Today, we continue our three-part series based on questions you sent to ?interview? me about my MS. Monday we focused on my symptoms and how multiple sclerosis has affected me. Today we tackle the questions you asked about the way I cope with MS
As we did earlier in the week, within my answers I may link to one or more blogs that have covered some of these topics before. This is not a way of saying, ?We?ve already talked about that?. Rather, it?s to point to a resource where not only I, but our whole community may have weighed in with comments and strategies which you might find helpful.
Diet:
Trevis have you ever looked into a diet by Dr. Terry Wahls? She?s a woman with progressive MS who tried several therapies, but still became wheel chair bound. Frustrated, she decided to do her own research and developed a diet based on Paleo principles and in less than a year no longer needs a wheelchair as she improved significantly. Check out her website http://www.terrywhals.com and see what you think. Please note I?m not yet promoting this as I haven?t tried it long enough, but would love to achieve similar result. My MS is also progressive and I?ve used a scooter or chair for over 10 years.
Posted by Tom D
I have looked at Dr. Wahls diet, Tom. I am neither a nutritionist nor dietitian. I am, however, a chef who lives with MS so I do have a keen interest in food and how it might play a role in MS.
Have a look at the Caring Kitchen video on the media page of TrevisLGleason.com for a presentation by an RD who lives with MS. She talks about Dr Wahls? diet. In the one of the segments.
This is totally non Ms related, but what kind of a restaurant did you work in? As a chef, what were your favorite menu items to cook?
Posted by Maggie
I worked in many ?kinds? of operations, Maggie; Restaurants, Hotels, Bakeries, etc. I taught at university and culinary schools as well as running several schools. My passions are for textural experience that accompanies food ? along with exquisite flavors, of course! This may be very helpful as I?ve lost parts of my sense of taste to MS on more than one occasion. I love all foods and appreciate the way that so many cultures have taken the ?laws? of cooking ? if you will ? and use them with different ingredients.
Good Morning Trevis! I know I haven?t posted in a while, but I have been reading & trying to catch up on things as much as this insane life with MS will allow me to.
Are there any specific things you do with your diet or particular foods that you avoid or found that certain foods ?trigger? symptoms? I know I do & I find that when I veer off too often or by accident that I end up paying for it with being symptomatic or with a major flare.
Posted by Cris
I don?t know that I?ve heard before of any foods that trigger symptoms ? for me or for others. If, however, one were to find a food that seems to directly affect symptoms, I?d have to think it was an allergy or something and that the reaction was sympathetic. Check with your doc on that one, Cris
Trevis-I?m. Very interested in the whole picture of the new approach you wrote about a while back, regarding an holistic, more natural approach to managing your MS. Precisely: diet, exercise, supplements, any complementary therapies such as Tai Chi, yoga, meditation, psychotherapy, etc.
It goes without saying, that we understand that these things are your choice and you will be sharing YOUR way, rather than advocating anything.
Hugz, Rusty 
Posted by Rusty
Rusty, ?the road to hell is paved with good intentions? they say. Well, I?ve been a bricklayer of said intentions.
Three months of going away parties have not been kind to my plans. Once we?ve settled we intend to redouble our efforts as to diet, reduce stress (Ireland will help with that!) and to exercise more regularly.
Travis, You mentioned in your food video about LDL cholesterol and MS activity. My MS was very active this spring, nothing really new just more than what I usually have of the same old stuff, and when I had my physical in July my LDL was high just a little. The doctor said watch your diet, but no other meds or guidelines. I have been doing that the best I know, and MS has been better, but would like to get lower to see if that helps. What do you do to keep your cholesterol levels low? Any other diet tips?
Cindy D.
Posted by Cindy D
Cindy, a couple of teaspoons of oat bran on your morning yogurt and again over a salad or something in the evening will do you wonders! Cheers
I am curious about your MS diet. You mentioned getting off the MS drugs and instead focusing on diet, supplements, etc. Can you please provide more info on the new path you?ve chosen? Do you have ?trigger? foods? Do you exercise?
Posted by Melissa
Melissa, our intent is to stick to a low-fat, vegetarian diet for four or five days per week and to increase our intake of fish on the weekends. I?ll not forego the lovely lamb and beef here in Kerry, but we intend to limit our intake. That our butcher could tell us not only farm & famer, but even diet of the meat we?ll be eating, I feel very good about our diet plans going forward. As for the other parts of your question, please see the answers above.
Meds/Treatments:
I have so many questions that I might fill up the page, besides I can?t wait for your book to come out and I know that from it I will have answers to all my questions. For now I would like to hear about energy-boosting meds. If you use them and if you do, when did you tried first. I have problems with lack of energy, but I don?t know when I should take some.
Poste by Silvia
First, Silvia, my book deals with the living part of living with MS. I try to keep the disease to the role of a supporting character.
Provigil (and its new generic formula) have worked for me in the past but I call it The Loan Shark Drug as I have to pay back with interest.
Hi,Trevis- What do you do when you feel a flare starting up? My neuro told me Solumedrol hastens the recovery, but it could get better w/o. I have osteoporosis ( steroid related) from past drips. How do you decide when you?ve waited long enough? Also, what?s the treatment in Ireland? Is it the plasma exchange (Tcelna)?
Posted by SusanR
I know what you mean about the steroid ?issues?, SusanR. I?ve lost one hip to them already and the other one doesn?t look too good on x-ray films.
I?ve read studies that say that we?re in the same place one year after a flair whether or not we take ?the drip?. I can imagine a set of symptoms which would force me to consider taking another course, but let?s just say those symptoms are worst case scenario.
As to plasma plasmapheresis, that is not a front-line treatment in Ireland. They use many of the same meds that we use in the US I?m keeping my doc in Seattle and will, with the help of my dear wife, care for myself for the most part.
Trevis,
I was diagnosed with MS nearly 9 years ago. It has been labeled as Secondary Progressive after the initial and customary diagnosis of Remitting/Relapsing. It has impacted my right arm and leg. I am not on any treatments at the moment as what little is available; i.e. the walking pill seems to be worse than the disease. Recently, I have tried an electronic stimulation device on my leg. It was OK, but not exactly what I was hoping for. Have you ever tried this type of treatment or have any suggestions as to what else might help my deteriorating gait?Thank you!
Posted by Jim S
Jim, I?ve tested one of the walk aids you speak of. My drop-foot wasn?t really helped by it, though I know many who love theirs. I have recently been fitted with a great leg/foot brace made in Germany that I really like a lot!
Also, the use of a cane or walker can be more helpful for many reasons. One of which it that it slows me down enough to take the care in walking that I need to observe.
Are you familiar with the MS research and work of Dr. Zamboni, and what do you think of it?
Posted by Barbara
Barbara, I am quite familiar and the followers of the Zamboni treatment are quite familiar with me. I am a hopeful skeptic of the procedure and look forward to science playing out here.
Unfortunately, the most recent studies published do not look too good.
Can you share anyone?s experience with Tysabri and its after-effects specifically full body pain several days after an infusion lasting about 2 weeks and diminishing somewhat until the next infusion?
Many thanks!
Posted by Double MSmom
I am not aware of full-body pain with Tysabri. Being that I?ve never taken the drug, I have no experience with it. I do, however, know hundreds of people who take Tysabri and I?ve never heard of this symptom.
If anyone in the Life With MS community would like to chime in, I welcome that.
Our next blog will deal with Living and Loving with MS.
Wishing you and your family the best of health.
Cheers
Trevis
You can also follow me via our Life With MS Facebook page, on Twitter, and in our group on MS Connection.org. Also, check out our bi-monthly MS blog for the United Kingdom, look for our very special new monthly blog for the National MS Society, and don?t forget to check out TrevisLGleason.com.
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