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Calliope

New Member, Wife of YOPD Nursing Home Insurance

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Hello, everyone.  Thanks for such a helpful forum.  My husband's neurologist for other minor issues told him his resting tremor was harmless for a year, then all of a sudden he diagnosed my husband with PD in order to challenge test him with Alizect, saying he wasn't allowed to prescribe the drug unless he was diagnosed first.  Neither of us knew anything about PD and it was a shock.  He didn't get any better with the Azilect, but now that I'm reading up, he has all the very beginning subtle signs.  

But I feel like the neurologist, not a movement disorder doc, blindsided us.  Now we can never get long term nursing insurance for my husband assuming it's PD, and I'm eight years older than he is, so we really need it now, I'm thinking.  I'm wondering if you might have advice on whether we might ask the doctor to remove the diagnosis from his records because the meds didn't work and he isn't suffering in any way.  We are already on a rigorous exercise program to try to keep it at bay for now.  If I could even get the doc to agree to it, would a reversed diagnosis work to qualify us for a long term nursing care policy?

I would be very interested in how others handle this Catch 22 of a diagnosis ruining chances of getting the long term help someone with PD needs.  Thanks so much for listening.  I have so many questions for all of you but I'll start here.  I'm really glad this forum is here.  

 

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Choice of Azilect as a 'challenge' drug is odd--never heard of it used that way before. I think the consensus is, the level of symptom relief from Azilect is modest (at best), and it usually takes a couple weeks to build up to point anything is noticed. Doesn't make much sense as a diagnostic tool.

Beyond that, it's weird the neuro would say he can't prescribe Azilect w/o a PD diagnoses. I'm not a doctor, but I believe doctors have the right to prescribe anything they want 'off-label' for any suspected condition, based on professional judgement--no formal dx necessary. Maybe he wanted to make sure your insurance covered the Azilect? Still, most doctors have samples they can give patients to cover treatment short-term.

I suspect the possibility of PD will ruin chances for long term care insurance, regardless. FWIW, I don't think many of us have it. It's been discussed on the forums if it's worth it even if you can get it--the aging population means a lot of long term care insurance providers will prob. go bankrupt and not be able to pay anyway.

Good thing with YOPD is it's probably going to be decades before that kind of care is necessary--typically, we progress pretty slowly.

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ShopGuy, thanks so much for your thoughts on this.  That makes sense.  I could only find a Sinemet for a challenge drug, never Azilect.  And I thought the idea of giving a diagnosis based on tremor alone was pretty out there.  It sounds like our best next step is to get an actual movement disorder specialist for the PD aspect.  Our insurance is very good, so we should be able to get someone who knows what they are doing.

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Calliope,

I guess a question is, how old are the two of you? I checked into long term care insurance ten years ago. My wife was already diagnosed and I could get it for $2,850 a year. It would pay out up to $100,000 over three years. The average person is in long term care an average of six months, so I figured on average we would collect around $16, 666. I put the money in a Roth IRA where we will get it back. In ten years alone now I was able to put the equivalent of $28,500 in the Roth, plus the earnings. It will be something you can use whether long term care is needed or not. That is what I did anyway.

 

Coach T

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Coacht, thank you for this information.  This is the way I prefer to do things crunching numbers like this.  I didn't know that one spouse can get insurance and it applies to the other.  Great thinking on this one and I will run some numbers on it.

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