I've gotten word this week that three - count 'em 3! - friends have been diagnosed with cancer. One, diagnosed with lymphoma, is awaiting a more accurate diagnosis and treatment plan. One had successful surgery. And, one can't get an appointment with the recommended Johns Hopkins surgeon until January 20.
All the love and support we can offer go out to these three and their amazing families! It's hard to see their lives turn on a dime like this. We stand with you to support you and offer whatever meager offerings we can. I think of the Christmas story of the little drummer boy - he gave what he had, his talent to make music.
Even if we lack money and means, let us offer one another support, encouragement, love and security as we wrestle our mortal bodies. Let us stand, side by side, offering what we have to lift up each other during the Christmas Season!
Thursday, December 10, 2015
Wednesday, December 2, 2015
Strength and Balance
Sorry to hit a common topic AGAIN, but lack of balance and MS go together like... well, like, ruffled birds of a feather... or something.
I make exercise decisions based on the assumption (which I hope is fact), that if I:
I make exercise decisions based on the assumption (which I hope is fact), that if I:
- practice balancing, and
- strengthen the muscles that aid balance
I will improve my balance (at best) or maintain my current level of balance (acceptable) or slow down the deterioration of my balance (at least).
I had to demonstrate an exercise today (yes, in front of athletes) that required more natural balance than I currently have. PUNT and skip the exercise or the demonstration? No way! I calmly asked for a supportive hand while I demonstrated the important technique of the exercise. No one cares if I need that hand for some centering. I used my strength to go through the full range of motion and was able to do a fair number of repetitions.
Point: Don't let the lack of balance keep you from doing the work. Get a hand. Hold a wall. Grab a bar. Use a cane or walker. Whatever it takes.
And keep at it. Practice, practice, practice. Try to not compare today to the past. Just keep striving so your tomorrows can keep you moving!
Check out the balance tabs for a few simple balance exercises. There are more where those came from - so many more. Message/email me if interested.
Wednesday, November 18, 2015
Thanking and Planking
If you are Lori, and you made it here: WELCOME! Thanks for coming.
I'm involved in a Facebook challenge group called Thanking and Planking! Each day there is a small plank challenge and an opportunity to share something you are thankful for and or a pay-it-forward act of kindness. Loving it!
I think the inspiration of joining together to improve ourselves cannot be undervalued! We need to bond together and help each other every step of the way.
If you clicked through to here from the challenge, thank you for the motivation. If you would like to join in to help each other be inspired to move and grow, jump on it!!
I'm involved in a Facebook challenge group called Thanking and Planking! Each day there is a small plank challenge and an opportunity to share something you are thankful for and or a pay-it-forward act of kindness. Loving it!
I think the inspiration of joining together to improve ourselves cannot be undervalued! We need to bond together and help each other every step of the way.
If you clicked through to here from the challenge, thank you for the motivation. If you would like to join in to help each other be inspired to move and grow, jump on it!!
Wednesday, November 11, 2015
Balance and Tai Chi
Always looking for modalities to improve balance and aid fall prevention.
Interesting article on the research with Tai Chi on the above: some positive, some good questions.
Will continue to dig for more specific information and research on use of Tai Chi with MSers.
http://www.massagetherapy.com/articles/index.php/article_id/99/Tai-Chi
Interesting article on the research with Tai Chi on the above: some positive, some good questions.
Will continue to dig for more specific information and research on use of Tai Chi with MSers.
http://www.massagetherapy.com/articles/index.php/article_id/99/Tai-Chi
Friday, November 6, 2015
Irony!
Irony #1: In my last few posts, I've been "preaching" BALANCE!! So, today I slip in the shower and crash to the bottom of the bath tub.
Irony #2: This past week I was asked to be the JUMPS coach for our high school track team. One of the first things MS took from me was my ability to jump. I went from having a very respectable vertical leap to not being able to get my feet off the floor.
Oh, life! Isn't it grand!
MUST continue to work on balance! MUST continue to teach what I've lost!
Irony #2: This past week I was asked to be the JUMPS coach for our high school track team. One of the first things MS took from me was my ability to jump. I went from having a very respectable vertical leap to not being able to get my feet off the floor.
Oh, life! Isn't it grand!
MUST continue to work on balance! MUST continue to teach what I've lost!
Wednesday, November 4, 2015
Tuesday, November 3, 2015
Effective Cardio with Limited Mobility
Had your blood pressure checked lately? A sedentary lifestyle leads to increased risk of cardiovascular disease, diabetes, and inflammatory flare-ups.
Your heart really doesn't take MS as an "excuse." We need to elevate that heart rate and keep it there - 3 to 5 times per week for 20+ minutes per session.
So, how do we get enough CARDIO when it's difficult to move?
Your heart really doesn't take MS as an "excuse." We need to elevate that heart rate and keep it there - 3 to 5 times per week for 20+ minutes per session.
So, how do we get enough CARDIO when it's difficult to move?
- WATER RUNNING: I've suggested it before, here it comes again. Strap on that flotation belt and get into deep water. Run in place, do high knees, different kinds of kicks, ROM motion (lifting one leg at a time to the surface, straddle splits). Just move however the legs will co-operate and build up to the point where you can sustain a hard workout. Be patient and give yourself a grace period of slow, incremental increases in length of time and intensity of workout.
- BOXING: Hitting a body bag or speed bag can be a great way to elevate the heart rate. It's an activity that can be done standing or sitting. If you have some balance, you can work on kicking movements, as well. Take it slow and resist the urge to overestimate your balance capacity. (Note to water lovers: you can use the running belt and "box" against the resistance of the pool water.)
- SWIMMING: Lap swimming, lap kicking (using a kick board), lap pulls (using a pull buoy) all can get that cardio rolling. Ask the lifeguard if you can use the kick boards and pull buoys - when I've explained my situation, all have been quick to help. When my core and lower back muscles fatigue to the point where I feel I can't swim anymore but I've yet to get a sustained cardio workout, I strap on my running belt to aid flotation and continue the workout. Cheating, maybe! But it gets me more time moving than if I did not rely on the prop.
- FITNESS CLASSES/DANCE CLASSES: Here modification is the key. If you can stand, try to do the movement to capacity - or sway instead of stepping. If a chair suits you better, shift your weight, use your upper body (big arm movements) and participate with joy! Music is fantastic inspiration!
Would love to hear your ideas for Cardio! Comment, if you please!
Sunday, October 25, 2015
Practicing Balance - Literally!
Balance = Practice
In order to improve balance, we must practice it - like it's a skill set. It is something we once had, now it is lost or compromised and we must FIGHT to regain it!
So, practice! Practice each day standing on one foot and then the other. Set a timer or count and try to hold the balance for a few seconds - increasing the length over time.
Hold on if you must (or use the touch-point balance technique described in the BALANCE tab). Be safe - but push yourself to really hold the stance. You will be working on both the neurological part of balance and the muscle part. When the little muscles don't get used, they quickly atrophy. Then, as you practice, they regain their strength (and you, your confidence).
You can even kneel to practice balance - it's closer to the ground and a bit safer. Kneel on a soft surface: a rug or even a padded yoga mat.
If the force of gravity is too much and you can't stand on one foot, try just shifting a higher percentage of your weight to one side, and hold that. This keeps both feet firmly on the ground and reduces the risk of a fall.
Finally, if even that is out of reach, get into a pool with chest deep water. If you are not comfortable in the water, wear a life jacket or a water running belt to assure that you will float if you cannot maintain an upright position. Practice the one-footed stance in the water. If you fall, no bumps or bruises! Gradually reduce the depth of the water over time as you progress.
I find that progress meets setback which cycles around again to progress... It's not always a linear progression, but continuing to fight for balance will be worth the effort. Pay offs = mobility, safety and hope!
In order to improve balance, we must practice it - like it's a skill set. It is something we once had, now it is lost or compromised and we must FIGHT to regain it!
So, practice! Practice each day standing on one foot and then the other. Set a timer or count and try to hold the balance for a few seconds - increasing the length over time.
Hold on if you must (or use the touch-point balance technique described in the BALANCE tab). Be safe - but push yourself to really hold the stance. You will be working on both the neurological part of balance and the muscle part. When the little muscles don't get used, they quickly atrophy. Then, as you practice, they regain their strength (and you, your confidence).
You can even kneel to practice balance - it's closer to the ground and a bit safer. Kneel on a soft surface: a rug or even a padded yoga mat.
If the force of gravity is too much and you can't stand on one foot, try just shifting a higher percentage of your weight to one side, and hold that. This keeps both feet firmly on the ground and reduces the risk of a fall.
Finally, if even that is out of reach, get into a pool with chest deep water. If you are not comfortable in the water, wear a life jacket or a water running belt to assure that you will float if you cannot maintain an upright position. Practice the one-footed stance in the water. If you fall, no bumps or bruises! Gradually reduce the depth of the water over time as you progress.
I find that progress meets setback which cycles around again to progress... It's not always a linear progression, but continuing to fight for balance will be worth the effort. Pay offs = mobility, safety and hope!
Saturday, October 24, 2015
Relevant?
I was mildly called out as being irrelevant for encouraging exercise for many who struggle with limited mobility. Point taken.
Struggling to fully comprehend limitations is always a struggle. Your limitations and mine might be very similar - or, frankly, very different.
What I do know is that limitations should not (and for health's sake) cannot lead to a sedentary lifestyle. Movement is important to retain quality of life and quality of overall health. That movement may be limited in its type or scope, but we must together find ways to explore movement that is both accessible and meaningful.
That's what I promote. And, I hope that is relevant for us all.
Enjoy your weekend!!
Struggling to fully comprehend limitations is always a struggle. Your limitations and mine might be very similar - or, frankly, very different.
What I do know is that limitations should not (and for health's sake) cannot lead to a sedentary lifestyle. Movement is important to retain quality of life and quality of overall health. That movement may be limited in its type or scope, but we must together find ways to explore movement that is both accessible and meaningful.
That's what I promote. And, I hope that is relevant for us all.
Enjoy your weekend!!
Wednesday, October 21, 2015
Failure?
I could tear up sharing this with you!
From BadYogi (with a focus on Yoga for everyone - not just the skinny, pretzels of the world!)
It's a 90 second video about failure so you'd never guess that it took over a year and a half to make and spans 4 countries. Whether it’s handstands that you’re working on or something else, we all know the feeling of working endlessly at something, failing, and getting back up to work on it again the next day.
Effort and even failure are spiritual experiences and anyone who’s ever tried for something knows them well.
It's no secret but always needs reminding: even “failure” is welcome here.
Share with someone who could also use this reminder. We all need a little boost once in a while.
Monday, October 19, 2015
Water running / walking details
So, what is this water running??
Time to get more specific.
Compromised balance and elevated body temperature side effects are two foes MSers face. Additionally, gait abnormalities can make it difficult to use the basic act of walking as exercise. Aside from the obvious hurdle that it's hard to walk, the neurological challenges fatigue small muscles and challenge basic alignment of the kinetic chain that is necessary to walk with efficiency.
No leap here, but folks with MS tend to get less exercise than they need.
Enter the water running belt. This foam device is worn snugly around the waist and allows the body to float vertically in the water.
This photo is just one of the many choices of brand and shape. I've spent as little as $15 on a basic version at my local sporting goods store.
Don the belt before entering the water. It's designed to be used in water deep enough to not have your feet touch the bottom. Then you simply walk or run (or go through any number of range of motion activities) in the water.
Time to get more specific.
Compromised balance and elevated body temperature side effects are two foes MSers face. Additionally, gait abnormalities can make it difficult to use the basic act of walking as exercise. Aside from the obvious hurdle that it's hard to walk, the neurological challenges fatigue small muscles and challenge basic alignment of the kinetic chain that is necessary to walk with efficiency.
No leap here, but folks with MS tend to get less exercise than they need.
Enter the water running belt. This foam device is worn snugly around the waist and allows the body to float vertically in the water.
This photo is just one of the many choices of brand and shape. I've spent as little as $15 on a basic version at my local sporting goods store.
Don the belt before entering the water. It's designed to be used in water deep enough to not have your feet touch the bottom. Then you simply walk or run (or go through any number of range of motion activities) in the water.
- no swimming - walk, jog, or run
- no skill necessary
- no balance needed
- the water helps keep body temperature low
- no impact from running/walking with a funky gait
You can choose your activity intensity by your current fitness level and your activity goals. It can be a relaxing "walk in the park" or a serious run! You are in control!
Warning: water walking/jogging can become very boring! Music helps some; company helps even more!
Intervals, long runs, pyramids... They are all at your fingertips. Your legs will enjoy the freedom; your heart will thank you; and you might even get a mood boost from the activity.
Good luck!
Friday, October 16, 2015
Fight the good fight - consistently!
Faithfully following a plan of action that helps you feel better and be more active seems logical, right? So, what happens when you have a "good streak" and take it all for granted. Slack off on the plan? Symptoms come back with a vengeance!
Lesson learned over and over and over again!
If it is working, stick with it! Find someone to nudge you in that direction - even when you're feeling better or worse.
Stay the course! Fight the good fight!
Lesson learned over and over and over again!
If it is working, stick with it! Find someone to nudge you in that direction - even when you're feeling better or worse.
Stay the course! Fight the good fight!
Friday, October 9, 2015
Water Fitness
On Tuesday evenings, I lead a water fitness class. Using specific flotation belts, the participants are able to run in deep water. No swimming ability is required, There is no contact with the bottom of the pool, so the workout is essentially zero impact. Additionally, the water is cool (rarely cool enough for my tastes, but plenty cold for everyone else), and the cooling effect allows me to exercise at higher intensity for longer periods of time. No balance is required!!
We generally work for between one and two hours on cardio fitness, some muscle strength, range of motion, and gait/form. I get great feedback from the participants, and we have a blast.
Simultaneously, in the shallow end of the pool, there is another instructor leading a water aerobics class. This session targets older participants, many with arthritis, joint pain, and weight issues.
Both groups are benefiting from the joys of exercising in water: young/old, strong/impaired, fit/struggling!
I only wish I had a way to specifically invite participants with MS or other movement challenges to join my classes!
If you have the opportunity, please do some research on water fitness activities in your area. I wish you could ALL come to my class!!
If you have access to a pool, but need advice on what to do once you get there, comment and I will be happy to communicate some ideas on getting started!
We generally work for between one and two hours on cardio fitness, some muscle strength, range of motion, and gait/form. I get great feedback from the participants, and we have a blast.
Simultaneously, in the shallow end of the pool, there is another instructor leading a water aerobics class. This session targets older participants, many with arthritis, joint pain, and weight issues.
Both groups are benefiting from the joys of exercising in water: young/old, strong/impaired, fit/struggling!
I only wish I had a way to specifically invite participants with MS or other movement challenges to join my classes!
If you have the opportunity, please do some research on water fitness activities in your area. I wish you could ALL come to my class!!
If you have access to a pool, but need advice on what to do once you get there, comment and I will be happy to communicate some ideas on getting started!
Friday, October 2, 2015
Tuesday, September 29, 2015
One day THIS, next day THAT
So, what will it be today?
Toss a coin..
Last time I did this exercise (2 days ago) I could do 12 reps. Today, I fell to the ground after 6.
Did the muscle capacity change? NO!
Did the mental focus change? NO!
The neural pathway is variable! Why? What opens/closes it? (Silence)
The hope is that tomorrow the capacity is back to 12.
In the meantime, I stand by my theory that I would rather have a strong muscle fail occasionally than live with a weaker muscle capacity day-by-day. Fully realizing the muscle strength can't compensate for the neural screw ups, I build the muscles and hope (and work) for generation of new neural pathways.
Wishful thinking? Maybe, but I'm still fighting the good fight after 20 years!
Toss a coin..
Last time I did this exercise (2 days ago) I could do 12 reps. Today, I fell to the ground after 6.
Did the muscle capacity change? NO!
Did the mental focus change? NO!
The neural pathway is variable! Why? What opens/closes it? (Silence)
The hope is that tomorrow the capacity is back to 12.
In the meantime, I stand by my theory that I would rather have a strong muscle fail occasionally than live with a weaker muscle capacity day-by-day. Fully realizing the muscle strength can't compensate for the neural screw ups, I build the muscles and hope (and work) for generation of new neural pathways.
Wishful thinking? Maybe, but I'm still fighting the good fight after 20 years!
Sunday, September 27, 2015
Telling the Universal Story
One of the many challenges of living with MS is in the over thinking. I find myself analyzing and second guessing decisions and choices as I move through days, months, years. I wonder if the actions I take impact the course of the MS in a positive or negative way - what if this or that? should I have? is any of it really helping???
Are all of us out there trying to manage this disease alone? Have you received useful advice from health care or other providers that you know for a fact has made a positive impact? Have you made personal decisions that you know without a shadow of a doubt have moved you closer to or farther from wholeness?
I feel frustrated by the gray areas. I work hard to do a great many things intentionally and well. I strive to live in a way that tends to manage my health as much as I can muster. Mostly I feel good about all of it, but then I have the days where I wonder if any of it matters. Is my current place just luck or fate or random? Why is a former classmate of mine in a wheelchair and I am still tackling running (albeit with limited success)? What makes the difference?
Scanning the medical literature for answers seems futile. There simply is not enough data to really explore issues fully. Limited studies hint that lifestyle choices matter, but to what degree and for how long remains shrouded in mystery. I want more data! I want more studies!
I want a flood of money to invest in individuals and their outcomes and to quantify and analyze details about diet, exercise, and sleep for us all. This, of course, is in addition to work being done to reverse and modify the disease within a traditional medical model.
Do you have access to programs that help you manage your MS? I truly want to know what works: for YOU and for us all.
Comment here or email (angela.h.gorman@gmail.com).
Are all of us out there trying to manage this disease alone? Have you received useful advice from health care or other providers that you know for a fact has made a positive impact? Have you made personal decisions that you know without a shadow of a doubt have moved you closer to or farther from wholeness?
I feel frustrated by the gray areas. I work hard to do a great many things intentionally and well. I strive to live in a way that tends to manage my health as much as I can muster. Mostly I feel good about all of it, but then I have the days where I wonder if any of it matters. Is my current place just luck or fate or random? Why is a former classmate of mine in a wheelchair and I am still tackling running (albeit with limited success)? What makes the difference?
Scanning the medical literature for answers seems futile. There simply is not enough data to really explore issues fully. Limited studies hint that lifestyle choices matter, but to what degree and for how long remains shrouded in mystery. I want more data! I want more studies!
I want a flood of money to invest in individuals and their outcomes and to quantify and analyze details about diet, exercise, and sleep for us all. This, of course, is in addition to work being done to reverse and modify the disease within a traditional medical model.
Do you have access to programs that help you manage your MS? I truly want to know what works: for YOU and for us all.
Comment here or email (angela.h.gorman@gmail.com).
Wednesday, September 23, 2015
More spoons, please!
I hope you had the opportunity to click through and read the SPOON THEORY. Some folks have all the words. (See previous post for the link)
I have spent my time thinking about that bouquet of spoons and feeling frustrated by the limitations it represents. I'm sure it's a metaphor we can all relate to!
So, how do we put more spoons in the bouquet - more gas in the tank?
I ask myself if I am doing everything I can to make sure I'm maximizing that spoon count.
Taking care of myself?
Getting to bed on time?
Avoiding caffeine?
Eating regularly?
Healthful foods and drinks?
Exercise?
Down time?
Minimizing involvement in peripheral stress?
Massage?
Allowing time to meditate, pray and/or dream?
Laughing?
Nature?
Each day, each NO may mean spoons disappearing before they are even spent. More YES, More ENERGY...
More spoons, please!!
I have spent my time thinking about that bouquet of spoons and feeling frustrated by the limitations it represents. I'm sure it's a metaphor we can all relate to!
So, how do we put more spoons in the bouquet - more gas in the tank?
I ask myself if I am doing everything I can to make sure I'm maximizing that spoon count.
Taking care of myself?
Getting to bed on time?
Avoiding caffeine?
Eating regularly?
Healthful foods and drinks?
Exercise?
Down time?
Minimizing involvement in peripheral stress?
Massage?
Allowing time to meditate, pray and/or dream?
Laughing?
Nature?
Each day, each NO may mean spoons disappearing before they are even spent. More YES, More ENERGY...
More spoons, please!!
Sunday, September 20, 2015
Saturday, September 19, 2015
Relishing Others' Success!
I realize there may be a fine line between living vicariously through another and truly relishing another's success. Maybe I'm tip-toeing right now.
My cross country team is an absolutely fantastic group of kids! My youth soccer team is an amazing group of young girls!
Every day they help me find success in their efforts and passions. Everything we do, we do as a team, and it is amazing to be a part of something so good.
What I may not be able to do as well as I used to, I can help and teach others to do - and do their best - and find success.
Most importantly, we share the journey - and isn't that THE BEST PART!!
My cross country team is an absolutely fantastic group of kids! My youth soccer team is an amazing group of young girls!
Every day they help me find success in their efforts and passions. Everything we do, we do as a team, and it is amazing to be a part of something so good.
What I may not be able to do as well as I used to, I can help and teach others to do - and do their best - and find success.
Most importantly, we share the journey - and isn't that THE BEST PART!!
Monday, July 20, 2015
Challenge groups?
If you are on Facebook or any type of social media, I'm sure you've seen a lot of promotion of programs that sell products (shakes, meal plans, workout videos, books) to help people get control of their weight and other lifestyle issues.
These programs, like Avocare and Beachbody to name two, appear to be quite popular and helpful for many subscribers.
I have nothing against a "pay to play" plan, but I am deeply interested in another model. I am wanting to start challenge groups that are not based upon product sales and pyramid-type membership. What I see is an online space where people join together in challenge groups to focus on the issues that matter most to them: diet, exercise, mobility, vision, and so on. The groups could be focal and target a single issue, or they could be multi-faceted.
My idea is to create online meeting spaces and electronic communications to teach, challenge and support.
I am open to the inclusion of people with or without MS who see value in joining together to improve health and well being.
I am also open to ideas of what would be beneficial to members of this growing community.
Comment, if you please, your thoughts about this idea. Interested? Know someone who might be? Let's start sharing the idea and use this blog as a starting point to challenge one another!
These programs, like Avocare and Beachbody to name two, appear to be quite popular and helpful for many subscribers.
I have nothing against a "pay to play" plan, but I am deeply interested in another model. I am wanting to start challenge groups that are not based upon product sales and pyramid-type membership. What I see is an online space where people join together in challenge groups to focus on the issues that matter most to them: diet, exercise, mobility, vision, and so on. The groups could be focal and target a single issue, or they could be multi-faceted.
My idea is to create online meeting spaces and electronic communications to teach, challenge and support.
I am open to the inclusion of people with or without MS who see value in joining together to improve health and well being.
I am also open to ideas of what would be beneficial to members of this growing community.
Comment, if you please, your thoughts about this idea. Interested? Know someone who might be? Let's start sharing the idea and use this blog as a starting point to challenge one another!
Wednesday, July 15, 2015
Massage is the winner!
Which is the preferred intervention for people with MS:
The primary aim was to investigate the comparative effects of massage therapy and exercise therapy on patients with multiple sclerosis. The secondary aim was to investigate whether combination of both massage and exercise has an additive effect.
Randomized controlled pilot trial with repeated measurements and blinded assessments.
Local Multiple Sclerosis Society.
A total of 48 patients with multiple sclerosis were randomly assigned to four equal subgroups labelled as massage therapy, exercise therapy, combined massage-exercise therapy and control group.
The treatment group received 15 sessions of supervised intervention for five weeks. The massage therapy group received a standard Swedish massage. The exercise therapy group was given a combined set of strength, stretch, endurance and balance exercises. Patients in the massage-exercise therapy received a combined set of massage and exercise treatments. Patients in the control group were asked to continue their standard medical care.
Pain, fatigue, spasticity, balance, gait and quality of life were assessed before and after intervention.
Massage therapy resulted in significantly larger improvement in pain reduction (mean change 2.75 points, P = 0.001), dynamic balance (mean change, 3.69 seconds, P = 0.009) and walking speed (mean change, 7.84 seconds, P = 0.007) than exercise therapy. Patients involved in the combined massage-exercise therapy showed significantly larger improvement in pain reduction than those in the exercise therapy (mean change, 1.67 points, P = 0.001).
Massage therapy could be more effective than exercise therapy. Moreover, the combination of massage and exercise therapy may be a little more effective than exercise therapy alone.
- exercise therapy
- massage
- exercise + massage
- status quo (maintaining course of medical treatment/lifestyle)?
As a person who focuses on exercise of many kinds, I chose the third option (exercise plus massage). I figured the biggest gains were from exercise and the massage probably helped with recovery.
WRONG!!!
The answer is correct, but the emphasis may be more on the massage side than the exercise component.
Full study details can be found at: http://www.ncbi.nlm.nih.gov/pubmed/23828184
Last fall, I started having regular massage therapy sessions. It has made a measurable difference in my ability to move freely. Several nagging back issues (likely caused by my funky gait) have resolved. The literature is filled with positive outcomes from massage.
I urge you to do the research and find a good masseuse. I have locked onto a Chinese massage therapist who needs little to no English to understand my every physical limitation and pain.
Rub it out!!
-----
More details:
Massage therapy and exercise therapy in patients with multiple sclerosis: a randomized controlled pilot study.
Abstract
OBJECTIVE:
DESIGN:
SETTING:
SUBJECTS:
INTERVENTIONS:
MAIN MEASURES:
RESULTS:
CONCLUSIONS:
Sunday, July 12, 2015
Hiding
Like many or all of you, I struggle deeply with sharing both the fact that I have MS and the impact that it has on my daily life. I have not let it be widely known in my community and even circle of friends that I have MS. Only close family and a very few friends know the whole story.
I occasionally ask myself why I choose to keep this diagnosis private. Here, I consciously use the word "private" versus "secret." It is no secret that I fight MS - but I do keep it a private battle.
Again, I ask myself WHY? WHY do I feel the need to go this mostly alone?
Is is healthy or productive to keep this to myself?
What demons am I battling with my image to others that push me to zip my lips?
When does one decide to share this information, to whom, and why or why not?
I hope you have better answers to this one than I! If so, please share and I am certain your words could help a lot of people through agonizing decisions.
For many, keeping this on the down low is a practical, employment matter. Not so, for me. I run my own micro business and am my own boss and employee. I do not disclose to contractors for fear of not having my proposals fully considered.
This professional decision is clear for me. I have no struggles with it.
Where the struggle sets in is on the personal end. I am a private person by nature, training, and personality. I'm more interested in learning about others than sharing about myself.
So, what's the big deal? Yesterday, a trusted friend asked me how my running was going. I gave my standard answer of "slow and steady." A true answer! I run similar mileage and pace almost every week of the year. I almost never miss a day of running and am very happy with the benefits I gain from each session.
Then, she asked the next question: "Do you ever consider racing or working on getting faster?" She's a coach (like me), so this is a natural question between us. She knows I have an athletic past and that I am in shape. My answer to her was so evasive and corny that I walked away feeling guilty - like I had lied to her. Something about being content where I am... blah... blah ... blah...
I am not content where I am! Every fiber in my being wants to race again!! I love competition and would give anything to get out there and toe the line for something more than a fitness run!! That's the truth!!
But, I said nothing like that in my answer. I walked away feeling like a coward and a liar. My answer was not genuine, complete or even truthful... (Bow head)
So, my focus for this week is going to be on communication. Not just the "how" piece, but more deeply on the "why" piece. I want to re-visit the reasons why I am not being fully upfront about my situation and how it impacts me physically and emotionally.
And, dear friend, who I avoided answering yesterday: I will try harder to be truthful. We will talk.
Wish me luck. It's hard to be broken!
I occasionally ask myself why I choose to keep this diagnosis private. Here, I consciously use the word "private" versus "secret." It is no secret that I fight MS - but I do keep it a private battle.
Again, I ask myself WHY? WHY do I feel the need to go this mostly alone?
Is is healthy or productive to keep this to myself?
What demons am I battling with my image to others that push me to zip my lips?
When does one decide to share this information, to whom, and why or why not?
I hope you have better answers to this one than I! If so, please share and I am certain your words could help a lot of people through agonizing decisions.
For many, keeping this on the down low is a practical, employment matter. Not so, for me. I run my own micro business and am my own boss and employee. I do not disclose to contractors for fear of not having my proposals fully considered.
This professional decision is clear for me. I have no struggles with it.
Where the struggle sets in is on the personal end. I am a private person by nature, training, and personality. I'm more interested in learning about others than sharing about myself.
So, what's the big deal? Yesterday, a trusted friend asked me how my running was going. I gave my standard answer of "slow and steady." A true answer! I run similar mileage and pace almost every week of the year. I almost never miss a day of running and am very happy with the benefits I gain from each session.
Then, she asked the next question: "Do you ever consider racing or working on getting faster?" She's a coach (like me), so this is a natural question between us. She knows I have an athletic past and that I am in shape. My answer to her was so evasive and corny that I walked away feeling guilty - like I had lied to her. Something about being content where I am... blah... blah ... blah...
I am not content where I am! Every fiber in my being wants to race again!! I love competition and would give anything to get out there and toe the line for something more than a fitness run!! That's the truth!!
But, I said nothing like that in my answer. I walked away feeling like a coward and a liar. My answer was not genuine, complete or even truthful... (Bow head)
So, my focus for this week is going to be on communication. Not just the "how" piece, but more deeply on the "why" piece. I want to re-visit the reasons why I am not being fully upfront about my situation and how it impacts me physically and emotionally.
And, dear friend, who I avoided answering yesterday: I will try harder to be truthful. We will talk.
Wish me luck. It's hard to be broken!
Sunday, June 14, 2015
,
Absent! Yes, I know!
I've been busy working on lots of small projects that add up to lots of time and energy.
I am back to coaching the cross country team (which I LOVE). Additionally, I am writing and helping to execute running/training plans for all different kinds of individuals. Some are teetering on over training, while others are just getting started in the movement realm. It's all good.
Somehow, helping others move helps me stay motivated to move! And, that's a great thing!
I've been struggling with some weakness/injury issues, but am continuing to run and swim. I'm doing a lot of pool running and swimming. The pool is quite forgiving - no balance required and no impact. The cooling effects of the water help me to get a full workout in without wrestling the Ulthoff crap.
So, while it's hot, be COOL and hit the POOL.
Later!
I've been busy working on lots of small projects that add up to lots of time and energy.
I am back to coaching the cross country team (which I LOVE). Additionally, I am writing and helping to execute running/training plans for all different kinds of individuals. Some are teetering on over training, while others are just getting started in the movement realm. It's all good.
Somehow, helping others move helps me stay motivated to move! And, that's a great thing!
I've been struggling with some weakness/injury issues, but am continuing to run and swim. I'm doing a lot of pool running and swimming. The pool is quite forgiving - no balance required and no impact. The cooling effects of the water help me to get a full workout in without wrestling the Ulthoff crap.
So, while it's hot, be COOL and hit the POOL.
Later!
Tuesday, April 14, 2015
Patience! Please!
This post is going to take awhile.
I am mulling over my response to an article in today's (4/14/2015) Pittsburgh Post Gazette about a newer and riskier MS drug therapy.
Read the article here: New-MS-drug-shows-promise-for-those-with-aggressive-disease/
Oh, I'm going to have A LOT to say about this one!
Stay tuned!
I am mulling over my response to an article in today's (4/14/2015) Pittsburgh Post Gazette about a newer and riskier MS drug therapy.
Read the article here: New-MS-drug-shows-promise-for-those-with-aggressive-disease/
Oh, I'm going to have A LOT to say about this one!
Stay tuned!
Monday, April 13, 2015
Help?
I'm at a bit of a crossroads. Feeling fantastic EXCEPT I am having piriformis issues that are limiting my ability to move. I am self diagnosing here, but I believe that my gait abnormalities have led to a somewhat ongoing piriformis issue that puts pressure on the nerve and causes PAIN. Aargh. As if the underlying nerve issues aren't enough - now add a dose of real pain.
Anyone else deal with these sideshoots of MS. They aren't the core problem, but they result from the issues of MS.
Rehab ideas, anyone?
I'm back to walking about 1.5 miles (with a little jogging tossed in because I just can't resist).
Would love to hear your ideas!!
Anyone else deal with these sideshoots of MS. They aren't the core problem, but they result from the issues of MS.
Rehab ideas, anyone?
I'm back to walking about 1.5 miles (with a little jogging tossed in because I just can't resist).
Would love to hear your ideas!!
Friday, April 10, 2015
Spring has Sprung
The blog is NOT dead! Just a bit behind...
I have been on a wonderful, revitalizing trip filled with fun, great weather, family, friends, activity, and music! As a friend noted: recreation = re-creation!
Getting away is good for body, mind and soul. It provides time for reflection and gets me out of the routines and ruts that can lead to long-term harmful habits. For me, it's a chance to hit the GiAnT ReSeT button and start afresh.
Time to get back to work: on everything!
I have been on a wonderful, revitalizing trip filled with fun, great weather, family, friends, activity, and music! As a friend noted: recreation = re-creation!
Getting away is good for body, mind and soul. It provides time for reflection and gets me out of the routines and ruts that can lead to long-term harmful habits. For me, it's a chance to hit the GiAnT ReSeT button and start afresh.
Time to get back to work: on everything!
Tuesday, March 17, 2015
Honest and Open
Nothing quite matches an honest and open conversation with a trusted friend! Thanks, NJ, for a revealing and wonderful discussion about the realities of moving through life with the challenges of disorders like MS.
There is peace to be found in sharing, and I thank you, and everyone who is willing to join in this conversation, I do not believe any one of us can find the strength, muster the resources, or gather the knowledge to solve any of this alone.
Join in the conversation! There are ideas, support, and determination HERE!
Thanks, NJ!
There is peace to be found in sharing, and I thank you, and everyone who is willing to join in this conversation, I do not believe any one of us can find the strength, muster the resources, or gather the knowledge to solve any of this alone.
Join in the conversation! There are ideas, support, and determination HERE!
Thanks, NJ!
Friday, March 6, 2015
Get To Water!!
One thing I have not yet discussed (maybe because it's winter!) is the great benefit of moving in the water. Swimming is fantastic exercise! Don't limit yourself to just swimming laps, however.
Walking takes a lot of coordination - that is moving lots of systems together and in sync with each other. Jumping takes even more. Walking in the water requires a lower level of coordination AND provides some buoyancy. Ditto for jumping! Even when I am unable to jump on land, if I get into waist or chest level water, I can jump. If I tip, I just float! No impact, no loss!
Using the water as a general exercise medium works for aerobic-type exercise, yoga, and some cardio (water running or swimming). There are special flotation belts that keep the body upright in water and allow you to sort of run in place in deep water. Check out AquaJogger, for one.
Additionally, when the impact factor is removed AND the body temperature remains lower, the chances of being able to achieve an excellent workout increase. Even if I am limited on land, I generally and much less restricted in the water.
So, get to a pool or an ocean. Join a water exercise class or go it alone. Try noodles, life jackets, running belts, swimming, jumping, yoga poses (you may be surprised what you can do)...
Walking takes a lot of coordination - that is moving lots of systems together and in sync with each other. Jumping takes even more. Walking in the water requires a lower level of coordination AND provides some buoyancy. Ditto for jumping! Even when I am unable to jump on land, if I get into waist or chest level water, I can jump. If I tip, I just float! No impact, no loss!
Using the water as a general exercise medium works for aerobic-type exercise, yoga, and some cardio (water running or swimming). There are special flotation belts that keep the body upright in water and allow you to sort of run in place in deep water. Check out AquaJogger, for one.
Additionally, when the impact factor is removed AND the body temperature remains lower, the chances of being able to achieve an excellent workout increase. Even if I am limited on land, I generally and much less restricted in the water.
So, get to a pool or an ocean. Join a water exercise class or go it alone. Try noodles, life jackets, running belts, swimming, jumping, yoga poses (you may be surprised what you can do)...
Sunday, March 1, 2015
Proof enough for me!
Last weekend I had an incident.
I was lining up cross country ski boots around the wood burning stove, and (surprise, surprise) I lost my balance. I reached out with my right hand and caught myself on the 700 + degree surface.
Good news and bad... The bad news first! I burned the pads of the first three fingers quite badly. They are white and leathery and without feeling. BUT, here's the good news... I don't want to make too much of this, but I truly believe that the touch-point balance technique (outlined in the BALANCE tab) saved my hand.
I reached out reflexively and lightly with just a few fingers because I have trained myself to sustain and regain balance with this technique with years and years of practice. The burn was localized to those small areas. I am believing that without this mind-body training I would likely have reached out with my entire hand and put all of that vital tissue at risk.
The technique has kept me upright countless times and this time it may have saved my hand.
If you are interested in learning more, please visit the BALANCE tab. If you would like more information on this very simple technique or how to apply it, comment below (and I'll happily type with one hand to reply!).
BTW - healing well day by day!
I was lining up cross country ski boots around the wood burning stove, and (surprise, surprise) I lost my balance. I reached out with my right hand and caught myself on the 700 + degree surface.
Good news and bad... The bad news first! I burned the pads of the first three fingers quite badly. They are white and leathery and without feeling. BUT, here's the good news... I don't want to make too much of this, but I truly believe that the touch-point balance technique (outlined in the BALANCE tab) saved my hand.
I reached out reflexively and lightly with just a few fingers because I have trained myself to sustain and regain balance with this technique with years and years of practice. The burn was localized to those small areas. I am believing that without this mind-body training I would likely have reached out with my entire hand and put all of that vital tissue at risk.
The technique has kept me upright countless times and this time it may have saved my hand.
If you are interested in learning more, please visit the BALANCE tab. If you would like more information on this very simple technique or how to apply it, comment below (and I'll happily type with one hand to reply!).
BTW - healing well day by day!
Friday, February 27, 2015
Break time
Sometimes the greatest gift, or the finest destination, is the permission we give ourselves to rest or play or be.
Thursday, February 19, 2015
Yay!
I was asked to be the keynote speaker for a national conference today.
Yay!
Time to start working on a message!
Yay!
Time to start working on a message!
Tuesday, February 17, 2015
Public Support Groups?
I am on Facebook a little bit here and there. I've chosen not to be a very active participant in that realm, but I watch my friends and my families post about their doings. It is an interesting way to connect with people from the "way back" - like HS, college...
One trend I've noticed is a multi-level marketing concept where people (women?) post information about a product they are selling in conjunction with the promotion of healthy eating and exercise. People in these groups tend to encourage one another on their journey, which, at least from the outside, appears to be mainly about weight loss.
I have no idea if the model is successful, but it sure is prevalent. Of course, there is a product to sell, so I'm sure that motivates the promoter to be actively engaged with the potential customer base.
Is there a space, like this, that would work for MS support (sans the product sales and promotion of body image)? Could people bond together to encourage one another on the choices of every day life? This blog is not generating much comment, so I have no idea if it is of any use to anyone. Perhaps a more interactive forum would be better?
Yes or no? Let me in on your thoughts!
One trend I've noticed is a multi-level marketing concept where people (women?) post information about a product they are selling in conjunction with the promotion of healthy eating and exercise. People in these groups tend to encourage one another on their journey, which, at least from the outside, appears to be mainly about weight loss.
I have no idea if the model is successful, but it sure is prevalent. Of course, there is a product to sell, so I'm sure that motivates the promoter to be actively engaged with the potential customer base.
Is there a space, like this, that would work for MS support (sans the product sales and promotion of body image)? Could people bond together to encourage one another on the choices of every day life? This blog is not generating much comment, so I have no idea if it is of any use to anyone. Perhaps a more interactive forum would be better?
Yes or no? Let me in on your thoughts!
Friday, February 13, 2015
Another Day on the Treadmill
It is better than nothing, but being on the treadmill does get monotonous after a few weeks. Really craving some outside (and WARMER) air! The sun did shine here today, and it was lovely, but I had to make a decision between the indoor treadmill and close to 0 F outdoors. Indoors, it was.
For me, one thing that makes the time spent on a treadmill worth it is the amount I effort I put into it. Strangely, the harder I work, the more bearable it is. I guess I'm too engaged in surviving to think about what I'm doing.
Spring is coming; it always does!
For me, one thing that makes the time spent on a treadmill worth it is the amount I effort I put into it. Strangely, the harder I work, the more bearable it is. I guess I'm too engaged in surviving to think about what I'm doing.
Spring is coming; it always does!
Tuesday, February 10, 2015
The Body You Have
"Everything changed the day I understood that if I was to become a runner, I would have to run with the body I had." - John Bingham, "The Courage to Start"
Substitute whatever fits for "runner:" walker, dancer, yogi...
Every day I must choose to exercise the body I have. That body can improve, but if you are deterred from exercise by limitations, it never will.
Substitute whatever fits for "runner:" walker, dancer, yogi...
Every day I must choose to exercise the body I have. That body can improve, but if you are deterred from exercise by limitations, it never will.
Sunday, February 8, 2015
Mandolin Day
I always thought my small hands would be great for playing a mandolin!! Then, I got a mandolin last February and realized my hands aren't big enough!! It's been a fun journey to mess around with this instrument. I have no musical background, so this is all new and exciting for me.
It's a great new skill that works on finger strength, coordination, my brain, and my soul.
Relaxation can be hard to come by, and playing a little music sure seems to help.
Do you play an instrument? Sing? Is music a part of your personal expression and life therapy? Maybe you can give me a few lessons. I need them!!
Pick on!
It's a great new skill that works on finger strength, coordination, my brain, and my soul.
Relaxation can be hard to come by, and playing a little music sure seems to help.
Do you play an instrument? Sing? Is music a part of your personal expression and life therapy? Maybe you can give me a few lessons. I need them!!
Pick on!
Thursday, February 5, 2015
A Negative in the Research??
Continuing the theme of research on MS and exercise outcomes, and I have found a few references to something that is making me quite uncomfortable. A "negative" of sorts...
I stand by everything in my previous post. The tested and measured outcomes for exercise programs are positive.
BUT this is not true across the board, and, hence, I pause.
There were two sub-groups that had very limited or no measurable gains from exercise programs: persons with MS who had high BMIs and those who were in later stages of progressive MS. This news is alarming to me because these are two of the groups who stand to gain the most.
I searched high and low for the WHYs behind these limited outcomes. No clear answers.
Somehow the combination of high BMI and MS and/or the advanced stages of the disease are even bigger challenges than the general MS population,
What's the course of action, then? Simple to say, but dire in its consequences, I believe it is a mandate to fight tooth and nail against falling into either of these categories and start the exercise regiment and healthy living and eating ASAP! We've got to encourage each other to move. We've got to devise and access exercise programs for people who deal with MS. We've got to move forward with the work and the research.
Anyone with thoughts or experience with this, please JUMP IN!
I stand by everything in my previous post. The tested and measured outcomes for exercise programs are positive.
BUT this is not true across the board, and, hence, I pause.
There were two sub-groups that had very limited or no measurable gains from exercise programs: persons with MS who had high BMIs and those who were in later stages of progressive MS. This news is alarming to me because these are two of the groups who stand to gain the most.
I searched high and low for the WHYs behind these limited outcomes. No clear answers.
Somehow the combination of high BMI and MS and/or the advanced stages of the disease are even bigger challenges than the general MS population,
What's the course of action, then? Simple to say, but dire in its consequences, I believe it is a mandate to fight tooth and nail against falling into either of these categories and start the exercise regiment and healthy living and eating ASAP! We've got to encourage each other to move. We've got to devise and access exercise programs for people who deal with MS. We've got to move forward with the work and the research.
Anyone with thoughts or experience with this, please JUMP IN!
Tuesday, February 3, 2015
What does the research say?
My personal, anecdotal evidence should not be enough to convince you of much of anything. It's time to look at some of the body of evidence from published work to see if exercise and movement is indeed tied to better outcomes in mobility, strength, and fatigue.
My first thought is that there does not appear to be an overwhelming body of evidence. I had hoped for much more: deeper, wider and broader in scope of investigation and outcomes. However, the results I did find were positive, and today I will share with you a summary of some recent work on exercise and MS.
Overview of outcomes: reduced fatigue, increased mobility, reduced pain, enhanced quality of life, better balance, increased bladder control, reduced sitting time, better memory.
Some details follow if you are interested. At least now, you are not just taking my word and experiences as truth.
Additional source: Consortium of Multiple Sclerosis Centers and the Americas Committee for Treatment and Research in Multiple Sclerosis
Source reference:Klaren R, et al "Efficacy of a behavioral intervention for reducing sedentary behavior in people with multiple sclerosis" CMSC-ACTRIMS 2014; Abstract RH04.
Source: MedPage Today © 2014 MedPage Today, LLC (04/06/14)
Salgado BC, Jones M, Ilgun S, McCord G, Loper-Powers M, van Houten P.Department of Physical Therapy, California State University, Sacramento, CA.
My first thought is that there does not appear to be an overwhelming body of evidence. I had hoped for much more: deeper, wider and broader in scope of investigation and outcomes. However, the results I did find were positive, and today I will share with you a summary of some recent work on exercise and MS.
Overview of outcomes: reduced fatigue, increased mobility, reduced pain, enhanced quality of life, better balance, increased bladder control, reduced sitting time, better memory.
Some details follow if you are interested. At least now, you are not just taking my word and experiences as truth.
- Strength Training and Fitness. A new study has found that people with multiple sclerosis may reduce perceived fatigue and increase mobility through a series of combined strength training and fitness exercises. A first phase of general fitness was followed by a personalized intervention program based on each patient’s maximum force. The scientists assessed the effects of training and found that the experiment group gained "a fair amount" of functionality while the control group remained stable.The study also includes an analysis of motivational aspects and an interview on the perception of the effects of sport. This part is especially interesting as it shows an improvement of the participants’ quality of life, although the University will continue working with the MS patients to see the long term effects. Source: Science 2.0 © 2014 ION Publications LLC (01/10/14)
- Yoga. Specialized program improved quality of life, decreased pain and fatigue. A specially-designed yoga program for these MS patients not only improved their physical and mental well-being but also enhanced their overall quality of life. What they discovered at the end of the eight-week trial was that those who participated were better able to walk for short distances and longer periods of time, had better balance while reaching backwards, fine motor coordination, and were better able to go from sitting to standing. Their quality of life also improved in perceived mental health, concentration, bladder control, walking, and vision, with a decrease in pain and fatigue.Source: Rutgers Copyright 2014, Rutgers, The State University of New Jersey (02/09/14)
- Taking steps. In the overall group and after adjusting for baseline differences, the mean daily sitting time in the intervention group at follow-up was 7.2 hours (SE 3.3), compared with 8.8 (SE 3.3, P<0.05) for the wait-listed controls. For the peer-protocol group, mean daily sitting time at follow-up was 6.8 hours (SE 3.5) with the intervention versus 8.9 (SE 3.5, P<0.05) for controls, Klaren reported.Primary source: Consortium of Multiple Sclerosis Centers and the Americas Committee for Treatment and Research in Multiple Sclerosis
Additional source: Consortium of Multiple Sclerosis Centers and the Americas Committee for Treatment and Research in Multiple Sclerosis
Source reference:Klaren R, et al "Efficacy of a behavioral intervention for reducing sedentary behavior in people with multiple sclerosis" CMSC-ACTRIMS 2014; Abstract RH04.
Source: MedPage Today © 2014 MedPage Today, LLC (04/06/14)
- Moderately Intense Activity. Study finds short bouts of moderately intense activity can have big impact on tiredness levels of people with MS.Multiple sclerosis sufferers can reduce the fatigue that accompanies their condition by undertaking short bursts of moderately intense exercise, such as walking or cycling, according to new research.Source: The Guardian © 2014 Guardian News and Media Limited (15/01/14)
- Yoga. Objectives: Yoga has been found to be effective for addressing problems with strength, flexibility, balance, gait, anxiety, depression, and concentration. Varying degrees of these problems occur in individuals with multiple sclerosis (MS). This study examined the effects of a comprehensive, 4-month yoga program on strength, mobility, balance, respiratory function, and quality of life for individuals with MS. Methods: Twenty four individuals with MS participated in an intensive Ananda Yoga training followed by 17 weeks of home practice. Results: Significant improvements in functional strength, balance, and peak expiratory flow and a trend toward improvements in mental health and quality of life outcomes were detected following the intervention. Conclusions: The results of this exploratory study suggest that yoga can have a positive impact on physical functioning and quality of life for persons with mild to moderate MS.
Salgado BC, Jones M, Ilgun S, McCord G, Loper-Powers M, van Houten P.Department of Physical Therapy, California State University, Sacramento, CA.
Sources: Int J Yoga Therap. 2013;23(2):27-38 & Pubmed PMID: 24165521 (08/11/13)
- Aerobic exercise can boost memory in people with multiple sclerosis (MS) by up to 54 per cent, a new study has found.Aerobic exercise resulted in a 16.5 per cent increase in hippocampal volume, a 53.7 per cent increase in memory, and increased hippocampal resting-state functional connectivity. Non-aerobic exercise resulted in minimal change in hippocampal volume and no changes in memory or functional connectivity.
Sunday, February 1, 2015
Bigger Than Me
Some ancient part of my brain says that the grammar gods want me to say: "Bigger than I (am big)." So, please forgive me if my title is grammatically incorrect! LOL.
Today is a "my-body-is-wrong" day. I have little energy and a fair amount of pain. Just can't seem to drag myself through most of the normal steps. Hate these days. I did not exercise. I am not going with the rest of my family to watch the Super Bowl (on TV). I find that on days like this I tend to not only lay low, but also to hide. Sometimes when people find out about the MS - they proclaim that they never would have known. Well, that's because I hide on these days so as not to let you know.
Hmm. Healthy or not so much? If you haven't figured it out already, I have a lot of pride. Too much, perhaps. I don't want others to see me struggle. I don't want the judgement or pity that might come with that. It's easier and more comfortable to just stay home.
Often when I run in 5k races I am at my most exposed. It's all out there if you want to see it. The vision loss, the uncoordinated gait, the loss of muscle control, the tripping. I'm not the least bid winded, but I can't get the legs to go. I hang out in the back of the pack and quietly work my way through the last quarter of the race. Some days are better than others, but there is never a race without a struggle. I've run thousands of miles in the past few years, and still can't drag myself to a respectable 5k time. So, why do I bother?
What I do find in the back of the pack is a community that is desperately in need of each other. First timers, young and old, folks battling illnesses, coming back from cancer, battling weight/body image issues, They are all there, in the back of the pack, working so very hard to accomplish this small but real goal. And, there is a lot of encouragement back there! I've encountered amazing spirits and healing words that make every step worth it. Yes, I've been beaten by a 6 year old and an 84 year old! BUT I've bonded with people everywhere in between and opened myself to their victories!
Victory is yours - even on a "my-body-is-wrong" day!
Today is a "my-body-is-wrong" day. I have little energy and a fair amount of pain. Just can't seem to drag myself through most of the normal steps. Hate these days. I did not exercise. I am not going with the rest of my family to watch the Super Bowl (on TV). I find that on days like this I tend to not only lay low, but also to hide. Sometimes when people find out about the MS - they proclaim that they never would have known. Well, that's because I hide on these days so as not to let you know.
Hmm. Healthy or not so much? If you haven't figured it out already, I have a lot of pride. Too much, perhaps. I don't want others to see me struggle. I don't want the judgement or pity that might come with that. It's easier and more comfortable to just stay home.
Often when I run in 5k races I am at my most exposed. It's all out there if you want to see it. The vision loss, the uncoordinated gait, the loss of muscle control, the tripping. I'm not the least bid winded, but I can't get the legs to go. I hang out in the back of the pack and quietly work my way through the last quarter of the race. Some days are better than others, but there is never a race without a struggle. I've run thousands of miles in the past few years, and still can't drag myself to a respectable 5k time. So, why do I bother?
What I do find in the back of the pack is a community that is desperately in need of each other. First timers, young and old, folks battling illnesses, coming back from cancer, battling weight/body image issues, They are all there, in the back of the pack, working so very hard to accomplish this small but real goal. And, there is a lot of encouragement back there! I've encountered amazing spirits and healing words that make every step worth it. Yes, I've been beaten by a 6 year old and an 84 year old! BUT I've bonded with people everywhere in between and opened myself to their victories!
Victory is yours - even on a "my-body-is-wrong" day!
Friday, January 30, 2015
SLEEP!!
Short days and long winter nights, make me want to sleep!!
The more regimented my sleep routine, the higher quality of sleep I get. I need a lot of sleep. It's embarrassing, really. But, the going to bed early is SO worth it when I wake up in the morning and feel rested and ready.
So, it's 9:40 pm. Time for bed! 5:30 will be here all too soon.
The more regimented my sleep routine, the higher quality of sleep I get. I need a lot of sleep. It's embarrassing, really. But, the going to bed early is SO worth it when I wake up in the morning and feel rested and ready.
So, it's 9:40 pm. Time for bed! 5:30 will be here all too soon.
Wednesday, January 28, 2015
Falls
I spent some time researching falls related to MS today. The statistics are crazy! What you see depends on what you read, but falls (causes and prevention) is a major topic of discussion within the MS community.
I am in the category of several falls per year. It's likely that 65% of MSers have fallen at least once in the past year. Many suffer multiple falls in that same time span.
For excellent information on falls and fall prevention, please read: Mnimizing-Your-Risk-of-Falls.pdf
My falls are mostly the tripping type. My left foot catches something higher than level like the sidewalk, a stone or a tree root. From there, it is an unpredictable fall to the ground. My falls are usually forward, but backward falls are quite common. When I practice a yoga squat, I am amused by the occurrence of a gradual, but almost certain, tip backward onto my butt. I can't quite balance in that position!
I decided it was time to learn more about HOW to fall. I work a lot on improving strength and balance, but the lack of feeling combined with visual impairment just inevitably leads to tumbles. So, when I do fall, I would like to know how to improve the odds that I do not hit my head or break any bones.
I enlisted a friend who is a karate instructor and personal trainer. Please, don't hesitate to seek out someone who knows more than you when you have something to learn! She was a wonderful resource and got others, including her husband, involved in teaching me a few techniques.
First, the karate studio was an excellent place to learn. The floors are padded and have additional mats available for practice. See if a local studio will work with you. I'm not necessarily suggesting that you take karate classes, but you may be able to connect with an instructor that will review falling techniques in a one-on-one environment.
We started by learning to fall backward and progressed to falling forward. We started in a seated position for falling backward and then moved to squatting. Starting low-to-the-ground was important for me, because I lacked the confidence to otherwise let myself go. The major things I learned were to:
I am in the category of several falls per year. It's likely that 65% of MSers have fallen at least once in the past year. Many suffer multiple falls in that same time span.
For excellent information on falls and fall prevention, please read: Mnimizing-Your-Risk-of-Falls.pdf
My falls are mostly the tripping type. My left foot catches something higher than level like the sidewalk, a stone or a tree root. From there, it is an unpredictable fall to the ground. My falls are usually forward, but backward falls are quite common. When I practice a yoga squat, I am amused by the occurrence of a gradual, but almost certain, tip backward onto my butt. I can't quite balance in that position!
I decided it was time to learn more about HOW to fall. I work a lot on improving strength and balance, but the lack of feeling combined with visual impairment just inevitably leads to tumbles. So, when I do fall, I would like to know how to improve the odds that I do not hit my head or break any bones.
I enlisted a friend who is a karate instructor and personal trainer. Please, don't hesitate to seek out someone who knows more than you when you have something to learn! She was a wonderful resource and got others, including her husband, involved in teaching me a few techniques.
First, the karate studio was an excellent place to learn. The floors are padded and have additional mats available for practice. See if a local studio will work with you. I'm not necessarily suggesting that you take karate classes, but you may be able to connect with an instructor that will review falling techniques in a one-on-one environment.
We started by learning to fall backward and progressed to falling forward. We started in a seated position for falling backward and then moved to squatting. Starting low-to-the-ground was important for me, because I lacked the confidence to otherwise let myself go. The major things I learned were to:
- tightly tuck the chin into the chest (to minimize risk of head impact)
- throw the arms out to the sides to absorb the majority of the impact
- roll on a curved back
Falling forward was harder. I started from a kneeling position.
- again, chin tucked into chest
- reach one arm across the chest and opposite shoulder
- roll forward onto the mid-back over the tucked shoulder
- continue the forward roll
Again, find a karate (or other martial arts) instructor to go over this with you. It takes some guts to try, but it does get easier after a few practice sessions.
Warning! When doing the forward rolls, I had to endure a high level of vertigo. Going through that motion left me quite dizzy for more than a few seconds. The dizziness decreased after several sessions, but never totally went away.
Interested in more information? Comment below, and I'll happily respond with more detail.
Additional suggestons? Would love to hear them!! Comment!!!!
Tuesday, January 27, 2015
Falling Down and Getting Back Up
I have spent some time in the past few months working with a wonderful friend and karate/fitness instructor on falling down and getting back up. Yes, literally, how to fall down and minimize injury. We have also worked on getting up from the floor.
Sound easy?
Well, it's pretty challenging for me.
Over the next several days, I will break down some of what I have learned about how to fall down (hopefully without hitting my head or breaking any bones) and getting back up when I'm down.
If you have knowledge of these or other techniques, jump right in and join the conversation. I'm no professional at this, but I am determined to better learn to fall WELL and to get back up as EFFICIENTLY as possible.
Thanks, Arlene, Frank and Mai for the wonderful instruction on this one! I promise to keep working hard to execute all you've taught me!
Check back over the next several days for details in technique and some safe ways to practice for the inevitable!
Sound easy?
Well, it's pretty challenging for me.
Over the next several days, I will break down some of what I have learned about how to fall down (hopefully without hitting my head or breaking any bones) and getting back up when I'm down.
If you have knowledge of these or other techniques, jump right in and join the conversation. I'm no professional at this, but I am determined to better learn to fall WELL and to get back up as EFFICIENTLY as possible.
Thanks, Arlene, Frank and Mai for the wonderful instruction on this one! I promise to keep working hard to execute all you've taught me!
Check back over the next several days for details in technique and some safe ways to practice for the inevitable!
Monday, January 26, 2015
Snow Bonanza!
So, we did receive the snow that was forecast. Woke up this morning to a beautiful blanket of fluffy, glorious white.
Snapped on the cross country skis and spent about 4.5 hours in the quiet, amazing forest.
While skiing, I thought a lot about what was good in the activity. My skiing is a bit like a plod - like a little faster than 2 mph. I stop often to look around and enjoy the amazing, winter quiet. There is some exercise involved, but mostly it's the place that revives me.
Do we all have that place (or those places) that feed our souls? Mine is most definitely outdoors, usually in a secluded or remote place. It can be a beach as easily as a winter wonderland, but I need to be outdoors and mindfully in that place.
Today was an amazing, healing day!
Get out in the winter if you can. Cross country skiing is accessible for many. It's a non-technical sport if you stay on mostly level trails. Rental skis are usually cheap and the wilderness is free. If you fall down, find a partner who is willing to help haul you back up. If skis are too much for your balance or strength limits, snow shoes are even easier. They still carry you to those wonderful, hidden places.
Take the ride!
Snapped on the cross country skis and spent about 4.5 hours in the quiet, amazing forest.
While skiing, I thought a lot about what was good in the activity. My skiing is a bit like a plod - like a little faster than 2 mph. I stop often to look around and enjoy the amazing, winter quiet. There is some exercise involved, but mostly it's the place that revives me.
Do we all have that place (or those places) that feed our souls? Mine is most definitely outdoors, usually in a secluded or remote place. It can be a beach as easily as a winter wonderland, but I need to be outdoors and mindfully in that place.
Today was an amazing, healing day!
Get out in the winter if you can. Cross country skiing is accessible for many. It's a non-technical sport if you stay on mostly level trails. Rental skis are usually cheap and the wilderness is free. If you fall down, find a partner who is willing to help haul you back up. If skis are too much for your balance or strength limits, snow shoes are even easier. They still carry you to those wonderful, hidden places.
Take the ride!
Sunday, January 25, 2015
Friday, January 23, 2015
What's Hard?
Tough question, right?
What's hard for you?
Your answer and mine might seem worlds apart. I'm guessing, however, that there is more in common than differs. I think if each of us would take the time to truly reflect on this question, then gather and share (be it in person, or online), what we would find is that the specific details may differ from person to person (and MS course to MS course) but that the deeper struggles are quite similar.
Let's be totally honest - this disease is a real kick in the pants. It robs us of much we once took for granted. It's quite a blow to absorb! Add to that the transient nature of the disease with its good and not-so-good periods and the ever-changing challenges, and it is enough to push the confidence right over the brink.
For me, standing up to my fears is about meeting them as head on as possible. I can't feel my left leg from just above the knee down through the toes. My balance is terrible. So, what do I do? I try to run. It's not always pretty and the results include falls, bumps, and bruises. But the bigger picture results are strength and resilience and the emotional confidence to continue. I slur my speech when I talk for a long period of time. So, I coach and teach where I must speak in public for lots of hours. I expose myself and push through as best I can.
What's hard? I'll tell you what's hard for me - it's the talking about all of this. I RARELY ever tell anyone that I have this disease, and I almost never tell anyone about the struggles. It's a giant locked box. For better or for worse, that's what's hard for me! Maybe this blog is an attempt to blow out of that box and share some of what I've fought with and what I've learned. Maybe the conversation would be cathartic for us all.
There's no pity party here - no feeling sorry for myself, but what there can be is genuine empathy and sympathy that helps us deal with loss and move on through it as a community. Whether you have MS or love someone who struggles, I invite you to share your losses and triumphs so we can find from each other help in building the strength to answer and battle "What's Hard?"
And then move forward.
What's hard for you?
Your answer and mine might seem worlds apart. I'm guessing, however, that there is more in common than differs. I think if each of us would take the time to truly reflect on this question, then gather and share (be it in person, or online), what we would find is that the specific details may differ from person to person (and MS course to MS course) but that the deeper struggles are quite similar.
Let's be totally honest - this disease is a real kick in the pants. It robs us of much we once took for granted. It's quite a blow to absorb! Add to that the transient nature of the disease with its good and not-so-good periods and the ever-changing challenges, and it is enough to push the confidence right over the brink.
For me, standing up to my fears is about meeting them as head on as possible. I can't feel my left leg from just above the knee down through the toes. My balance is terrible. So, what do I do? I try to run. It's not always pretty and the results include falls, bumps, and bruises. But the bigger picture results are strength and resilience and the emotional confidence to continue. I slur my speech when I talk for a long period of time. So, I coach and teach where I must speak in public for lots of hours. I expose myself and push through as best I can.
What's hard? I'll tell you what's hard for me - it's the talking about all of this. I RARELY ever tell anyone that I have this disease, and I almost never tell anyone about the struggles. It's a giant locked box. For better or for worse, that's what's hard for me! Maybe this blog is an attempt to blow out of that box and share some of what I've fought with and what I've learned. Maybe the conversation would be cathartic for us all.
There's no pity party here - no feeling sorry for myself, but what there can be is genuine empathy and sympathy that helps us deal with loss and move on through it as a community. Whether you have MS or love someone who struggles, I invite you to share your losses and triumphs so we can find from each other help in building the strength to answer and battle "What's Hard?"
And then move forward.
Thursday, January 22, 2015
But, I Can't Exercise
But, I Can't Exercise... I Can't Walk... I'm not coordinated enough... I'm way to tired afterward... I hurt... I'm too weak... I lose feeling and coordination when I'm hot... I don't like it... I'm afraid...
Studies have shown that people with MS exercise less than the general population - and, folks, the general population is not exercising enough. So, we are mopping up the basement in this category.
The CAN'Ts are real, but we have got to take steps to turn them around. This is not a one-step process for any of us. Small modifications can lead to additional changes in activity and so on.
There is clear evidence that exercise affects both the body and the mind. Mood improvement/stabilization is touted as a major reason why runners self report that they do what they do and love it along the way. The more we move, the more we benefit, the more we need to move. It's a wonderful, upward cycle.
Check out: http://www.overcomingmultiplesclerosis.org/Recovery-Program/Exercise/ for another take on this same subject.
Don't know where to start? Try the Exercise tab or the Training Plans tab for some get-up ideas.
Get your MOVE on!
Studies have shown that people with MS exercise less than the general population - and, folks, the general population is not exercising enough. So, we are mopping up the basement in this category.
The CAN'Ts are real, but we have got to take steps to turn them around. This is not a one-step process for any of us. Small modifications can lead to additional changes in activity and so on.
There is clear evidence that exercise affects both the body and the mind. Mood improvement/stabilization is touted as a major reason why runners self report that they do what they do and love it along the way. The more we move, the more we benefit, the more we need to move. It's a wonderful, upward cycle.
Check out: http://www.overcomingmultiplesclerosis.org/Recovery-Program/Exercise/ for another take on this same subject.
Don't know where to start? Try the Exercise tab or the Training Plans tab for some get-up ideas.
Get your MOVE on!
Tuesday, January 20, 2015
(re)Discovering Balance: Two Tools
Today you will find an update on the Balance page of the blog.
I've introduced (or encouraged) the use of two tools for (re)Discovering Balance. One is a Visual Focal Point, the Drishti; the other is a Sensory Focal Point, a light touch.
Give it a read! Comment for more info or to join the conversation!
I've introduced (or encouraged) the use of two tools for (re)Discovering Balance. One is a Visual Focal Point, the Drishti; the other is a Sensory Focal Point, a light touch.
Give it a read! Comment for more info or to join the conversation!
Monday, January 19, 2015
Overly Simplistic?
Let's ask an obvious question here: Are any of these small ideas likely to lead to measurable changes?
I do not have the luxury of conducting rigorous, double-blind studies to test my theories. I cannot lay any claim to any results.
What I am suggesting is that it is worth making small changes in activity levels to try to impact the course of this disease.
I feel like medical intervention can be a wonderful, life-saving modality. However, I see health care intervention as a spectrum, a ladder, if you will. My theory is to test and exhaust the least risky and least invasive approaches first, and move up the ladder to more expensive and risky interventions as the lower level approaches do not yield satisfactory results.
Are you willing to try some minimal exercises and lifestyle changes for a short time and to test and measure if there are results for you? If not, please move on to the bigger things right away. BUT if you are willing to try some other approaches, I have a few suggestions to lead you to reasonable, non-technical, non-medical trials.
Worth a try? It sure is for me. Your path is fully up to you!
I do not have the luxury of conducting rigorous, double-blind studies to test my theories. I cannot lay any claim to any results.
What I am suggesting is that it is worth making small changes in activity levels to try to impact the course of this disease.
I feel like medical intervention can be a wonderful, life-saving modality. However, I see health care intervention as a spectrum, a ladder, if you will. My theory is to test and exhaust the least risky and least invasive approaches first, and move up the ladder to more expensive and risky interventions as the lower level approaches do not yield satisfactory results.
Are you willing to try some minimal exercises and lifestyle changes for a short time and to test and measure if there are results for you? If not, please move on to the bigger things right away. BUT if you are willing to try some other approaches, I have a few suggestions to lead you to reasonable, non-technical, non-medical trials.
Worth a try? It sure is for me. Your path is fully up to you!
Thursday, January 15, 2015
Foot Drop
New Page Added: Foot Drop
I've added a super simple exercise to address foot drop. Check out the page for more details.
Thought for today:
Keep up the good fight! It's worth it!
I've added a super simple exercise to address foot drop. Check out the page for more details.
Thought for today:
Keep up the good fight! It's worth it!
Wednesday, January 14, 2015
Walking Cadence (and that Journal you now have!)
Ever notice you tend to habitually do things at the same rate time after time? It likely takes a similar amount of time each day to tie a shoe or brush your teeth. Habits make activities more efficient.
Your walking cadence is likely affected by habit. You have found a place where you are comfortable and that is your predominant turnover rate. This is not to say that you don't sometimes walk faster or slower, but this rate is your typical cadence.
Do you know what it is? If you use a smart phone you can download a simple metronome app. Use this tool to explore your typical cadence and record it. Occasionally, check your cadence and if you are really motivated chart it. Watch for changes and try to understand why those changes have occurred.
As an exercise, try setting the metronome to a small percentage faster than you are used to. Walk for two minutes (on a level, safe surface) at this pace. Tune in and see what changes you notice in your gait. Can you relax and go with the increased rate? Do you have more trouble turning over one foot than the other? Are you more stiff? Can you do it at all???
Over time, play with this exercise. Try slowing the cadence down and being more deliberate with each foot strike. Balance issues may enter the picture at some slower rate. You may notice foot/toe drop or a tendency to "slap" your foot instead of rolling heel to toe. Can you overcome the foot drop or foot slap if you intentionally slow things down?
Try faster exercises. Try variable rates. Advanced: try marching in place with progressively higher knees. Walk sideways or backward.
Are you willing to practice all of this - maybe twice per week for 5 or 10 minutes?
As with most things MS, just because you can't do something today does not automatically mean you can not do it in the future. Try and try again. Even if you are not fully mobile, this exercise may still be within reach. Hold on, use an assistive device, hold someone's arm, slow down and be patient with yourself!
Get out that journal and record your experiences!! Be mindful of your cadence and be willing to play with your limits.
See the training plan for this post (Cadence on the Training Plans page).
I wish you all the best in testing this one! Comment below. We need more voices!! :)
Ever notice you tend to habitually do things at the same rate time after time? It likely takes a similar amount of time each day to tie a shoe or brush your teeth. Habits make activities more efficient.
Your walking cadence is likely affected by habit. You have found a place where you are comfortable and that is your predominant turnover rate. This is not to say that you don't sometimes walk faster or slower, but this rate is your typical cadence.
Do you know what it is? If you use a smart phone you can download a simple metronome app. Use this tool to explore your typical cadence and record it. Occasionally, check your cadence and if you are really motivated chart it. Watch for changes and try to understand why those changes have occurred.
As an exercise, try setting the metronome to a small percentage faster than you are used to. Walk for two minutes (on a level, safe surface) at this pace. Tune in and see what changes you notice in your gait. Can you relax and go with the increased rate? Do you have more trouble turning over one foot than the other? Are you more stiff? Can you do it at all???
Over time, play with this exercise. Try slowing the cadence down and being more deliberate with each foot strike. Balance issues may enter the picture at some slower rate. You may notice foot/toe drop or a tendency to "slap" your foot instead of rolling heel to toe. Can you overcome the foot drop or foot slap if you intentionally slow things down?
Try faster exercises. Try variable rates. Advanced: try marching in place with progressively higher knees. Walk sideways or backward.
Are you willing to practice all of this - maybe twice per week for 5 or 10 minutes?
As with most things MS, just because you can't do something today does not automatically mean you can not do it in the future. Try and try again. Even if you are not fully mobile, this exercise may still be within reach. Hold on, use an assistive device, hold someone's arm, slow down and be patient with yourself!
Get out that journal and record your experiences!! Be mindful of your cadence and be willing to play with your limits.
See the training plan for this post (Cadence on the Training Plans page).
I wish you all the best in testing this one! Comment below. We need more voices!! :)
Monday, January 12, 2015
Music and Movement (and a Journal)
"Backwoods folks is old and brittle
But they sway like a tree to the sound of a fiddle"
Michelle Shocked Lyrics from "Contest Coming"
Ever seen those crazy YouTube videos of someone dancing enthusiastically at a wedding reception. It all starts out really good, but usually ends in a major crash. I'm always amazed at how well some of the people are able to dance - looks alone tell me they should be much less agile.
What is the role of muscle memory in MS? Those long-beaten neural pathways become scarred and impede the motions that were once so fluid. BUT do the muscles "remember" how to do what they once did? Can we burn new neural pathways to access those memories?
Here's a challenge for today. When you have some down time, go into a room all by yourself. Listen to some music that really moves you or evokes a strong memory. Turn the lights down a bit. Now, just stand or sit and sway to the music. If the ability is there, walk to the music - or just take baby steps in place - or even shift your weight. Attempt to progress in any way that feels accessible, side to side steps, marching, dancing, lifting one leg... Let your mind and body lead you.
Then, add some arms. Sway like that tree. Reach up, out to the side, do curls, swim... Again, whatever moves you. Bend, twist, reach (from a standing, sitting, or even prone position). Explore the movement...
Focus on the music and let the movement come from a deeper, less intentional place. When the song is over, stop. Smile - no matter what the outcome of the experiment.
Now, take a minute and write down your observations. "I found I could..." "I was surprised I could..." "I was limited by..." "I would like to..." "This could progress to..." I am upset that..."
and "Next time, I will..."
Then, after a day or two repeat. In fact, repeat this exercise. Do this 4 or 5 times in total. Always include the journal entry afterward.
What did you notice? Patterns? Increases: Decreases? Joy? Frustration? Freedom? Journal it!
After some time passes (I usually aim for the next season) - repeat the entire exercise. Move and journal a few times each season of the year and see where this small, intentional journey leads you.
I am NO dancer, but this exercise has led me to explore limits in my motion and areas where I would like to improve. It has led to tears of sadness as I deal with what I have lost, and tears of joy as I celebrate what I can still do. It is a physical exercise with a strong emotional component.
I hope you "sway like a tree!"
Log your thoughts here. I'd love to hear your reactions!!
Sunday, January 11, 2015
Is This Blog Worth Checking Out?
If you are looking for general information about the disease, in all of its many forms, there are many sites with fantastic information. The National MS Society is fantastic. A quick Google search will give you the basics. www.nationalmssociety.org
If you are looking for advice on living with MS, check out: http://debbiepetrina.authorsxpress.com/
If you are looking for stories and reflections about people's personal experiences, try: http://www.msbloggers.com/p/ms-blogging-community.html
With all these great resources and amazing people who have put in countless hours researching, organizing, and writing, why, oh why, should you stick around here?
LOL! I'm actually asking myself that question as I type.
I'm hoping I can offer you this: I have somehow lived through 20 years of this disease and come out in a pretty desirable place. My MS is best categorized as relapsing/remitting, but even in remission the damage that has been done imposes limitations.
Through this blog I hope to share some of the hope and positivity that have come with victories, large and small. I would like to encourage you to be active in understanding your disease and your body. Finding real limits - without assumptions - is crucial. Any time you assume you cannot do something, you are doomed to not be able to move past that limitation. I fully realize there are boundaries, immutable lines, but I want to know where they are without any errant assumptions caused by fear or hopelessness.
If you would like to join the conversation, you are SO WELCOME here! If my ideas are too much - challenge me. If my ideas challenge you, we have found a reason for you to visit this site!!
If you are looking for general information about the disease, in all of its many forms, there are many sites with fantastic information. The National MS Society is fantastic. A quick Google search will give you the basics. www.nationalmssociety.org
If you are looking for advice on living with MS, check out: http://debbiepetrina.authorsxpress.com/
If you are looking for stories and reflections about people's personal experiences, try: http://www.msbloggers.com/p/ms-blogging-community.html
With all these great resources and amazing people who have put in countless hours researching, organizing, and writing, why, oh why, should you stick around here?
LOL! I'm actually asking myself that question as I type.
I'm hoping I can offer you this: I have somehow lived through 20 years of this disease and come out in a pretty desirable place. My MS is best categorized as relapsing/remitting, but even in remission the damage that has been done imposes limitations.
Through this blog I hope to share some of the hope and positivity that have come with victories, large and small. I would like to encourage you to be active in understanding your disease and your body. Finding real limits - without assumptions - is crucial. Any time you assume you cannot do something, you are doomed to not be able to move past that limitation. I fully realize there are boundaries, immutable lines, but I want to know where they are without any errant assumptions caused by fear or hopelessness.
If you would like to join the conversation, you are SO WELCOME here! If my ideas are too much - challenge me. If my ideas challenge you, we have found a reason for you to visit this site!!
Day of Rest
Today, for me, is a day of rest. These re-grouping days are a great change of pace from a life filled with kids activities, work, and basic tasks.
Rest, of mind and body, gives us a chance to refocus. I find I need more down time than almost anyone I know. People tend to see me as someone who goes non-stop, but what they don't realize is how that comes from rest: sleep at night, naps during the day, and days of rest.
Take some time for rest and rejuvenation as you are able. Enjoy!
Today, for me, is a day of rest. These re-grouping days are a great change of pace from a life filled with kids activities, work, and basic tasks.
Rest, of mind and body, gives us a chance to refocus. I find I need more down time than almost anyone I know. People tend to see me as someone who goes non-stop, but what they don't realize is how that comes from rest: sleep at night, naps during the day, and days of rest.
Take some time for rest and rejuvenation as you are able. Enjoy!
Saturday, January 10, 2015
Unpredictability of MS
Today, I am thinking a lot about how unpredictable this crazy disease is. The outcomes vary wildly among individuals and degree of disability seems like a crap shoot. This leaves everyone affected with MS wondering the BIG "What if's..." and can truly take a toll on psychological well being. I'm convinced that the stress of worrying about what will happen wears us down and makes matters worse.
How do we live each day fully without the worry of what tomorrow will bring? Wow, wouldn't it be great if I had the answer to that one! :)
For me, taking control of what I can control is a major part of building security and emotional well being. If I am able to exercise today, I do! And, I believe it will help me have a better tomorrow. If I have a food choice to make that I think can tip the scales in my favor, I try to make the right choice. If I have the chance to reach out and help someone else, I do.
All of this is no insurance policy against the disease! I do not believe the choices I have made have determined my course of MS. I do not believe the choices others have made have led them to more or less disability.
What I do believe is that I should do everything I can at every juncture I recognize to tip the scales in my favor. What harm can there be in this? If I am wrong, I will be healthier and happier in my mistake. If I am right, I might just make my life a little less challenging.
I would love to hear your story about how you deal with the emotional challenges of MS. Successes? Share them! Questions? Ask them.
On the journey...
Today, I am thinking a lot about how unpredictable this crazy disease is. The outcomes vary wildly among individuals and degree of disability seems like a crap shoot. This leaves everyone affected with MS wondering the BIG "What if's..." and can truly take a toll on psychological well being. I'm convinced that the stress of worrying about what will happen wears us down and makes matters worse.
How do we live each day fully without the worry of what tomorrow will bring? Wow, wouldn't it be great if I had the answer to that one! :)
For me, taking control of what I can control is a major part of building security and emotional well being. If I am able to exercise today, I do! And, I believe it will help me have a better tomorrow. If I have a food choice to make that I think can tip the scales in my favor, I try to make the right choice. If I have the chance to reach out and help someone else, I do.
All of this is no insurance policy against the disease! I do not believe the choices I have made have determined my course of MS. I do not believe the choices others have made have led them to more or less disability.
What I do believe is that I should do everything I can at every juncture I recognize to tip the scales in my favor. What harm can there be in this? If I am wrong, I will be healthier and happier in my mistake. If I am right, I might just make my life a little less challenging.
I would love to hear your story about how you deal with the emotional challenges of MS. Successes? Share them! Questions? Ask them.
On the journey...
Friday, January 9, 2015
Exercise?
YES!
Yes, to exercise - as much and as often as you are able.
I am not a going to sell any products, plans, or endorse any one type of exercise. The goal is to find what works for you today and DO IT. Something else might work better next week, but, for today, find a modality that works.
Yes, I run, I lift, I stretch, I do circuits, I walk, I practice yoga, I kayak, I play soccer, I swim, I hike, I ski...
But I don't endorse any one of these - I search for the ones that work to help me meet my goals of staying strong, flexible, and active (without hurting myself). Again, it's one day at a time.
I have found many, many modifications that allow me to get a lot out of every session. No balance, no problem! Low vision, we can address that! Tight muscles, we'll loosen them! Trouble sleeping, exercise can help! Don't be afraid to modify!! And, if something truly is not working, scrap it and try something else. Just because it doesn't work now, doesn't mean it won't work in the future. Revisit the exercise at another time.
Check out the Exercise page for "First Thing's First" (new today).
Check out the Training Plans page for a Pre-Conditioning Walking plan (new today).
Feel free to comment on what works for you or ask any questions you many have about how to go about exercise. I will try to post on a variety of approaches. Your requests are encouraged!
Yes, to exercise - as much and as often as you are able.
I am not a going to sell any products, plans, or endorse any one type of exercise. The goal is to find what works for you today and DO IT. Something else might work better next week, but, for today, find a modality that works.
Yes, I run, I lift, I stretch, I do circuits, I walk, I practice yoga, I kayak, I play soccer, I swim, I hike, I ski...
But I don't endorse any one of these - I search for the ones that work to help me meet my goals of staying strong, flexible, and active (without hurting myself). Again, it's one day at a time.
I have found many, many modifications that allow me to get a lot out of every session. No balance, no problem! Low vision, we can address that! Tight muscles, we'll loosen them! Trouble sleeping, exercise can help! Don't be afraid to modify!! And, if something truly is not working, scrap it and try something else. Just because it doesn't work now, doesn't mean it won't work in the future. Revisit the exercise at another time.
Check out the Exercise page for "First Thing's First" (new today).
Check out the Training Plans page for a Pre-Conditioning Walking plan (new today).
Feel free to comment on what works for you or ask any questions you many have about how to go about exercise. I will try to post on a variety of approaches. Your requests are encouraged!
Thursday, January 8, 2015
TOO Cold !!??!!
Some days you just have to face reality and throw in the towel. Temperatures outside were below zero early this morning and have now climbed to 2 F.
So, the workout for today was indoors. I made a date with the treadmill and kept it. All good.
Today, I will work on some thoughts about the treadmill. If you are interested, go to the treadmill tab.
Do you have access to a treadmill? Would you use it (if you were able)? Can I help you get started? get motivated? be efficient? be safe? advance?
Comment here or check out the treadmill page for more details.
Also, I added some yoga video links to the Strength and Coordination page. Let me know if this is useful!
So, the workout for today was indoors. I made a date with the treadmill and kept it. All good.
Today, I will work on some thoughts about the treadmill. If you are interested, go to the treadmill tab.
Do you have access to a treadmill? Would you use it (if you were able)? Can I help you get started? get motivated? be efficient? be safe? advance?
Comment here or check out the treadmill page for more details.
Also, I added some yoga video links to the Strength and Coordination page. Let me know if this is useful!
Wednesday, January 7, 2015
Baby, It's Cold Outside
As the temperatures are set to dip into single digits, it seems timely to address how the cold affects MS. I think it is widely understood that heat triggers a number of MS symptoms. What those of us who have lived through some cold winters know, cold is NO friend either.
Typically, I function best when the ambient temperature ranges from 60-72 degrees F. Outside that (tiny) range, there is trouble - with vision, gait, balance. It goes without saying that those "perfect" days are few and far between. So, how is a person with MS supposed to get out and exercise when facing these limitations?
Some cold-weather thoughts:
Typically, I function best when the ambient temperature ranges from 60-72 degrees F. Outside that (tiny) range, there is trouble - with vision, gait, balance. It goes without saying that those "perfect" days are few and far between. So, how is a person with MS supposed to get out and exercise when facing these limitations?
Some cold-weather thoughts:
- Outside activity is not always possible - BUT it is almost always possible. I find that if I get outside to exercise I am amazed at how positive an experience it becomes.
- Layers are your friend. Wear more layers than even those who are with you, The trick is to then be flexible enough with your activity to stop and take off layers as your body temperature increases. Crazy as it sounds, I am known for strewing layers as I go - hanging them on stop signs, tree limbs. I have lost a few pieces along the way, but usually as I circle back they are waiting for me. Layer up!
- That said, expose as much skin as is prudent. Today it's too cold, but in cold (but not frigid) weather, I try to expose a bit of skin to the sun for short periods of time. The Vitamin D is awesome and may have a protective effect with MS progression.
- Don't slip! If your balance or gait is compromised, venturing out in icy conditions is not advisable. Snow itself is not generally slippery and makes a fantastic running or walking surface! Trudge through that snow!
- Invest in a good pair of boots with real traction. I also have Gortex running shoes with substantial bottoms that are great for walking or running in smaller amounts of snow.
- Warm up before you go outside. To whatever extent you are mobile, walk on the treadmill, hike the stairs, stand up/sit down for several minutes before you head out.
- Carry your phone!
- Upon arrival back inside, get the cold or wet clothes off your body. Bundle up in your cozies and drink water followed by something that warms you up and makes you feel toasty.
Let the journey begin!
It's a cold, blustery day ... seems like a good day to start something new!
I've never blogged before, so I hope you will bear with me as I give this a whirl. My goal is to share some of the information I have gathered over the past 20 years in hopes of starting some meaningful discussions about Living Well With MS. Not every day is a good day, but every day is an opportunity to take steps toward tomorrow being a better day.
My goal is to add information to the tabs listed here. It won't all happen at once, but if you visit frequently, I hope you will find some food for thought.
I welcome you comments / ideas / questions.
Coach Ang
It's a cold, blustery day ... seems like a good day to start something new!
I've never blogged before, so I hope you will bear with me as I give this a whirl. My goal is to share some of the information I have gathered over the past 20 years in hopes of starting some meaningful discussions about Living Well With MS. Not every day is a good day, but every day is an opportunity to take steps toward tomorrow being a better day.
My goal is to add information to the tabs listed here. It won't all happen at once, but if you visit frequently, I hope you will find some food for thought.
I welcome you comments / ideas / questions.
Coach Ang
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