My wife was diagnosed with Mild Cognitive Impairment (MCI) at the end of December 2015. At the time, the only advice we were given was, “Get your affairs in order.” That might sound harsh, but it did motivate us to action, to fight back as hard as we could. MCI is a predecessor to Alzheimer’s, a disease no one has survived. So, how does one fight something that cannot be beat? We are not out of danger, but we have managed to hold the line. What we have done is provided below. I hope it might help others in our situation.
The first thing I did was to sign up for the Alzheimer’s and Dementia Weekly (AADW) (http://www.alzheimersweekly.com/), an Internet-distributed magazine that is packed with useful information for people dealing with the disease. That resource has been invaluable.
Around the time of her diagnosis, both FOX News and the AADW mentioned an MCI research study called EMERGE. The study was being sponsored by Biogen. They were testing a new monoclonal antibody called aducanumab. Two other large companies were also running studies, but I opted to preregister my wife online into the EMERGE study because the preliminary published results from the Phase 1 and Phase 2 studies were better than for the other two. That was a good decision. The other companies have since discontinued their studies due to lack of promising results, but the Biogen study will continue until June 12, 2018 (at least they will still be taking new enrollees until then). For nearly two years, we have traveled to Houston each month to receive an IV containing aducanumab. At first we did not know if my wife was receiving the placebo or the drug. Because she is still holding steady, we are now quite certain she is receiving the drug. We believe the drug has been a Godsend. Fortunately, there is a two-year follow-on period after the study ends where she will also receive the drug.
In addition to the study, I began researching other drugs and supplements that might give my wife the best chance of long-term survival. Here is the list she is taking now:
Fish Oil + Omega 3
50+ Multi Vitamin
Some items on the list might seem odd, but they all have a purpose and many were prescribed by various physicians. Namenda, Galantamine (Razadyne), and Axona are specifically for MCI, while the others have been shown to provide some benefit by various clinical studies. The antidepressants are also necessary, but we have to be very careful about which one we can use. Some antidepressants can make MCI worse. In addition to the three drugs mentioned above, I am careful to ensure Nicotinamide Riboside; Saffron; Tumeric; fish oil; and Vitamins C, B and E are administered every day.
The Axona is not a common medical food; it requires a prescription. Axona provides a supplement of ketones, the brain’s alternate fuel (vs. glucose). There is some controversy over this supplement, but a strong argument on the side of using it: http://www.alzheimersweekly.com/2018/04/diet-ketones-alzheimers-just-facts.html).
Nicotinamide Riboside is also not a common supplement; however, studies show it helps activate the brain’s mitochondria to help with the removal of amyloid plaques. (http://www.alzheimersweekly.com/2017/12/healthy-mitochondria-could-stop.html)
Relative to the antidepressants, they are necessary, especially in the early stages of MCI. The problem is the patient can still remember all the things he/she used to be able to do, but can no longer accomplish. That leads to enormous frustration, self-anger, and depression. My wife received straight As in calculus when in college, but can no longer add or subtract. Common things like dialing a phone become difficult to impossible. The frustration is hard for a person without the disease to understand but is very real. Tears are common. The MCI/Alzheimer’s patient mourns their own loss of capability. Mourning takes time. Much patience is needed by caregivers.
I am still looking for important work and studies that could be useful to my wife in the future. The most hopeful, in my opinion, is Voyager Therapeutics, a small company in Cambridge, MA. The company has developed a genetically-modified virus capable of producing a monoclonal antibody that attacks tau tangles. In Alzheimer’s disease, amyloid plaques kill brain cells from outside the cell (aducanumab helps eliminate amyloid plaques), while tau tangles kill brain cells from inside the cell. I have written to Voyager and volunteered my wife to be part of their downstream studies, but I have not heard back from them. It is my hope the company will be successful and that they will be ready for Phase 3 studies near the time we complete the Biogen Phase 3 study we are in. As I understand it, we can only be in one study at a time.
While we are doing everything we can to fight back, we are also getting our affairs in order. There is more to that than one might think. Yes, everyone should have a will, Do Not Resuscitate (DNR) order, Durable Power of Attorney, and Organ Donation card. But there is more. Brain donations cannot be done with an Organ Donation card and cannot be directed before death (they can only be done by a surviving spouse). The paperwork for such a donation, however, can be done in advance.
As important as legal issues is the matter of cleaning up loose ends and messes before passing on. Bank accounts need to be consolidated. Old retained papers that are no longer needed should be eliminated. Deeds need to be located and placed in a easily accessible place for those who will settle the estate. These items can take more time than the legal issues. Since we began the process of cleaning up our estate, we have shredded many 50 gallon garbage bags of old paperwork and tax returns—and we have just begun. We are getting rid of real estate we don’t need and equipment we will never use again. I even got rid of my 1990 Nissan 300 ZX (with less than 50,000 miles on it), and gave away my wood chipper. I am also on a quest to finish the remaining five books I have written but never edited. We want everything cleaned up, even the closets. Those who manage our estate will be thankful for that when the time comes.
I sincerely hope that not one person who reads this will need the advice.
Thanks for reading,
James L. Hatch