- V
I can always remember, from even when I was a little girl, my father dedicated his life to working hard to give us everything we could've ever wanted. And now at a time when he should be enjoying everything he has worked for, he has become a prisoner of his own body.
I remember it very clearly, it was the day of my wedding and my dad seemed very flustered, something I imagined most father's felt because it's an emotional day, but something wasn't right. He seemed to have no control over his left arm, and had trouble walking me down the aisle. Then during our father daughter dance he had trouble coordinating how to dance; again I thought it was just nerves. As the months passed we thought the issue with his left arm could've been related to back or shoulder issues, until my sister (who is a nurse) recommended we see a specialist in Parkinson's disease. Come May of 2016, my mom and dad visited the doctor, and after multiple tests received the life changing news that my father had been diagnosed with an extremely rare neurological disorder called Corticobasal Degeneration. There is no cure or treatment, and there is about a 5 year time period until the disease manifests into its final stage. This is how the symptoms and complications are described on Mayo Clinic "The condition may cause you to have poor coordination, stiffness, difficulty thinking, trouble with speech or language, or other problems. The symptoms of corticobasal degeneration progress to serious complications, such as pneumonia or sepsis, a life-threatening response to an infection. Corticobasal degeneration complications ultimately lead to death.", but there are also rarer side effects (psychosis, Lewy Body Dementia, and complete loss of muscle function) that my father is unfortunately facing.
After he was first diagnosed, we only noticed the muscle stiffness and involuntary jerks in his left arm, which the doctor described as a "phantom limb" (my father could not feel much of his left arm or control what it was doing). As months passed we started noticing more symptoms such as trouble with speech and poor coordination, but the symptoms were still mild and we prayed that it would not progress. Within that time my sister and I had children, and my dad was ecstatic to finally have grandchildren, but unfortunately he could not enjoy the feeling of picking them up and hugging them or swinging them through the air because he was losing the ability to control his grip. Fast forward to this year, and my father has completely taken a turn for the worst. My mother, who should be enjoying this time with her husband, has become a full time care taker, and my father is completely unable to care for himself. We started noticing a rapid decline in April. He had trouble standing up from the sitting position, getting in and out of the car, and could barely walk up two steps without getting confused. We also noticed a decline in his ability to have the simplest of conversations. Come May he began experiencing signs of dementia and started to forget who my mother was, but when he was aware we saw glimpses of my dad. And now my father has completely become trapped in his own body, he is no longer my daddy anymore. The man who once would take care of all of us, is now being taken care of by us. The man who just several months ago was still talking about taking a vacation to Paris (a place he always dreamed of going), cannot even leave his home anymore. He cannot do anything for himself and goes in and out of knowing who we are, and my mother needs full time care to help her with him. My mother needs to put her job on hold in order to stay home with my dad and care for him, causing her to lose out on her full salary making the process even more daunting financially. Unfortunately the state does not look at the individuals need for care, they just look at a number and calendar. My parents would not be able to get a full time aid through medicaid until September, which is almost an entire month away, and now have to pay $340 a day out of pocket just to have someone to help care for him. By helping me fund this campaign, my mother will be able to get a full time care taker to help her while they wait for Medicaid to be approved. This is extremely important to us, and we need it done as soon as possible because he is becoming more and more dependent on someone each day, and my mother cannot do it physically or mentally by herself.
I remember it very clearly, it was the day of my wedding and my dad seemed very flustered, something I imagined most father's felt because it's an emotional day, but something wasn't right. He seemed to have no control over his left arm, and had trouble walking me down the aisle. Then during our father daughter dance he had trouble coordinating how to dance; again I thought it was just nerves. As the months passed we thought the issue with his left arm could've been related to back or shoulder issues, until my sister (who is a nurse) recommended we see a specialist in Parkinson's disease. Come May of 2016, my mom and dad visited the doctor, and after multiple tests received the life changing news that my father had been diagnosed with an extremely rare neurological disorder called Corticobasal Degeneration. There is no cure or treatment, and there is about a 5 year time period until the disease manifests into its final stage. This is how the symptoms and complications are described on Mayo Clinic "The condition may cause you to have poor coordination, stiffness, difficulty thinking, trouble with speech or language, or other problems. The symptoms of corticobasal degeneration progress to serious complications, such as pneumonia or sepsis, a life-threatening response to an infection. Corticobasal degeneration complications ultimately lead to death.", but there are also rarer side effects (psychosis, Lewy Body Dementia, and complete loss of muscle function) that my father is unfortunately facing.
After he was first diagnosed, we only noticed the muscle stiffness and involuntary jerks in his left arm, which the doctor described as a "phantom limb" (my father could not feel much of his left arm or control what it was doing). As months passed we started noticing more symptoms such as trouble with speech and poor coordination, but the symptoms were still mild and we prayed that it would not progress. Within that time my sister and I had children, and my dad was ecstatic to finally have grandchildren, but unfortunately he could not enjoy the feeling of picking them up and hugging them or swinging them through the air because he was losing the ability to control his grip. Fast forward to this year, and my father has completely taken a turn for the worst. My mother, who should be enjoying this time with her husband, has become a full time care taker, and my father is completely unable to care for himself. We started noticing a rapid decline in April. He had trouble standing up from the sitting position, getting in and out of the car, and could barely walk up two steps without getting confused. We also noticed a decline in his ability to have the simplest of conversations. Come May he began experiencing signs of dementia and started to forget who my mother was, but when he was aware we saw glimpses of my dad. And now my father has completely become trapped in his own body, he is no longer my daddy anymore. The man who once would take care of all of us, is now being taken care of by us. The man who just several months ago was still talking about taking a vacation to Paris (a place he always dreamed of going), cannot even leave his home anymore. He cannot do anything for himself and goes in and out of knowing who we are, and my mother needs full time care to help her with him. My mother needs to put her job on hold in order to stay home with my dad and care for him, causing her to lose out on her full salary making the process even more daunting financially. Unfortunately the state does not look at the individuals need for care, they just look at a number and calendar. My parents would not be able to get a full time aid through medicaid until September, which is almost an entire month away, and now have to pay $340 a day out of pocket just to have someone to help care for him. By helping me fund this campaign, my mother will be able to get a full time care taker to help her while they wait for Medicaid to be approved. This is extremely important to us, and we need it done as soon as possible because he is becoming more and more dependent on someone each day, and my mother cannot do it physically or mentally by herself.