At our Mayo Clinic appointment next month Coy will have a DAT Scan, just as Craig recently did. The grant for this research includes 100 scans. They have done 12 so far, including a range of diagnoses. I asked if it has made a difference in any treatment plans so far, and was told that one patient with a diagnosis of AD also appeared to have signs of LBD, and was given additional medication.

Dr. Boeve is "99% certain" that Coy has DLB. It will be very interesting to see if the scan confirms that.

Curious. Perhaps you can ask what sort of additional medication the AD/LBD person was given upon finding the patient had a dopamine deficiency? Sinemet?

Maybe you can push for Coy to have a PiB PET scan. To me, it would be interesting to know if there's amyloid in the brain (rather than a dopamine deficiency).

Robin, Coy has a pacemaker, which I believe makes him a poor candidate for a PiB PET scan. And I'm pretty content for him to participate in the research he is enrolled in, without pushing for additional tests. He is doing what is asked of him, and he is donating his brain. I think that is sufficient.

And, yes, the additional med was Sinemet.

Coy had the DaTscan. I got the colored images via email from Dr. Boeve late last week. (Ain't technology grand?) I also got a short note saying he'd talk to me soon. He had hospital duties last week and schedule was too crowded.

The note included on the scan results is "Your DaTscan findings indicate moderately reduced nigrostriatal uptake, right more so than left, which explains why the parkinsonism is present. Yet the findings are not dramatically reduced as we typically see in LBD."

I don't know whether this simply means the findings are consistent with the mild symptoms Coy has, or something else. I'll report further after I talk with Boeve.

It is all pretty interesting. They've now done 20 of the 100 for the study. Boeve says a third of them resulted in some treatment adjustments.

We consented to do this as a gift to research.

My heart begins racing when I read these entries. How far we've come! I send best wishes to all participants.

Dorthea

Jeanne, it sounds like good news, at least preliminarily.

Jeanne, let us know what Dr. Boeve says. Sounds good.
Pat

Thanks to you and your husband for generously participating in this important research.

As you know, a DATscan indicates if there's dopamine deficiency in the brain (a deficiency would explain parkinsonism; if there's no deficiency and someone has PD-like symptoms, then MDs look to essential tremor).

I'm assuming "LBD" means "Lewy Body Disease." In other words, Parkinson's Disease, PDD, and DLB.

So perhaps your husband's dementia symptoms are due less to LB Dementia than some other dementia type??

I talked to Dr. Boeve today.

Of the 20+ DaTScans in this study so far, 12 have been of LBD patients. All of them have had abnormalities. Coy’s scan shows the least abnormalities of any of them. What shows accounts for mild Parkinsonism, which Coy has. It is not possible to know what cognitive impairments to expect by looking at Coy’s scan.

The mildness of the abnormalities encourages Dr. Boeve to expect that the Nupro patch will be very effective at a dose low enough to avoid side effects. We have a script for that, but it isn’t readily available yet.

Coy’s cognitive symptoms, all 9 years of his tests at Mayo, and his RBD history are all consistent with a diagnosis of Dementia with Lewy Bodies. There is no reason to suspect other dementing pathologies, although of course they could be present. We may have PiB PET scan done to detect or rule out amyloid later this year.

Dr. Boeve and his colleagues have done further analysis of the Nuvigil study, and they are more impressed with the results. We are waiting for pre-authorization from the insurance for that script. He sent me an abstract of the study and I will post it in the Research section.

Jeanne, this sounds really good! Aren't you pleased?

What exactly is the Nupro patch going to address? mild Parkinsonism symptoms? John has those and he is taking Sinemet, but he still walks "small" far too much even while taking it. Is Nupro patch another/better possible option when taking Namenda and Exelon patch or similar cognitive meds? Can you educate the rest of us a bit about that?

I am also wondering if John could benefit from something like Provigil or Nuvigil to reduce the number of naps he craves during the day. Aren't they designed to help with that?

Thanks again for your update. I feel so encouraged for you and Coy!

Take care,
Pat

Pat, I know that John has an excellent doctor whom you trust. The Nupro patch (for Parkinsonisms) has been off the market for some time, while problems with the adhesive have been addressed, and while it has been approved it may still not be at your friendly neighborhood drug store. Ask the doctor about it.

If John has excessive daytime drowsiness/lack of alertness, discuss it with the doctor. Provigil has worked well for Coy for several years, and it is now available as an inexpensive generic, so that might be the way to start. It is less effective for Coy now, and so we will be trying Nuvigil. I'm putting a study abstract about that in the Research section. For various reasons (change in pharmacies, expired script, drug store screw up in contacting clinic, etc.) we've been out of Provigil for more than a week. I wasn't too concerned because we are (cross you fingers) getting Nuvigil soon. But oh my goodness -- there is nothing like being without a drug to demonstrate what it was doing for you! Provigil may not have been sufficiently potent to keep up with Coy's decline, but it certainly was WAY better than nothing!

And, yes, I'm pleased with the test results. It would be really nice to know why we are so lucky after 9 years, and how to spread that luck around a little to others! I hope researchers discover exactly that!

Me, too, Jeanne.
I am pretty sure that a good part of why Coy has done so well is your vigilance and persistence in seeking solutions, your positive and proactive approach to his LBD symptoms, and your access to the best doctors out there for LBD.
I do wonder why some folks seem to have such accelerated symptoms. That has to be totally devastating to them and their families. I feel so blessed that John has moved slowly so far in his progression.
Thanks for the info about Nupro patch and Provigil. We will pursue those on our next visit with Dr. Kaufer.
Pat