Cecil Draper

My husband, Cecil Draper, served in the CF from 1965-1996. He was in the 411 trade (Vehicle Technician). According to his recollections, he used Carbon Tetrachloride (CTC) routinely for cleaning engine components such as cleaning hydraulic lines, brake lines, starters, alternators, heating/cooling motors, sensors, fuel atomizers or injectors, connecting rods, distributors, carburetors, superchargers and turbo chargers throughout the early decades of his career.

In 2019, he began to experience sudden, unexplained backward falls. He had difficulty walking, his voice became softer and slurred, his handwriting became increasingly illegible, he exhibited a cognitive decline and he had difficulty clearing phlegm from his throat resulting in a lot of unproductive coughing. Over the course of a year, he was seen by a myriad of specialists. In July of 2020, he was seen by a neurologist at the Movement Disorder Clinic at Toronto Western Hospital who diagnosed him with a rare neurodegenerative brain disease called Progressive Supranuclear Palsy (PSP). This is a rapidly progressing disease is often misdiagnosed as Parkinson’s Disease. PSP is grouped together with two other diseases, Multiple System Atrophy and Corticobasal Degeneration. These three neurodegenerative conditions can be categorized as Atypical Parkinson’s, atypical parkinsonism’s, or Parkinson-plus disorders.

PSP is a disorder that can affect gait, balance, speech, swallowing, vision, eye movements, mood, behaviour and cognition. Life expectancy is typically 5-7 years after diagnosis. The patient with PSP ends up wheelchair and/or bed bound, on a feeding tube (if they wish to prolong their life), unable to speak, and with severely impaired vision or no vision at all. Executive cognitive function is impaired and some patients may develop other forms of dementia such as Lewy Body Dementia or Alzheimer’s. Many patients pass away before the onset of all symptoms due to catastrophic falls and/or aspirational pneumonia.

Diagnosis of PSP is made by clinical findings as currently; there are no definitive biomarkers upon which to base diagnosis. Only a brain autopsy, can offer an exact diagnosis. This is the cruel disease that my husband is afflicted with.

I am his full time caregiver and advocate. In 2019, I took over completing and submitting PSC applications for a variety of issues that mostly centered around osteoarthritis as Cecil was unable to complete the online forms. This was an early sign of his cognitive decline. As his Power of Attorney, I interface regularly with VAC as I navigate the benefits, treatments and services that Cecil is entitled to. I have also worked with the Bureau of Pension Advocates (BPA) to successfully appeal two of my husband’s other conditions.

Upon the advice of a VAC agent, I applied for PSC attributing Cecil’s diagnosis of PSP to his exposure to Carbon Tetrachloride (CTC)  and other toxins during his military service. It was a lengthy submission (around 250 pages) where I referenced a variety of research papers related to specific toxic exposures and subsequent cell alterations that take place within the human body. These cell alterations known as mitochondrial dysfunction is what is believed to cause both neurodegenerative diseases and cancers. Hence the reason that science is looking to environmental factors when searching for the causation of particular diseases. A well-known saying in the medical/scientific community is “Genetics loads the gun. The environment pulls the trigger.”

The PSC application was submitted to Veterans Affairs Canada (VAC) on March 19, 2024. I had it Red Zoned and received an unfavourable decision 3 weeks later, in April. I immediately asked for an appeal. The Bureau of Pension Advocates has indicated that the appeal is also being expedited and there should be a hearing date within 1-2 months. Randy Hladun, a contributor to the website, had given me a letter from the Occupational Medicine Specialist who wrote a letter supporting Randy’s PSC Claim and also a copy of the Veterans Review Appeal Board (VRAB) decision related to his cancer diagnosis and his exposure to carbon tetrachloride. I have shared these documents with the lawyer from BPA who is working on Cecil’s file. I will advise this group as to the outcome of our appeal.

Stay strong!

Marnie Draper

Symptoms

Symptoms of progressive supranuclear palsy include:

• A loss of balance while walking. 

• A tendency to fall backward can occur very early in the disease.

• An inability to aim your eyes properly. 

People with progressive supranuclear palsy may not be able to look downward. Or they may experience blurring and double vision. Not being able to focus the eyes can make some people spill food. They also may appear disinterested in conversation because of lack of eye contact.

Additional symptoms of progressive supranuclear palsy vary and may mimic those of Parkinson's disease and dementia. Symptoms get worse over time and may include:

• Stiffness, especially of the neck, and awkward movements.

• Falling, especially falling backward.

• Slow or slurred speech.

• Trouble swallowing, which may cause gagging or choking.

• Being sensitive to bright light.

• Trouble with sleep.

• Loss of interest in pleasurable activities.

• Impulsive behavior, or laughing or crying for no reason.

• Trouble with reasoning, problem-solving and decision-making.

• Depression and anxiety.

• A surprised or frightened facial expression, resulting from rigid facial muscles.

• Dizziness.

When to see a doctor

Make an appointment with your healthcare professional if you experience any of the symptoms listed above.

For more information click here:

Mayo Clinic Family Health