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To those who quit working, and maybe those that still are...

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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?

 

 

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As a software engineer, I'd say you'd be better off not creating your own design business but getting in as a designer at a company, especially if you have learned a backend framework and have a portfolio you can show off.  You can PM me if you want, but I've done the web design stuff and unless you have specific contacts with guaranteed work, it's sink or swim and a lot of hustling.  Changing career paths, while it seems odd, may be easier and more financially beneficial.

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Up until a few weeks ago, I was EXACTLY in your same position.  Many people on here have stated that their physician advised them not to work or to go on disability, but in my experience there will never be a day when any of my physicians would say that.  They avoid the subject of disability altogether. 

 

In answer to your questions.  Yes, there were many days when I didn't know how I was going to make it through the day, but somehow I managed to make it.  I also have missed a lot of days of work this year because I was just too tired and in too much pain to even attempt it.  Yes, I often questioned if I was just being lazy. I didn't feel like much of a man if I couldn't work because I was "tired."  My wife can attest that I was driving myself crazy going back and forth between wanting to be optimistic that if I just found the right drug or got the dosage just right then all of this would go away, and being certain that I just couldn't do it any more.  Let me assure you that if you've had PD for very long, you are NOT lazy!  A recent study that I posted in another thread shows that of all the young onset patients at a major university medical center that had filed for disability, the number one reason cited for why they filed was fatigue.  The doctors seem hesitant to acknowledge it, but all of the studies, books, and publications produced in recent years clearly state that fatigue is a major problem for most PD patients. 

 

The only thing that has finally given me peace is that my wife and I had a long sit-down conversation a few weeks ago in which we openly discussed how we felt and our fears about the disease, finances, etc.  What we found is that she really prefers to work as opposed to taking care of the house and homeschooling our daughter (my step-daughter).  My wife currently only works weekends as she is finishing her B.S. of Nursing and will graduate in December.  At that time she will take on a second job (which she has always had until we got married about 4-years ago).  I have already raised my two kids and homeschooled them, and I don't mind being a "domestic" husband.  So I left work on August 18th and don't intend on going back.  I do have private short-term disability, but lost out on the private long-term disability because I couldn't hold out until November of 2015 for my coverage to begin. Money will be extremely tight, and we will probably end up in bankruptcy.  But, it would be pretty much the same if I had waited another couple years anyway - so why torture myself and advance the disease from all of that stress?

 

Obviously everyone's situation is different, and you will have to make your own decisions and find peace with them in your own way.  I hope that this information helps and that you ultimately find that peace.

 

Kevin

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Great comments.  RN, I have been following your posts so I am aware of some of your situation.  I guess I need to do some exploration, soul searching and then determine the right course of action.  

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Pdude,  Not sure how old you are, but if you are not close to retirement age and can manage some work, even if you reduce your work schedule, that might be a good compromise until you are ready for full retirement.  I am fully retired at 58 and have found that I miss my work, social interactions and, of course, my paycheck and benefits.  You'll know when the work is too much.  The difficulty is waiting for the SSDI as it is not possible to work and apply at the same time.  The process for me took three years so we saved up to get us through (however, we didn't count on three years - thought it would be two).  Good luck.  Gardener

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Before you decided to quit working, did you have days when you wondered how you were going to get through the whole day?

Oh yes, for many, many years.  Am sorry you are feeling that.  It's very hard.  I was fortunate in that I was just two years away from retirement, so I retired a little early since I just could not go on.

 

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).

Yes, indeed.  Especially because I wasn't diagnosed with PD until 3 years after retiring.  I knew something was wrong, but I still struggled with feeling like I should have been able to focus, get something done, and then move on to the next thing.  I just couldn't, though.

 

Did you wonder whether you needed more medication, more treatment or just to accept that maybe it is time to throw in the towel?

N/A

 

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.  

That is sooooo hard.  And you sound like someone who enjoys what she does(?).  I did, too.  Very hard to face not being able to do it any more.

 

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 wouldn't worry AT ALL about your MDS thinking that.  If he does, he's not the one you should be going to.

 

I am usually a positive and optimistic person but this current mental state is bringing me down lately.  Any thoughts?

That's a state we all have been in.  It's normal and understandable.  And hard.   We do eventually find our way through the shock and then learn all we can about the disorder and what we need to do.

We surely are feeling with you as you deal with this..

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My husband has been on disability for over two years. Those final years he worked were so very hard. He would stay at work longer and longer to get his job done, come home, sleep, and go back to do it all over again. He took a short term disability leave to adjust meds, do speech therapy, and complete the Big Program. It was supposed to be five weeks and due to a bad reaction to medications, it stretched to five months. He went back to work part-time during which his employer changed his duties so his work was much more stressful and much more demanding (multitasking, tight deadlines, and more). His MDS had told him from the beginning that it would be nonmotor symptoms (multitasking, speed of being able to process information, etc.) that most likely would limit his ability to work. The time away from work for the short term disability showed us that his symptoms could improve. Going back to work even part-time worsened his symptoms so  much that his doctors said he needed not to work. When he went back to work part-time, he worked an afternoon and evening shift. When we'd have lunch before he headed to work, his hand would shake so that we joked it had already gone to work! What you are going through is hard-hard-hard. I do think it is really important to talk to your MDS about the impact of PD on your work. Disability determination will depend on the documentation the doctor has provided over time. 

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Some more great comments for me to reflect upon.  I was originally hoping to work until retirement age - but lately because of how I feel - I get bogged down into wondering how I could even make it another year or so.  I recognize that instead of looking far down the road and wondering about how can I maintain this for years, I need to just look at each day and report my symptoms to my doctor - meanwhile, working hard at coming up with some sort of plan. I admit that for some reason, it is easier for me to under-report symptoms to my doctor than to lay it all out there and fear rejection (i.e. this is why I haven't asked for a handicapped tag but could quite honestly use one sometimes). Right now, it is kind of scary to try to think of a plan, because all the plans involve having money to fall back upon and I fear not having enough time nor extra money to save back.

 

Anyway, I need to not panic and start exploring options.  Thank you all so much!

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Most of all, remember to breathe. 

 

The Parkinson's Action Network has a form to help document symptoms that are impacting your work. My husband filled it out each time he went to the MDS for a year or two before he went on disability (maybe longer). Others have also done that but found their doctors didn't include the info about the symptoms impacting work in the medical record. Here's the link: http://www.parkinsonsaction.org/pdform%C2'>

 

Apart from the financial side, I was worried that my husband would miss work when he went on disability. He didn't! Now that we are two years on the other side of the disability journey, I can say it has worked out just fine for us (would rather he didn't have PD, of course). I can also say that the journey wasn't easy.Do remember to breathe. 

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Before you decided to quit working, did you have days when you wondered how you were going to get through the whole day?  Yes, everyday this happened before I went off on disability 3 months ago.  I didn't make it through all the days.  I cried a lot, it wasn't pretty towards the end.  


 


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).  Yes, it helped me to read on PD impacts on cognition and understand that it was real.  The multitasking, fatigue and clognition were what ultimately what made me stop.  And my Neurologist said it wouldn't improve - that was really hard to hear.  Was very frustrating at the end.  I would go to work and stare at my computer unable to do my work tasks.  I used to be such a high performer, so much of my identity was wrapped around my work, as I worked at same company for 21 years, my whole career.  Hard to leave, like a small town. 


 


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 did try new medications. Was out of options. The cognitive changes are not reversable unfortunately, yet. 


 


I feel like I am putting on a bandage to patch me up to get through the day.  Actually in some ways, Iliterally 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.   Sounds familiar, the last thing I tried was I asked for a different job, so I no longer had direct supervisory responsibilities.  I was also under a lot of pressure and stress at work (I won't go into details but it involved way too many lawyers).  In the new job I was struggling at that as well, that was when I knew I couldn't do it anymore. 


 


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 have 2 in middle school, 1 in high school, and 1 in college as well.  


 


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.   My Neurologist was very understanding.  But then, I had many documented health issues, including visits to my onsite work medical clinic resulting in a few ER trips and consultations with my work medical doctor that required me to take time off multiple times.  Even the Nurse Practitioner at my work asked me if I had thought about not working before I did it.  When enough people started saying that, I started taking it more seriously. 


 


I am usually a positive and optimistic person but this current mental state is bringing me down lately.  Any thoughts?  I understand how you feel, I was in a similar place 3 months ago.  What I can tell you is when I worked, I went to work, came home and crashed.  My house and my family suffered.  I couldn't do anything else due to fatigue.  After I stopped working, I had time to take care of myself.  As a result, I'm doing better, my family is better.  It was hard to leave, but it was a good decision for me. 


 


Does your spouse work? Is that an option?  Fortunately, my spouse makes a good salary (not as great as mine was but good).  So if I don't get SSDI we will be okay.  Not as good as we are now, but we will be okay.    


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just my 2 cents.   even if you don't want to think about SSDI, be prepared to file for it.  that means seeing your MDS on a regular basis so he/she can chart your progression and make sure they really evaluate you.   discuss disability with your MDS and if they play "dumb" find a sympathetic MDS, i know that's not easy.  I've spent months trying to get my MDS to write a letter to SS, he says he will but doesn't.  don't take this lightly because your MDS will be your key to disability, it's not a slam dunk with PD.  I did everything wrong, filed too late, never let customers, friends, extended family see me unmedicated, only saw my MDS when he insisted i come in or he couldn't authorize more RX refills and he did almost no exams, just said i seem to be doing great.  that was fine with me because i was doing ok just on sinemet.   this might seem like hyperbole to you but even though you don't want to think about disability now, knowing you are well prepared to dive into the SSDI experience, which if you get it will qualify you for MEDICARE before 65, will give you some peace of mind.  so my advice is bone up on how a pd'er qualifies for SSDI, i was told by a SS examiner tremor and/or rigidity are what they look for and cognitive problems really  don't count.    you might want to consult with an expert, i've heard sometimes it makes sense to file a SSDI claim just to set a date and then not pursue it.  

hope for the best, plan for the worst.

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just my 2 cents.   even if you don't want to think about SSDI, be prepared to file for it.  that means seeing your MDS on a regular basis so he/she can chart your progression and make sure they really evaluate you.   discuss disability with your MDS and if they play "dumb" find a sympathetic MDS, i know that's not easy.  I've spent months trying to get my MDS to write a letter to SS, he says he will but doesn't.  don't take this lightly because your MDS will be your key to disability, it's not a slam dunk with PD.  I did everything wrong, filed too late, never let customers, friends, extended family see me unmedicated, only saw my MDS when he insisted i come in or he couldn't authorize more RX refills and he did almost no exams, just said i seem to be doing great.  that was fine with me because i was doing ok just on sinemet.   this might seem like hyperbole to you but even though you don't want to think about disability now, knowing you are well prepared to dive into the SSDI experience, which if you get it will qualify you for MEDICARE before 65, will give you some peace of mind.  so my advice is bone up on how a pd'er qualifies for SSDI, i was told by a SS examiner tremor and/or rigidity are what they look for and cognitive problems really  don't count.    you might want to consult with an expert, i've heard sometimes it makes sense to file a SSDI claim just to set a date and then not pursue it.  

hope for the best, plan for the worst.

 

I know that you are right.  My plan was to reflect on all this - and to be quite honest and truthful, I get scared and sick just thinking about it - and I am not usually a fearful kind of person.  I can't see surviving financially seeking disability right now as I have two kids in college and one about to go into high school.  I have a job that has no benefits and my only benefits are medical insurance through my wife.  My home and our cars need repairs and so I get really bummed just thinking about all this.  So I delay, and yet at work, I keep finding myself being sluggish, overwhelmed and upset.  I get mad at myself and then try to problem solve, but it seems that the solving part is hard.  I am used to helping other people find answers, but not helping myself.  My wife is in denial I think - she hopes the MDS will give me a magic pill to make things better.  It is like being stuck in the mud with tires spinning, while recognizing that the car is running out of gas, yet you keep the foot on the gas hoping that somehow and someway a solution will present itself.   

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Pdude -- cool blog.  Hmm, everything sounds way too familiar.

 

Muscle cramping -- every other week I head over for a massage.  Deep tissue, great at getting the knots out.  I kept thinking "too painful, that's it never coming back.... ".  Oh does it help.   The odd ball muscle pulling was creating havoc on my lower back.  My quads and thighs just seem to "fire" pulling other things. Money is tight (She is so sweet, since I'm a repeat who never misses gives me a break).    Probably the best value for money spent.   

 

Don't get too stressed with kids in college.  They probably know better than you, but reality is if they have to take a year off (work and save like crazy), but if you go on disability and your income is way down... they qualify for much more in grants and funding.  My youngest two will be finishing up within two years, so we have had that discussion with them.

 

I'm in that "transition area".  House has 250K equity, sell it and down size now, but for a cheaper place means a longer commute.... or keep it, enjoy having the space (1.5 acre), fifteen minute drive to the office, and let is appreciate and downsize later.  No simple choice, but I'm enjoying having a 1500 sq ft workshop for creative outlets. Always thought I'd retire to the coast, and have supplemental income from welding & machining work. Plans Change.

 

I did look at the PD Form on PAN

http://www.parkinsonsaction.org/pdform

 

I'm like, just curious.... start reading through it. Crap.    I haven't not been doing any moderate exercise this week, due to knee surgery, and realize just a little exercise makes a difference.  Need to get moving, figure boxing gloves and hitting mitts should do the trick (let my son's hold the target mitts.... )

 

Good thread, appreciate your posting and blog.

Edited by TexasTom
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PDude, Your description of being stuck in the mud and the tires spinning was a perfect description of where my husband and I were for a long time. We are on the other side of the mud hole now and, looking back, getting started on climbing out was in some ways the hardest part. Take it in little chunks is my advice as we found it overwhelming to even think about the big picture. 

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Hello. I'm new to this blogging thing but I agree that you should continue toward SSDI. Granted it isn't as much money if you must wait till age 65 but it does allow for early Medicare benefits which is infinitely less expensive than regular insurance.

 

Speaking of traditional insurance, I would like to know if any of you have had your insurance refuse to pay for DAT scan even if it aids the neuro doc in diagnosing Parkinson's vs essential tremor. Mine says it is "investigational and experimental" but the appeal was completed by an Internal Medicine doc not a movement disorder Neurologist.

 

Thanks and I look forward to keeping in touch with all of you.

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First of all, Welcome Susie to our little corner of the web........

 

Where in N. Idaho are you located? (I'm originally from Spokane and have property N of there). The reason I ask, is if you are able, you might want to contact the "Parkinson's Resource Center in Spokane for help. Here's the link: http://www.spokaneparkinsons.org/ . I've talked to them myself, and they seem to be pretty good folks.

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I swear that SSDI and SSI are required to deny the first application for services in Kansas unless you have 1) less than a year to live, or 2) acute Renal Failure.  I've had a couple of friends that work at Kansas Disability Resource Center determining eligibility and they grudgingly agree.  Apply, appeal, prepare to appeal again, then they date the payment back to the eligibility date, so start early.  Documentation is  key.  Kansas Legal Services works with a lot of folks on filing the paperwork if it is too confusing.  I think they have a sliding scale for their fees?  Not sure.  It's been a few years since I've done any eligibility work. 

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Thanks Michael for the welcome. I live in Sandpoint....in fact just moved there. Found an IM doc who is referring me to a neuro in Coeur d'Alene but it's hard to leave my team at Scripps in San Diego. I'm attending a Parkinson boot camp next week with my daughter to gain additional information and get the update from researchers on non-embryonic stem cell treatment. They chose 8 PD patients who have participated in the growth of their own stem cells with the goal of injecting those into the brain to halt the progression of the disease. If anyone is interested in the information go to Scripps.org and look for stem cell research

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Sandpoint is a lovely place......... actually quite beautiful. We have a place (several acres) is in the little town of Springdale pop 153, just West of Loon Lake (Half way between Spokane and Coleville in NE Wa.). More of a get-away place, as we're not there full time.......... The house was built in the mid 1880's of logs cut on the property.

our livingroom

4367807220_1a05c07dbc.jpglivingroom by graflexmaster, on Flickr

 

and our house in the winter........

15484961538_6b701dec0c.jpgspringdale winter by graflexmaster, on Flickr

Edited by AB-Normal
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