Reaching Goals With Daily Decisions

The beginning of each year is a popular time for resolutions – eat better, lose weight, exercise regularly – you know the routine. Did you make any New Year’s resolutions?

I didn’t really make any resolutions, but I did decide to continue a new routine I started after Halloween, 13 weeks or 1/4 of a year ago. So here it is one month into the year and I’m already three months into new habits and working steadily towards some rather large goals that will take an unknown amount of time to accomplish.

I thought it would be cool to share some of my accomplishments since I started keeping track on November 1, 2014. During the past 13 weeks…

I have worn a Fitbit device everyday and used the app to record food and physical activity. According to Fitbit, I have taken 350,995 steps, climbed 534 floors, and walked 148.84 miles. That sounds pretty cool. But I was even more excited to figure out that I’ve ridden the exercise bike at home for a total of 43 hours and cycled for over 500 miles! Whoohoo! I’ve also gained muscle, increased flexibility, reduced spasticity, and lost 14.5 pounds in the process!!

I started riding the exercise bike to combat the pain of osteoarthritis (OA) in my knees. At first, I could literally only ride for about 5 minutes. Even this low level of activity would illicit increased spasticity in my legs. My orthopedic doctor is the one who suggested that I ride the bike. We learned in September that I have Grade 2/3 cartilage loss in my left knee. Grade 4 is the worst it gets before surgery is required. He says I will eventually need surgery.

By November, I was able to ride for 15-20 minutes without causing spasticity. Now I’m able to ride 45-50 minutes almost everyday at a speed of about 12-13 miles/hour. I also started physical therapy for my knee and have learned quite a bit about what I need to do to strengthen my leg muscles and maximize flexibility around my joints.

I had to relearn how to control the thigh muscle that lifts the knee cap. The first time my PT asked me to contract that particular muscle, I thought I was doing it, but absolutely nothing happened. There was a complete disconnect between my brain and that one muscle. As a result, my kneecap had become extraordinarily stiff and somewhat frozen in place. No wonder my knee was causing so much pain.

While working with my PT, I discovered that if I took a little bit more medication for spasticity, I experienced less knee pain at night. So an MS symptom, spasticity, was very likely making my OA pain worse. I had not connected the two in my mind.

It still amazes me sometimes how one health issue can sneak around and increase symptoms associated with a different health issue. It becomes rather complicated at times. Nothing occurs in a vacuum.


Read this post in its entirety:

Setting Goals: What Are You Doing Today?

Using FitBit to Motivate Behavior Change

What I quickly learned after wearing the device only a few short weeks was that there was NO WAY I was coming close to reaching the 10,000 steps/day that my doctor recommended. Absolutely, no way! Instead I was averaging closer to 2000 steps/day.

In isolation, that information didn’t motivate me to walk more. But then I realized that if I used the device regularly, I could use the information to improve and develop new habits. This may be one of the greater benefits of using tracking devices. In a recent JAMA article, authors state that the power of a wearable technology may not lie in driving health behavioral change, but in facilitating the development of new habits (Patel 2015).

At the end of the 3-week study, participants were allowed to keep the device and I continued to use it. But honestly I didn’t take advantage of all of the accompanying website and mobile application features until after I upgraded my smartphone in the fall. So on Halloween, I weighed myself, began recording everything I ate, documented exercise sessions, and established a weight loss goal in the application.

After some time, I could begin to see patterns in the data collected. I saw the effect of water retention following Rituxan infusions and Thanksgiving in November. I could visualize the impact of traveling on my exercise schedule. After two months, I could also see that weight loss was not as simple as exercising more, eating less, and creating a calorie deficit according to the FitBit data.


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Motivation, Wearable Technology, and Living with MS 

Focusing on Your Relationship

Multiple sclerosis is an obnoxious intruder that can invade a relationship and erode a couple’s sense of togetherness faster than you can see it coming. MS is unpredictable, from symptoms that fluctuate on a daily basis to fears of the unknown when looking toward the future.

MS often pushes the limits of our sense of normalcy while placing extra demands upon a marriage, partnership, or friendship. Dealing with the effects of MS may require a multitude of adjustments as each person, and couples together, begin to create a ‘new normal.’

While MS can come between two individuals within a relationship, it can also bring partners together. It’s important to remember, however, that MS doesn’t need to become the focus of the relationship. Here are four simple ways to strengthen the relationship and keep MS in its place.


Read this post in its entirety:
Maintaining a Strong Relationship Despite MS

12 FDA-Approved Treatments for Relapsing Multiple Sclerosis

As of February 2015, members of the relapsing MS community in the US may choose from twelve FDA-approved disease-modifying therapies (DMTs) to slow down the long-term progression of the disease by reducing relapses, number of lesions, and accumulation of physical disability.

Many of the DMTs detailed below are prescribed for people with relapsing forms of MS, including relapsing-remitting MS, as well as secondary-progressive MS and progressive-relapsing MS in those people still having relapses. Select DMTs have also been approved to delay a second exacerbation in people who have been diagnosed with clinically isolated syndrome (CIS).

So far, no DMTs have proven to be effective in progressive forms of MS without relapses.

Oral therapies:

• Aubagio (teriflunomide, 7 mg and 14 mg; pyrimidine synthesis inhibitor) is taken once daily by mouth for relapsing forms of MS; approved in 2012. Sanofi-Genzyme: aubagio.com, msonetoone.com
• Gilenya (fingolimod, 0.5 mg; sphingosine 1-phosphate receptor modulator) is taken once every day by mouth for relapsing forms of MS; approved in 2010. Novartis: gilenya.com
• Tecfidera (dimethyl fumarate, 240 mg; Nrf2 activator) is taken twice daily by mouth for relapsing forms of MS; approved in 2013. Biogen Idec: tecfidera.com, msactivesource.com

Injectable therapies:

• Copaxone (glatiramer acetate, 20 mg/mL and 40 mg/mL; synthetic polypeptide) is taken by subcutaneous injection every day (20 mg dose) or three days each week (40 mg dose) for CIS and relapsing forms of MS; approved in 1996; auto-injector available. (Generic options may become available soon.) Teva Neuroscience: copaxone.com, sharedsolutions.com
• Avonex (interferon beta-1a, 30 mcg/.5 mL) is taken once weekly by intramuscular injection for CIS and relapsing forms of MS; approved in 1996; auto-injector and dose titration available. Biogen Idec: avonex.com, msactivesource.com
• Betaseron (interferon beta-1b, 0.25 mg/mL) is taken every other day by subcutaneous injection for CIS and relapsing forms of MS; approved in 1993. Solution must be mixed before injection. Bayer HealthCare: betaseron.com
• Extavia (interferon beta-1b, 0.25 mg/mL) is taken every other day by subcutaneous injection for CIS and relapsing forms of MS; approved in 2009. Solution must be mixed before injection; dose titration available. Novartis: extavia.com
• Plegridy (peginterferon beta-1a, 0.125 mg/.5 mL) is taken every 14 days by subcutaneous injection for relapsing forms of MS; approved in 2014; auto-injector available. Biogen Idec: plegridy.com, msactivesource.com
• Rebif (interferon beta-1a, 22 mcg/.5 mL and 44 mcg/.5 mL) is taken three days each week by subcutaneous injection for relapsing forms of MS: approved in 2002; auto-injector and dose titration pack available. EMD Serono/Pfizer: rebif.com, mslifelines.com

Infusion therapies:

• Lemtrada (alemtuzumab, 12 mg; CD52 monoclonal antibody) is delivered by intravenous infusion on five consecutive days, followed by another three consecutive days one year later, for relapsing forms of MS and generally reserved for people with MS who have failed other treatments; approved in 2014. Sanofi-Genzyme: lemtrada.com
• Novantrone (mitoxantrone, 140 mg; antineoplastic anthracenedione) is delivered by intravenous infusion once every 3 months with a lifetime maximum limit of 8-12 doses over 2-3 years for worsening relapsing-remitting MS, progressive-relapsing MS, or secondary-progressive MS; approved in 2000. Available as generic drug since 2006. EMD Serono/Immunex Corp.
• Tysabri (natalizumab, 300 mg; α4β1-integrin monoclonal antibody) is delivered by intravenous infusion once every four weeks at a registered infusion center for relapsing forms of MS; approved in 2006. Must not be combined with other disease-modifying therapies. Biogen Idec: tysabri.com, msactivesource.com

If one DMT doesn’t work for you, or is intolerable, discuss other options with your neurologist.

Republished from:
MS Patients Have 12 Disease-Modifying Therapeutic Choices

The MS Comorbidities Project (2015)

Highlights of MS Comorbidity Review published in January 2015

The five most prevalent disorders occurring with MS were depression, anxiety, high blood pressure, high cholesterol, and chronic lung disease.

• Autoimmune disease: Based on population-based studies, the most prevalent autoimmune comorbidities were psoriasis (7.74%) and thyroid disease (6.44%). Researchers failed to detect an overall, non-specific increase in the risk of comorbid autoimmune disease with MS; however, they did find an increased risk of inflammatory bowel disease, uveitis and possibly pemphigoid. Findings were inconsistent for other conditions such as type I diabetes, systemic lupus erythematosus, and rheumatoid arthritis.

• Cancer: Cervical, breast, and digestive cancers had the highest incidence in population-based studies of MS. The risk of meningiomas and urinary system cancers appeared higher than expected, while the risks of pancreatic, ovarian, prostate and testicular cancer were lower than expected, when comparing the MS population to the general population.

• Cardiovascular disease: The prevalence of hypertension (high blood pressure) and hyperlipidemia (high cholesterol) exceeded 10% in the MS population and increased with age. Although the rates of ischemic heart disease, congestive heart failure, and stroke were less than 5% overall, these conditions occurred more frequently than expected. Cardiac valvular disease, however, affected the MS population less often than expected.

• Gastrointestinal, musculoskeletal, ocular, pulmonary, and renal disorders: Irritable bowel syndrome and chronic lung disease occur in more than 10% of the MS population. Each of these conditions along with arthritis, fibromyalgia, cataracts and glaucoma were more common than expected.

• Mental health: This review confirms that psychiatric comorbidity is common in people living with MS, particularly depression and anxiety, each of which affect more than 22% of the MS population. Depression, anxiety, and bipolar disorder occur more often in the MS population than the general population.

• Sleep and seizure disorders: Researchers found that seizures disorders occur more often in the MS population with incidence and prevalence rates of 2.28% and 3.09%, respectively. The most studied sleep disorder, restless legs syndrome, occurs in up to 57.5% of the MS population, while obstructive sleep apnea affects 7-58%. Narcolepsy was much less prevalent occurring in 0-1.6% of the MS population based on one study.

Read this post in its entirety:
Do You Have an MS Comorbidity?

MS Relapses are Unpredictable and Unique

Multiple sclerosis is unpredictable.

Have you even wondered how long a relapse or flare up of MS symptoms would last? I have. When you are in the middle of a relapse, you want it to be over with as soon as possible (similar to how I feel about the possibility of an extended winter). But if you ask your doctor, or your friends, how much longer will I experience these symptoms, you will likely receive as many conflicting answers as were given by the various weather prognosticating groundhogs around the country this morning.

Multiple sclerosis is unique to each individual.

With each relapse I’ve experienced over the years, I have learned a bit more about how my body reacts to this disease. Each relapse has been different, while there may have been some similarities. Sometimes, the new or increased symptoms have continued for months despite steroid treatments (such as when I first had optic neuritis and was temporarily blind for almost three months). On other occasions, symptoms of a relapse were so mild that I was well into the event before realizing it and skipped steroid treatment at all because things were already getting better.

How long does an MS relapse last?

Read this post in its entirety:
How is MS Like Groundhog Day Predictions?