We reside in a small town in southern Minnesota. My husband and I have been married 31 years. We have four grown children, ages 23 thru 28 years. We have had a good life, good jobs and a nice community in which families congregate and grow. Life hasn’t been that bad.
As a wife, I had a suspicion that there was something awfully wrong with my husband. Oh, he would go to work every day, put in his 10 to 12-hour days, come home and we would do the family things. But something started not to feel right. My husband started to come home totally wiped out. He had dark circles around his eyes. He would have a bite to eat after work and find the couch to nap and wake up to go to bed. His handwriting was almost unreadable. He had a slight tremor in his right hand and was starting to drag his right foot. At times, one would think he had a few too many drinks. There was mood changes and arguments. All these things were not my husband.
I finally made an appointment with the family doctor for a physical. They too decided that there must be something not right. We connected with a neurologist. After MRIS, testing, drug after drug therapy, we were led to believe my husband had Parkinson’s disease. At 54 years of age, we were dealing with Parkinson’s.
Two years into the Parkinson’s diagnosis, all the drug therapy that was used on my husband had seemed to fail. He wasn’t getting better but had progressed much faster than a Parkinson’s patient would. He was now using a cane, falling at a more rapid pace. He was no longer driving his vehicle, his voice was becoming soft, his words were slurring. The drugs that he had been taking made him in a zombie state. The neurologist then decided to send him to a specialist at the Parkinson’s Institute near Minneapolis. After an eight hour session, we came home with the dreaded news. My husband had a rare disease called progressive supranuclear palsy. Formally named, Steele-Richardson-Olszewski Syndrome. In short, PSP.
PSP. Say that over a few times. Not much is known of this disease. The chance of having this disease is 5/100,000. It is much harder to find help. There is no known cure. Most drug therapies do not help. Doctors seem to play a guessing game on how to treat it. The life span is about 5 to 7 years, and with good medical management and home care, the patient could live 10 years.
My husband’s neurologist had no answers for him. They said they had never treated anyone with PSP and “what can we do for you?”; that was a question we thought we would ask them. Needless to say, we went to a new neurologist.
We were lucky enough to get a fiery, five-foot tall, red head who was a fire cracker! With a broken English-Rumanian accent, she told us she didn’t know that much about this disease but would help us understand it. I think we both educated the other. We were so glad we invested in her, our faith of her abilities as a neurologist.
Her first decision was to get rid of all medication that was being taken. It was the theory of “if the meds aren’t working, why be on them?” we started on our own course to get a handle on this disease. As of this writing, my husband is off all Parkinson’s medication. At the beginning, there was a marked improvement or should I say, a marked change. The zombie state had left him. My husband was more alert.
The changes didn’t
last long as my husband was progressing into a different stage of the
disease. He no longer had a full night sleep. He would get up many
times for trips to the bathroom. His speech had become very soft and
very slurred. His falls were becoming more dangerous. A wheelchair
was now part of his life. We had many runs to the emergancy room for
stiches and x-rays to check for broken bones. He is easily agitated
and tired. He has outbursts of anger and has mood changes. He has a
starry-eyed look that is sometimes very frightening.
To compensate for all these ailments, the drugs of choice are now an anxiety pill for the mood changes and a sleeping aid. On a good day, the drugs do their job.
As I sit here and contemplate our lives, little did we know that this would be the journey we would be taking. My husband started on this journey in 1998, being diagnosed with Parkinson’s. It is now the fall of 2003. We have been walking the PSP path now for five years.
At this time, my husband’s body is failing. He began to choke on water, so we thickened all drinks. Soon, to stop choking, he decided not to drink. Food was becoming a problem as was weight loss. The decision to insert a peg tube was made. He now is fed a formula four times a day to sustain his life. My husband has severe neck and shoulder pain. He now has massage therapy to soften the muscles. The neck muscles are stiffening and pulling to one side. He needs assistance to walk, to get out of bed, to go to the bathroom, and to dress. Because he doesn’t blink often, his eyes become dry and needs to have drops applied many times a day. He has trouble seeing as the brain will not let the eyes work properly. He is in stage four of the dreaded disease, PSP.
As a caregiver and a wife, I can only say it’s been a strange journey. Our day begins where it left off the night before, with a feeding. I have 18-20 hour days. I have quit my job, as it was more cost-effective to stay home and deal with this disease and help my husband. I am caregiver, plumber, nurse, lawn care person, babysitter, shuttle bus, walking aid, shower giver, house keeper, cook, bookkeeper and one very stressed out person. It has been a hard and stressful trip. I wish it upon no one, and I only have praise for those who do step up and accept the challenge.
I am not blowing my horn and I’m not singing my praise. There have been times when I have wanted to walk away. There have been times I have screamed and not been a very nice person. There have been many times that I have cried “silent tears.” not a day goes by, that the tears do not flow in some form or fashion.
At 59 years of age, my husband says he feels 90. He still is my husband, but with a twist. We call him our special person because he has a special disease with special needs to be met.
Little did I know our remaining years together would be talking about wills, power of attorney’s, medical power of attorney’s, burial plans, feeding tubes, doctor upon doctor appointments, ramps, lift chairs, special beds, port-a-potties, special foods, wheelchairs, Medicare, social security, home care, respite, hospicee and long-term care.
I started out on this journey a very ignorant and blind person. But because of this journey, I will walk away with compassion and dignity for life and the higher power...and with “tears in my coffee.”Back To Top