Keeping Up with Weight Loss and Exercise Goals with MS

Staying motivated while making lifestyle changes can be challenging. How many times have you started an exercise or diet program just to fizzle out in enthusiasm after a month or two?

In February I shared with you how wearable technology, such as a FitBit device, can help to provide motivation to make lifestyle changes. I began wearing a FitBit last summer, but it wasn’t until November that I began making a concerted effort to exercise more, taking advantage of the Airdyne exercise bike in my basement.

Throughout December and January, I attended twice weekly physical therapy sessions to work on strength and range of motion with the goals to improve physical function and reduce the pain I was experiencing from knee osteoarthritis.

When I reported my progress in February, I had lost 19.5 pounds. Here it is 28 weeks from when I started keeping track of food consumption and exercise, and I have now lost 34 pounds. Whoohoo!

Update: It has now been 32 weeks and I've dropped 40 pounds!

Read this post in its entirety:

Weight Loss and Exercise: Staying on Track with MS

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.


Read this post in its entirety:
Motivation, Wearable Technology, and Living with MS 

Writing as Advocacy

Becoming an advocate is easier than you might think.  It can be as simple as using your words or actions to demonstrate support for a particular cause, ideology, or group of people.  Advocates often educate and inform, make recommendations, and support, defend, or plead on behalf of others.

At the heart of advocacy is a desire to influence thoughts, behavior, and policy.  Skilled advocates are able to motivate others to take a desired action.  They can also help to dispel myths and fight stigma, both of which are important for the chronic illness community.  To be an advocate, you don’t have to be an expert in public policy or become a motivational speaker.  You just need to be willing to speak out.

The most successful advocates become masters of persuasion.  They use opinion, fact, and convincing arguments to change behavior and mindsets, influence public policy, educate people, and build support for specific ideas.  Writing can be an effective tool for advocacy, but it is important to make sure that your message will grab the reader’s attention.

Who are you writing for?
Identify who you are trying to persuade or inform.  Consider their values, needs, and perspective.  What questions or objections will they have to your call to action?  What is their experience and do they share your perspective and concerns?  Once you know your audience, you can tailor your message accordingly.

If you’re advocating for better understanding of the issues related to living with RA and your target audience includes people living with RA, friends or family members, or healthcare professionals, you may not need to include detailed explanations of the disease.  But members of the general public, government officials, newspapers or magazines may need more background or supportive information to provide context and significance for your appeal.

After you know who you are writing for, it is important to make sure that they read what you have written.  And if they read it, will they understand it? And if they understand it, will they do what you want them to do?

Read this post in its entirety:

Advocacy: The Power of Words to Motivate Action

Carnival of MS Bloggers #66

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Motivation, Exercise, and Advocacy

Maybe it's Just One of Those Days
by Webster

I am feeling rather depressed today. My PT, Shannon, pointed out some truths to me about my "lack of compliance" with my exercise routine. She sees right through me. She's good. And she isn't even a specialist with MS! Still, she certainly hit on my buttons, in a very kindly way, as we discussed the ebbs and flows that is MS.

Why am I not doing my home exercises? I don't know. Because I don't believe that they will keep me from getting worse, I guess. In my heart of hearts I feel it is inevitable - getting worse. I have seen it - too much of it - it will happen to me, too. And I guess I feel that there's not anything I can do that will change that. So, I don't bother. I started out with high hopes, and I was getting stronger. . . THEN, I got that damned sinus infection which pretty much put me back where I was. I guess I'm feeling, "What's the point?"

Of course, I know that  if I continue the way I have been - not doing much of anything - I WILL get worse. So then, if I do the work, and don't get better, perhaps I'll just stay the same. Like treading water: sometimes it takes a lot of effort just to stay afloat.

So, I've been feeling a little blue today, just shy of crying. Thinking about what I have to do to change my thinking. Oh- and I have been taking Ampyra for five days now, and have not noticed a difference. There's that, too.

And then I read this, which leads to thoughts of the BP oil washing up on the once pristine beaches of Florida, and Louisiana, and these thoughts do nothing to make me feel better about my situation, at all, but just seems to be a swirl of negativity circling the drain.

I didn't get enough sleep last night; I woke up  feeling like crap. But I went to PT and I walked in water for 25 minutes, and the treadmill somehow pushed the speed up a notch to a six, when Shannon set it at a five, so it was no wonder I was feeling the difference.

Anyway, we made a plan. Do one thing: the Roll for Control. Every day. It takes, what?, five minutes? Then throughout the day do little things like standing balance exercises, or pulls with the TheraBand, or seated marching during commercials. But those things are all extra. The Roll for Control is what I must do  every day, without fail.

I'm going to go to bed. Tomorrow has to be a better day.

Good Night, TTYL, and Be Well,
Webster

New MS Device to Rehab My Swollen Feet
by Diane Standiford

Always trying something new---this cheap, plastic device (that probably made someone millions) lets your feet simulate walking, while you are seated. It will keep the blood circulating, lightweight, sounds super! I don't have the foot strength or calf strength to move the left one. I had hoped it would have a teeter-totter effect...but, no.

And off I head in search of the next affordable device to help my MS.

Awesome advocacy experiences
by Dan Digmann

Jennifer and I, along with her care coordinator Rochel Genge, R.N. and others from Region VII Area Agency on Aging, interacted with many elected state officials at the third annual Older Michiganians Day in Lansing on June 10.

Self portrait of Jennifer & me getting political at the Capitol

Jennifer & Rochel after our chance meeting with Rep. Caul

We even have photographic proof that we advocated for the MI Choice Medicaid Waiver Program through impromptu conversations with influential legislators Sen. John Gleason, Sen. Deb Cherry and Sen. Roger Kahn on the lawn in front of Michigan’s State Capitol Building. While we have met Sen. Cherry and Sen. Kahn before (see related post here), this was the first time we met Sen. Gleason.

Jennifer followed up with Sen. Gleason after he spoke to the more than 600 OMD participants to thank him for supporting the Waiver program.

But we forever will get giddy when we think and talk about our chance meeting for which we have no picture. No picture because we never expected to run into our State Rep. Bill Caul in the House Office Building hallway as he was rushing to get to a meeting in the Capitol Building across the street .

Sure, we were on our way up to his office to remind him of MI Choice Waiver Program and how it saves the state millions of dollars and how it is making it possible for Jennifer—one of his constituents—to continue living in her own home and positively contributing to her community. But as we made our way to get in line for the elevator, Rep. Caul made his way around the hallway corner and I whispered to Jennifer, “That’s Bill Caul right there!”

Jennifer made a split-second pause to increase the speed of her power wheelchair and, without saying a word to me, sternly rolled forward and called out, “Excuse me, Representative Caul?”

The noticeably tall representative who has served our district since 2004 stopped, looked down at Jennifer and smiled. “I don’t know if you remember me, but we’ve been down here before to advocate for the MI Choice Waiver Program that provides the services for me to continue living in my own home …” Rep. Caul was shaking his head and kindly cut Jennifer off.

“Of course I remember you,” he said with a smile.

Perhaps he says this to all his constituents but we’ve never felt someone, especially a politician, offer such a genuine confirmation that he knew who we were. They say pictures are worth a thousand words, and I’m wondering if the reason we have no picture of our meeting with Rep. Caul is because a thousand words wouldn’t be enough to describe this moment.

Knowing he had to get going, Jennifer told him we would leave some MI Choice information in his office. While he needed to get going, Rep. Caul stood there for a few more seconds to thank us for coming and for what we do to advocate for the needs of Michigan’s elderly and disabled citizens.

He shook our hands and then made it to his session a few minutes late, all because he took the time to listen to what we had to say.

We came home feeling so empowered and excited about the work we had done that day.

A powerful meeting: Jennifer with Sen. Cherry, who spoke about the power of advocacy

But it not only was for the work we had done to help ourselves, it was knowing our efforts also helped the people who weren’t able to be there to speak for themselves.

We always tell members of our MS self-help group they should be their own best advocates, and we encourage you to do the same.

Our fifth time we've met with Sen. Kahn to talk about the MI Choice Waiver Program

Find your passion and be a voice to make things better for yourself and for others like you. For example, if advocating for the needs of people living with M.S. is your passion, a great place to start is registering for the National MS Society’s Action Alert to receive news and information about M.S. advocacy news and legislative issues.

To borrow the line our respected fellow blogger Michael Gerber uses to conclude each of his posts at Perspective is Everything: “Participate. Make a difference. Live a life that matters.”

This concludes the 66th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 15, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 13, 2010.

Thank you.

Comments for this post.

Carnival of MS Bloggers #34 - Expressions

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

"No words to express....."

Disintegrating
by Mon Voyage, Ma Chrysalide

dis-in-tə-grāt = To become reduced to components, fragments, or particles.

I have undoubtedly avoided writing about my Multiple Sclerosis for the past year. It makes me sad. I feel like writing about it makes it real and THAT makes me sad. Truthfully though, just living with it makes me sad. Not every day but often enough to be a thing I want to avoid. There are other things more putrid that I would rather do lately than discuss, talk or write about than what MS is doing to my body.

I need to start by stating that I felt compelled for the first time this year to fundraise for the MS Walk. Compelled because I began to feel a new sense of urgency I never felt before and it was brought on by a very upsetting new change in the landscape of my young body caused by…MS. First it was my left foot that started to look strange. Later it was confirmed by the Physical Therapist that I had atrophy of my left leg, ankle, foot and toes. Followed by a month ago, when I noticed after I got out of the shower that I had a massive dent in my upper thigh/hip area. I was informed that this is also an area of atrophy caused by MS.  

Informed. No one even attempted to soften the blow to my youthful and appropriate vanity. No, “I’m sorry, this is what MS does.” Just: “Yup, it’s the same as your foot.” So, god only knows if I will wake up tomorrow with another gap in my muscle on that leg. I hate MS.
There are no words to express how I feel about what MS is doing to my body. I have been struggling with another MS related change. My left foot no longer stays flat when I walk due to spasticity. I just tried out my custom fit AFO for the first time and although it needs some adjustments, it does help to keep my foot flat. The problem I have with it is that it makes wearing shoes impossible. Will I ever wear the thing? Probably not. It’s bulky, and due to my Dysautonomia I can’t walk that far anyway.

It is difficult to explain to people what it’s like to be almost 34 years old and not be able to walk with a normal gait, if at all. Or to be steadily losing your vision. Or to watch your young body be slowly disfigured by a disease you can’t understand and you can barely even pronounce.

I try to stay positive and most of the time, I am told by people that I am positive but somedays the effects of this disease on my life and body are hard to ignore. I truly hope in my lifetime they find a cure or something close to it.

I have been torn lately about how to confront my MS and I have some important choices to make this week. I have been off Tysabri since July 2008, taking my time to choose which disease modifying drug to go on. I realize I have taken too long because I have had a few small flare ups. I am thankful they have been nothing serious. Next week I see my Neurologist and I may choose Avonex. I am apprehensive about it because I had a bad reaction to Betaseron and they are so similar. I wish there was a better answer to treatment.
Time to choose…

MS'er Faith says
Here's to you...

This Thursday and Friday marked the end of my ski season (in a different way--keep reading), where I did improve (and hopefully will improve next year too!) By being up in the mountains, I missed the front range blizzard in Colorado.

A week or 2 ago I got a message from the old sprint coach at my high school, who I also felt gave me some pointers, was a motivator, and is one of the most beautiful people I will ever have the privilege of meeting and having as a motivator when I was in high school. I exchanged the usual how are you when she contacted me, and the surprising answer was she was not so good. While I have MS, she now has been diagnosed with ALS, or Lou Gehrig's disease.

So I have been thinking a lot about her--some anger, sadness, tears, etc. The thing I will never forget about her was what she told me after I finished 2nd in a 2 mile track race, at a big meet where I was really supposed to finish 5th or 6th. I don't remember what anyone else told me after that race, but I remember her taking the time to take me aside and tell me that I could have won that race. And I knew it. I'll never forget that.

This Thur and Fri her words from way back in high school continued to go through my head. I got to a point on the slope that I always somewhat miss and all of a sudden I heard in my head, "Beth, you could have won that race." With that, I sat up, leaned as I should, and nailed that point on the slope, and then never missed it the rest of the 2 days. There were other points too where her words came into play, and it made the 2 days of skiing more meaningful and more memorable.

Here's to you, Coach. This race I did win! And then I smiled one of my biggest smiles, ever!

Lazy Julie is Whining my way to a grateful heart...

Instead of sharing how I worked my way through my process to get to a place of humor, perspective, and gratitude, I thought I would share the mucky part before that and see if it makes me feel any better.

I am at the MS Center getting my monthly solumedrol drip, except I had to wait a half hour after the start of my appointment since I missed my March appointment. I am being punished for my non-compliance even though I am here which means I am trying to be compliant. Too late. I'm in the slot and there I will stay.

My feet are still numb and cold and even though I left a message for the neurologist yesterday, I have yet to receive a call back. And even though I am actually present in her office, she has yet to come by to see me and respond to my message about the numb feet. More punishment? I'll show her. She misses the solumedrol and her feet get numb, let her suffer because she deserves it. She brought it on herself.

I am alone. Lots of people are here alone but there are also people who have loved ones with them. It's probably 75% alone and 25% with people. So why I comparing myself to the minority and feeling bad?

The woman who is getting an infusion in the next pot just went to the bathroom. Her husband lifted her from the recliner into her wheelchair and then took her into the bathroom. I'm assuming he had to pull down her pants, put her on the toilet and either empty her cath bag (is there such a thing) or wipe her after she went to the bathroom. Who, exactly, would do that for me? Not that I want to be in a position to be having ANYONE take me to the bathroom but, God forbid, who will take me?

I am feeling like I have no loved ones that love me THAT MUCH. I am filled with self-pity and devoid of all gratitude. I am missing my dad and started crying when the nurse asked me why I missed the March appointment. I am missing that he was a person related to me who gave a shit and who I could count on no matter what. He would never let me be homeless. But I am not homeless. I have a job and a home and a refrigerator full of food.

I am missing Ken, too, not just as my boyfriend but HIM in particular. I am missing his eyes and his voice and his kindness and his hands and his love and his body. I'm not sure why I am missing him here and now. He never came to solmedrol drip appointments with me at this place. He probably would have tried to come if I asked but he never, ever would have offered on his own. Maybe I'm missing who I wish he could have been for me. In our relationship, he gave me a lot but he could not or didn't want to give me his whole self and his whole heart as a life partner. I am missing what he NEVER could give me. But then again, I hate when people feel sorry for me and cling to my independence at all costs so why am I craving that kind of support?

I am tired and want to fall asleep but I'm supposed to be working which I'm not doing anyway, so I should probably stop whining and either do some work or shut my eyes. I keep switching screens from this one to work email and feeling resentful about that.

I am, in short, not in a good place. I am sad, mad, scared, and, generally pathetic. I know that this too will pass. I know that because I am sharing my feelings, they will be halved I will get relief from the poison in my brain.

A woman just came in with a three-month old baby and I feel better looking at his peaceful face asleep in the stroller. Thank God.

I am not asking for help and I should be. I just closed my eyes and asked but I was not hit by a bolt of spiritual lightning.


This concludes the 34th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 7, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 5, 2009.

Thank you.

Comments for this post.