Someone recently asked me how having MS impacts my daily lifestyle choices. The truth is that historically it has been very difficult for me to recognize that I needed to change the way that I did most things. For years, I worked long hours at a job that I loved and spent every free moment after work being a wife, a mother, a loyal friend, a caring daughter, etc.… and the list goes on. Then one day I woke up and I just couldn't move. My body felt motionless for weeks and that was my wake up call to change my lifestyle. Two years ago my husband and I mapped out a plan to recovery. We didn't know if it would work but we knew we had to try. With the help of my neurologist, I took a leave from work, changed my medications, and then I decided to embark on a regimented exercise program and a healthier diet. All of this coupled with rest has yielded some excellent results. It was an evolution that took a lot of time and research not to mention trial and error. Now that I feel that I have gained some control over my condition, I don't harp too much on the past or how I used to do things but rather focus on the gifts life gives me everyday. It sounds trite I know but it is the absolute truth. Limitless Lizzie P.S. A bit about me...I have been diagnosed with MS for over 20 years and am currently being treated for secondary progressive MS. I am married with a beautiful little boy and until recently worked full-time using both a manual wheelchair and at times a power chair. I battled stage III breast cancer and consider myself to be a survivor. I am grateful to be a part of this community and share my experiences with you and hope that in some small way they may be useful to you. Getting started with the Paleo diet was by far the hardest part. Until I had purged the pantry of all the old staples like pasta, rice, and flour I wasn’t going to be able to be truly on the diet. The purge was an eye opener for sure; I think we filled up four grocery bags of foods that weren’t included in the new diet. Corn, cans of soup, and anything that contained any ingredients that were more of a long scientific formula than something you should be eating were donated to our awesome neighbors. Boxes of pasta, bags of rice and peanut butter...you’re out too. When all was said and done Old Mother Hubbard had me beat by a mile! My new building blocks include almond flour, coconut flour, almond butter and coconut oil. It has been interesting getting used to using these new ingredients, but they actually taste better to me so it hasn’t been too tough. I’ve got a jug of extra virgin olive oil and some sesame seed oil that I use to cook with rather than vegetable oil. Instead of pasta with a canned sauce, garlic bread, and a canned veggie for dinner, I’m whipping up a fresh salad with chicken or fish, or a steak with butternut squash and a spinach salad. It does take a little longer to prepare meals but with a little planning it’s not bad at all plus the meal you’ve prepared is so much better tasting and better for you too. Now that I have been eating healthier good food for a few months many of my MS symptoms have lessened to the point that I have forgotten about them. No more cog fog! Sure I will forget a name, but I’m not forgetting why I just walked into the kitchen! I’m able to ride my stationary bike for longer and longer periods each day and not struggling to just make it to ten minutes. Building stamina was something I thought was gone for good with MS. Along with stamina I’m getting stronger; my gimpy leg has even gotten stronger in turn, which is helping my walking and balance. Is Paleo why I’m feeling so much better? Eating healthy has made me feel better about myself and I’m experiencing great results, I’m looking forward to further healing! Fight on!! Be a Warrior Today, Donn
When I think about my New Year's goals for 2014, I find myself thinking about what made 2013 such a good year. In addition to a loving and supportive family, I have had several major shifts in my lifestyle which I believe have helped me to stabilize and slowly improve my condition. While I have made changes in both my diet and medication regimen, I strongly believe my immersion into a rigorous exercise program that uses a therapeutic amount of electrical stimulation http://en.wikipedia.org/wiki/Functional_electrical_stimulation is the reason why my function continues to improve. I have been in an adaptive rowing program for several months with MSers and spinal cord athletes. At first the program seemed completely impossible. I didn't have much upper body strength and my hands weren't strong enough to grasp the handles. They used velcro handgrips to fasten my hands on the handles and after a good deal of persistence on my part, I began to see a steady increase in my strength week by week and month by month. I row three days a week for an hour each workout. I couldn't imagine my life without it. From time to time I've also participated in Access Sports America physical activities, which is a fantastic organization for bringing outdoor and indoor exercise into the lives of people with many different types of disabilities http://www.accessportamerica.org/ and provides access to such sports as windsurfing, canoeing, biking, tennis, basketball, etc. They transitioned me from my wheelchair to a windsurfer on the Charles River– it was so much fun! They work very closely with Spaulding Rehabilitation and are set-up to serve people with varying types of physical limitations. The staff at Access Sports America are kind, highly skilled, and very adventurous. I'm thinking about branching out and skiing. I used to love to ski but have never done it using modified equipment. If you're interested in New Hampshire slopes, I found a lot of information on the following website: http://www.nh.gov/disability/information/community/ski.htm The new year is always filled with hope and uncertainty. When fulfilling my New Year resolution becomes onerous, I take comfort in Abraham Lincoln's Message, "The best thing about the future is that it comes one day at a time." Keep on moving! Limitless Lizzie P.S. A bit about me...I have been diagnosed with MS for over 20 years and am currently being treated for secondary progressive MS. I am married with a beautiful little boy and until recently worked full-time using both a manual wheelchair and at times a power chair. I battled stage III breast cancer and consider myself to be a survivor. I am grateful to be a part of this community and share my experiences with you and hope that in some small way they may be useful to you. Experiencing the arts, whether it be a concert or broadway play, can sometimes be difficult for those of us with mobility or stamina for standing in one place. I am a lover of musicals and concerts, however, I cannot stand in one spot for long periods of time. So unless you are lucky or rich enough to get front row seats, you may just have to listen to a concert staring at the person in front of you. It seems obvious to ask for handicap seating, but for some venues unless you are in a wheelchair, they do not have any other options. However, I recently had tickets to see Pink. I was at a stage in my health (post hip replacement and MS exacerbation) that I knew I would never be able to do the stairs. What I found out was that, if you arrive 90 minutes before the event, the customer service department will change your seats to an area on that same level with front row seats reserved for wheelchairs. They accommodated me and my entire party so no one could stand in front of us. Of note, it is on a first come first serve basis and when we went there was a line, so get there early. If you are with a large group, they may only reseat you and one other party member. So bottom line, don't stop doing fun activities. Don't miss out on fun. Check out venues individually but always ask. I'm traveling to the CMA Festival in Nashville this year. When ordering those three day tickets, I explained my circumstances, and they got me front row balcony seats. It never hurts to ask. Hope this info helps. Hey for that matter someone who doesn't have MS may find themselves with a broken leg. Don't miss something because of a disability. Stay warm this month. Susan RN Yesterday I watched “MS & Me” on Al Jazeera America. As I have grown to respect their fair and more inclusive reporting, I was excited to have them give me the current update on all things MS. The hour long event followed an Al Jazeera correspondent as she traveled to England, where the cutting edge of research promised to be.
One hour and we visited young people who detailed their symptoms, a man in a wheelchair as we were told that one in four MS sufferers would end up in one, and one woman who said that the side effects of MS medication were worth the risk for the benefits she felt. A visit to a researcher who made it seem as if the Vitamin D connection was the biggest link up to date, a DNA specialist who confirmed she did not carry the gene that they think may predispose an individual to MS (but that did not mean that those with MS would necessarily have this gene…) and to her doctor to determine that her MS had not developed into secondary progressive, and the special closed with her decision to begin taking a daily pill that they did not disclose the name of. Is this what MS is in the public eye? Do the media only want to report on the sensational? Wheelchair statistics and ten minutes of waiting to see if she will have heart failure upon taking her first pill, but no talk of the stress connection, nutrition, any amount of control we might have as those with MS? I was torn between compassion for this woman and wanting to shake her, “You are not a prisoner to your diagnosis!” How many of us feel this way? That our lives are hurtling out of control? That each year brings the possibility of a new relapse, new symptoms, and the possible transition into progressive MS? And is the media, our doctors, our families, ANYONE telling us differently? --Emily Royce
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