- : causing pain or distress a sore subject b: painfully sensitive
- : attended by difficulties, hardship, or exertion
- : angry, irked, a sore loser
"TURNING THOSE MS SCARS INTO STARS"
In relapsing-remitting MS, their is significant recovery as the inflammation dies down. Special maintenance cells called glial cells are responsible for the repair of the damaged nerves. One type of glial cell, called an oligodendrocyte, lays down new myelin and another type, called an astrocyte lays down SCAR tissue.
A STAR is defined as a heavenly body, champion, headliner or a virtuoso. Another definition of a Star is defined as a network whose components are connected to a hub.
My faith in God is my connection and that is how I am "Turning Those MS Scars Into Stars." I am striving to experience the challenge of living with MS as a Blessing, an opportunity to grow in compassion, patience, grace, and love, all of which are blessings - Multiple Blessings Not Multiple Sclerosis!
Wednesday, December 15, 2010
Tuesday, December 14, 2010
So, let's get rolling! Follow my progress, the goal is to crawl by the end of the month.
Monday, December 13, 2010
- Online shopping can be a great time saver.
- Use your own computer or a computer at the library by signing in with your internet email address and account provider
- Save energy and stress by avoiding crowds and shopping at your own pace.
- Save money. You can print coupons for in-store and online shopping
- Be sure to use Retail Stores discount sales codes when available at check out with online shopping
- Retailers often offer Specials to online shoppers that are not available in stores
- Look for Free Shipping Offers
Thursday, December 2, 2010
The holidays are filled with tempting dinner parties and festive occasions. Let me encourage you if you are on the diet to stick with it. Just be creative and remember to enjoy the things you can have fully.
Monday, November 22, 2010
I have also learned that keeping a detailed journal of what you eat is very important. The symptom or reactions to the foods that you eat should be recorded. This also requires planning. Make sure to have a small note book for logging your entries. I am sure a look back by date will be interesting as time goes by.
The holidays pose a special problem. It seems as though we have conditioned ourselves to believe that over indulgence and overeating go hand in hand with holiday celebrations. Again, be prepared with array of the healthy choices that are available to you. Like Nuts taste extra special when coated with honey. For a spicy change use a little oil and chili powder blend to taste. No matter what your favorite flavor, it can be added to the permitted mixed nuts and seeds. Be sure to add in dried fruit as well. Yum!
Dr Swank's book has some great recipes but use caution, not all the recipes apply to this strict start-up. As time goes by the other foods can be added if tolerated. So, be creative and enjoy all the foods you can have.
THANKSGIVING DINNER MENU
Butternut Squash Soup Served w/Brown Rice or Popcorn
Roasted Turkey Breast
Baked Sweet Potato Casserole Topped with Pecans
Greens (Mustard and Collard)
Roasted Corn on the Cob
Baked Apple Crisp w/ Frozen Vanilla Coconut Milk - I'm sure the Pilgrims did not have a la mode desserts!
Please share with me your ideas. I would love to hear them.
Saturday, November 6, 2010
Encouragement gives hope to someone. When someone says, 'you're not alone' or 'I know how you must feel', with sincerity; it is a perfect gift. Especially, when the encouragement is given with no expectations of receiving an encouragement, in return. Encouragements are not always spoken, are they? An encouragement can be a kind gesture, a charitable action that gives someone support. The "like" item is one of my favorite things on Facebook, it gives a thumbs up to others. On Twitter it is the re-tweet feature that gives validation to others. Blogging has a special kind of community of people who follow you. I think another lost kind of encouragement is the welcome to the neighborhood. It is so easy to connect with others in the social media world, I think we sometimes forget to add, nice to meet you.
In the future, I will look for opportunities to encourage others.
Wednesday, November 3, 2010
I am currently in my third week of the diet. Today is not a particularly good or bad day. I feel at a loss from the high of caffeine and sugar. I can say it is not a craving, but it is more or less an absence of the familiar practice, of having a cup of hot, sweet and creamy coffee. I thought that I would miss bread more, but that is not much of an issue because the starch of bread can be replaced with rice or potatoes. EGGS are a real significant problem! I got an egg substitute, and I can not wait to bake with it. There are lots of gluten free bread mixes, but most would require an egg or two. Therefore, often there is a solution to the problem, if you keep an open mind. I look forward to testing the egg substitute.
The information on 'The Diet and MS' seems to be an extremely hot topic for discussion. The National Multiple Sclerosis posted this Clinical Trial Alert recently on 'The Diet and MS' on their website Research section, MS Trial Alert, "MS Trial Alert: Investigators in Oregon Recruiting People with Relapsing MS for Study of Effects of Low-fat Diet on MS Disease Activity; Travel Costs Covered" posted on Oct 29, 2010. Read more about this study in the following link: http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=4046
I am thrilled that this type of research is being proposed. This is a random assigned, rigorously controlled, clinical trial study of the effects of a Low-Fat Diet on people with Relapsing MS. I am not sure if it is as restrictive as the diet that I am on.
Please let me know what you think about 'The Diet and MS'.
Thursday, October 28, 2010
Maybe it was some kind of exercise routine, that I would not have the strength or stamina to do. (Read my earlier blog on Yoga). Oh, don't mis-understand, exercise actually has helped me. However, it is extremely difficult to perform when you are fighting MS at the same time. MS is not something that you can turn on or off like a light-switch, then act like a Gazelle. I have always wondered how many seated arm curls must be done to walk across the floor, of course, you're strengthening your core! Funny how the MS seems to have blocked that from my memory - was that 10 or 11? Oops, lost count, and I have to remember to breathe! Is that in through the nose out through the mouth or was it the other way? Oh well, it doesn't matter, whatever I must do, I'll do it and give it my all! What would you give to live free from MS symptoms?
What is this new, exciting and profound challenge? The answer was not new, but it was profound and tremendously challenging yet, it was so easy; CHANGE YOUR DIET! That was a surprise to me. I have been on all types of diets: Weight Watcher, California, Atkins and Oprah's just to name a few, but of course, they were just to lose weight. This diet does not fall under the weight lost segment it is a therapeutic regimen. As I am writing about my experiences with this diet, you will see why I use the term regimen. This is a coherent plan for therapy, a series of steps to be carried out to achieve the goal of living a life free of MS symptoms.
How does it work or better yet, does it work? I don't know I am only into my 2nd week. The outline for this diet is in "The MS Recovery Diet", by Ann Sawyer and Judith Bachrach. I have had an ELISA food allergy analysis to identify food allergies and sensitivities and am waiting for the results. I can tell you that I have noticed a difference in the way I feel, already. My blood pressure has returned to a normal range, although I still take medication for blood pressure/hypertension. I have noticed a difference in my feet not swelling as much even when I sit at the computer for hours.. So, maybe I am seeing results already. However, I want to see a lot more results from the aforementioned for all the dietary changes that I have had to do.
On the list, of the foods that I have eliminated from my diet before the ELISA test results are:
Sugars, gluten (all gluten grains), dairy products, legume (soy, green beans, peanuts, peas), eggs, saturated fats and yeast. I recently found out that I needed to include oatmeal to the grains that I cannot eat, from an allergic reaction. I have noticed that my body reacts with more sensitivity to anything that I eat. It is either yes, that's OK or no, and you are going to need Benadryl. I am not quite at he Epinephrine shot, yet.
So, I can tell you that my body is paying attention to the difficult diet. Again, as I posed the question before - What would you do or give to have no MS symptoms.
Monday, October 18, 2010
I recently attended a beautiful luncheon that was provided for those with Multiple Sclerosis. I have to admit I rarely attend these types of events alone but, I had an incentive. Not only was the luncheon held in one of my favorite restaurants in town but I would also have a new crowd that I could promote my MS website to. How disingenuous of me I must confess, not to first think of the topic for discussion or of meeting other MS survivors and friends. And once again, I should have listened to that small voice that warned that my head and heart were not in agreement. Never the less, I put on my (I can do this game face) and forged ahead. The "I can do it on my own" determined, energetic, goal oriented attitude can seem aggressive and self-assertive, at times to others. The not being intimidated by your circumstances attitude can unknowingly give others the impression of being mean spirited, OUCH. Eventhough, the stress of coordinating and accomplishing a solo outing, if you have a disability can be overwhelming and daunting, especially if you usually have a companion to assist you. So we mask it with a I'm tough, I can take care of myself persona which can seem harsh. I so admire people who have mastered this needed self confidence yet remain soft and gentile while living with a disability.
Much too often I have noticed that whether it is pain, disability, emotional lack of self confidence/esteem or just having a bad MS day we can sometimes be a little discourteous to others around us. We often overlook their need for recognition, patience and understanding even though they are not physically challenged.
It is wise for us to remember the boomerang effect; you sometimes get back what you send out. We may think that the "tough guy or gal" attitude is for our own self preservation and protection. But, by being guarded you may miss an opportunity to connect with someone else in an authentic way to gain pleasant memories if not friendships.
What are some of your thoughts about this complex mental state of beliefs and dispositions that you have observed with a MS attitude?
Tuesday, September 14, 2010
Tuesday, August 17, 2010
MS Society of Canada - News in Research on A Home-Based Walking Program Using Rhythmic Auditory Stimulation Improves Gait Performance in Patients With Multiple Sclerosis: A Pilot Study
IF YOU CAN NOT SEE THE LINKS BELOW THEY ARE THE SONG SAMPLES IN QUOTES
This report is great NEWS because "I Like To Move It"
I am so excited by this report - " I feel Like Dancing"
and I'm "Staying Alive" and this is good NEWS!
Monday, August 9, 2010
Thursday, August 5, 2010
In 1993, I had kids in high school. Like most athletic high school boys they played sports, in Texas, that's mostly football. I remember, it was a Homecoming game night and it was pretty special for one of my sons. He was a senior playing on the Varsity Team that year! His position was, starting offensive lineman, center #55. I had looked forward to this, since I had taken him to all his Little League games and practices, from the age of 10. I was determined, I was not going to miss this game for the world!
But, as you well know, having MS and being in a football stadium, full of screaming kids and loud high school bands, is not compatible. Nor, at that time, very wheelchair accessible. So, my husband rolled me out on the football field, home team sidelines, in my wheelchair. But, they would not allow him to stay with me. I remember wondering, "How do I look, do I look OK?" I am wearing the school colors of black and gold, sporting and supporting. I remember thinking, I'm sitting out here, in my chair all alone, all the other people are up in the stands, including my husband! I remember thinking, shoots, I hope I don't have to go to the potty. That was before I had gotten my independence with a power chair. I even worried that, by being AT THE GAME, I was embarrassing my son! But, I got over it! Not only did I sit there, in my wheelchair, I had the nerve to try and cheer the team to victory! "Fight team fight, Go team go! Yeah Bears!" I believe they won that night, but I'm not sure, and that's just the point! I don't really remember if they won or loss the game. What I remember is after the game, on the way home, us talking with our son, who was sitting in the back seat of the car. Telling him, "You had a great game. You really looked good out there!" Then I asked, "Did I embarrass you by being out there on the sidelines in my chair?" And him saying, "No, not at all, Mom. There are some guys who did not have one parent AT THE GAME. Let alone, one who put themselves out front, on the sideline, cheering for them!"
So, on days when having MS is kicking my butt! Or on days, when MS is a struggle and takes major effort, I think about this:
I may not be able to hang with the crowd. I might even be alone on the sidelines of the field. But, I am AT THE GAME, and I'm cheering my team on to victory from the sidelines!
So, let me encourage you! Do whatever you can to the best of your ability. The reward is, someday you will have sweet MEMORIES, that you did not miss being AT THE GAME!
Wednesday, July 21, 2010
|Purchase Online Here|
You start by learning everything you can about the disease and the resources that are available to those with the disability. As well as things that will empower the Caregivers, whom are as affected by the disease as the patient. Fear of the unknown can be as disabling as the disease itself.
You can save yourself some time if you read about the experiences of others with MS and apply those techniques that works for you. Think of it as part of your medical treatment. You will become capable of asking questions of your physician about treatment and able to explain relevant symptoms. For example, from reading this book I learned that sensitivity to salt was a MS trait also. Now I know I should mention this to my neurologist as well as my family doctor. This tip is just one of many in the book.
A surprise feature of this book is the journal page after each chapter, to add your personal notes.
Please enjoy this find and be sure to post your thought here on MS Scars to Stars.
Thursday, July 1, 2010
Tuesday, June 22, 2010
What would help make a MS Self Help Group more exciting and appealing ? When you read the phrase MS Self Help Group, what thought first comes to mind? What are some of your concerns on attending a Self Help Group meeting? Would you like to only attend meetings with people who have similar abilities or disabilities? Are you comfortable sharing with Caregivers attending your SHG (Self Help Group) meeting or would you prefer MS patients only? Do you fear sharing your diagnosis in the SHG because of a lack of privacy? Would you rather SHG meetings were held by a professional speaker on an educational format only? What do you think of groups that restrict their attendance by gender or age?
In researching the story of Humpty Dumpty for this blog I found that the original Humpty Dumpty was actually a large cannon that was sat on top of a wall, not a obese person portrayed as a cartoon egg that topples to the ground and is shattered! In fact, the fortress wall the cannon was seated upon was toppled and the protection and advantage that the cannon afforded in battle was lost. The historical event of the siege of the city of Colchester in 1648, is fact. Read the entire story. But as the poem goes,
No one was able to get the cannon back on top of another part of the wall. Likewise the uniqueness of a Self Help Group is You gather information and You gain understanding about coping with Ms from what others share, Medical Professionals as well as other Patients. We are responsible for our own well being, that's why the meetings are called "Self Help" Group.We may have broken Nerve Axons, see Myoptumhealth.com, but we are not cracked and broken fragile eggs!
Thanks for sharing by posting your response on this blog.
Saturday, June 12, 2010
Wednesday, May 19, 2010
Saturday, April 10, 2010
According to the DSM-IV (the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition) some common symptoms of ADHD include: often fails to give close attention to details or makes careless mistakes; often has difficulty sustaining attention to tasks; often does not seem to listen when spoken to directly; often fails to follow instructions carefully and completely; losing or forgetting important things; feeling restless, often fidgeting with hands or feet, or squirming; running or climbing excessively; often talks excessively; often blurts out answers before hearing the whole question; often has difficulty awaiting turn.
Please keep in mind that the exact nature and severity of AD/HD symptoms varies from person to person. Approximately one-third of people with AD/HD do not have the hyperactive or overactive behavior component, for example
Well, I guess that's why they call it Multiple Sclerosis. Please visit this site Everyday Challenges to view a great video
Thursday, March 11, 2010
Well boys and girls I have had that happen to me, it's called "side tracked." The only thing that saves me from totally abandoning my plans is that I have been down this road before, and it looks familiar.
I was told, "Since you are obviously feeling well enough to try Yoga, why don't you go into Rehab, after all this is a specialized program for people with your condition and illness."
Well, I am willing to try both; I just don't think I am physically able to do both. I thought I had it all figured out. I would take some physical therapy lessons from a qualified trainer and therapist along with a weekly Yoga lesson and see if I felt better. I like my plan. I think that it will work for me. So, I'm back to working my plan. And even though doctors do know best, if I don't follow the regiment that they have planned for me then the results will be minimal at best. Not to mention that the cost for rehabilitation treatment is far greater than what I am trying on my own. Even though, I am blessed to have the insurance coverage, I could very easily and quickly use my entire annual allowance for therapy in a hospital or clinic. And with MS you never know what might happen. You may need rehab treatments due to an emergency Exacerbation of MS. So, I'm sticking with the original plan for now.
I also have grown to realize that I need to work on my independence for transportation to my lesson appointments. This will be a side topic I will report on in my journey. I think I'll call it "The Get Around". So, look for those blogs. As always your comments on any of my posts are welcome.
Monday, February 15, 2010
Now it was time for me to stand up, everyone offered eagerly to assist me. But the smallest lady in the class affirmed she could help me stand very confidently. I thought, sure this attempt would be human folly. After all I had warned them that they would need a crane to get me off the floor. But, she looked me over and asked if I was ready, and before I could reply with “I don’t think you can…” I was standing. That was as big of a highlight to my day as getting on the floor. I am by no means recommending this be tried by everyone because, she later stated that she had worked in a hospital and had some formal training and experience with people who have trouble walking and standing.
The class was over and I felt great, lots of energy but relaxed! I highly recommend trying Dahn Yoga. I will continue the training and will report with another blog on my next visit.
Tuesday, February 9, 2010
The relaxation part of the routine was starting. The sound of the music is more noticeable. We are instructed to close our eyes and concentrate on our deep breathing, in through the noise and out through the mouth making a ah sound with each exhale. I later found out these exercises in breathing is a part of the Dahn Yoga routine basics called Jung-Choong Breathing. Everything is focused on moving energy.
I have another great reading suggestion called “Dahn Yoga Basics, by Dahn Yoga Education” Dahn Yoga Education is an institution which researches and develops educational material for Dahn Yoga practitioners with the help and support of Dahn Yoga professionals.
Back to the relaxation – now your mind work and visualization starts in earnest, because you may be tempted to drift off to sleep. But this was my first experience. Now that I know more about the practice, I’m sure I will get more out of the relaxation exercises.
There is one more thing I will share about this part of the experience and that is a pressure is applied to the arms and chest while in this relaxed state by the instructor. I know now that this was done to improve the flow of the Ki or Chi.
I am sure I will learn more about this on my next visit to class.
In my next blog, I’ll explain getting off the floor and what happened next on my first visit.
Saturday, February 6, 2010
This might seem over simplified but, in the African American culture we have heard this before from our elders. When you fell or injured yourself playing around as a child, you were told to “shake it off”, and it worked.
The intricacy of the tapping and bouncing and shaking in Dahn Yoga is much more refined then what I have compared it, and far more effective. This may be “the best part” of the exercise routine.
I am currently reading Brain Wave Vibration by Llchi Lee the originator of Dahn Yoga, and it refers to “Getting Back into the Rhythm of a Happy, Healthy Life.” As I mentioned before in an earlier blog the experience is like a dance and the tapping is like the sound of a drum very rhythmic. In our class soft music was played also. The music stimulates in a different way and is very relaxing. Some people may fall asleep listening to the music alone, and that’s OK if you do, your body needs rest. But, if you fall asleep, you would miss out on another great part of the experience; the breathing and stretching.
Some of the exercises required my getting on the floor, that sounds easy, but I had not been on the floor (on purpose) in over 10 years. I had experience in falling when I was alone and I could not get up. You know the commercial “I’ve fallen and I can’t get up!” well that was me. So, for me it was a major breakthrough just to trust myself to get on the floor. I kept telling everyone they would need a crane to get me up, but they encouraged me to try anyway. Which brings up another great thing I noticed about the class and that is everybody encourages the other person to try and move the best way they can.
Well I’ll tell you what happened once I got down on the floor next time.
You can purchase the book I’m reading “Brain Wave Vibration” by Llchi Lee, in the MSLSC Store on our website through Amazon or here on this blog!
Wednesday, February 3, 2010
I also soon realized that I would become aware of where my internal organs were and how to energize them to clean out the toxins. This is a very open and honest approach to exercising. I can say I did feel energized.
The next part of the routine involves stretching to relieve stress and tension. But right now, it’s the end of the day, and that sounds good to me. So I’ll finish the report tomorrow. The best part is yet to come.
I found out that the creator of Dahn Yoga was a stroke survivor and used these exercises for his healing and recovery.
Again please visit the MSLSC Store Books and DVD’s on our website to find the Dahn Yoda and MS DVD. You can get started with the lessons, they are similar to what I experienced.
Tuesday, February 2, 2010
Most Yoga focuses on the physical and more complicated movement and poises. Dahn Yoga is unique type of yoga that features simple exercises for the conditioning of the body and mind, starting with the core, suitable for people of all body types and ages.
My first experience with Dahn Yoga was a video I found online called Dahn Yoga for Multiple Sclerosis and Similar Conditions. I thought this would be a great tool to have in resources for my Self Help Group meetings. After briefly viewing some of the video in one of our meetings, a group member said she had been to a local gym and enjoyed it very much. I contacted the instructor and scheduled a visit to our support group.
After a great demonstration by instructor Lee, I wanted to experience a full lesson. So, I scheduled a visit and attended my first class with my husband. We both were familiar with the benefits of yoga and stress management so we decided to take the class together and encourage each other.
We arrived at the gym Sunday Evening dressed in workout clothing T-shirts and soft pants. In the studio you must remove your shoes because the entire floor is a soft mat. The class initially was started with some simple warm up routines and learning the proper way to stand.
Dahn Yoga is simple and easy to learn. We were able to understand each movement and participate at first try. I will describe more about the rest of the session in tomorrow’s blog.
In the picture above is Master Jung Lee with 2 of her students, myself and two of our group members.
Monday, February 1, 2010
I will be very open and honest about my journey. I will also try to give 100% to the program and attempt to follow all the instructions to the best of my ability. So, you have my word that I am following the program as instructed. If I fall off the wagon or if I can not physically do some of the exercises I will make note of it as well as those things that seem to be easy and helpful. I should let you know that my physical condition is Ambulatory but just barely. I use a walker for balance, when I walk short distances. I also have Drop Foot which causes difficulty in walking. I was initially diagnosed 20 years ago with MS. I have had difficulty walking many years and have used a wheelchair since 1999 for assistance.
After each sessions I will enter a post about my experience. Our first introductory session was Sunday, January 31st. We were able to attend a Free workout class. I will describe this experience fully in my next post, after I have fully view the Dahn Yoga DVD to compare our session with others lessons.
I welcome your thought and experiences as feedback . Thanks.