Monthly Archives: August 2016

Volunteers wanted for MS diet study

People with MS often wonder if their MS is affected by what they eat.  Articles about the reported benefits of various diets appear regularly.

Now, researchers at the University of Iowa are going to study two of the most well know MS diets to see what impact they have on MS symptoms, specifically on the level of a patient’s MS-related fatigue.

Both MS Diets Eliminate Meat

The diets to be studied are the Wahls Elimination diet and the Swank diet. The Wahls Elimination diet excludes all grains, legumes (such as peas, beans, lentils and peanuts), dairy, eggs, and nightshade vegetables (such as eggplant, peppers, potatoes and tomatoes). Swank is a low saturated fat diet that eliminates red meat but includes whole grains and low fat dairy. Both diets include certain vegetables, fruits and dietary supplements.

Study investigators will be recruiting 100 people with relapsing-remitting MS who experience fatigue.  The clinical trial will last 36 weeks. Participants will follow their usual diet for 12 weeks and then be randomly assigned to follow a low saturated fat diet (Swank diet) or a modified Paleolithic diet (Wahls diet), for the next 24 weeks. Their health and activities will be extensively monitored during the study. The study requires 4 visits to the University of Iowa Hospitals and Clinics in Iowa City, Iowa. Reimbursement will be provided for some aspects of the study.

Individuals interested in being considered for enrollment in this study should complete screening questionnaires at: https://redcap.icts.uiowa.edu/redcap/surveys/ and use code:  JMJPYEJHP.  For questions, email: MSDietStudy@healthcare.uiowa.edu or call 319-384-5053.

Wahls and Swank

Terry Wahls, MD created the Wahls Protocol diet after being diagnosed with MS and progressing to the point where she began using a wheelchair. She’s spent more than a decade studying the origins of certain foods and vitamins and their effects on the body. Whals tells the University of Iowa web site that, after following her own diet, “In three months the fatigue was gone. In six months I was walking without a cane, and after nine months, I was biking around the block. A year after I started, I did a 20-mile bike ride.”

Roy Swank, MD, PhD, began studying MS in 1948 and created the low saturated fat Swank Diet around 1950 after he observed a higher incidence of MS in geographic areas that ate meat, milk, eggs, and cheese – foods that are high in saturated fat — and a lower incidence in areas that ate fish.  He spent more than 50 years recommending this diet to his patients and monitoring their health.

Both diets have been shown to have a positive impact on patients with multiple sclerosis.

The National Multiple Sclerosis Society in the U.S. has granted $1 million to Dr. Whals, at the University of Iowa, for this clinical study.

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Copaxon MS drug approved for tri-weekly use in Canada

It’s no fun jabbing yourself once-a-day if you’re using the multiple sclerosis drug Copaxone.  I, eventually, hit a brick wall self-injecting when I was using Avonex and that was just sticking myself once-a-week.

But now Teva Pharmaceutical has what should be good news for Canadians using Copaxone.  Health Canada has approved a three-times-a-week version of the drug. Three-times-a-week Copaxome 40 mg/mL is expected to become available to patients there, by prescription, later this fall.

Teva Pharmaceutical says Copaxone 40mg.mL is indicated for the treatment of patients with relapsing remitting multiple sclerosis (RRMS). It’s injected subcutaneously and those injections should be spaced at least 48 hours apart.

In addition to the newly approved dose, daily Copaxone 20 mg/mL will continue to be available.

Tri-weekly Copaxone already available in U.S. and Europe

Three-times-a-week Copaxone was approved by the U.S. Food and Drug Administration in January, 2014.  Teva Pharmaceuticals says as of last June about 61,500 MS patients were using the drug in the U.S. In Europe, the MHRA and other EU member states issued a positive assessment report under the decentralized procedure in December 2014, and since launch, three-times-a-week Copaxone has been prescribed to more than 36,000 patients.

The Health Canada approval was based primarily on data from a Phase III study, which was the largest Copaxone clinical trial to date.  It included more than 1,400 patients.

Many different MS drugs available for injection

Copaxone is one of several disease modifying drugs available to treat Multiple Sclerosis.  Others, approved for use in the Unite States and listed on the National MS Society’s web site, include:

That web site also includes an excellent list of all of the drugs approved for treating Multiple Sclerosis exacerbations and managing MS symptoms.

Don’t let multiple sclerosis ground you

(This post appeared as my regular column on http://www.multiplesclerosisnewstoday.com)

Flight is freedom in its purest form,
To dance with the clouds which follow a storm;

To roll and glide, to wheel and spin,
To feel the joy that swells within;

To leave the earth with its troubles and fly,
And know the warmth of a clear spring sky

— Gary Claud Stokor

I’ve been there.  I’ve done that.  I’ve climbed out into a sunrise and have felt the freedom of flight.

I earned my private pilot’s license in the late 1970s, a few years before I was diagnosed with multiple sclerosis.  I haven’t flown in a long time, though, because I quickly learned that I couldn’t fly frequently enough to stay sharp enough to stay safe.  But I’ve never lost the love of flying.  And my eyes turn skyward every time I hear a light aircraft pass overhead.

So, I was very interested to read an article on The Telegraph (U.K.) web site about eleven disabled people in the U.K.who have recently learned to fly.  They all received no-cost lessons that were sponsored by a U.K. group called Flying Scholarships for Disabled People.  Since 1983 more than 400 people have taken flying lessons from FSDP.  Most of them have flown solo, or solo with an instructor, by the end of the program.  Some have even continued on to get their private pilot’s “ticket.”  And, yes, some of those students had MS.

Another organization in the U.K. that puts disabled folks in the pilot’s seat is Aerobility.  Like FSDP, it provides lessons at no cost and is run by volunteers. Similar organizations exist elsewhere.  Among them, Able Flight in the U.S. and Wheelies with Wings in Australia.

Medical certification is required for a pilot’s license no matter what the country.  Here in the U.S., a diagnosis of MS means an extra neuropsychological evaluation, adding an extra hurdle over which to jump.  But, it can be done.

Dierdre Dacey diagnosed with Multiple Sclerosis at age 16 and by the time she was in college, she had to begin using a wheelchair. Through the Able Flight program she earned her Sport Pilot’s License.  Her words on the Able Flight web site, should give you all the encouragement you need:

“Able Flight has changed my life.  I always wanted to fly but was told it would never happen. Able Flight took me out of that box and told me to go fly and be free. Even though it was completely new to me and I had had no former experience, everyone was supportive and positive and certain I would be able to do this…and I did! I will never be able to say, “Thank You!” enough!”

 

 

 

 

 

 

 

 

 

 

“Shame on you for parking there!”

[This is an updated version of a post that first appeared in my weekly column on www.multiplesclerosisnewstoday.com]

 

Do you remember when you first applied for a handicapped license plate?

I put it off for quite a while after I was diagnosed.  After all, I could easily walk several city blocks.  I could still play tennis.  Why did I need to park in a handicapped place?  But, there were days when I did.  I needed that privilege when it was hot.  I needed it when I was extra tired.

The thing is, as many of you know well, I didn’t look like I was dragging.  I didn’t look like someone with a handicap. That’s the problem that Aneta Prantera, who has MS and lives in St. Catharines, Ontario, recently faced.

Aneta is 29 years old and was diagnosed about four years ago after she lost the viHC permit noteson in one of her eyes.  She’s an example of someone who looks healthy but who needs to use her handicapped parking permit on those tough days that we all have.  That’s what she did, not long ago, in the parking lot of a large shopping center.  When Anita returned to her car she found an angry note on its windshield.  “A handicap permit is meant for handicap Only!  You are not handicap.  You should be assamed (sic) of yourself for taking a handicap spot simply because you are Lazy.  Shame – shame.”

Aneta told the St. Catherine’s Standard: “There’s always a comment. There’s always something under someone’s breath. I shake it off when I hear it, but to come out to a letter on my car like that, I was taken back and in shock that people are that ignorant.”  In tears, Aneta called her sister to tell her about what happened.

It all might have ended with that call.  Another “shake-off” of another person who just doesn’t get it that some disabilities aren’t obvious.  But Aneta’s sister Christina wouldn’t let it go.  She posted a photo of the note on Facebook, along with this comment:

“I don’t usually make posts like this one but felt the need to share and hopefully educate this person or anyone else how feels the need to not mind their own business. This afternoon around 3pm my sister Aneta Prantera called Jada Melia and I very upset (crying and shaking to be honest) some extremely ignorant uneducated person decided it was their duty to leave this horrible msg for her on her car in the pen centre parking lot. As many of you know my sister was diagnosed at a very young age with multiple sclerosis. This chronic progressive disease is a daily struggle for her and the last thing she needs to be dealing with is being upset or feeling ashamed because she needs to park close to the entrance. Instead of taking the time to write this hurtful hateful note you need to spend more time educating yourself. Luckly she will get over this and move forward with her fight against this terrible disease that takes over too many young women’s (and peoples lives) but how disgusting of you to belittle someone else when you have no clue what they are struggling with. SHAME SHAME you say…. Shame on you!!!! I don’t know how you sleep at night. Please help me out and share this post so that maybe it can help educate people so that this type of nonsense doesn’t go on anymore.”

Christina’s post was shared more than 2,500 times in less than a week.  She told the Standard “I wanted people to understand that this isn’t acceptable. Something that was really bad and negative … turned extremely positive. By the end of the day (Aneta) was so overjoyed by the response that she got.”

Bravo, Christina!  But, here’s the thing.  The person who wrote the note, as nasty as it was, may have truly believed that Aneta had no handicap.  He or she may have a relative with a disability, or may even be disabled…but with no understanding that some disabilities, like MS, can have symptoms that aren’t evident to someone watching.

The question is, how can we educate people about the sometimes invisible symptoms that many of us carry?

Since my column was published last Monday I’ve received a few suggestions.  Several people thought that it would help if we used our h/c tags only when it’s really necessary.  Frankly, I think that most of us are already doing that.  Another person thought that using a cane when walking from your parked car might help make your invisible handicap visible.  Well, yes.  I sometimes did that before I really needed to use one.

A really great suggestion came from a woman named Deborah.  She thought that it would be a good idea to print a pamphlet that could be handed to someone who challenges your use of a handicapped tag.  The text inside might explain things that we all know about MS but that the average person doesn’t, including why you can’t always see our symptoms. I suggested that she title it: “Why I May Not Look Disabled.”  I think she’s going to propose this to the National MS Society in the U.S.  I hope she does and that the Society picks up the ball and runs (faster than most of us can) with it.

 

 

Exercise for MS – I’m starting a 14 week plan

I’m about to start a new adventure:  Exercise.

Well, it’s not really new. I swim some laps most days in the summer, weather permitting.  In the cooler months I do some upper body strength exercises a couple of days a week, my spirit permitting.  But, in all the years that I’ve had Multiple Sclerosis I’ve never really had a structured exercise program.  Today I’m investigating a way to start down that road.

Browsing the National MS Society’s web site last week I found a link to an organization that I’d never heard of; the National Center on Health, Physical Activity and Disability and the NHPAD’s “14 Week Program to a Healthier You.”  The program promises to set me up with a free, personalized, web-based physical activity and nutrition program with a goal of encouraging me to exercise and to make health nutrition choices.

Getting started with a plan

I registered on the web site Saturday and signing on this morning I saw a bunch of exercise video exercises waiting for me.  They’re separated under tabs for “cardio,” “strength,” “flexibility” and “mind/body,” plus a 5 minute daily warmup.  I’m particularly interested in improving my lower body flexibility so I’ll be checking that out first.

The NHPAD is all about getting you moving

The NHPAD has been around since 1999.  Its mission, according to its web site, is to “help people with disability and other chronic health conditions achieve health benefits through increased participation in all types of physical and social activities, including fitness and aquatic activities, recreational and sports programs, adaptive equipment usage, and more.”

It took a bit of research to find out who’s behind this group but it turns out to be a collaboration between the School of Health Professions at the University of Alabama in Birmingham and the Lakeshore Foundation; a Birmingham, Alabama based non-profit that provides fitness and recreation programs to people with all sorts of physical disabilities programs.

So, off I go.  Hope I can stick with this.  I’ll keep you posted.  Stay tuned.