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Found 15 results

  1. coacht


    Hello all, My DW has reached the point they don't want her to work much as a substitute teacher. She is really out of it the days she does work. I mentioned applying for disability and she is considering it. What was the tipping point where your PWP applied for disability? How hard was it to apply and what all did you have to do to document the disability? I am looking at the SSI website, I just need some pointers as to best how to proceed. Thanks, Coach T
  2. The first change in guidelines for approving Parkinson's patients for SSDI since 1985 recognizes that PWP suffer from both motor and non-motor symptoms. https://www.michaeljfox.org/foundation/news-detail.php?social-security-administration-recognizes-non-motor-symptoms-of-parkinson-disease&os_cid=fb-a30U0000005anre&s_src=MJFFfb&s_subsrc=ssa_update Just thought you might want to know. Dianne
  3. NoLyFe24

    Not working. Now what?

    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.
  4. Ken_S

    Vocational Assessment

    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
  5. jonticchi

    Filing for SSDI

    Hello All, Happy New Year!!!! I am helping my wife fill out SSDI on line, right now she is collecting Temporary disability. Is there anything I should know about before I start getting into filling all the Doctors and Meds she is on. Just asking for any opinions that you might have. Thanks
  6. Ahhh! Need some support here. My primary care physician's nurse called me two weeks ago to ask how I was doing and to remind me to get lab work soon for my cholesterol. I informed this nurse that I had been cut back hours at work and eventually lost my job and was filing for disability. I told her that I had a student loan due soon and was needing paperwork for that and additional paperwork and documentation in my chart to help the application for disability process to go smoothly - as I am currently living on withdrawn retirement money. She, the nurse, was very supportive and told me to bring in the paperwork and it will be filled out - she even told me it was okay to complete it myself and bring in blank copies if the doctor wanted to change something. I told her I was going to also have my Movement Disorder Specialist fill out paperwork, but if the primary care doctor could do at least the paperwork to take care of my student loan - that would be a relief. I did as she had asked and dropped the paperwork by two weeks ago and heard nothing. I had a lab appointment last week at the doctor's office and inquired about the paperwork at which the office said that the doctor or her nurse would call me back that day (didn't happen). This week, I had a follow-up visit appointment with the primary care physician to discuss my lab work, and was able to meet with my primary care doctor. She usually is very kind and compassionate - she had a very skeptical demeanor this time. She, the doctor, said "So, you want me to fill out disability paperwork". After updating her on my symptoms, job loss, etc. - I affirmed that I did. She said, "and you plan to have your neurologist fill these out too?" I affirmed that did, but that it would be best to have documentation from my primary care and from my Movement Disorder Specialist - and that if she didn't feel comfortable filling out the RFC (residual functional capacity form) or the PAN form (a form which documents the doctors portion of your observed symptoms), that it would help if she could fill out my student loan forgiveness application. I also emphasized the importance of documentation in my chart of my symptoms and handed her a sheet of my current symptoms and struggles. She then examined me (as she has done on previous visits) but this time said, "You are young to have PD- I am not saying that you don't"..."When I examine you, you don't have continuous tremor!"..."Your muscle strength is good"... I explained that I had Sinemet and Azilect in my system (as is in my record) and that my tremor can come and go. She then remarked that she thought I needed a second opinion from a different movement disorder specialist than the one that I am seeing (the one that she had originally referred me to) and additionally wants me to have new MRI's and more testing before she would fill out anything. I explained that I wasn't opposed to that - but not working and with my wife's high deductible insurance - that it would be financially tough - plus waiting to see a new MDS just delays things (as you usually don't get in right away). I told her that if she didn't feel comfortable filling out anything, I would just have my current Movement Disorder Specialist fill out documentation. She said "well, I want to talk to him before your appointment." She said, "I will call you after I talk with him, after your appointment with him, and maybe after you see a different MDS and get additional testing". Her tone and everything seemed very skeptical. I went home feeling totally dejected. My thoughts poured out: Does she know how hard this is for me? I have always had a great work ethic - I blamed my boss and everything around me before accepting that when you are a therapist and can't write, pee your pants, have fatigue, slurred speech, can't do six hours of groups, and as you are losing your job, and not able to do the type of work that you excelled at for many years - and you apply for every kind of job (outside the mental health field) that there is, only to realize you can't do many of the tasks and no one calls you for an interview anyway - that this is all humiliating and depressing. I know of plenty of people that complained of a little back pain and got on disability and were out skiing - I would give anything to be able to ski. Does she think I am faking my tremor because it isn't constant - especially when I am at her office with PD meds in my system just so I can function and walk? Is she going to call my Movement Disorder Specialist and sabotage it for him filling out paperwork? Heck, if I don't have PD that's fine - take me off all this dang medication. Sure I will have to pay extra tax penalties on the retirement that I withdrew and will probably burn through all my retirement trying to find a job that I can still function at. Wish she could see me in the morning when I can't hardly walk. If the Movement Disorder Specialist doesn't fill out my paperwork - then I am screwed. I will just have to force myself to work anywhere I can. Heck, I don't want disability or PD for that matter anyway. Ok, that felt good to get all that out. Any comments?
  7. RNwithPD

    Physician Documentation

    I have been off of work for two weeks now as my PCP and I agreed that I should take some time off in order focus on my health, get started on a new prescription of Primidone, and try to get an exercise program started. Today I received a letter from Aetna Disability Services stating that my claim had been denied. The main problem is insufficient physician documentation. I started requesting my medical records from my physicians a few months ago and I was absolutely appalled at how little information had been charted. A 30-minute doctor's visit is condensed down to 2 or 3 sentences and virtually NONE of my non-motor complaints were even mentioned! What's more, I have been completing the forms provided by the Parkinson's Action Network and submitting them to my physicians with the request that they have them scanned into my medical record. This is what PAN advises to help with disability claims. Well, the doctors haven't been scanning them into the record. :evil: What's more, based on the letters that I have received from Aetna, they are only focusing on the motor symptoms of the disease. Arrrggghhh! I can't seem to get anyone to look at ALL of my symptoms and how they affect me as a whole. I am so frustrated and discouraged! I couldn't get any help in receiving accommodations so that I could continue to work, and now I can't seem to get any help not to work. I can see right now that I have got a LOOOOONG road ahead of me in getting approved for SSDI, and that I probably won't be getting any help from Aetna in the interim. Depressed and demoralized in TN, Kevin
  8. Before 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?
  9. My real question is can my wife go into work on Monday and tell her boss the doctors wants her to go on Disability because she is going on more medication and he is not sure how it will affect her? Now from her work she can only collect Temp. Disability then for Permanent she has to go through SSDI. So is this the right thing to do, her doctor said he would support her in any problems that might come up. She has been working with this company for 3 years.
  10. RNwithPD

    Parkinson's and SSDI

    I came across a research study from December 2007 that many of you might find interesting. It was study conducted at a single academic movement disorders center on patients diagnosed when they were less than 60 years of age. Here are the results: All 68 invited patients participated in the study (mean age 58 years, mean disease duration 9.5 years). Eighty-two percent of patients felt that they were too disabled to work full time at a mean of 3.4 years after PD diagnosis. Patients applied for SSDI at a mean of 5 years after diagnosis, and two-thirds of PD patients who applied for SSDI obtained it on their first attempt. The primary debilitating symptom that subjectively contributed to work disability was fatigue (49% of patients). Patients who successfully acquired SSDI had extensive documentation of physician visits, and the aid of a disability lawyer. Zesiewicz, T. A., Patel-Larson, A., Hauser, R. A., & Sullivan, K. L. (2007, December). Social Security Disability (SSDI) in Parkinson’s Disease. Disability and Rehabilitation, 29(24): 1934-1936.
  11. Lu States

    financial problems

    no one ever seems to talk about financial problems. am i the only one who is now retired, with just SSDI to support me after losing all my savings in 2008, and losing my job because of P.D. at age 63 ? i cannot live on SSDI alone. i never knew i would lose my SS and only have the one. i am drowning here, with little hope of getting by. i am alone, no family, and am very scared. i figure my monies will run out in march. with the $1,000 in SSDI, and $900 rent ( not high rent here ), it is obvious i have no recourse to survive. am i alone ? do you all have family ? do you all have nice bank accounts ? is there anyone that shares these financial problems ? is there any recourse ? i'm frightened and tired. the stress makes everything worse..... am i alone in this ? curious, lu states
  12. jonticchi

    Not sure what to do?

    Hello all, My wife was diagnosed with PD about 2 years ago, but probably had it before as we think back to some odd things. So let’s say she had it for 3 years. She has been working this whole time and it is getting harder and harder for her to stay motivated. With the fatigue and the muscle spasms in her feet. We cannot survive without a second income and I really wish she was able to take a part time job, Instead of working full time. She doesn’t have any benefits with her crappy company, she is on my medical benefits. It seems like according to this forum she will have a hard time get disability. She has a great doctor and has given her a handicapped sticker which she will not go and get. She's only 46 and I am in a position with 2 kids 1 going to college in a 1yr and half and then another in 3yrs. This completed changed our whole plan, I know you all can relate to that, What I am wondering is it worth it to start the ball rolling for Disability now considering it seems to take so long to get approved? On another subject my wife really needs to talk with someone that is going through what she is. She has brought it up to me before saying that she would like to speak with someone and get there perspective on what they are also going through. I am having a hard time as it is but I am hanging in there. I just feel guilty and so sorry for her and to see her like this. Not her movements but the pain and wish I could make her more comfortable. She says I am taking it harder then she is. Sorry for going on! Thanks for listening
  13. Just wanted to share some frustrations with all of you and hope that you have better luck than I do. (WARNING: Long-winded rant!) I changed careers several years ago after going back to school to get a degree in nursing, and started working for my current employer (a major hospital in my area) in the fall of 2008. When I started, I enrolled in the short-term disability insurance program and have been paying approximately $50 per month for it since. After being diagnosed with PD last summer, I started checking into my benefits package at work and discovered some disturbing information. First, the short-term disability insurance is renewed every year and the insurance company asks questions at renewal about any changes in your health in the past year. A co-worker of mine went through the renewal process a few months ago after being diagnosed with MS just a few months prior to that, and they refused to renew his insurance after he had been paying for it for years! My renewal is coming up soon and I fully expect to loose my short-term disability as well. Second, I started checking into our long-term disability insurance program and found that I don't qualify for it until after 5 years of service - which will be in October 2013. However, there is a pre-existing condition clause that states that if I have any pre-existing conditions in the 12-months leading up to the start of the insurance, those conditions will not be covered (i.e. they won't cover me if I become disabled due to PD). Third, my wife and I work for the same healthcare system but have separate medical insurance policies. I couldn't cover her and my step-daughter on my insurance without showing proof that I am legally obligated to provide my step-daughter's health insurance - which I am not. So, we decided to just stay on separate policies at the time, not realizing that I would end up getting PD. The problem now is that if I should become disabled, I will lose my insurance and can't be covered by hers due to pre-exisiting conditions. As you all are probably aware, Medicare doesn't start coverage until 24 months after the date of approval for Social Security Disability. SO....it appears that my career change and my PD diagnosis came together at just the right point in time to really screw me! LOL! If I become disabled, I will have no income and no insurance until I get approved for SSDI and Medicare. I guess I had better find a really good MDO specialist because, one way or another, it looks like I'll be working to age 67. Again, I hope you all have better luck than me!
  14. RNwithPD

    When am I "disabled"?

    I've been searching the forum and found some information about applying for disability, etc., but my question is how do I know when I am disabled (i.e. how do I know when the time is right to stop working and apply for disability)? I have several reasons for asking this question: 1) I don't think there will ever be a time when my doctor says, "I don't think you should work any more." 2) I tend to think of my symptoms of not being that severe in the grand scheme of things, although I am struggling right now with severe fatigue and my motor symptoms are really starting to affect my ability to do my job. 3) I have a tendency to keep telling myself that I'm just being lazy and I need to push myself harder. 4) My job is becoming more stressful every day, and I fear that the stress is only serving to progress the disease - yet I'm not too fond of the idea of not working any more and just being a "house-husband." 5) I want to plan things as much as possible rather than just wait until they happen and wish that I had done things differently. So, at what point do I give up the fight and apply for disability? What circumstances prompted you to stop working and/or file for disability? Kevin