My MS Story

A little over a year ago, I posted a "My MS Story" video and then posted a bit about it on this blog. If you're not familiar with "My MS Story" videos, there are now dozens on YouTube and they tell all kinds of stories about symptoms, diagnoses, treatments, and more. I've tried to learn about the disease through various angles and channels -- and these "My MS Story" videos have been one of the most informative and compelling streams of info.

Today I posted a one-year-update on my original "My MS Story" video. I wanted to disrupt the static nature of my story being something that could be captured in a single video at a single moment, and so it just felt right to record another video. My plan is to put one up each year, creating an ongoing log.


Two New Journal Articles on Diet and MS Find ...

The first article finds that vitamins D and B-12 may keep MS in check. Nothing else, really, about specific diets being good or bad.

The second shows improved mood.


Adv Nutr. 2017 May 15;8(3):463-472. doi: 10.3945/an.116.014191. Print 2017 May.
Influence of Diet in Multiple Sclerosis: A Systematic Review.

Bagur MJ1, Murcia MA2,3, Jiménez-Monreal AM2,3, Tur JA3,4, Bibiloni MM3,4, Alonso GL1, Martínez-Tomé M5,3.
Author information

Nutrition is considered to be a possible factor in the pathogenesis of the neurological disease multiple sclerosis (MS). Nutrition intervention studies suggest that diet may be considered as a complementary treatment to control the progression of the disease; a systematic review of the literature on the influence of diet on MS was therefore conducted. The literature search was conducted by using Medlars Online International Literature (MEDLINE) via PubMed and Scopus. Forty-seven articles met the inclusion criteria. The reviewed articles assessed the relations between macro- and micronutrient intakes and MS incidence. The patients involved used alternative therapies (homeopathy), protocolized diets that included particular foods (herbal products such as grape seed extract, ginseng, blueberries, green tea, etc.), or dietary supplements such as vitamin D, carnitine, melatonin, or coenzyme Q10. Current studies suggest that high serum concentrations of vitamin D, a potent immunomodulator, may decrease the risk of MS and the risk of relapse and new lesions, while improving brain lesions and timed tandem walking. Experimental evidence suggests that serum vitamin D concentration is lower during MS relapses than in remission and is associated with a greater degree of disability [Expanded Disability Status Scale (EDSS) score >3]. The findings suggest that circulating vitamin D concentrations can be considered a biomarker of MS and supplemental vitamin D can be used therapeutically. Other studies point to a negative correlation between serum vitamin B-12 concentrations and EDSS score. Vitamin B-12 has fundamental roles in central nervous system function, especially in the methionine synthase-mediated conversion of homocysteine to methionine, which is essential for DNA and RNA synthesis. Therefore, vitamin B-12 deficiency may lead to an increase in the concentration of homocysteine. Further research is clearly necessary to determine whether treatment with vitamin B-12 supplements delays MS progression.


J Am Coll Nutr. 2017 Mar-Apr;36(3):150-168. doi: 10.1080/07315724.2016.1255160. Epub 2017 Apr 10.

A Multimodal, Nonpharmacologic Intervention Improves Mood and Cognitive Function in People with Multiple Sclerosis.

Lee JE1,2, Bisht B3, Hall MJ4,5, Rubenstein LM6, Louison R1, Klein DT3, Wahls TL3,7.

The objective of this study was to examine whether participation in a 12-month multimodal intervention would improve mood and cognitive function in adults with progressive multiple sclerosis (MS).

In this one-arm, open-label feasibility trial, participants were prescribed a home-based multimodal intervention, including (1) a modified Paleolithic diet; (2) an exercise program (stretching and strengthening of the trunk and lower limb muscles); (3) neuromuscular electrical stimulation (EStim) of trunk and lower limb muscles; and (4) stress management (meditation and self-massage). Individuals completed measures of mood (Beck Anxiety and Depression Inventories) and cognitive (Cognitive Stability Index, Cognitive Screening Test, Delis-Kaplan Executive Function System) and executive function (Wechsler Adult Intelligence Scale) at baseline and 3, 6, 9, and 12 months after the start of the intervention. Dosage of the multimodal intervention was assessed at 3, 6, 9, and 12 months.

The more individuals participated in the intervention activities, the greater improvements they had from baseline to 12 months on self-report measures of anxiety (Beck Anxiety Inventory [BAI]; ps = 0.001 to 0.02), depression (Beck Depression Inventory [BDI]; ps = <0 .0001="" 0.03="" 0.06="" 0.09="" 12="" a="" adult="" after="" and="" anxiety="" associated="" baseline="" changes="" closely="" cognitive="" delis-kaplan="" depression="" diet="" dosage.="" echsler="" evident="" executive="" exercise="" fatigue="" few="" from="" function="" generally="" higher="" improvements="" in="" index="" intake="" intelligence="" intervention="" just="" later="" management="" modified="" months="" mood="" more="" not="" observed="" of="" ognitive="" p="" paleolithic="" period.="" ps="<0.0001" related="" scale="" significantly="" stability="" stress="" system="" than="" the="" to="" until="" were="" whereas="" with="">
A modified Paleolithic diet, exercise, EStim, and stress management intervention like this one has the potential to improve the mood and cognitive symptoms that can lead to considerable suffering in people with MS, potentially improving quality of life and function for people with progressive MS.


Time for the Bus

With the semester over, I've found some more time to work on the prison bus ... resulting in two new videos:

It's been a project that requires a lot of planning, with every step needing to happen in a carefully orchestrated sequence. So I've struggled a bit to keep everything happening properly and in order ... but oddly enough, making these videos has helped with that.

Today I'm working on the water system ... and then onto a finished floor.

MS Symbiosis

Sebastian, one of the MS-vloggers I follow on YouTube, recently posted about moving toward a loving stance in relation to MS. He talks about using Yoga to come to terms with his body including his disease, and I really connect with this.


In the comments, I wrote that "I really connect with what you say here. I've heard and read a lot about people "fighting a war against MS," but I really don't like that kind of confrontational and adversarial thinking. For me, to battle MS would be a wage war on myself. So I try to think about living symbiotically with MS. In some ways, and I can't believe I'm saying this, having MS is one of the best things that has happened to me. So I admire your perspective and share it."

A while back on this blog, I wrote about not (yet) being able to see MS in that way ... and that my buddy/father-in-law John sees having diabetes as an opportunity. But over time I've come to that place ... at least on my good days.


Chasing Satisfaction

I was out on the farm this past week, and I guess you could say I was chasing satisfaction. I got the old tractor running a did some mowing ... and then I cleaned up around our old, hand-dug well and installed a hand-powered pump I had ordered a few years ago and have been waiting to test out.

Here are videos from those two projects:

In both projects, I certainly found satisfaction. The freshly cut grass, the cool water gurgling out of the pump, and also the joys of making both videos. These things were just perfect. Simple pleasures to be sure, and perhaps all the richer for their simplicity. 

Sure I found my mind wandering (during the jobs) to MS, to what happens when I heat up, and to the ever daunting spectre of mobility/immobility. But those fears that I've talked about before on this blog didn't slow me down or diminish the satisfaction. Instead, on these days in spring in 2017, the pleasure was pure and simple and the MS wasn't slowing me down. This is, of course, something I was deeply thankful for. 


Movement Inspiration Video

A cool dance and movement inspiration video for today. For me, there's nothing quite like dance.