Now, my wife has Lewy Body Disease (LBD). There is no treatment. There is no cure. Average life span from diagnosis is 1 – 5 years. We are one year into this nightmare. The outlook appears hopeless, but that doesn’t mean we won’t go down fighting. As my wife’s analytical capabilities gradually fade, the management of her care falls to me. That also means the fight to keep he alive also falls to me. In the case of LBD, like Alzheimer’s and Parkenson’s, that means doing as much research as possible – and relying on as large a network as you can muster to extend your research grasp.
In our case, we have seen experts in this field in Dallas and Houston, as well as where we live. We are open to trying anything but there are few things to try. Our mainstays are Namenda and Razadyne. Both treat symptoms but do nothing to slow the accumulation of amyloid plaques and tau tangles … and the corresponding death of brain cells. So far, those medications enable my wife to retain a near-normal level of cognizance, although without “executive functioning”.
She is also using a new prescription product called Axona. It’s a little “out there”. Because the dying brain does not metabolize sugar well, the Axona provides a ketone food that provides an additional energy source. She is also taking a plethora of supplements: turmeric, fish oil, co Q-10, vitamins, and baby aspirin among many others. The most promising of all the supplements is Pyrroloquinoline Quinone Disodium Salt (PQQ) (type “Lewy Body amyloid PQQ” into your browser to get articles like http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2881056/. In general, “pyrroloquinline quinone appears to (1) inhibit the formation of amyloid fibrils (Aβ1-42; full inhibition at 70μM PQQ), and although it can also bind to α-synuclein this binding does not indirectly inhibit Aβ1-42 aggregation, and (2) to reduce the cytotoxicity of these fibrils on neuronal cells.” (https://examine.com/supplements/pyrroloquinoline-quinone/).
Another promising supplement I have recently added to my wife’s regime is hemp derived cannabidiol (CBD) capsules. As of June 2015, hemp derived CBD products are legal in Texas (as long as the THC component remains below 1% ). There is research to support the use of CBD as a medical therapy: http://www.ncbi.nlm.nih.gov/pubmed/19228180, http://www.leafscience.com/2014/03/05/marijuana-ingredient-may-cure-alzheimers-study-suggests/, and many others. My overall understanding of CBD is that it has antioxidant, anti-inflammatory, and neuroprotective effects. Like any other attack on the body’s cells, there is inflammation where brain cells are dying. That is the reason anti-inflammatory agents work. I also understand that the helpful effect of anti-inflammatory agents only applies in the early stages of LBD, so I expect the CBD benefit might be temporary.
What might not be temporary, however, is the second part of the marijuana equation, a chemical compound called tetrahydrocannabinol (THC) (http://www.sciencealert.com/marijuana-compound-removes-toxic-alzheimer-s-protein-from-the-brain). THC is the psychedelic component in marijuana. It is illegal in Texas. Currently, the use of both recreational and medicinal marijuana has been entirely legalized in the states of Alaska, Colorado, Oregon, and Washington. For most of the rest of us, anything with more than a trace of THC is illegal. It is also worth noting that marijuana is against federal law, regardless of what individual states do (http://www.ibtimes.com/marijuana-legalization-could-2016-be-year-federal-law-derails-cannabis-movement-2258515).
In other words, while credible medical evidence suggests THC could well help my wife, I cannot get the drug where I live. It is also worth noting that my wife’s need for THC could be temporary because the first effective drug against Alzheimer’s could be available as soon as 2020 (http://www.latimes.com/science/sciencenow/la-sci-sn-antibody-amyloid-alzheimers-20160831-snap-story.html). It would be a disaster to lose her just before a true treatment came on the market.
So what is the natural course one should take in such a situation? In my mind, it is obscene that something that could save my wife’s life is not available to me. Therefore, I refer back to the first sentence in this blog.
Thanks for reading,
James L. Hatch