Page 18 - Senior Times South Central Michigan - July 2019 - 26-07

Page 18
Senior Times - July 2019 Progressive
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Supranuclear Palsy
By: Mary T Meagher
Neurodegenerative disease is an umbrella term for a range of conditions, which primarily affect the neurons in the human brain. You have probably heard of some of the more common forms, which include Alzheimer’s, Parkinsons, and ALS. These devastating conditions are sometimes referred to
as “Prime of Life” diseases as they can often strike during a person’s most productive and creative years.
This article is the first in a series that will address several rare neu- rodegenerative diseases associated
with or referred to as Parkinsonisms: Progressive Supranuclear Palsy or PSP, Multiple Systems Atrophy or MSA, and Cortico Basal Degeneration or CBD. In the early stages these diseases mimic many of the symptoms of Parkinsons and it can be years before a more accu- rate diagnosis is achieved.
Swallowing difficulties can include coughing, choking, and gurgling and as a result the person will eat very slow- ly. The muscles in the throat become weak and often PSP patients will have
a hyperextended neck. There are many special cups that help with swallowing. My mom had one with a piece cut out for the nose to allow her to swallow without having to tip her head back. This helps to assure that the liquids go down the correct pipe. If the liquid goes into the lungs the person can aspirate, which is very painful and can lead to pneumonia. Swallowing issues can also result in drooling. Eventually my mom had to be fed.
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On March 30, 2010 my mom lost her battle to PSP. No one can ever pinpoint when the disease actually begins because the early symptoms are often ignored or passed off as aging
or “coming down with something.” Most people experience balance issues in the beginning, which again, start slowly and maybe include a little light- headedness. One of my mom’s earliest symptoms was losing her ability to write. PSP and Parkinsons Disease (PD) have overlapping symptoms so PSP is often misdiagnosed as Parkinsons. This was true for my mom. Sometimes the medications work for a little while, but for my mom when the two-week trial
of medications for Parkinsons had no effect the doctors knew it was some- thing else. However, this was YEARS into the journey.
Speech becomes slurred or “explo- sive.” Speech therapists are a necessary part of the team to help address these issues. The “Big and Loud” Program often used with people who have Parkinsons is also helpful for people with PSP as well as the many electronic assistive devices on the market such as iPads and communication boards.
PSP causes cells in the brain to be damaged by a protein called Tau. The Tau clumps abnormally and destroys the brain cells. The symptoms that can be seen in the person with the disease are a result of the signals from the brain being distorted or blocked.
Speech is one of the most difficult symptoms and requires patience and understanding by the caregivers. Eventually the person becomes non communicative.
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My mom had many of the typical symptoms associated with PSP. One of the first is that she lost her ability to write. She was unable to grip the pen and the signals to form the words just weren’t there.
Writing can be a way around this, but since my mom lost that ability early we eventually had to ask only yes/no questions and she would give a thumbs up or thumbs down.
She began to experience mobility issues as well as falls. These were due to impaired balance and stiffness in her muscles and limbs.
Constipation becomes a major prob- lem. Some medications can exacerbate the issue. Over the counter medications helped, as did homemade smoothies. Incontinence was also an issue, espe- cially at night. We made sure to rule out a urinary tract infection, used briefs and tried to respond as promptly as possible to requests to go to the bathroom.
The “hallmark” of PSP is eye problems.
In my mom’s case she never could clearly describe what was happening
to her eyesight, but she often covered one eye, which would be typical of double vision, a common symptom. Double vision is caused by an inability to bring the eyes together or line them up and one of the care options is to
use a patch while reading or watching TV. Blinking decreases in people with PSP causing “dry eyes.” In addition
to red, stinging, and inflamed eyes. Ironically another symptom of dry eyes is excessive tearing. Over the counter eye drops were helpful for my mom. Sunglasses were a big help as bright- ness was uncomfortable for her, even
in the house. Another vision issue is
the ability to keep the eyes open. A condition called Blepharospasm forces involuntary closure of the eyelids while Eyelid Opening Aprazia causes difficul- ty opening the eyelids. In PSP the eyes also slowly lose their ability to move – first down, then up, then left and right. Typical eye exams do not pick this up, the patient needs to be seen by a doctor called a Neuro Ophthalmologist. For some people this is the doctor that actu- ally diagnoses PSP. Prism glasses can be helpful as well as raising plates and books to eye level.
My mom also had limb dystonia, a disorder in which a person's muscles contract uncontrollably. She also had neck rigidity. Both of these conditions did cause her some pain. Massaging helped to relieve this somewhat.
In addition to these symptoms some people have personality changes such as exaggerated laughing or crying (Pseudo Bulbar Affect), irritability, impulsivity, apathy, and depression. There are many, many other possible symptoms as well, too many to address here. The important thing to remember is to address them as they come and try to always remember that they are all out of the control of the person with the disease.
PSP and the other rare, neurological diseases can be very lonely diseases. Support groups are hard to come by. The group that was the most helpful
to me in caring for my mom was a national group called CurePSP. Phone and in-person support groups are avail- able and I started a group in my area six years ago. Every person I meet shows such courage and strength. And we have all come to realize how much hope matters.
The website is www.curepsp.org and I would highly recommend it.