Columns Silver Linings - a Column by Jennifer Powell Move It or Lose It: Movement Is Crucial to Well-being with MS Move It or Lose It: Movement Is Crucial to Well-being with MS by Jennifer (Jenn) Powell | June 13, 2019 Share this article: Share article via email Copy article link A well-known mantra exists in the multiple sclerosis (MS) community. I first heard it after my diagnosis and have since adopted it as my own. “Move it or lose it.” Movement is essential for everyone’s health and well-being. For those of us with multiple sclerosis, it is imperative. Regular activity will help to strengthen the parts of your body that you can move and the muscles that may have atrophied due to lack of movement. Foot drop, pain, numbness, spasticity, fatigue, and heat sensitivity can present obstacles. But these can be overcome. We are worth the challenges they pose. I understand how difficult it can be to exercise. My foot and toes on my right side can’t move on their own because of neurodegeneration. But I still move them every day. I find a place where I can employ my calf muscles. I push my toes up against the ottoman and move my knee. I hold onto a chair to stretch my calves. Aquatic therapy is a wonderful alternative for many with MS. The buoyancy of a pool creates resistance and enables us to move weaker muscles. I use my large, tepid Jacuzzi to do leg stretches. Most of my exercises are flexibility- and balance-related. I stretch and try to hold positions. I use my own body as resistance and have found this to be helpful in reducing the severity of my spasticity. Because of my vulnerability to falls, I consistently work on balance; these exercises keep me off the floor and strengthen my core. Consult your neurologist before embarking on any movement program. You may have secondary issues that prevent you from doing some exercises. However, do not dismay: You are your own litmus, and any movement is a step in the right direction. I have created small, achievable goals for myself. I am having my left knee replaced toward the end of the summer. My right side has foot drop, so any movement is deliberate. It is necessary if I am to endure and recover from such an invasive surgery. On the bright side, some days I have a good leg — it all depends on who’s asking, my neurologist or orthopedic surgeon. *** Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis. Print This Page About the Author Jennifer (Jenn) Powell Jennifer is the Brand and Marketing Manager for BioNews, podcast host of the Multiple Sclerosis podcast, and a featured columnist. Jennifer is an active advocate in the MS community and imparts her hopeful optimism into real-life challenges facing the MS community. Now with secondary-progressive MS, Jennifer hopes to elevate the patient voice to better the lives of those living with the disease. Prior to writing her column, Jennifer freelanced for several online periodicals. When not writing, Jennifer enjoys volunteering with animal rescue, traveling, and spending time at home in Orange County, California, with her husband and golden retrievers. Tags foot drop, movement, neurodegeneration, spasticity Comments Bill It's too bad you people truly don't know what we ms patients go through. I have ppms and I can't walk anymore. What really gets me is the ms clinic says that there is nothing they can do for me. These "specialists" seem to enjoy watching us suffer. I wish they would walk a bit in my shoes and see what is really happening. Reply Jennifer (Jenn) Powell Hi Bill, I’m Jenn Powell, the columnist. I have had MS almost ten years, RRMS now SPMS. I am so sorry if you felt this column excluded you or others with your sub-type. I can see how you would feel that way. I can only speak to that which I know and have learned. I do hope you feel validated within our MS community as we truly care. Kindly, Jenn Reply Carole Williams Hello Jenn, I am very interested in knowing how your surgery goes. I have the same problem of mobility. Best of luck in your recovery! Carole Reply Dale I,m also in the same ppms situation. Retired for a year now so the stress of it gone is a big help. My right side is also my issue but I've never been one big on exercise. I can deal with the shaking and bad balance for now but I know it's only a matter of time before my walker becomes a chair. I have a wonderful wife that helps me through it. Like you I wish others could feel what it's like in my shoes. Hang in there my friend. Reply Leanne Broughton The first thing I would say to a newly diagnosed person with MS is to develop an exercise plan and maintain it in the early days because it will be a great help with your future challenges. I know, you are busy with a young family. This is a priority and will then become a habit. I lost the plot when my dog died (my partner in activity) and wallowed in self pity for a few years. I'm now back to an exercise routine and feel better for it. Though with SPMS my abilities are greatly reduced from my younger days, any movement helps. Reply Jennifer (Jenn) Powell Hi Leanne, Truly sound advice. Thank you for sharing your struggles, I can relate to the depth of grief felt at losing a furry family member. I appreciate your candor and applaud your ability to get back to a healthier routine! Kindly, Jenn Reply Gary Timlin I have a recommendation for anyone with MS who is able to start a program of Hatha Yoga. I was a diagnosed with MS in 1986 & had problems with walking & foot drop on my right side plus the incontinent issues. I found & read a booklet by someone with MS who started using Hatha Yoga that seemed to help them improve their condition. I found a audio cassette & booklet course in Hatha Yoga by "Lillias" that required 1 hour per day of Yoga exercises, 15 minutes in the morning, 30 minutes in the afternoon, & 15 minutes in the evening. I followed this program 4 to 5 days per week until 1998 when I retired & to just use weight training, water aerobics, & walking. I am now 78, still walking with a 4 wheel walker, or 2 walking sticks due to balance problems but still moving. I am sure the Yoga was the thing that helped me the most. Reply Marcene Currey You bet ... move it or lose it ... move it while you can and sometimes that can be very challenging and motivation can be at an all time low especially post exacerbation that puts you back to ground zero ... but you can do it with time and patience start small and build gradually .... I can say this as I am currently living this very challenge ... no one else can do it for you ... and depending on your symptoms permanent or even transient it can be painful but lets face it they are all false messages ... nerve signals gone astray ... so you have to work your brain and retrain that as well to accept a new normal .... be kind to yourselves but always keep moving ... MS 20 years now but did not discover the benefits of exercise until 10 years in ... it can be exhausting take a break and try again tomorrow it has taken me 5 months this time to start again but start I have ... baby steps now ... Reply Gloria Gomez Hi My people I do understand you all. My daughter has MS since she was 26 and I wish they can found a cure for that!!! sometimes I just wonder if they are really looking for a cure or they need to keep people in employment (MS charities) rather than looking for a solution for every one. It is all politics and they need to have themselves this illness to understand and do something!!!. I was reading about !Celiac disease is a disorder in which eating gluten triggers an immune response in the body, causing inflammation and damage to the small intestine." (copy google) and it may be connected with MS. All the best Gloria Reply Jennifer (Jenn) Powell Hi Gloria, How very trying to watch your daughter endure her journey with MS. My heart is with you. I like to believe those involved with MS charities are passionate about finding a cure for MS. I’ve worked closely with many who are very driven. Kindly, Jenn Reply linda mcgregor As already stated: it is so important for those newly diagnosed to start some sort of activity plan - unfortunately, even with the research confirming this, patients are not getting this advice on diagnosis. I have PPMS - and my activity plan has changed over the last couple of years but I still go to the gym, do pilates, yoga, spin, walk a couple of miles with Nordic poles and have a stretch/balance programme I do at home. Is it slowing down the progression? Who knows - but it makes me feel good, keeps me strong and hopefully stops any secondary conditions. Reply Jennifer (Jenn) Powell Linda, Thank you for dusting such great advice! It is important to do what we can, whatever that looks like. As you pointed out, the intrinsic benefits are equally important. Kindly, Jenn Reply Frances Robson I highly recommend the MS Gym. I have PPMS and it is helping me tremendously. Lots of victories there. There are people that have been in wheelchairs and over time, have been able to get rid of the wheelchairs. It requires daily exercise, but so so worth it. There is a paid membership, but there are also lots of free exercises. Also lots of support and friendship. Which is also so necessary! Reply Jennifer (Jenn) Powell Frances, Such a wonderful suggestion and forum for those of us to move what we are able. I love the camaraderie as much as the rest!! Kindly, Jenn Reply Garden lady Please look into the MS Gym. An online class that’s helps people with Neuro logical issues. Like people with MS. There are some free utube videos available. Reply Jennifer (Jenn) Powell Garden Lady, Such a wonderful suggestion! There is always something we can do! Kindly, Jenn Reply Carole Williams Hello Jennifer, I too have a bad knee on my good leg . I fear replacement surgery and would really like your feedback once your surgery is completed. Thank you and the best of luck with the surgery. When is it by the way? My name is Carole, I am retired, have SPMS and was diagnosed 40 yrs ago . I totally agree with regular exercise because this is how I was able to have a family and a career. You have to be strong willed with such a challenge.... Reply Jennifer (Jenn) Powell Hi Carole, Thank you for writing. I am certainly nervous but the pain in that knee is profound. I have reached the point where I am willing to take that risk. It will be a longer recovery with unique challenges but I’m ready! You have what it takes and are strong by virtue of what you already contend with. Do not let fear stop you. There will be challenges ahead but do not already and make them something tha do not let fear stop you. There will be challenges ahead but you can do this and in the end you will have a new knee. I try hard to not predispose the future and just take things as they come. I will certainly let you know how things go. I have chemotherapy on 29 July for my multiple sclerosis so I’m anticipating knee surgery one month later. Kindly, Jenn Reply Ron Brannigan 22 years with RRMS. Exercise and stretch every day. Result I have been able to travel the world, snow ski, participate in 17 MS150’s, work part time for fun. Many setbacks. Lots of pain. Don’t give up. Suck it up. Know your body. See specialists. Exercise, exercise, exercise. Be positive. 68 years now and never thought I could enjoy life as much. Reply Caring husband My wife has had MS for over 18 years, and as her caregiver I am frustrated that half of her medications list fatigue and dizziness as possible (or known rather) side effects. This does not promote movement very well. But, thankfully the meds don’t eliminate laughter, and we try to laugh often! This helps! I also throw a little plastic ball with her and we laugh as I try to protect our plants and TV from her wild pitches! Her right leg has foot drop problems, and her right arm tremors. Why is the right side affected more frequently as mentioned in other posts? Wishing everyone health and joy! Thanks for the discussion Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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