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I am 56 and was diagnosed in 2014 but in retrospect was probably showing symptoms for several years before that. I'm a self employed software engineer working out of my home in Seattle and do all my work over the internet. I have no face to face interaction with any of my customers. I have one large customer on the east coast that is responsible for 80-90% of all my income and several smaller one that I do small projects for now and then. Like many people I live paycheck to paycheck. I had worked for the same company for 20+ years but lost my job when the economy crapped out in 2008. Unable to find a new job I started my own business but between being unemployed and getting the business off the ground I've burned through all my savings and home equity. In other words if I lose my main customer things get really bad really fast. I will lose my house, my medical insurance, etc. I know I can apply for disability and medicaid etc. but how long does that take, a year? Two? The problem is not the physical issues with PD but the mental ones. Lack of concentration, apathy, depression, and general cognitive decline. My work is noticeably suffering. I constantly missing deadlines and what I'm delivering is not up to my usual standards. I' working at probably 50% of usual capacity. Either my main customer hasn't noticed or isn't saying anything. I'm not sure which is worse. We haven't finished big multi-year project A yet and he is looking forward to working with me on giant projects B and C in the future. How do I tell him my productivity is substandard and only going to get worse. Morally and ethically how long can I continue to accept the same money for doing less and less work? I know I should be proactive and bring it up before he does but I am deathly afraid if I lose his business I will literally end up homeless. The most insidious thing about PD for me is that mentally I've always been a great problem solver but that capability is what PD is taking from me. As dealing with PD places ever more complex problems in my path my ability to deal with them will be ever decreasing. Thanks for letting me share. I'd be curious to know how others in a similar situation have dealt with the working issue.
Diagnosed in 2009, I continued with my normal schedule until about two years ago. I had struggled with fatigue even before the PD diagnosis was confirmed but it has gotten much worse in the last year and a half. I started by reducing my hours, then I changed to a job working 2 days a week. In the last few months my absences were happening way too often. I talked to my employer and reluctantly gave up my job a few weeks ago. I feel what energy I can find now, I need to use to fight this battle and improve my health. Now what? How do you fight the guilt of not working or contributing to the household? (My husband works a lot and then often has to pick up the slack at home too.) What are some techniques you use to motivate yourself to do more than sit in front of some kind of screen or sleep all day? The tremor, balance and walking difficulties have been getting worse as well but I can still care for myself, drive and do some cleaning. I am having trouble seeing myself as disabled even though I cannot work reliably. How have you dealt with applying for disability and accepting the new normal? Thanks for any thoughts, encouragement, or help you have to offer.
In an attempt to satisfy myself (and others) that surrendering my job (Due to PD) is the right decision: I thought that finding someone to do a vocational ability assessment on me would be a good idea. Someone without a horse in the race who can with credibility and without bias answer the question: should I soldier on or is it time to choose a different route. I’m having problems with this question because I’m increasingly finding myself to be the person holding the show up; that is, I can still do my job but not at the speed others would like to see and I don’t want it to progress to the point of being a problem that needs to be resolved. In my mind, it is already a problem that needs to be resolved but others are either too polite to say it or are without incentive. I have read many posts on this site where people can’t get Doctors to use just the right words, provide the correct documents, or can’t get insurance companies or Social Security disability people to agree with them and it becomes an exercise in frustration. My thought is to provide preemptive information that makes it easy for the powers being to say yes. My questions: Does such a person exist and is so what job title do they go by and where might I find one? Is my plan flawed in some way? Your input will be appreciated Ken
gomindfully posted a topic in Young Onset ForumBefore you decided to quit working, did you have days when you wondered how you were going to get through the whole day? Did you blame yourself - wonder if you were just getting lazy or how much of your struggles were the PD? (I bounce back and forth). Did you wonder whether you needed more medication, more treatment or just to accept that maybe it is time to throw in the towel? I feel like I am putting on a bandage to patch me up to get through the day. Actually in some ways, I literally am. I had to wrap my right foot at the toes because the fanning out of my little toe was rubbing against my shoe and created a painful boney protrusion. I have acid reflux at night (and yes I take medication for it but it only does so much) and have started sleeping with a CPAP machine. I wake up and I am slower than Christmas. I have to do long hours and I was (hopefully still am) good at what I do and am only licensed and have experiencing doing one thing (therapy). I also am expected to do some marketing and some site supervision. I don't have disability insurance. Other employment sites are limited in hiring in this area. I have two children in college and one in middle school. I simply can not afford to work part-time or quit working. Even if I did quit, I couldn't financially make it while waiting and fighting for social security disability. Plus, there is another part of me that says that I am not ready for that yet. I could take a giant leap of faith and start a business in a different field (I have a little hobby of being good at web design - but that would take a lot of energy/effort to get going with no guarantee of steady business). I am exhausted and wonder how much longer I can maintain. My next appointment with my MDS is in middle November, but I am almost afraid to mention my struggles for fear that he will think that I just don't want to work. I am usually a positive and optimistic person but this current mental state is bringing me down lately. Any thoughts?