I hesitate to bring this up ... a complicated issue, easily misunderstood.

For backstory - click here

Reading that previous post, you'll understand that I'm well within the description for DBS surgery, but not suicidally desparate.

My quandry ...

(For the previous 3 years) I live on a generous amount of monthly money from Social Security Disability and a disability annuity from my former employer.

A nasty (and distasteful) Catch-22 arrises in my poor worried brain ... what level of effectiveness from my upcoming DBS surgery will cause me to feel that re-entry into the work force is the right thing for me to do?

Given the wide range of DBS outcome possibilities, (that will also vary over time) this is a difficult issue to come to grips with.

As an untrained laborer, (30 years on a factory floor) the chances of finding employment that would pay anything close to what I receive now are really zero.

Add to that my $520 monthly car loan payment that is being paid for me by a loan insurance company and that my wife will soon go from $450 clear a week to $100 ... and the picture darkens.

This all upsets my thinking and attitude towards the DBS ...

What if the DBS is a roaring success, initially? (and then turns ugly?)

What if the DBS leaves me "close, but no cigar" ... say a 60 - 80 % improvement?

I feel like I'm in a horrible situation of rooting against myself ... to maintain my comfortable financial status quo.

Please. If you choose to comment, consider carefully.

MikeTTF

Mike,

So many thoughts that could be written here; hard to know where to start.

My initial reaction is - don't go back to work unless you want to or can afford to. Charlie, help me out here, but I don't think having a DBS disqualifies you from disability. I think it would be a personal choice.

Staying with that assumption, I would also suggest that you have no guilty feelings over feeling better, but not working. You have to be very ill to consider puttiing a battery and electrodes in your body to operate - you are dependent upon that and that is a disability.

I don't know about your disability plan, but social security allows you to work and make so much plus still collect. As a former teacher, I could not do this because my teacher retirement, which I collect in addition to social security, does not allow any employment. So it is possible, if you want to work, that you may be able to up to a certain amount per month.

Then there are the medical benefits to consider. After two years on SSDI, you can go on Medicare.

It's a tough decision, but to me, not one to be made out of guilt at not being productive. [ and I don't know if this is part of what you meant or not] What you have been and will be going through have certainly earned you the benefits after 30 hardworking years and being struck with a debilitating illness.

As has been frequently stated about this surgery, it's a quality of life issue for awhile, then becomes your only hope for improvement. It's a matter of where you fall within the range, and what your doctors think about your chances of improvement should you delay it.

Good luck,
Paula

I would appreciate if someone who has had a DBS would confirm whether or not you could lose disability from the improvement.

I had experimental surgery 6 years ago for Parkinson's. The surgery implanted retinal cells into my brain with the hope that they would continue making dopamine as they normally do. (Spheramine or STEPS trial).

Your question was one of my first before I had the surgery. What if I get better enough to override my disability? I was an elementary princnipal, and you don't just walk into those jobs; you work your way up. And what about my insurance? I am on Medicare (for disability) and kept my school insurance as supplemental. If I lost my disability, I would also lose my insurance.

Well, I DID get better, but not enough to go back to work. I was advancing pretty rapidly before the surgery. After 6 years I have not progressed, and in fact have improved. Shortly after my 3rd anniversary with the surgery, I received a questionnaire from Social Security. One of the questions was "Are you better than when you filed for disability?" and like an idiot, I told the truth.

I was "better," but still had PD - and have on/off's, dyskinesia, cognitive problems, and balance issues. That "yes" was all it took; I got a letter from my SS friends asking for a full review for disability. I was devastated!
It took a lot of work and documentation, but I made the criteria for "disabled" again.

I went through and specifically named "how it was" versus "how it is" and compared my symptoms before and after. And I didn't have to lie (but I sometimes think I should have on that dumb ole questionnaire!). Here are some examples given on the review:
1. Before
Cannot get up during the night by myself

After
Able to go to the bathroom at night but sometimes need walker and am very slow and rigid

2. Before
Cannot turn in bed

After
Can turn in bed, but not without great effort and slowness

It did the trick!

So have your DBS, but you still will not be cured; you will just have an improved quality of life. And if you want to work, Social Security has a program where you can try working but only for limited hours without giving up your pension.

Best to you, Mike!
Peggy

Thanks Paula and Peggy for your understanding and thoughtful posts.

I read a post to NPH's "Ask the Doctor" a few years ago where someone said that DBS "would be a cure (or at least grounds for disability re-appraisal) in the eyes of Social Security" Now, of course, while that may not be accurate, it does put a bug in one's ear.

The mention of the questionaire ... yes, I would be firm (in that case) that I was not any better. But, for the life of me, I couldn't fake a lack of improvement in front of a SS doctor doing an appraisal. I'm just not that devious (or clever)

The more I think of this, the more it bothers me. I've changed my mind about having the DBS 3 times in the last two weeks. I really hate to be (somewhat) over worrying about the surgical risks, only to be thrown to square one by the prospect of it being a success! That's just ugly.

MikeTTF

Up at 3 am and still being productive - see - who needs a job? I emailed a neurologist with PD who has elected to have DBS at a younger age. He didn't know the answer for sure, but highly doubted that SSDI would go after anyone for DBS improvement. He doesn't think there would even be questions asked in most cases. It is deceiving to think you are actually better.

There are too many issues with PD that make it hard to work other than just the motor symptoms that the DBS would address. He doubted that they could win against a patient and would never recommend NOT to have one for that reason.

I'd put that worry to rest, and make working a personal choice that will not overtax you. Ironically, we actually can't afford to work in many cases - and we sure do become unreliable - so much variability from day to day, even hour to hour.

Paula

OK, this goes deep. What is the meaning of life?

Is it to be able to work?

Or is it to be able to be alive and still make a difference?

Losing my job was the hardest thing I have ever been through. It has taken me years (at least a good 4) to get to a place of equilibrium. One of the words of advice that were most important to me came from a neuropsychologist who specializes in PD. He told me at some point in the journey that I probably could still work full time - but it would take all of my effort; I would have nothing left over for family, or myself, or my friends, or my home. He asked, "Is that really any way to live? What is the purpose of your life?"

That sealed it for me. My way of life has changed due to the extreme financial constraints under which I now live. But I enjoy life. I am involved in my daughter's life - she will soon be away at college. I am involved in PD advocacy. I have time to read and learn. I can visit with friends. I can walk and play with my dog.

The trade off was huge - but worth it. I lost my job but gained peace of mind.

8 years out with PD, I am not any where near the need for DBS. But I have pondered the future, and wondered about just those things that trouble you now. What if a cure came? What if I could work again? What would it be like to enter the job market after years off on disability? Would it make my life more meaningful to be healthy again? What makes for a meaningful life?

Choosing a DBS is a big decision. The many friends I have who have had a successful DBS have not done it in order to keep working or to re-enter the job market. They've done it because it was the best way at the time to claim a better quality of life - the meds had maxed out.

I understand why you waver.

I worked for two years after my DBS, while it took care of my worst symptoms, I found that work used up all my energy and I had nothing left for my family.

If you have to go in for a SSDI physical, turn yourself off before hand. This will give the doctor an excellent view of you at your worst. Just as long as you say "no improvement" (Which is true when you think about it) I doubt seriously that they'll hassle you.

Charlie

Hello,

I had DBS surgery last December. I have been on disability for 12 years and that has not changed. I have been able to cut way back on my meds which were causing me too many trips to the ER to be flushed out and restarted on a different drug regiman. This happened twice. I lost 6 days out of my life. I chose to have the surgery in order to cut back on my drugs. Using cutting back on the amount of drugs I take, the surgery, for me, was a roaring success.

I would not recommend anyone to wait to the extreme point I had to before having the surgery. I talked to the manager at Medtronic who has been on the project since day one for 14 years (fortunately, I live within spitting distance of Medtronic headquarters) and was told the success rate is higher for those who have the surgery only a few years into the disease, espiecially young onset Parkinsonisans. If you wait as long as I was forced to (I had to fight hard to be allowed to have the surgery) and you wait until you have been on carpidopa/levodopa long enough where you can't tell if the dyskenisias are caused by the wearing off or the levodopa kicking in, the surgery will not be as beneficial.

No one can answer your question, because the reaction to the surgery is different for everyone. You are setting income for your measure of success or failure. I wish I had that opportunity. I am afraid the only way for you to find out is to step up to the bat and take a swing. Maybe you will hit the ball maybe you won't. But either way you will be a winner! You will have defeated fear.

Best Regards,
Vicky