Wednesday, April 11, 2018

Alzheimer’s—Our Personal Fight

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:

Vitamin E
Namenda XR
Galantamine (Razadyne)
Super B-Complex
Duloxetine (Cymbalta)
Tri-Flora Plus
Vitamin D-3
Fish Oil + Omega 3
50+ Multi Vitamin
Co Q-10
Nicotinamide Riboside
Vitamin C

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


Tina Donahue said...

Such a sad diagnosis. So sorry for your wife and you. Hope science comes up with a solution.

James L. Hatch said...

Thanks, Tina. We are keeping the faith and trying to keep our spirits up. Only time will tell.

Fiona McGier said...

I think I've stated before, that complete care for both of my parents was thrust upon me about 10 years ago, when my dad's 3-year fight against colon cancer resulted in a stroke (he had repeatedly filled his blood pressure meds, but stubbornly refused to even open the package once he got it home.) That put him in the hospital, and when the doctor said it was time for hospice, the hospice nurse spent only a few minutes with Dad, Mom, my brother and me, before writing on a piece of paper and passing it to me: it said, "Emily, dementia?" That totally changed my life.

I had to find safe places for both of my parents, so Dad could die peacefully, and Mom would be taken care of. I was working 2 jobs, and there was no one home during the day; plus, we had kids in every bedroom still, so there wasn't a spare place other than a couch, for her to sleep. My brother dealt with things by pretending that nothing was happening. Then I had to get power-of-attorney, draw up wills for both of them, sell their house, and invest the proceeds so that they would earn money, to enable me to keep Mom in a safe place as long as was needed.

I'd never dealt with Social Security or Medicare before. My experiences with Medicare convinced me that our best bet in this country is to extend Medicare to all. Forget about giving insurance execs huge salaries to deny coverage for their customers. Instead, since Medicare works so well, strengthen it, let it negotiate for prescription prices, and extend it to everyone...phase it in, if need be. But the care is better than anything we've ever been able to afford, and the cost is very affordable.

Mom had vascular dementia, brought on by over 60 years of heavy smoking. So once the mini-strokes got more frequent and closer together, all I could do was visit her 3-4 times a week and try to keep her grounded. Eventually I lost the battle. Mom was lucky in that she had no idea that she was losing her abilities. Your wife, apparently, is not so lucky. I can see how depression would be a major factor.

I used to chat with many of the other residents at the Assisted Living place I had Mom in, and some were in motorized wheelchairs, due to extreme physical disabilities. I used to muse aloud with them, which was a better choice: dementia, in which case the patient is often unaware of any problem, and enjoys life simply, like a child; or retaining one's personality and intellectual abilities, but being trapped in a body that refuses to obey commands and requires diaper changes. No one gets to choose, however, so it was a moot point.

Your wife is extremely lucky to have your loving care, and the resources to use to fight her battle. I hope you have many enjoyable experiences to look back on together, and that you continue to find joy in simple pleasures where you can.

jean hart stewart said...

Wish I could help....many good wishes being sent your way...

James L. Hatch said...

Fiona, your response left me in tears (not all tears are my wife's). There will be a special place in heaven for you for being such a faithful and caring daughter. I am so sorry you and yours had to go through that ordeal. My walk is far easier at this point because my wife can still care for all her basic needs. I cook and clean and do all the paperwork associated with life, but I do not have to bathe her or take care of those other difficult tasks. I do not know how much time we have where she will be aware, but I intend to make the most of it. I keep her socially active and engaged. I also keep her involved with the part of her family that cares about her. I also seek out anything and everything that might extend her life. We keep trying.

Bless you,
James L. Hatch

Fiona McGier said...

Thanks, Jim. But I don't feel like I did anything special. I did what had to be done, since there wasn't anyone else to take care of them. And they had taken care of me when I couldn't, so as a parent, I just knew that someone had to make them feel safe. My brother has never had children, so he had no idea how to deal with the unpleasant physical realities of life.

But as I said, your wife is lucky that you love her so much. A dependable, loving, caring man is what most women want. That's what we write about in our books. Everything else, the hot sex, the conflicts, everything...it's just details. The main thing is that we want to be loved. Some never find that. Some are lucky.

James L. Hatch said...

You are correct, Fiona. Finding love is a wonderful thing. I've been lucky that way too.

James L. Hatch said...

Thank you for your kind words, Jean. You are always deeply considerate of the words people post on this site. I appreciate that.