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corgi-reporter

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About corgi-reporter

  • Rank
    Newbie
  • Birthday 06/29/1992

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  • Gender
    Male
  • Location
    Kennewick, WA
  • Interests
    I love taking pictures of my cats.

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  1. Hello, It's been a while since I've posted anything on these forums, but I wanted to let you guys know I'm doing well. I have a DBS consult coming up next Monday at OHSU in Portland. I've also begun putting my journalism skills to use by starting a blog about my experiences living with Juvenile Parkinson's. Here's a link if you are interested: https://peterparkinsons.wordpress.com/ Feel free to share it freely with anyone you think could benefit from my story. I know Parkinson's, and especially Juvenile Parkinson's, can be extremely isolating. I hope you all are well, Andrew
  2. corgi-reporter

    Young Onset Parkinson's Photoseries

    Sorry for the slow response. Last couple weeks have been rough. The photos I've been planning would go beyond just a "Faces of Parkinson's" theme. I was planning to explore my own on and offs, as well as the emotional difficulty of coming to terms with PD at such a young age. I also want to explore some of the unexpected difficulties, like hospitalization, and anything else that may come up. Considering I had onset at 15 or so, perhaps it would be better to focus on Juvenile PD most heavily. I think it is important to explore the darkness of living with PD, although I don't want the project to be hopeless. I just think there is a true lack of awareness that it can happen to people as young as me, or what it really means to live with it. I think it is really important for people to get a look behind the mask so to speak, although i know it may have a limited audience.
  3. Hello everyone, Not too long ago I saw this photoseries and it moved me to tears. I've since been looking for a young onset Parkinson's photo series, but I haven't seen one. I'm interested in putting one together to show the trails and triumphs of people with PD so early in life. Frankly I'm tired of hearing "you're too young to have PD," or "what is PD?" I think this project could do wonders for visibility and awareness, plus the self portraits I'm planning might help me come to terms with the disease. So, I have a few questions for you guys: First, have you seen anything like this before? If not, would you consider supporting me through a gofundme campaign? For $1,200 a year I can join a studio in town that would allow me to use all sorts of equipment that would otherwise be totally out of my price range. I think a year would give me time to get comfortable in a studio and to explore my own journey, and hopefully that of the two other people with young-onset in town. Should I decide to pursue something more ambitious at the end of the year I will have work to point to when pursuing more funding to complete the project. Any questions or input you guys have are welcomed
  4. Hello everyone, Not too long ago I saw this photoseries and it moved me to tears. I've since been looking for a young onset Parkinson's photo series, but I haven't seen one. I'm interested in putting one together to show the trails and triumphs of people with PD so early in life. Frankly I'm tired of hearing "you're too young to have PD," or "what is PD?" I think this project could do wonders for visibility and awareness, plus the self portraits I'm planning might help me come to terms with the disease. So, I have a few questions for you guys: First, have you seen anything like this before? If not, would you consider supporting me through a gofundme campaign? For $1,200 a year I can join a studio in town that would allow me to use all sorts of equipment that would otherwise be totally out of my price range. I think a year would give me time to get comfortable in a studio and to explore my own journey, and hopefully that of the two other people with young-onset in town. Should I decide to pursue something more ambitious at the end of the year I will have work to point to when pursuing more funding to complete the project. Any questions or input you guys have are welcomed
  5. corgi-reporter

    Finding meaning

    PatriotM: I've been kicking it around in my head and you're right. I think what I've been struggling with mainly is that I'm at home with nothing to do and I'm flat broke. I don't feel comfortable working full-time in journalism anymore, and I don't have the energy to truly pursue freelancing in a way that brings in any money. So in addition to all of the freedom I feel PD has cost me, I feel trapped by my financial situation. I've basically been at rock-bottom. I've been having trouble sleeping lately, and this morning I actually did something productive by looking at jobs. I noticed there are a lot of technical writing positions in my area. Now it's hard for me to get too excited about technical writing, but it's not too much of a stretch with my current skill set and the pay is solid and includes benefits. It's too soon to say what my life will be like with any certainty, but if I can start saving some money I'll likely be able to do far more than I'm giving myself credit for right now.
  6. corgi-reporter

    Finding meaning

    Let me clarify: The life I wanted is clearly not going to be happening, so I'm looking to redefine what constitutes fulfillment. At 22 I feel like many of the options open to others my age are simply not open to me. I'm not going to move across the country from my family, and I probably won't work in an office again anytime soon. This isn't to say I can't find a great new path, and I have every intention of doing so. I'm pretty tough; I pulled a 3.0 with 15 credits and managed to write 30+ articles for my college paper without ldopa even though I could barely stand. The problem is that there's no room for denial anymore, I have to face PD for real. I have to face it head-on if I want to live the best life I can. I'm just wondering what doors y'all found opened after the ones you wanted pre-PD closed. But you're all right, making excuses is not going to get me anywhere. I'm getting help for my mental illnesses, and I'm doing pretty well physically when I'm on. If I exercise more consistently I should do well for some time. My main problem is that I feel very cutoff from the world. I have a tough time relating to my friends, I'm mortified of dating, and continuing to work is daunting. Even if I can physically do things it is socially exhausting to navigate life with PD. How do you all deal with that? I'm an atheist, and I don't see that changing anytime soon. But I feel that serving the communities in your life is important. I feel like I don't have a community at all right now, so how can I serve it? That's why I'm here, and I plan to post more consistently. I want to belong, and I want to further the fight against PD.
  7. corgi-reporter

    Finding meaning

    After an ER scare in Southern Idaho I'm now living at home with my parents in Kennewick, WA. I left my job to come home and am not really working again yet. I'm dealing with a lot of anxiety and depression after the recent confirmation that I do have PD. I have some appointments to address my depression this week, but I lack motivation day to day because I feel like I have no control over my future. The life I wanted is clearly not going to happen. So my question here is what did you guys do to find meaning and come to terms with your new life with PD?
  8. corgi-reporter

    Need help coping with what appears ti be Parkinsons.

    Thanks for all the replies guys. I will answer them in order. Michael, I would be interested in speaking with you by phone. It sounds like our situations are fairly similar, and I'd be interested in how you work around symptoms in photography. I'm working on getting in touch with my primary neurologist, and I think we'll probably discuss something like the Parkinson's Resource Center or Booth Gardner. Also, I see that you just had two DBS leads put in. I'd be interested in discussing how that works for you. I'm terrified that I may have to get that done -- brain surgery gives me the heeby jeebies -- but it sounds like a pretty amazing treatment. PatriotM, The attitude thing is huge. I'm working to be more positive in my outlook. My biggest difficulty is when I'm off, and I've been off a lot lately becuase I think my dosage timing is shifting. I know there are worse diseases, but when I'm unable to get comfortable because I'm frozen I nosedive hard into depression. I'm looking into an excercise bike for my living room so I can really get started on a comprehensive excercise regimen. I don't think going for walks to take photos is strenous enough. pwri and musicman, I had been showing symptoms for the past 7 years or so, although it has gotten severe only in the last three or so. I'm not sure with my girlfriend. She thinks she may have had symptoms before this, but it hit her hard shortly after she moved down here. It is possible there is an environmental trigger, but I don't think it is likely. Ally_Rob, I truly struggle with belief in a higher power. At times I've been sure that there is something, but they are few and fleeting. I'm happy to hear that it helps you deal with this though And thank you for sharing that beautiful poem; I was not familiar with that one. New Normal, I do want to relocate near a better treatment system. At this point it is difficult because I'm just starting out and unfortunately Seattle and Portland are some of the most crowded job markets for what I do. And I try to stay optimistic. I know that YOPD tends to progress more slowly, but it brings me no comfort as the timing of my dosage begins to change which results in more off periods. When I'm off it feels like the nightmare I had of becoming a statue is becoming reality; I begin to freeze and I'm in horrible pain. It makes it very hard to be positive, and it increases my feelings of isolation. I'm working to get more control of my medication, because when I'm on I almost feel normal. Also, it's funny you should mention Hanford. I went to high school in the Tri-Cities and didn't show overt symptoms until we'd lived there for a few years. That being said I don't know if that truly had an impact. Although my dad's grandmother had Parkinson's and he told me the other day she wondered if the site may have had anything to do with it. Dianne, I think depression is certainly a serious concern. I have doubts about medication for that, or just plain counseling because it is so tied to my dopamine dosage levels. Also, the neurologist I last saw was Dr. Ali Sammii. He's a professer of neurology and a co-director of a movement disorder fellowship at UW. Magma, Thank you. I think posting on this forum was a big step in not only feeling more hopeful, but in beginning to understand how to deal with whatever is going on. I will definitely keep posting.
  9. Hello everyone, This is my first post on here. I don't officially have a diagnosis of PD yet, but my neurologist basically said it is 50/50 whether I have PD or Dopa-Responsive Dystonia. The more and more I think about it I feel it is PD. I'm 22 and I just got my first job out of college as a reporter in Southern Idaho. I love my work, but between my symptoms, which seem to be slowly worsening, and knowing absolutley no one here I am very depressed. I don't know what to do. I'm trying to find a doctor down here, and I have a neurological appointment set for April, but everyday I feel like I'm sinking. I have no friends here. I like my coworkers, but they're all much older than me. I was living with my girlfriend, who is amazingly supportive. She was working and things were good, but then she got hit really hard with M.S. like symptoms that have made it difficult for her to function. Now she's in Seattle to see a doctor, and I worry that she isn't going to be able to come back. I feel like I have no real friends anymore, certainly none that understand what I'm going through. I love to get out and take photos, but its cold and the roads are treacherous so I am unable to really go anywhere. I'm scared to go out alone becuase I could easily become stranded on the roads or anywhere else if I mistime my dose. The last couple days I've been incredibly depressed. The only thing I get any enjoyment out of my job, and I worry that sooner or later I won't e able to keep up, especially when I screw up my dosage, which has been more frequent lately. It seems like Sinemet is starting to lose its effectiveness. I'm sick of being frozen when I mistime my dose. I'm sick of almost always being uncomfortable. I'm tired of being alone. What I hate most of all about this whole situation is the fact that it's taken my dreams from me. I no longer feel that my career aspirations are possible for me. There is no way I can devote the time or energy needed to get where I want to go. I want to start a photography business but how realistic is that really? I feel uncomfortable moving too far from my parents because I feel that I'll ultimately have to move in with them. Thankfully they love and support me, but obviously I'm not thrilled about this. I'm scared of what will happen when they get older. What if they fall ill? What happens when they die? I'm terrified of ending up on disability because I feel that my benefits would be the first thing on the chopping block when the government tries to balance the budget. I apologize for the length of this post, and for the abject hopelessness of it. I'm sure that many of you felt this way when you were first diagnosed. How did you get through it? What keeps you going in the face of this terrible disease? How do you cope with the isolation and lonliness of living with it? And how do you cope with the horrible wearing off periods?
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