En route to Phoenix this week, I discovered an article on ground-breaking research by Dr. Paul Alan Cox into what scientists call the “tangle diseases”.
Alzheimer’s, ALS or Lou Gehrig’s disease, Parkinson’s, Lewy’s Dimentia, Pick’s disease and supranuclear palsy are all caused by a build-up of placque and misfolding of the proteins in nerve cells.
Cox, who has studied this affect in several countries over a number of years has established research that may suggest that an amino acid known as L-serine could prevent or slow the onset of tangle diseases.
Cox believes another amino acid called BMAA, when consumed in massive amounts becomes a toxin, replacing L-serine. The absence of L-serine then allows the breakdown of proteins, causing the build up of placque and killing nerve cells.
He found one society which was free of tangle diseases.
“Centenarians walked as gracefully as ballet dancers,” Cox reported. He found their diet was rich in seaweed and tofu, two foods known to contain high levels of L-serine.
L-serine is available as a powder through Amazon.
L-serine is also a natural component of tofu, seaweed, sweet potatoes, and author Jay Heinrichs adds, “even bacon”.
Currently the FDA is looking into the sale of L-serine as a supplement.
The information in this article comes from the article “The Storied Man” by Jay Heinrichs in Southwest, the Magazine. September 2016 edition.
A client of mine lost her husband to Alzheimer’s last year. As his main care giver, she read everything she could find about people’s personal struggles with Alzheimer’s. This literary journey hasn’t stopped with his death. In her grief, she continues to read about other families’ experiences and the disease that took her loved one.
I read them to find out how other people dealt with it. You know, what I could have maybe done differently? And what I did right, she said.
This is her list of titles:
Before I Forget by B. Smith and Dan Gasby.
Come Back Early Today, by Marie Marley, Ph.D.
Slow Dancing With a Stranger by Meryl Comer.
The Long Hello by Cathie Barrie.
To Johnny With Love by Dagmar Christine Albert
My Mom, My Hero by Lisa R. Hirsch.
When Breath Becomes Air by Paul Kalanithi.
She also recommended two books that are fiction based on fact:
Inside the O’Briens by Lisa Genova and
Turn of Mind by Alice La Plante.
Those of you who are dealing with Alzheimer’s may recognize certain aspects of your situation as you read. I hope you find new solutions and humour as well as pathos in these books.
Thanks, Donna, for sharing.
Reading Kamla’s post, I recognize how precious my time with Chris was.
How lucky I was as a long term caregiver to still be in a relationship with someone who loved me.
There were times, I admit, when I was all too focused on getting the laundry done or the fridge cleaned out. When keeping busy was my way of ignoring the fact that I was not free to go outside into the fresh air; to go for a walk, to saunter down to Starbucks and read a paper while sipping a latte.
I prayed a lot. “Pray for courage, Maggie.” Father Obiwumma advised. “I pray for grace,” I said. Grace to accept that this was my decision. Grace to be cheerful, loving, helpful.
Grace to remind myself that being entrenched in this apartment 23 of 24 hours a day was not anyone’s fault. It was my choice.
It’s amazing how hard it can be to remember that sometimes.
Sometimes, I’d get cranky. Then Chris would crack a joke; clown for me, make a face or deliver some harmless, lewd comment. And we would laugh. And in that moment I would truly know how fortunate I was to be with this man on this final journey, to be his chosen companion.
We sat together for hours every day, holding hands, watching movies, Chris giving me a constant flow of data about the actors and locations and sometimes even the history behind the movies. He cried when brave men did great things.
He cried when Doc Holliday died in Tombstone. Not sobbing. Just wiping his eyes and huskily asking for a coffee or fresh water.
After the TV was turned off, we’d say the rosary together. It was what he wanted. I would kneel beside his bedside and we would say the decades together.
I was lucky to be in that relationship right up to the end. Lucky to have all those months and years to nurture and hold him, to understand that I was losing him.
I don’t know how Kamla copes, after losing Jack so suddenly. How people who lose their loved ones in an accident or sudden illness or suicide manage their grief.
I miss Chris. Miss him terribly. But I can’t help feeling, reading other caregiver websites, that somehow, I was one one of the lucky ones.
This month is the birthday month of my twin brothers, Jerry, who is still with us (love you more!) and Jack, who passed away suddenly three years ago. This post is written by his widow, Kamla.
Their two youngest children were in their late teens. Jack was in his fifties, Kamla much younger. The couple everyone admired, they had a huge social circle. Kamla is a nurse. Jack was a trucker and later a crane operator. He was the youngest in our family, one of identical twins.
We all thought he was in amazing shape for his age. Then three years ago, he coughed up blood at work one day. Tests revealed an aggressive, advanced cancer. He died a month later.
May 9th was his birthday. The following (republished with permission) are passages from an email Kamla sent me recently. They are posted in honour of her love for him and his memory:
Sorry I’ve taken so long to reply! I actually was thinking a lot about your request of an “expert” nursing point of view. I honestly have to say I’m no expert.
When Jack was diagnosed I felt so far removed from being a nurse. I was so numb from my disbelief and denial that I really couldn’t function or think rationally.
Somehow all I could think about was how devastated and hurt I was. I could not even face what was happening and that denial has stayed with me for a long time. It has only been after 3 years that I actually can admit to myself that Jack is gone.
I have such a heavy sadness in my heart. I still want to believe that he will be back. I miss him so much. I felt such a profound loss that in the first year I couldn’t even face my life. I went through the motions but can barely remember that first year.
The second year I realized how I needed to be there for the kids. That at least gave me purpose.
But I still often found myself really needing to talk to Jack as I really felt that he was always the better parent and I needed his advice and help. He was such a natural person at being able to help me with decisions and putting things in to perspective.
This last year has found me finally able to talk to someone about my grief. My counsellor is wonderful. We had to start with dealing with my disbelief as it is still there.
I cannot describe how much I loved Jack. He was like part of me and now I do not feel whole. He was my best friend, my hero, my mentor and my true love.
I feel that as a caregiver I failed Jack as it just all happened too fast. My thoughts are with you and Chris and I love you both.
I feel a great empathy for Kamla. She was no failure! Life just didn’t give her time to fully be a caregiver.
The next 3 posts are guest posts from Gemma Tammas, a continuous narrative in three parts.
by Gemma Tamas 2011 October ©
I am a wife, mother, grandmother, and great grandmother.
My career started when I was only eighteen years old looking after my husband, and soon, taking care of my two boys. All of that without having to take a course and study for; it was simply ‘learning on the job.’ But, if I would have given a test, ‘an aptitude test’ called nowadays, I would have passed, because all you needed was love and I had plenty of that. Through the years while ‘training on the job,’ I made many mistakes, too many to count, but my love never suffered by it, my passion to give unscathed.
Now, in my twilight years, I am still taking care of Tom, my husband close to sixty years, as he fights his many sicknesses, with great determination, as he fought his way through many obstacles and hardships during his lifetime. Our marriage was not a perfect one but we are together with a strong bond, called love, forever.
It started four years ago when one morning Tom woke up with high temperature, shaking feverishly, talking nonsense, but still he had enough strength or stubbornness to insist to drive himself to the Vancouver General Hospital. It would have been futile to argue with him to go to a much closer one. Swaying on his feet, jingling his car keys in his hand he dropped them and fell into my arms. With my brother’s help we lifted him into the car, where he slumped down. By the time we arrived at the hospital thirty-five kilometers away, he was unconscious and stayed that way for three days. During that time he was in isolation as the doctors didn’t know if he was infectious until they put him through rigorous testing, while battering me repeatedly with their questions. Was Tom drinking? Was he an alcoholic? I was shocked, offended by their interrogations as Tom never drank, maybe a glass of wine with his meal.
When his fever was under control and his tests showed no infectious disease, he was shifted to the geriatric ward. I spent my time by his bedside from morning till night. Every morning he greeted me with stories about the happenings on the ward the previous night. “Do you know,” he mumbled, “that old Chinese woman in the next bed is a drug dealer conducting her business on her cell phone at night, and another was murdered. Last night.” He whispered in my ears. “Two men, dressed in black, came and killed her.” His eyes filled with horror. “You have to get me out of here,” he begged. “I’ll be the next one, you’ll see.”
12 September, 2014
I’m trying to plan a trip for us to see his son and my sister and brother-in-law. Chris wants to go because it’s probably the last time I’ll get to see everyone.
I’d like to honour this wish, but there are issues. To do so we’d be changing flights in two large airports, flight changes involving wheelchairs and luggage and food appropriate to his diet.
And once we get to either of the two destinations he’ll need time to recuperate; days that he will want to spend in bed. There will be no bath bench, and it’s unlikely there will be six extra pillows to keep him fairly upright at night, and or chairs with arms to help him hoist himself up.
These are younger people we’ll be visiting—healthy jogging, hiking types. The homes will not be geared to the needs of a person with mobility issues.
And then there’s the airfare. In his condition, he does not qualify for travel insurance, and because of his condition, since I am travelling with him, neither do I.
And if he has another heart attack or what the medical professionals refer to as ‘an event’, the trip will be off and we’ll be out that money.
Taking all this in, he has a suggestion. Let’s drive down.
To Arizona and California from our Vancouver, BC home?
This is a man who no longer has the energy to drive to his favourite nearby US location, Tulalip, Washington. It’s a two hour drive one way, and last time we went? He turned around half way there because he was so tired, he just wanted to come home to bed.
So now we’re going to make it to San Diego or Phoenix?
I think his son has to come here, and my sister and her husband, too. I think I should ask them. So he can say his goodbyes.
Come and sit with me, Chris laments.
I never dreamt caregiving would be hard on the butt. Or that it would sometimes result in unusual anxieties.
The kitchen table is not cleared of the breakfast things, the garburetor is full of peels and rinds from this morning’s juice making, and the other half of the sink is full of soaking pots and bowls. This makes me anxious. I like to have everything nice and tidy before I do anything else.
As a child I was taught that work had to be finished before such pleasures as reading, watching TV or playing could be indulged.
So as an adult, I like the dishes done almost before we leave the table. If I get up from eating to make a cup of tea, I will take dishes to put in the sink to soak, or food to put away in the fridge. I might tidy the kitchen or wash the few things in the sink while the water is boiling.
And this housework ethic if you could call it that, absorbs so much of my thinking now because I feel my busyness conflicts with caring for Chris. I know Chris wants me to sit beside him and watch endless hours of TV.
Sitting is hard for me. I like to keep busy. It’s like my body isn’t happy at rest.
I do housework when I can no longer sit. I put in laundry before extensive TV viewing so that I have an excuse to get up and move about; change the loads. Fold the clothes.
I also confess to blogging, journaling, and computer solitaire. Yes, I’m sitting then, too—but sitting and doing.
Chris is resting. He has switched off the television: Not even a “B” western, he says irritably. More like a C minus.
Hopefully, he’s making up some of the sleep he lost last night. The breakfast of oatmeal and blueberries, toast and fresh orange juice should help put him to sleep.
The sun shines in. For now, all is well. Except in my kitchen.
When you are caregiving someone who is very ill you feel as if even the slightest decision might carry the direst consequences. And there are so many decisions to make!
Chris had been lying in bed awake for most of the night. I finally got up with him about three. Made him a coffee at four. Watched true crime TV with him til five. Helped him change his T-shirt wet from sweat, sponged him off, refilled his water jug by six in the a.m.
He would sleep, but he is coughing. Coughing up phlegm. Coughing himself awake if he happens to doze off. He wants to try to sleep. I am wide awake. I step out of the room.
On this particular night, I find myself flustered. Unable to make even the simplest decision. Like whether or not to go in and close the bedroom window.
Experts at the Ethics Resource Centre online give six steps in decision making.
- Define the problem.
- Okay. Chris is coughing and he needs sleep.
- Determine a number of solutions.
- Hmmm. Cough syrup, let him be, change his position.
- Evaluate these solutions to find the best.
- Well, let’s see: Cough syrup may interfere with his meds. Changing his position could wake him up.
- Make the decision:
- Got it–leave him be. This solution is neither intrusive nor likely to affect his meds.
- Act on it.
- Okay, that means go do something else besides standing in the hallway listening to him breathe.
- Evaluate the results.
- He seems to be sleeping just fine.
I spent a lot of time on a seemingly insignificant decision. Stress can do that to you.
When you live with someone who is terminally ill, when you feel personally responsible for their well-being, each decision seems to carry a sort of life and death weight.
I have a lot of trouble with this sometimes, because I always need time to think things through.
What I learned on this night is this: Based on the information above, it seems like needing time is a good thing. I guess it’s just a question of using that time to properly address the issue.
If like me, you’d like to read more about the decision making process at the Ethics Resource Centre, please go to: