Owner of ActivKare - My Personal Experience with Progressive Supranuclear Palsy

Owner of ActivKare - My Personal Experience with Progressive Supranuclear Palsy

September 22, 2022

My name is Karen, I am the founder and owner of ActivKare and I want to share a personal story on how my work has allowed me to provide comfort for my family.

Let’s start with defining PSP; “Progressive Supranuclear Palsy (PSP) is a rare brain disorder that causes problems with movement, walking and balance, and eye movement. It results from damage to nerve cells in the brain that control thinking and body movement” (NINDS). 

There are currently no cures or treatments for this disorder and the symptoms mirror a combination of ALS and Parkinson’s without the tremors. 

My Dad has PSP, and oddly enough my grandmother on my mother’s side had it as well. It’s not likely you have heard of this neurodegenerative disease because it doesn’t get the same press, research or fundraising like Parkinson’s or ALS, but PSP could affect as many as 5-17 people in every 100 000. There have only been a few famous people with PSP to help raise awareness, such as the late Dudley Moore and currently Linda Ronstadt. 

My Dad began falling about ten years ago and it got progressively worse. My family and I chalked it up to too much wine. His last bad fall was in February of 2019 in my parent’s icy driveway. He ended up fracturing three vertebrae and was sent home to “recover”. He did not recover, and his pain was unbearable.

After many months he finally got an appointment with an orthopaedic surgeon in Kingston, Ontario who upon meeting Dad for the first time asked if he had been diagnosed with Parkinson’s. My Dad, my mother and I were baffled - Dad didn’t have tremors! 

A year after a very successful surgery that alleviated my father’s pain he was referred to a neurologist. An MRI conclusively diagnosed him with PSP… not Parkinson’s like we initially were told. Again we were shocked, we had watched my grandmother suffer and pass from the same disease and knew what we were in for. 

My grandmother’s decline was quite quick, she passed only 2.5 years after diagnosis which was only made because she too was falling and had begun to have some difficulty swallowing. We knew too well the struggle that was coming for my dad physically, and for all of us mentally.

My father’s mobility began declining since his major fall in 2019 but in the past year it was increasingly difficult for him to get to the bathroom, and then six months ago it was difficult for my mother to continually assist him to the bathroom.

I encouraged them to try using the Afex External Urinary System that my company imports and it was an immediate success; he didn’t have to get out of his chair or wheelchair to get to a toilet. 

When my father was hospitalized in July for pneumonia, the hospital staff were amazed at how much freedom it gave them to attend to more pressing concerns with other patients instead of frequently trying to physically get him to the toilet or stand him up to use a urinal. When my father came home, he had the assistance of PSW’s and they too were extremely impressed with the Afex system.

My father’s health continues to decline but his dignity remains with the freedom that Afex brings compared to adult diapers or “briefs”. His skin is protected from urine rashes and Afex has prevented unwanted falls since he doesn’t have to move as much. 

This isn’t a sales pitch; this is real life personal experience with an alternative to the adult diapers that are too often pushed onto all seniors as the only option when either incontinence affects them or getting to a toilet becomes a problem.

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If you or a loved one has mobility issues that prevent them going to a washroom or suffering from incontinence ActivKare can help with compassionate support. 1(855)811-3733 https://activkare.com/

For more information on PSP please visit https://pspsocietycanada.ca/  https://www.psp.org/

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