Category Archives: Multiple Sclerosis

In the blood

I’m not sure if I’ve written a post about the fact that I have a Monoclonal Gammopathy of Undetermined Significance (MGUS). Learn more about it here if you’re interested. I could tell a long story about it, but the abridged version is that I may be heading toward a diagnosis of a blood cancer called Multiple Myeloma.

The average survival rate for people with this condition is five years, but some people live for twenty-five years after being diagnosed. The treatment is a three-drug therapy: bortezomib, lenalidomide, and dexamethasone. There’s information about a study of that therapy here.

My husband, Ernie, is quite worried that I might one day be diagnosed with this cancer. I am not so concerned because I’m convinced that there is life after death. I’ll write about my interest in near-death experiences (NDEs) another time.

I do owe it to my husband to try and stick around as long as I can. This is where the non-traditional medicine comes in.

There was an Amish healer in Indiana named Solomon Wickey. He is said to have cured people who have cancer and other ailments with herbs, and diet. Ernie knew a few people whose lives were extended after being treated by Wickey, so he believes he was for real. So, Ernie did a Google search for any Wickey protégées that might be practicing. He found a blog post listing a few of them and insisted that I contact one of them. I was resistant to the idea, mostly because I do not currently have Multiple Myeloma. What would I ask the person to cure me of?

Ernie decided he liked one of these people and kept pestering me to call her. I agreed to see her if he would call and make the appointment for me. He made the call, and a week or two later we made the hour and a half drive for a consultation.

I won’t reveal the practitioner’s name unless the next round of blood tests shows a lessening or reversal of the MGUS. I will tell you that her methods could be considered kind of “out there on the fringe.” She put touched my right leg with one hand and then seemed to be sensing things about my health. When something came up, her free hand would twitch. I was willing to accept that what she was doing could be legitimate because I believe in a lot of things that haven’t been proven by science.

The consultation ended with her prescriptions me some supplements to take for weeks and instructions to come back for a follow-up appointment.

The supplements cost over $400, so you have to wonder if it’s all just a scam. I don’t know if my doctors would approve of me taking all of this stuff. I did some research and didn’t find any known dangerous drug interactions. I have had no adverse side effects so far. One of the things she prescribed is CBD oil, and I do think it’s helping me to sleep through the night. It might also be helping with MS-related spasticity. It might all be a result of the placebo effect.

That’s the story so far.

And here’s the art.

Abstract digital art composition

Multiple Sclerosis researchers aren’t phoning it in

This is recent Science Node article of mine. I’m still learning to be okay with an editor’s tweaks. My style is probably a little drier than his.
Duke researchers use smartphones to paint a clearer picture of multiple sclerosis.
Speed read

Multiple sclerosis is a multifaceted neurological disorder that can perplex scientists. To fill in the gaps in their knowledge, researchers are now looking to mobile phone technology.

In Multiple Sclerosis (MS), a condition that affects an estimated 2.3 million people worldwide, the body’s immune system attacks the central nervous system, interrupting and distorting impulses traveling between the brain and the body.

MS symptoms can include fatigue, numbness and tingling, weakness, walking difficulties, bladder and bowel problems, and cognitive changes. Some less common symptoms are speech problems, tremors, breathing problems, headache, and seizures.

MS symptoms vary and can be triggered by things like stress or temperature extremes. Because every person who has MS experiences it differently, it is difficult for scientists to grasp.

That’s one of the reasons  F. Lee Hartsell and researchers at Duke University launched MS Mosaic, an iPhone app to gather data from MS patients.

MS Mosaic will help researchers better understand how patients live with MS from day to day.

Got smartphone?

Designed by Thread Research, MS Mosaic employs surveys and tasks to record and track MS symptoms.

To get involved, participants download the app, sign up for an MS Mosaic account, and start answering health questions. Each day, the app will prompt users to rate the severity of 19 symptoms on a scale of zero to five.

The app also asks if the user feels he or she is having a relapse. A relapse, also known as a flare-up or exacerbation, is marked by the occurrence of new symptoms or a worsening of existing symptoms.

On some days, MS Mosaic assigns physical tasks to complete. One activity has participants walk 25 steps forward and back with the phone attached to the body to test the functionality of the walk.

Another task is tapping the iPhone screen repeatedly to test fatigability, motor speed, and coordination.

There is a test that involves adding a series of numbers, another that requires the person to move a virtual peg across the phone screen, and a game that tests short-term memory.

Smart machine?

Hartsell says the app will soon incorporate artificial intelligence to improve predictive ability. “AI will prove invaluable,” he says. “Very soon we hope to use machine learning to identify patterns in our data that can help explain the seemingly random symptom fluctuations people with MS experience.”

Hartsell believes that AI will help the researchers identify related symptoms, and generate algorithms that can predict symptom changes. He hopes that as the data becomes larger, the app will be able to deliver personalized insights to users.

Researchers also hope that insights gained from the Mosaic study will help customize symptom management and one day influence all MS care. One of the study’s goals is to understand why some people with MS experience different symptoms than others, and why symptoms can vary over time.

The study is open to anyone 18 or older (with or without MS) who lives in the US and is comfortable reading English. There are currently around 300 people enrolled, and enrollment is increasing each week, Hartsell says.

Hartsell is seeking to increase participation in this study and also to recruit members to the Mosaic research team. The MS Mosaic Artisans Project aims to assemble the skills of MS patients, care partners, researchers, and clinicians to share information in the areas of platform development, data science, disease education, and care improvement.

If you would like to help or learn more about this study and find resources about Multiple Sclerosis, visit the MS Mosaic web site.

Meditation Dream 

I knew I wanted to write today, so I thought about it and then got nervous.  I got myself a little worked up about what to write. Now I seem to be writing about the process of thinking and worrying about writing. Is it supposed to work this way?

Dreams are the New Reality

In one of my dreams last night, I was in some unknown location when a guy (I think he was Asian) asked me to meditate with him. I agreed to do so, and we sat down on the floor holding hands with eyes closed. The session was successful. The guy acquired lots of good energy from me, and I felt as if I helped him. The dream tells me that I'm on the right track in my spiritual pursuits.  I am sure now that when I dream, I go to real places. I visit other planes of existence. I may have thousands of lives.

Food

I bought some baby spinach the other day. I think I'll do a salad with strawberries. I need some almond slivers and red onion to add to it. I can either make my own vinaigrette or buy some.

Another food thought is to prep an onion or two and freeze them for later use. I think you can do that. What about garlic? I'll have to look it up.

I have sweet potatoes to cook as well as frozen salmon.

Yoga

I've been doing yoga fairly regularly. I think it has improved my gait, but it could be that I'm just at a good walking time of my nutty hormonal cycle. It seems to work for me to do a session at 9 pm most weeknights.

Jewelry

I've been spending a lot of time practicing wrapped loops. I'm getting better at it. I made a necklace for Linda, one of the residents at my dad's assisted living facility.  It's not perfect, but I'm happy with it. I thought the pendant was an angel, but I realized it must be a fairy after looking more closely at it.

Wire wrapped loop necklace with fairy pendant.

These Days

Last night I dreamed about the importance of documenting my life via blog or journal. I think I was able to look something up in a blog and figure out something about my life. I can’t remember what it was, though.
I’m convinced that there is an afterlife. I’ve always suspected it, but after listening to the podcast, Real Ghost Stories Online, I am a believer. Do we go on forever, or is there an eventual end to our post-corporeal existence? It can’t be healthy to dwell upon these matters. I should stick to the life that I have now.

Read more

Egg Spinach Bake-a sort of recipe

I would love to be a full-time food blogger, but I don’t know that much about food and cooking. What I can do is write about my efforts to cook healthy meals for myself. I have MS, so healthy eating should be a top priority in my life. Eating healthfully takes a bit of time and effort. I don’t have tons of time, or should I say, that I don’t always manage my time well? I need a way to make healthy eating easy. I need to take action without having first devised some elaborate plan that requires the use of Microsoft Project, and an administrative assistant. I have to take baby-steps.

Today, I’m sharing an easy recipe that works for me. It’s a baked egg and spinach meal. I’ll admit it needs a flavor upgrade, but it’s edible and gives me a vegetable serving. That’s not too shabby. This is loosely based on this recipe on epicurious.

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The Common Cold

I’m getting over a cold this weekend. The illness itself only lasted about four days, but the lead up to getting cold symptoms was a week and a half. I blame MS and maybe hormones.

I realized several years ago that I would inevitably have low energy periods each month. I experienced flu-like symptoms (fatigue and muscle aches) without the upper respiratory distress. Every time I made plans to start a regular fitness regime, I would feel not well enough to get started.  Now that I know I have MS, it all makes sense.

You see, the period when I’m coming down with a cold is slightly worse for me than for people who don’t have an autoimmune disease. I’m just guessing. I haven’t done a study. I missed a few days of work last week because it seemed prudent not to overtax myself. I didn’t get a lot of exercise either. I feared that overdoing it could lead to a flare-up.

The only way I can get in better shape when I’m faced with these monthly energy fluctuations is to not skip workouts when I’m feeling good, and do what I can during my less than 100% periods. I’m considering getting in a little strength training every day with some cardio built in. I keep talking about it, but not making a plan. The trick is not to use the lack of a plan as an excuse to doing nothing.

Today, I’m recovering. Tomorrow should be better. I might do some hooping.

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Let’s give this year a try

It’s 2017 and I’m still here, but I sometimes feel like I’m running out of time. The best course of action would be to form a plan. Can I make a plan without the plan itself becoming my primary focus? Or, is that the point? They say that it’s the journey and not the destination, don’t they? Oh, THEY are wise.

Resolve

I gave up on making New Year’s resolution. They set you up for failure. I do however, want to make some changes in my life this year. I have MS, so taking care of my physical and mental health should be my number one priority. That means making more time for exercise, and to do that I will need to put my needs before my father’s needs. Taking time to cook healthy meals is another top priority. Next on the list is my creative practice. I want to continue to make lots of art and jewelry. I want to start selling that art and jewelry. As the list grows, I begin to worry that I won’t be able to manage it all. I want to give up before I start.

That paragraph looked like a bunch of New Year’s resolutions to me. I think it will help if I blog everyday. I know, that’s another item added to the list, but I won’t achieve anything if I don’t keep reaching. This year, I’m taking a journey, and I’ll blog about. That’s the ticket!

sketch

Beginnings of a mixed media work.

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