Rosalie Richards
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SUPPORT GROUPS—Do what works for you!

6/30/2016

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We all want to be surrounded with support!  But what is available, and what works for us? 

When I was first diagnosed the neurologist urged me to find a support group of fellow diagnosed people.  That was the last thing I wanted at the time. I preferred denial, living my life as though MS didn’t exist, not having to talk about it, I preferred not being there! 

That has shifted.  Years later I find that I feel a kinship and sense of camaraderie with fellow diagnosed people.  We don’t need to talk about symptoms or medication or anything to do with MS, I just like them, know they have dealt with a lot of things I have, and here they are, we are all survivors at this point!  I am much more ready for a support group.

Results of studies say that support is not one-size-fits-all.  We are unique, and we experience different needs at different points in our journey.  We can make our MS our own-do what works for us. 

Here are some forms of support groups.

Traditional support groups--The most obvious sort of support group is one of people with MS who get together weekly or monthly to discuss issues.

There are studies that point to the help of groups that meet in person, and this provides a boost to many people by providing not only camaraderie, but helpful information (https://www.scopus.com/record/display.uri?eid=2-s2.0-77956650152&origin=inward&txGid=0, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3249770/). 

Some people are not reached by this method, though.  One group that is hesitant to go is men who are diagnosed (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4338643/). 

Even when people do participate, it isn’t always helpful.  One small study showed that participants felt less robust emotionally after an 8-week support group session (http://www.ncbi.nlm.nih.gov/pubmed/14760957). 

What about those of us who need a different approach?

Online support groups--The new approach is online support (http://her.oxfordjournals.org/content/16/6/693.full). 

There has been a bias against this.  One service provider that I interviewed said that this is not the quality of support that in-person support groups provide. 

Nevertheless, there is a growth of online and social media support groups for all sorts of challenges, including MS. 

The online group that I enjoy is through the yoga regimen known as DDPYoga.  People who buy the program of DVDs are part of a large and active online community—and a subgroup is for MS diagnosed people.  This is a small group which includes a man, and several women.  Some of us check in weekly, some a few times a year.  If one of us has a question about a regimen or new treatment someone else has done research on it and can tell us more.  Positive support is a given in our interactions.  It is my sort of group.

Online referrals--There is a site that gives links to supports for people with MS (www.healthline.com/health/multiple-sclerosis/support-groups#Overview1). 

Books--I constantly am being referred to books by friends with MS.  The first support I found involved two books.  The first book that I read (The MS Recovery Diet by Sawyer and Bachrach) gave me an unexpected feeling of camaraderie and kinship with people whose stories were in it.  The second was a book which I put together (Beyond MS  Your Best Life) by interviewing 20 people with MS.  Their stories taught me coping skills and gave me a sense of being in this with other people who had backbone and humor to spare. 
 
                                                                                                   *****

These are the sort of support that I have come across.  If you have others to share, I would like to pass them on in the next blog, which will be my final one for the next few months.  Next week I will share the results of my mini-trial of a ‘mice-and-MS’ study that had great results for mice—I want to know what happens when humans give it a go. 
​
Till next week!
Rosalie


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Tai chi--Lowers Distinct MS Symptoms

6/23/2016

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The number of new studies on proposed therapies and regimens—with positive results— suggests that the cure for MS is on the horizon, that it's practically coming into view. 
 
Meanwhile, until that day, how do we get our bodies ready to experience the ability which restored nerve myelin sheaths will recover?  As one neurologist said to me, when the cure comes, we want our bodies to be ready for more movement—no atrophy for us!  One option is Tai chi.
 
Benefits of Tai chi
 
Movement, Strength and Balance

A study presented in 2016 on the use of Tai chi to regain strength and balance.  Researchers identified Tai chi as helpful for multiple sclerosis (MS) patients with impaired balance.  It can improve endurance and strength and decrease fatigue (https://mail.google.com/mail/u/0/#inbox). 
 
Other studies agree—movement and balance and strength are improved with Tai chi
(http://www.sciencedirect.com/science/article/pii/S1744388114000632, http://www.nationalmssociety.org/Living-Well-With-MS/Health-Wellness/Exercise/Adaptive-Tai-Chi). 
 
Walking speed and Hamstring Flexibility

Another study reported  increased walking speed and hamstring flexibility (C. Husted, L. Pham, A. Hekking, and R. Niederman, “Improving quality of life for people with chronic conditions: the example of T'ai chi and multiple sclerosis,” Alternative Therapies in Health and Medicine, vol. 5, no. 5, pp. 70–74, 1999.) after an 8-week Tai chi exercise program.  The authors suggest that during Tai chi exercise our muscles are learning how to achieve movements that we will be able to use in our regular daily activities. 

Other Specific Results

Here are specific findings of how Tai chi and Quigong (a similar meditative movement exercise) improve our health.  In a search of studies, seventy-seven articles met the inclusion criteria for peer review articles with the evidence for achieving outcomes from randomized controlled trials.   Here are the areas where trials showed that these exercises help us--
     Bone density (n [n=number of studies that found this result]=4)
     Cardiopulmonary effects (n=19)
     Physical function (n=16)
     Falls and related risk factors (n=23)
     Quality of Life (n=17)
     Psychological symptoms (n=27)
     Immune function (n=6)
(http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3085832/.
 
Can We Injure Ourselves?
Some exercises can be overdone.   Tai chi doesn’t have this risk.  It is not only effective but also safe (http://www.hindawi.com/journals/ecam/2013/502131/). 

What if Tai chi classes aren’t available to me?
Some of us don’t live near a Tai chi class.  What about us? 
 
We can use internet and our computers.  Youtube has classes in Tai chi and Qigong. 
 
Some Youtube Tai chi and Quigong classes--
  •  An 8-minute exercise class, explained as you go through it (https://www.youtube.com/watch?v=PNtWqDxwwMg).  This is my favorite class, but there are others that are great for advancing.
  • This class that comes with relaxing music (https://www.youtube.com/watch?v=hIOHGrYCEJ4).  This class lasts longer—from 20 minutes to an hour is suggested by the instructor.
  • Qigong—here is a four-minute exercise routine (https://www.youtube.com/watch?v=EaEZVfhn07o). 
             A master Qigong instructor leads this hour long session
 
What if I am in a wheelchair, or if I can’t stand without help?
We can do these movements seated, in a wheelchair or in our dining room chair--
  • Here is one link to a movement without instructions (https://www.youtube.com/watch?v=vHBR5MZmEsY). 
  • Here is one with instructions as you move in your chair—https://www.youtube.com/watch?v=HwMT2JVUkDQ. 
  • I tried the 8-minute class (#1, above) from a chair and it was great—we can make the Tai chi program our own, as DDP Yoga says!
 
These movements encourage relaxation and de-stressing, and it is easy to step into the movements, to feel the energy of the programs. 

Whatever We Do, Let’s Do Something!
We have much we can do to make our experience of MS stronger, more relaxed, with higher energy.  We don’t have to sit still and do nothing while we wait for the cure.  Tai chi is one of the most enjoyable ways to help lower significant symptoms in the meantime.
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Reset Our Bodies to Before MS?

6/16/2016

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You can reset your computer to an earlier date, before there were any problems.

A new study suggests we might do this to our bodies:  return to pre-MS. 

The Reset-Our-Body-to-Before-MS Study
In May of 2016 a study considered this question.  Will a diet regimen significantly impact autoimmune diseases?
(http://multiplesclerosisnewstoday.com/2016/05/31/reverse-ms-dieting-new-report-states/, http://www.wsj.com/articles/could-extremely-low-calorie-diets-help-some-illnesses-1465840207, http://www.cell.com/cell-reports/fulltext/S2211-1247(16)30576-9.)  [Note:  The authors of the study emphasize:  (1) this is not a substitute for medication, (2) always check with a medical professional before trying.]
 
The Regimen
Mice were infected with autoimmune disease, similar to MS.  Then they were put on a 21-day experiment—3 days of low calories, followed by 4 days of regular intake—over the period of 3 weeks. 

Results
The results were not just hopeful, they were astounding. 
1.  For all of the mice symptoms were reduced. 
2.  For 20% of them all symptoms disappeared!

The results are worth reading in more detail: 
  • Reduced Disease Severity of Disease Symptoms
  • Reduced Infiltration of Immune Cells to the Spinal Cord
  • Increased the Number of Naive Cells (This means cells without MS markers or memory)
  • Reduced the Level and Reactivity of Established Autoimmune Cells
  • Stimulated Remyelination [my bold—this is unusual, maybe unheard of!]
 
What about humans? 
This plan was tried in a pilot study on 60 people with Relapsing MS.  The regimen was changed:  1 week of a diet low in calories (300 to 400) followed by 6 months of another diet.  The control group did nothing different, no low calorie, no particular diet. 
Results: 
  1.  People who did the semi-fast followed by Mediterranean diet showed most improvement in symptoms. 
  2. For every participant the regimen they followed was found to be completely safe.
 
Is it better to fast for a long time instead of a few days? 
NO!
That isn’t how it works.  The primary author of the study, Vance Longo of the University of Southern California, said:  “Periodic fasting shows the most promise in getting rid of bad cells and making good ones for regeneration” (http://www.wsj.com/articles/could-extremely-low-calorie-diets-help-some-illnesses-1465840207). 
The authors stress that this is not about a continual low calorie (400 calories) diet plan.  They believe that this worked for the mice because it is a continual changing of diet—from a few days very low to a few days normal—changing all of the time.  [The suggestion is that this will also help ameliorate the negative effects of chemo (https://www.elsevier.com/connect/fasting-may-protect-against-immune-related-effects-of-chemotherapy-and-aging).]
 
Will it work on someone else, like me?
I want to give it 3 weeks and see what happens.  My question:  will symptoms be lessened—or even disappear?
 
My thoughts--
  1. Regimen—Instead of trying a week of 400 calories followed by 6 months of Mediterranean, I will try the regimen for three weeks, more as it was first designed, changing often, and I will tweak the diet:  3 days low calorie followed by 4 days Paleo/Mediterranean plan. 
  2. The mice showed change after 14 days.  I will expect to not see any changes until 14 days.
  3. The mice probably only had the autoimmune disease for a little while before starting the regimen.  I have had MS symptoms for 18 years, and have been diagnosed for five years.  I will be surprised if 3 weeks of this regimen resets my body to pre-MS. 
If I see significant improvement in 3 weeks I will consider making a modified plan of 2 days low calorie/5 days Mediterranean for the following months.
 
                                                                                               * * * * *
We are at a greatly different time with MS than 18 years ago when my symptoms first appeared.  The number of medications, their effectiveness, the fewer side effects, the other approaches to symptom reduction—these things have increased exponentially.
 
This study suggests a regimen—that is radical and cheap and easy—to reset our bodies to pre-MS.
 
Today is day 3 of this plan.  I’ll check back in three weeks from now!

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Using Diet to Stop inflammation and Repair our myelin sheath--

6/9/2016

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Stop inflammation and repair our myelin sheath--How?
 
Our Diet.  What and how we eat.
 
 
Today I want to talk about the most recent study on lowering inflammation.
 
May of 2016:  A Study on Lowering Inflammation and MS
This study, presented by the prestigious Boston Brigham and Women’s Hospital, shows that diet can lower inflammation in the brain of mice that exhibit MS symptoms (http://www.nationalmssociety.org/About-the-Society/News/Researchers-Funded-by-National-MS-Society-Show-(1)).    
 
First   A short explanation of the connection between inflammation and MS
 
In simple English, here is the relationship of inflammation to MS
  1.  We with MS have compromised myelin sheaths, which means that our nerve cells have trouble sending messages to parts of our body, sometimes just can’t ‘talk’ to parts of the body.  At that point we lose physical abilities, and this is called having MS symptoms (http://patient.info/health/multiple-sclerosis-leaflet). 
  2. Inflammation destroys the myelin sheath. 
  3. Whatever we can do to contain inflammation makes sense.
 
Second   A brief history of controlling MS symptoms with diet: 
 
70 years ago people had no idea that diet affects MS symptoms.  In 1948 Roy Swank published a ground-breaking study of the results of diet on lowering MS symptoms.  Many people, for decades, doubted this relationship.    Since then studies have explained why diet helps (lowers inflammation) and they have pinpointed foods that lower inflammation. 
 
Third   Anti-inflammation foods.
 
Here are suggested foods for increasing anti-inflammation:  (http://www.everydayhealth.com/hs/living-with-multiple-sclerosis/managing-ms-and-other-conditions/, http://www.everydayhealth.com/hs/living-well-with-multiple-sclerosis/anti-inflammatory-foods-for-multiple-sclerosis-pictures/).
 
  • Fatty fish Omega-3s help block the body's inflammatory response, according to a 2013 study in the journal "Immunity." However, most Americans consume 10 times more omega-6 fatty acids than omega-3s. Too many omega-6 fatty acids can cause your immune system to become overactive and potentially lead to inflammation.   
  • Fruits/veggies A review of more than 46 studies of dietary patterns found that biomarkers of inflammation were significantly associated with meat-based diets, but not with vegetable and fruit-based diets (http://onlinelibrary.wiley.com/doi/10.1111/nure.12035/abstract?deniedAccessCustomisedMessage=&userIsAuthenticated=false).
  • Tumeric This is the spice found in curry and mustard, giving them both pungency and color. The source of that vibrant yellow is curcumin. Curcumin helps fight inflammation, and one doctor recommends having a teaspoon of this a day. Recent studies show that curcumin may play a direct role in the treatment of multiple sclerosis and related diseases (http://i-base.info/htb/6498, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4342365/). 
  • Ginger Fresh ginger extract has strong anti-neuroinflammatory characteristics (http://www.sciencedirect.com/science/article/pii/S030881461300770X).
  • Avocado—Avocados are a great source of healthy unsaturated fat and antioxidants. The anti-inflammatory properties of avocados are so strong that they may actually offset less healthy food choices. Researchers have found that eating the hamburger with about 2 ounces of avocado limited the inflammatory response seen after eating the hamburger alone (http://www.ncbi.nlm.nih.gov/pubmed/23196671).
  • Healthy oils  such as olive oil, canola oil, soybean oil, or flaxseed oil are the goal of an MS diet (avoid corn or sunflower oil, which contain unhealthy omega-6 fatty acids).
  • Flax  is one of the richest sources of omega-3 fatty acids. Flaxseed also reduces the action of certain inflammation-causing genes. The seeds can pass through your intestines without being digested, so it's important to use ground flaxseed in order to benefit from its health properties. 
  • Walnuts Nuts are nutrient-dense--full of good fats, antioxidants, fiber, and magnesium, all of which have important roles in regulating inflammation. [Walnuts have the distinct ability to inhibit two players in the inflammatory response, according to a 2012 study in the journal "Prostaglandins, Leukotrienes and Essential Fatty Acids" (http://www.sciencedirect.com/science/article/pii/S0952327812001263).
 
We live on the cusp of the cure of MS. 
Every month, every week, there are studies that suggest that both this goal and the goal of healing MS, both goals, are coming nearer, and at an accelerated pace. 
 
Meanwhile, we can be in charge of preparing our bodies for healing--and moving our bodies toward health.  We can choose to add foods that lower inflammation.  This is how diet helps us suppress symptoms.
 
Next week—how our diet plan can work toward re-myelation.
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Pain and stiffness--what we can do!

6/2/2016

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Don’t you hate getting pain and stiffness after you exercise?  
 
That happened to me when I took long walks in DC with my niece last month.  This matters to me.  Next year I want to walk a week on the Camino Santiago and that won’t happen if walking hurts.  

What to do?

The good news is that we CAN do something about it.

When this was clearly a problem for me, my first stop was Google, where I learned that  MS spasticity can take the form of stiff, pained joints.  I needed to counteract this.
  • First, I ordered tennis shoes which promised to end my knee soreness.  (They came, and immediately they worked!)
  • Second, I discovered the common wisdom to counteract MS spasticity—Stretch. 

Why do we need to stretch?  
For people with MS stiff soreness happens more easily and the first line of defense is stretching.   Why does this problem happen more to us?  Because of MS spasticity.  Spasticity contracts our muscles and after a while it hurts, makes us stiff. 

What causes spasticity
Our electrical signals are imbalanced.  This is a result of MS, and affects 80 percent of us (http://www.webmd.com/multiple-sclerosis/guide/controlling-muscle-spasms-multiple-sclerosis). 
 
Exercise when done right [stretch, rest] helps control spasticity (http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-Stretching-for-People-with-MS-An-Illustrated-Manual.pdf).

Stretching is a Major Treatment for MS Spasticity
MS spasticity is treated with a basic stretching program.  This counteracts contraction, which is what spasticity has done to our muscles (http://www.nytimes.com/ health/guides/disease/multiple-sclerosis/print.html).
Daily stretching of our muscles to their full length does two things
  1.  It helps us manage spasticity,
  2. It makes it possible to start moving without the tentative creeping that is the result of stiff and sore muscles.
 
Combining stretching and joint stabilization exercises can not only reverse the problem of spasticity, but also can improve our muscle ability (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3996406/).

Range of motion stretching One form of stretching is range of motion exercises.  That means moving our joint as far as we can.   Range of motion (ROM) is said to be considered the basis of fitness and it minimizes risk of injury when practiced regularly [my italics] (Petajan JH, White AT. Recommendations for physical activity in patients with multiple sclerosis. Sports Med. 1999;27(3):179–91. [PubMed]).

When should we stretch?
We should do light stretching, lasting 20 to 60 seconds, before and after exercise (White LJ, Dressendorfer RH. Exercise and multiple sclerosis. Sports Med. 2004;34(15):1077–100.[PubMed]).  
I’m recovering from a week of real pain in my knees, and stiffness, so I stretch in the morning and after I exercise.  It works. 

Unexpected results of exercise and movement: brain activity!
Here is great news about we who have MS.  When compared to other groups of people, our brain gets activated in a unique way when we move our muscles.  Why? 
Because of something called neuroplasticity.  Our brains are discovering how to create new pathways to recover lost functions (Cifelli A, Matthews PM. Cerebral plasticity in multiple sclerosis: insights from fMRI. Mult Scler.2002;8(3):193–9 [PubMed], Rocca MA, Falini A, Colombo B, Scotti G, Comi G, Filippi M,.Ann Neurol. 2002;51(3):330–9. [PubMed], http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3375103/). [Note—don’t feel left out if you don’t have MS, this plasticity is dormant in your brain and will kick in on an as-needed basis.]



How often should we stretch? 
As often as we get sore and stiff muscles (https://www.researchgate.net/
profile/ /Helen_Dawes/publication/5322125_The_Effects_of_Stretching_in_Spasticity_A Systematic_Review/links/09e4150741d30bb260000000.pdf, 
https://www.msaustralia.org.au/sites/default/files/spasticity.pdf)..

The great news is—we have ways of healing our own stiffness.  Stretching takes less than 2 minutes.   It feels good.  It works.
​
We can challenge spasticity, using that tried and true sports trainer method.  It's so easy!  Stretch!

[What else can we do?  Reduce inflammation--next week I want to look at studies that tell more about what we all suspected all along, that what we eat and when we eat can shift inflammation up or down--our choice!]
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    Author--
    ​Rosalie Richards

    MS keeps coming in stages.  The first 'maybe' diagnosis was in 2004, the next 'for sure' one came in 2011.

    I thought that was the end of the story, but life with MS keeps unfolding.  

    I'd enjoy reading your posts.

    If you like this blog, check out my books--
    Beyond MS  Your Best Life and 
    Beyond MS--Get Moving!

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