This post is for my new neurologist.

As I stated previously, I liked several things about him… how he gave me courage to try the medication again, providing strategies to avoid a repeat of its making me ill, and how he said see you in three weeks, and frequently till your life is under control.

BUT I sensed his frustration with me, as he held up a finger asking me if I saw double. I, too felt frustrated as he moved his fingers across demanding I respond. I had several responses going through my mind, but I finally blurted out No. I only see one. But it felt like a lie. You see, doctor, I had all these thoughts running through my mind…but couldn’t find a way to express myself:

  • I saw a blurry finger cog-wheel in jerking fashion. So technically, only one.
  • But for several years, even after my annual prescription updates, I would find things just didn’t seem in focus. Then in 2018 the eye doctor finally gave my condition a name: oblique double vision.
  • Sooo… knowing I wear prism glasses to correct the problem, it took me four years to get a name for… how could I be sure I was only seeing one?
Mht af saying thinking 5
* I felt like admitting I only saw one was like saying my vision problems aren’t related to the Parkinson’s diagnosis.
  • The eye doctor even told me I leaned like a person with oblique double vision. ..PLUS the prism glasses restored my ability to text, and read.
  • And… I have seen where vision problems are related to Parkinsonism.

What follows is taken from a presentation given by Joseph H. Friedman MD at the May 29th, 2018 World Parkinson’s Congress

“We all misperceive things….. In Parkinson’s disease (PD), there are a number of misperceptions that may occur as part of the disease, and may seem puzzling to the person with Parkinson’s (PWP) and the family. The misperceptions usually affect the person with PD, but there are misperceptions by others concerning the PWP.”

“Many PWP do not perceive spatial relationships as they did before the onset of PD. This occurs in a number of settings, and is particularly important for driving. It is not rare for a spouse of a PWP to complain that they are never in the center of the lane, but always to the right, or to the left, or sometimes too close to the car in front. When confronted, the PWP will disagree and confidently state that the car is, in fact, in the middle of the road, even when it isn’t. This occurs because of changes in parts of the brain that process visual input, which causes a distortion in what is perceived as the middle, or up, or down, causing the PWP to argue, because, to the PWP, the car is in the middle, but it really isn’t. It is difficult to convince PWPs of problems such as these when their own personal and repeated experience indicates that they are in the middle of the road. A similar problem occurs in PWP who think they are closer to a chair than they really are so they sit down, and almost miss the chair. Sometimes people will actually miss the chair, and injure themselves.”

Vision Problems in Parkinson’s Disease

The Michael J Fox Foundation hosts discussions called “Third Thursday Seminars.” Gratefully the events are archive, because I was at the hospital with John when this one occurred.

The details… Our panelists discuss changes in eyesight associated with Parkinson’s as well as the effects of other symptoms and medications on vision. We also cover how scientists are looking at the eye as a source of tests to diagnose the disease in its earliest stages.

I apologize for the dimness of the slides I copied from their slide presentation… But I wanted to show them because this is only the second reference I’ve found in my year of research that confirms my double vision is symptomatic of the diagnosis.

When I learned I needed prism glasses… I was told I had oblique double vision which had a domino effect of also causing Pisa Syndrome.




Strategies for eye care

May 2017,         I complained…”Something is wrong with my eyes.”  For the past three yearly exams, when I receive the glasses, everything seems ok.  But then I find I have so much trouble focusing, I find myself unable to read things like name tags , seeing everything in a blurr. Texting was becoming nearly impossible. Auto correct just added to my embarrasing typos.

Then, last year, I finally was referred to an Eye Dr, who determined my difficulty in seeing was caused by Oblique double vision.  They pointed out I have an accompanying tilt to the right…akaPisa Syndrome.  I could no longer use bifocals and transiitioned to using reading glasses with a prism and single vision glasses for longer distances.

This was the diagnosis which led me to discover, in my internet research, the first clue that led us towards the diagnosis… “…indicates oblique double vision & Pisa syndrome is a rare clinical entity usually associated with underlying neurodegenerative diseases such as Parkinson’s disease and Multiple System Atrophy.”

Today, I returned for my annual eye exam… the prescriptions needed tweaked. [and I found out our insurance only helps with eye wear once every two years. 😦 ]

Because my facial feelings are diminished, I do not blink frequently…and I don’t remember to use eye drops regularly, because I don’t realize they are dry. He gave me a strategie… to have four bottles of lubricant eye drops… placed strategically, where I’ll see them to be reminded to put drops in my eyes a minimum of four times a day.

He also told me I have an eye infection (who knew?) My instructions are to wash my eyes with baby shampoo and then put a salve on my eyes as I go to sleep.

I share the Doctor’s advice, for the benefit of others who also forget to blink.