Curt and Bok-Soon Continued Chapter 2

Our Story
Curt and Bok-Soon Continued

Chapter 2

About seven (7) years ago, during our daily walk, I noticed that occasionally my left foot would scuff the pavement. This occurred more predominantly when I became a little tired. During a scheduled visit to our family doctor, I mentioned this to him, and he suggested that I have a brain MRI just to be sure it was nothing serious.

My MRI was not normal. I saw a neurologist in Louisville, and after his analysis, he was quite sure I had Normal Pressure Hydrocephalus (NPH). We had no idea what that was or what it meant to me. I have no medical training, so what I say here is just how I understand it. NPH is a condition where there is an abnormal build-up of cerebral-spinal fluid which flows through the brain ventricles and spinal column. This build up in the ventricles puts abnormal pressure on some areas of the brain causing a multitude of symptoms including those that somewhat mimic Parkinson’s disease.
The standard treatment for NPH is to implant a shunt in one’s brain to shunt excess fluid around ventricles into your stomach cavity. This relieves the pressure on the ventricles and thus mitigates the problem. (Sounds simple, but it is not).
A test to see if a shunt would mitigate my symptoms is to tap into the spinal column and drain a significant amount of fluid to mimic a shunt. This relives the pressure on the ventricles and should greatly reduce or eliminate the symptoms of NPH.
We had this test performed in Louisville, and no improvement in symptoms occurred.
After about a year of scratching our heads, I had the opportunity to visit the Cleveland Clinic in Miami to obtain a second opinion, and, wouldn’t you know it, the neurologist there, after performing another MRI and also a DAT scan, confirmed that I did not have NPH, but I clearly had Parkinson’s disease. So, more than a year of missed treatments for Parkinson’s disease had gone by.

Now the story begins.
We live in Louisville, KY, so Cleveland Clinic in Cleveland, Ohio is much more convenient for us than in Florida. Our file was transferred to a movement disorder specialist in Cleveland, Ohio, and treatment began. The neurologist in Miami prescribed a Dopamine Agonist ( Ropinirole) I took that medication while under the care of the Miami doctor. After I met with the Cleveland doctor, he discontinued the Ropinirole and prescribed (Carbidolpa / Levedopa).
After about two years with the Cleveland doctor, it became very difficult for us to travel, especially during the winter months, to Cleveland, so we researched and found a movement disorder specialist in Louisville. We have been with our local neurologist now for about 4 years. During this time, my symptoms have gotten somewhat worse, particularly with regard to gait and balance.
Recently, I mentioned to my Louisville neurologist that we were going again on our annual one month hiatus to SW Florida, and it was suggested that we again get an opinion from CC Miami. Coincidently, we were again scheduled with the same doctor we had seen 5 years ago. That part of the story is still unfolding, so stay tuned.

My Louisville doctor, based upon my overall symptoms and brain MRIs, thought I might have Vascular Parkinsonism which is caused by a series of mini-strokes and is unrelated to the presence or not of Dopamine. Again, I have no medical training, so what I say is just how I understand it.

The CC Miami doctor disagreed that I had Vascular Parkinsonism. So where do we go from here?

I began to see a Physical Therapist at Norton Hospital’s Cressman Center in Louisville to try to mitigate some of the symptoms of Parkinson’s disease, particularly gait and balance. This has been extremely helpful and I will continue this therapy as long as possible.

Another troublesome, painful problem is neck stiffness and quite severe pain, particularly in the early morning hours. The CC Miami neurologist
diagnosed this as Cervical Dystonia (disproportionate spasm of some of the neck muscles) and indicated that it is best treated with Botox injections and likely caused by PD. Since now my primary neurologist is my Louisville doctor, I will see her before moving forward with with Botox. Appointment now scheduled for February 14th, (Valentines Day) with my Louisville to agree or not with the CC Miami doctor.
She does agree and treatment will start on March 21. If the shots alleviate my neck pain, they will likely be required every 3-4 months for an uncertain time.
Meanwhile, visits to the Cressman Center twice/week for PT, and Rock Steady Boxing twice/week will continue. An update will follow the Botox treatment.
The question of Vascular Parkinsonism is still open. I hope to discuss with my Louisville doctor during the Botox treatments.

CS

 

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