in late June but, this time with my husband. My husband writes custom Perl and other types of code from scratch. He does circuit design, day trading and other stuff I don’t understand, so he has to be very analytical by default. He has been like that for the nineteen years I’ve known him and he sometimes complains that he has difficulty “turning it off” so he can sleep. I can sure vouch for that. He’s great in asking all the questions and recognizing opportunities and perspectives in the moment that seemingly only come to my mind later on. The neurologist entered, sat down and Jim proceeded to explain why he thinks it is Parkinson’s disease. The neurologist was stead fast on her claims that anxiety is at fault. Jim went on about Parkinson’s and asked how she personally would diagnose. To her surprise, he already knew a lot of the terminology as he had been doing a ton of research. She told us that there is a procedure called a DaTscan that can help discover Parkinsonian issues in the brain. She also mentioned it was very expensive and I need to see a mental health professional first. Jim was insistent on getting a DaTscan prescribed. He asked “well, can you prescribe one so we can at least look into the cost just in case the psychiatrist dismisses all of her problems being Anxiety related?”. The neurologist continued to explain how severe anxiety can cause these symptoms and really did not answer my husbands question directly. So, there goes another seventy five bucks in ten minutes to no resolve, oh boy. Or so we thought. The next day Jim received a call that informed us that the DaTscan was prescribed.