Have you heard of PSP – Bravelets

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Have you heard of PSP

Posted on February 04 2016

Have you heard of PSP? I hadn't either until 2014 when my dad was diagnosed with this horrifying brain disease. Our journey began several years prior. My dad started having gait issues - infrequent falls, then came slight personality changes. He recently lost both parents so at first we thought depression. Dad seen some doctors, they prescribed antidepressants, that didn't seen to work. In fact his condition seemed to worsen. More falls, apathy, more personality changes. He started to run into things with his truck - small bumps - his ability to perceive distance and depth became very apparent. You see my dad was an amazing man. Full of life!!! Lots of friends and as a family - we had a very busy and active life together. Lots of vacations in Mexico, Florida, we had a cabin on the river so lots of bonfires and boating. He was a successful small business owner and in 2006 just 9 days before his grandson was born, my little sister came into the world. Yes - I have a 10 year old sister who is only 9 days older than her nephew! It was a crazy time, but fun no doubt full of love and lots of family gatherings. At first we were shocked when dad became noticeably ill. I was in major denial. He had bad knees and ended up having a complete knee replacement surgery. After surgery, his knee was a success, but he was never the same again. Immediately the next day after surgery, dad was different. He seemed to be hallucinating... reaching for things that weren't really there and babbling about things that we had never heard of. We were scared. Doctors said perhaps it was the anesthesia, he'll be better and back to his old self in a day or 2. Not the case. 2012 finally came the diagnoses of FTD - Frontal Temporal Dementia. I remember going to Iowa City and being there during the 4 hour psych evaluation. They asked dad very basic questions about math, reading, writing, shapes, how to drive a car (simulator). They told us after a day of long tests, he had the mentality of that of a 9th grader. Dad was losing cognitive skills and dementia had set in. What was wrong with him? I didn't understand why this big strong man who was always prevalent in my life, was becoming fragile. He was seriously ill... and worse yet - he just wasn't himself. I will never forget mourning my dad as we slowly lost him over the next few years as the brain disease progressed. His brain was dying. He was dying. I fell into a deep depression. I wanted to run away. I couldn't be around him or the environment for it made me so angry and so deeply sad. I started to lose myself. A deep sadness consumed me. I slept all the time. Lost interest in things that used to make me so happy. I pulled away entirely from my dad and immediate family. In 2014 we noticed some different symptoms - and he went in for a neuro exam. In 2014 we finally heard PSP. What in the world is that? I began to research. PSP stands for Progressive Supranuclear Palsy which is a rare and progressive condition in which brain cells become damaged over time. This is known as neurodegeneration. Symptoms of PSP include: progressive problems with balance and mobility an inability to control eye and eyelid movement, including focusing on specific objects or looking down at something, changes in thought, such as becoming increasingly forgetful, changes in behavior, such as irritability or apathy (lack of interest, increasing difficulties with speaking and swallowing. That described dad's symptoms to a tee. That was it. We finally understood his disease and what was wrong. Even worse with PSP - there is NO CURE and there is NO MEDICATION to help slow it's progression. The only thing you can do is try to treat some of the symptoms. We were devastated again, but at least felt that we finally knew what was wrong with him. Over the next 6-8 months he began to decline physically eventually not being able to do things on his own. He could no longer walk on his own, could not feed himself well, could not bath himself and needed assistance with bathroom needs. We decided to bring in hospice. What a wonderful organization they are and I cannot say just how much help they provided my dad and our family. We were able to keep dad at home during his entire illness with their help and the help of family members. I finally was able to come around and accept my dad's illness and spent the past 2 years with him as much as I could. Helping to care for him. Sitting and enjoying time with him. We played music and sang together. We watched sports and the Ellen show (which he grew to love!). We kept normalcy as much as we could and focused on quality of life for my dad more than anything. Finally in December 2015 we realized he was becoming even more ill and frail. He had a catheter in place and was losing so much weight. He was just deteriorating and getting infections. We prayed he would make it to Christmas and give us one last year together to remember and enjoy. Jan 3rd 2016, my dad - my hero and mentor - passed away peacefully at home surrounded by all those who loved him most. I will never forget that beautiful, yet incredibly sad and relieving moment of my life. I sat next to my dad till the end, holding his hand. Caressing his face. Telling him I love him and that it's ok to go. Be in peace where you can sail on smooth waters in Heaven - until we meet again! And that's just what he did. 620pm. After a long hard battle with this horrible ugly disease - at the age of 58 years old, dad let go and is now free sailing like an eagle in the beautiful blue sky. I believe he's with us. I can feel he's with us. The signs are everywhere. His beautiful and loving wife who truly showed me the definition of "in sickness and in health", who took care of him around the clock tirelessly and so lovingly - now see's eagles nearly every single day - sometimes even multiple times in one day. I do believe that is my pops - flying freely and saying - I'M FREE. I'm OK... and I cannot wait to see you all again. REST IN PEACE my beautiful dad - Steve Hagen. I Love You


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