My MS Doesn't Scare Me Anymore
After months and months of planning and preparation MuckFest 2015 is in the books. Team Healthcarejourney.com did an amazing job both fundraising (the money goes to the National MS Society) and running through the crazy muck filled obstacle course. We had top 10 finishers in team fundraising, individual fundraising and running the obstacle course.
This year’s fundraising total was $6,200 up from $4,000 from the last event in 2013. Between our two main fundraising events we raised nearly $4,000. Our raffle put on by the Beer Connoisseurs of Southeast Michigan was a hit bringing in over $3,000. My appreciation and gratitude goes out to the Connies, a great group of people with big hearts and a passion for craft brews. Our second and culminating event was a concert at a local venue featuring Plymouth rockers the Velvet Fairground, the concert was well attended and brought in $500.
Two members of our group of Muckers brought in enough donations to crack the top 10 list for individual fundraising! Eric Rayner brought in $2,000, a big thank you to Eric and his fellow Quicken Detroit teammates! Along with Eric I was lucky enough to bring in nearly $1,500, thank you everyone that donated and participated in our events. On the obstacle course teammate Jason Vallimont came in 4th place overall during the competitive wave!
I am so proud of our team; we raised enough money to win every single incentive offered by the NMSS for fundraising. Tons of t-shirts, a team tent even free beers! Not to be lost in all of the fun that was had and mud that was slung is the most important fact of all, we helped fund vital MS research and helped provide services to many MSers in need. To date MuckFest has helped raise over $20,000,000.
Fundraising for MS is something near and dear to my heart, 5 years ago I was destroyed by the diagnosis. When people would ask why I was limping, I always said “car accident”, which was slightly true, but not the whole truth. To think that over the years I have been able to embrace my diagnosis and even fight back. No longer do I hide the fact that I have MS I will tell anyone. MS doesn’t scare me anymore, why should it? My friends, family and community are here to catch me when I fall and lift me up even higher when I get back up!
Be a warrior today,
Five things in the news about MS
As I do research each month to try and find new ideas and discoveries in the news about Multiple Sclerosis, I'm finding new ideas difficult to find this month.
A white paper published in March by the National MS Society titled Wellness for People with MS outlines the findings from a group of professionals.
This excerpt from the paper summarizes their findings.
People living with MS identify wellness as a high priority in their lives. They want to know what they can do today – particularly related to diet, exercise and emotional wellness – to feel and function at their best. In addition, they want the support of knowledgeable healthcare professionals who are armed with accurate information about wellness interventions, as they pursue their wellness goals. At a recent meeting convened by the National MS Society, people with MS, healthcare professionals, researchers and society staff summarized what is currently known about diet, exercise and emotional issues in MS; identified key questions to be answered in each of these areas, along with the research gaps and challenges to be addressed in order to arrive at the answers; made specific program recommendations to ensure that people living with MS are getting the personalized support and information they need to achieve wellness; and outlined next steps to move this important priority forward.
After reading this paper, I reflect back on my history and on moving forward. I have so many unanswered questions. Obesity has been a major issue in my life both as a child and as an adult with MS. Approximately ten years ago, I underwent a gastric bypass and had extreme success. I was able to lose 200 pounds. The following year, I was diagnoses with MS. However, doctors felt that I probably had been living with the disease for many years. I have been obese my entire life and probably my heaviest between 20 and 30 years of age. Was MS caused by dietary intake? The answers to this question has not been researched enough. Does dietary intake increase relapses? What role does exercise play in MS? Hopefully with new research we will finally get some answers to these questions. Over the past ten years, I maintained the weight loss up until year eight, when I gradually started gaining again. I immediately returned to the weight loss experts, who didn't have enough data past eight years post op to give me any direct answers, and continue to struggle with definitive answers about obesity.
So where does that leave us as patients? Here is what I know and what my research seems to make me believe.
Eating healthy,nutritious food is essential in managing life with MS. There is no miracle diet in MS. Some believe in a low saturated fat diet, gluten free diets, fruit instead of refined sugar, no diet sodas, low fat dairy products, Paleo Diet and the list goes on. All of this is just very confusing to me. What I've learned is no one diet works for everyone. Keep saturated fats below 15 gms a day. That's a basic fact for anyone. It's really OK to have a piece of birthday cake. Don't do it every day, choose fruits more often. Eat vegetables (easier said than done for some of us). Asparatane, caffeine and alcohol can increase bladder issues if you have those health problems related to MS. However, you aren't going to get MS by drinking diet soda. As for the caffeine, it might reak havoc with your sleep. There have been studies that suggest a higher incidence of gluten intolerance in MS patients and their family members. This doesn't mean every MS patient should be gluten free. Hopefully, my thoughts are are depicting my true thoughts. There are no definite answers. What works or doesn't work for me may or may not work for you. Try things, be open to new ideas. Maybe one thing will work.
That leads me to exercise. Move it or lose it seems like a good place to start. That said, for those of us with MS this is not always easy. I know it sure isn't for me. My balance fatigue and general health make exercise very difficult. It also doesn't help with decreasing or maintaining weight loss. Here's my advice. Take one day at a time. Every little bit or step helps. Use friends to help motivate you. Even sedentary movement helps. There may not be a cure for our disease, but it's not fatal. We all have different issues to deal with. Heart disease and cancer are the two highest causes of death in MS and yes in the general public. See we are just like everyone else. Whether it's fatigue, numbness, depression, bladder issues, or obesity, my biggest mantras are: one day at a time, one step at a time, and everything in moderation.
I may not have given you five things in the news this month but hopefully this note has helped someone in some little way. Try and take what's hopefully going to be good weather coming soon and get outside and move, even if it's just one step at a time.
A BIT ABOUT SUSAN...Susan is a registered nurse who worked in high risk obstetrics at Brigham and Women's for twenty years. She is also a certified nurse paralegal. She is currently not practicing as she is disabled because of MS. She was diagnosed 8 years ago with RRMS and has a daughter who also has MS.
Yoga is for everyone
Yoga is for everyone. With so many types, you can find a type that resonates with you. For me, it’s Kundalini Yoga. I am in need of physical, emotional and spiritual healing, and practicing Kundalini Yoga provides that for me.
In the West, when we hear the word “Yoga,” we often think of physical postures. Lots of stretching and sweating. If you have never really enjoyed an exercise routine, the mind instantly decides, “Yoga, that’s not for me. That’s for flexible types.” And sure, many yoga classes in the U.S. are comprised of thin, spandex-clad people who are tackling yoga like they may tackle the rest of their day, with a go hard or go home mentality. This is so prevalent that now there are classes and DVDs labeled “Yoga for the Rest of Us,” as if Bikram is the standard and the rest of us need to somehow dumb down yoga so that our inflexible and out-of-shape bodies can perform it. So not true! Again, it is worth repeating, Yoga is for all of us. We just have to find the Yoga that makes us feel like we are coming home.
For the last month my Multiple Sclerosis fatigue has not allowed me to do much physical yoga. If I over-stretch or do a repetitive motion one-too-many-times, I don’t recover for a week. So, instead I have taken on a half hour meditation to do daily, one that was emotionally too draining for me to do a year ago. Now, I may be weaker physically but I am strong enough emotionally to do this aspect of yoga. I can also do long breathing exercises, which helps me with my stress response. I do the few simple physical movements I can do. And I feel so much better after I have done them! I make sure to include deep relaxation because that is just as important as the exercise component of Yoga. And on those days where I am so exhausted that I can’t get to any of it? I VISUALIZE. The Mind Body Connection is a real and powerful thing. Try it. If you are unable to complete any stretch or pose that you would like to be able to do, but that your body won’t allow or you know it’s best not to do at this time, visualize and your muscles will still fire. You will still be using the neuronal pathways to perform this function even if it looks like to the outsider that you are doing nothing.
Bring Yoga into your life any way you can. Get some DVDS and books at the library. You can find Kundalini Yoga exercise sets (Kriyas) and meditations all over the internet. Here are a few of my favorite sites:
Joining a Yoga community was an invaluable step for me. So when you have the physical strength to get yourself to a studio, do it. Even if you spend the whole class laying down and visualizing, you are being held in a sacred space by people who instantly care for you. And many studios, such as Kundalini Yoga Boston, offer discounts to clients with Multiple Sclerosis. Furthermore, the National MS Society will reimburse $50 a year towards fitness and wellness classes. It may not be much but it will get you into the door and may be the very excuse you need to come home to yourself.
The Journey Continues...
Summer break has been very active around here; we’ve taken trips to the beach and had endless BBQ’s. I will be sad to see summer go but as I look back I’m happy with the progress made in my ongoing journey towards a life less dominated by MS.
Getting back to Yoga Moves MS was great, I love the positivity and energy that Mindy and her team bring to each class. Being able to experience the power of the mind and body at work is a wonderful thing. MS plays a varying role in each class members life but while they are in class they are focused yogi’s and push their bodies and center their minds.
Over the summer I was able to spend a lot of time with my soon to be two year old son, which was so great. Together we played in the park, hit some whiffle balls and found as many pieces of heavy machinery and tractors as possible. Finding heavy machinery is not difficult as we live in Michigan the road work capital of the galaxy! In order to get to the parks in our neighborhood it is about a three block walk in either direction which my toddler can do no problem, me on the other hand…I get winded, but I can walk straight through to either park.
Just being able to walk to the end of my driveway was a goal of mine less than a year ago, now I’m able to walk all over the place but I need to build up my stamina both physically and cardio-wise. So I’m going to start timing my walks to the park with an end goal of eventually jogging there. I was never a big runner unless you count basketball, but now that I’m unable to run it’s been eating me up. It’s been nearly seven years since I last ran but I figure with some hard work and dedication I should be able to run right? I tried to run the other day and let’s just say it’s going to take a ton of practice I feel like a baby deer trying to get my legs underneath me! I will keep you updated and I will try to record some of it for your viewing pleasures.
Be a Warrior Today,
Calling All Yoga Experts! What Resources Should We Add To This List To Help People with MS?
Since I am a yoga instructor who also has MS, I am interested in spreading the word about yoga for MS! I have put together a list of resources…if you know of any others please type them in the box below so we can add them to the site!
A good overall article explaining why yoga is beneficial for MS
http://www.nationalmssociety.org/Living-Well-With-MS/Health-Wellness/Exercise/Yoga This gives a good overview of the styles and lots of quick resources.
I like this whole page. And then if you click on the top link, they have teachers trained in teaching students with MS.
This is from MS Active Source (it gives a breakdown of how yoga helps each symptom and a 3-level DVD set, online videos of poses too)
This is a great book…it is the one I used to start my yoga practice!
The author's website
A chair yoga website where you can locate teachers
Wonderful yoga teacher. My best recommendation for restorative yoga (also known as Yin yoga)
This is a good article about using a chair for yoga
Thanks so much!
MS, Exercise & Fatique
MS, Exercise & Fatigue
If you have read any of my previous blogs then you probably know that I have been rowing in an adaptive program for about a year now. At the same time, I started Tecfidera and increased my Ampara. The exercise is hard and the electrical stimulation that they use can often be very uncomfortable. Most of us in the program are paraplegics and so I guess it makes sense that there would be some discomfort when you consider that you are firing otherwise absent quad muscles with stim. Your progress depends heavily on your increased aerobic capacity and your upper body strength. The longer and harder you row over time, the better the workout. I'm really okay with all of the variables so long as I continue to make progress and this is where things have gotten tricky over the past few weeks.
For someone who has had MS over 20 years, I should know that you can't go to bed late, get up early, eat on the run and expect to have a great workout. Did I mention the stress? Here's a bit about myself, I don't like to compromise. I have been engaged in an emotional case that involves bullying on behalf of my son since October. We just settled the case with the school system this past week and I am happy to say that my son will be starting a brand-new school next week. Here's the kicker, everything comes at a cost. Months of high stress and poor sleep have not made my life any easier. Still, I showed up to row three times a week and brought my A game with me each time - only it didn't pay off until today. For the first time, I completed 1700 meters in less than 30 minutes. I rowed further and faster than I have since I started 12 months ago and finally I can see the enormous rewards of unrelenting exercise. It doesn't hurt that my trainer Colleen is an absolutely terrific person or that or that the gym is infused with some rocking tunes from Pandora. For me, this was a big milestone. This has taught me a valuable lesson about MS. While I don't like to compromise, I know that I will need to pick my emotional battles carefully, keep a balanced diet, rest, exercise, and maintain a low stress lifestyle to beat this thing. Today was my reward for all of my hard work these past months and my son was there to see it!
I have never liked being tied to so much structure but in this case, it has been paramount. I have learned some valuable lessons these past months. Go one day at a time and above all, don't ever give up!
After the mono episode in September my journey has taken a better course, I’ve changed my diet and my outlook has brightened. I was gone from work for about four months, September through January, the longest time in my life that I wasn’t working. Over that time I got my body back into shape and really started the assault on my MS. My goal was to get back to work and continue on with my life.
Being in the education business, more specifically the special education business I had to make sure that my energy level was going to sustain me throughout what is generally a strenuous day. I didn’t want to go back to work unless I could do a great job, there’s no such thing as an easy day and I had to be sure I could do it.
The last few weeks before I returned to work I really hit the exercise bike hard doing 30 minutes a day to regain some stamina and strength in my legs. Yoga was also a big key for me; now that I’m back to work I’m really missing my adaptive yoga courses. Yoga helped with my mind body balance and I try to implement controlled breathing throughout my day, “relax your shoulders and breath in deep.”
Now that I’m back to work I’ve been doing great, I pack a huge lunch with a few pieces of fruit and a massive salad each day. It hasn’t been easy by any means, and I’m tested nearly every day, being one of the only male teachers in my school I get a cupcake almost every day! I work on stretching whenever I get a chance and drinking water while I snack on some veggies.
It’s been a long hard struggle to get back to where I am but I’m feeling great about myself and I’m looking forward to continued recovery.
Be a Warrior Today,
If you would like to become a blogger, please contact us and let us know!
CLICK ON THE RSS FEED ICON BELOW TO GET A LIST OF ALL OUR PATIENT BLOGS