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Help the Knowles Family in Their Medical Journey

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Hi everyone! My name is Gracie and I'm making this gofundme to try and help my parents with medical bills and life expenses. For those who don't know, my father has been very sick for most of his life with Multiple System Atrophy, and now Lewy’s Body Dementia. Since 2007-2016 The doctors took note of these symptoms and much more, and the doctors came to the conclusion that my father had Parkinson's Disease. It finally felt like a step in the right direction. We got him put on medication geared towards helping the symptoms of this awful disease, and it seemed like it was helping for the most part. While symptoms of the illness gradually started to decrease, it obviously never went away completely as that's not how the medication works otherwise, we wouldn't be here right now. Things were starting to get worse, in a different way. Bodily functions started to malfunction and dad felt like he was starting to lose control of his body. His mind was getting foggier by the day, he was feeling confused, lost, and trapped in his own mind. While Parkinson's felt right, it didn't feel accurate. My father knew something else was going on with his body, as only you know yourself best. In 2020, the world got crazy. We were in the middle of a life altering, world changing pandemic. The bradykinesia started to really take the stage, with slow walking and an almost limp like stature really affecting his mobility and ability to get around the house comfortably. Fingers, toes, legs and arms all started to go numb, with the pins and pricks needle sensation feeling almost too much to handle at times for him. There was choking, difficulty breathing and swallowing, digesting food, using the restroom, eating, sleeping/waking up/staying awake, irritability, confusion, lack of awareness (both socially and physically), apathy, an unusual increase and decrease in blood pressure, and so much more. While the Parkinson's diagnosis had somewhat right at the time it was given, with time progressed it just didn't feel 100% right given the new symptoms and condition my father was in. In the midst of all of this chaos and disaster, a miracle came through the form of a doctor at the Swedish Hospital in Seattle, WA. Dr. Pravin Khemani who is a specialist in Neurology and Movement disorders, we were on the right track. Dr. Khemani decided to do a skin biopsy, which can help differentiate between Parkinson's and other neurodegenerative diseases that are out there, including ones we had never even heard of. "Multiple system atrophy: A rare disease that affects the nervous system and can cause symptoms similar to Parkinson's disease. MSA can disrupt movement and automatic body processes like breathing, digestion, and blood pressure. Symptoms tend to progress rapidly over 5–10 years, and the disease is usually fatal within 10 years. In the United States, the incidence of MSA is estimated to be 0.6 cases per 100,000 people per year." -Google, 2024. We got the diagnosis in 2020, and have been living with and through it the past 4 years. It has been rough, but as a family we have been able to get through it. My parents sold their house in Washington, paid off debts with it, and what was left moved to Arizona as the cold, drastic winters here were really affecting dad considering his body was betraying him by shutting down internally and not working the way it was supposed to. They moved to Arizona in June of 2023, and while we were hoping this would bring some sort of positive results for my father, it fears we have gotten the opposite. We were hoping being somewhere warm would potentially help considering the cold winters were so bad on him, but as we all know Arizona is a little too warm, and it's just resulted in my father being miserable. While the heat was getting to him, the disease had seemed too RAPIDLY increase, faster than what we were expecting, and in ways that also didn't seem conclusive to MSA. So now, we are back to the drawing board. While we think it still may be MSA, the doctors have now brought up the potentiality of Lewy Body's Dementia. "Lewy body dementia (LBD) is a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood." -Google, 2024. So now it seems we are back to square one, with a whole new diagnosis and a whole new set of symptoms, fears, questions, concerns, and even more doctors’ appointments and medication expenses than before. If you know my father, you know that he is the kindest, most loving, caring, funniest, smartest, wholesome, and genuinely down to earth soul. My parents would give you the shirt off their back, a room to stay in their home, a warm meal on the table, and will do anything they can to help anyone in any way that they can. They will love you back to health, that is how amazing they are. So, if you have made it this far, thank you so much for reading our story, this doesn't even begin to scratch the surface of how things have truly been for us as a family over these last almost 18 years. I am raising this GoFundMe to help my parents as they are trying to relocate from Arizona to California so they can be closer to family which will help with whatever diagnosis is coming down the pipeline, as well as to create a better and more stable living environment for my father in regard to weather. He was also born and raised in California and would live to peacefully pass there whenever the time comes as well. I ask that you please share the gofundme so the word can get out, not even for donations, but so we can spread the word about Multiple System Atrophy and Lewy Body's Dementia, as they are not talked about enough!!! Thank you so much everyone, you are so loved and appreciated for even reading this far. Take care and God bless.

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    Organizer

    Natalie Knowles
    Organizer
    Spokane, WA

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