Ed Knutson

Marlene Knutson

Living With PSP

I never dreamed I would know so much about Progressive Supranuclear Palsy (PSP). The chronic neurodegenerative disease now plays a significant role in my family's life. PSP is more progressive than Parkinson's disease, but far less well-known. A number of people in the Thunder Bay area of Ontario, Canada are currently suffering from this disease, to which there is no known cause or cure. My wife is one of them.

About five years ago my wife Marlene began to have problems with her balance. She would fall down and not understand what caused her to stumble. She soon had to rely on a cane for balance, and as the problem got worse she would require a walker and eventually, a wheelchair. Other symptoms she experienced in the early stages were slowed speech and a monotone voice.

In 2007, our family doctor suspected that Marlene could potentially have Parkinson's disease and referred her to Dr. Sher, a neurologist at the Thunder Bay Regional Health Sciences Centre, for further examination. He watched her walk and examined her vision - by now Marlene could only follow slow movements. He also discussed the issue of choking, which had now become a problem for Marlene because the muscles that control swallowing and prevent food, fluid and saliva from going down her windpipe had weakened, and could no longer do their job. These symptoms, along with her impaired movement, led Dr. Sher to the clinical diagnosis of PSP - a neurologically based movement disorder in the Parkinson's family.

Marlene later had a consultation with another physician, Dr. Jog of the University of Western Ontario School of Medicine, who sees Parkinson's and PSP patients locally. He confirmed Dr. Sher's diagnosis as classical Richardon's type PSP. Marlene continues to see Dr. Jog every six months now.

What does the future hold for Marlene? The disease is progressive and will continue to slowly worsen. It seems that many of the important reactions in her body have slowed down. She is showing changes in her mood and behavior, causing her to suffer from depression. It is also said that eventually, she will likely ingest food or drink into her lungs which would cause pneumonia.

Marlene Knutson

Marlene recently had cataract surgery at the Health Sciences Centre in order to improve her sight. Without it, the disease would have likely left her blind. She also had hip replacement surgery in November 2008. This reduced her falls dramatically and allowed her to walk with the help of a walker. Without the surgery, she would still be confined to a wheelchair. We are thankful for all the excellent care Marlene received, because without it, we know she would be much worse off.

Marlene now resides in Pioneer Ridge - a retirement home where a team of capable and compassionate caregivers provide for her daily needs. Friends and family visit with her frequently and she has also made friends in her new home. In spite of her challenges, Marlene soldiers on. She continues to try new things which are now beyond her abilities, which can at times result in repercussions like falls, but at least she has not given up. She continues to look forward to the simple joys in life, and she will fight PSP every step of the way.

Marlene and I hope that this story will help to increase public awareness of Progressive Supranuclear Palsy. Should anyone (especially those diagnosed with PSP) wish to contact me, my email address is eknut@shaw.ca.