Upper Body Health Also Is Important for People With MS

Upper Body Health Also Is Important for People With MS
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My left hand was numb and weak when I was first diagnosed with multiple sclerosis. For years after that, symptoms above my waist seemed just as prevalent as those below it. Yet, there were no tests being used that measured my waist-up disability level — nothing equivalent to the Expanded Disability Severity Scale (EDSS) that neurologists have used for decades to measure the level of disability of people with MS.

The EDSS rates people on a scale of one to 10 and is heavily weighted toward the ability to do things that require using your legs. But MS isn’t only about walking.

Hands are also important

For the past four years, my neurologist has been checking my finger dexterity using the 9-Hole Peg Test. She times me as I remove nine plastic pegs from their holes and then replace them. It’s a quantifiable test that can be used to measure the impact that MS has had on my hands, just as the Timed 25-Foot Walk measures the impact MS has had on my legs.

My neurologist thinks it’s just as important as the walking test, because the ability to use your hands is as important for your quality of life as your ability to use your legs.

#ThinkHand when you think MS

A group of neurologists in England agrees with my neuro. Experts at the BARTS-MS Center in London have a project called #ThinkHand. Its goal is to encourage medical professionals and others involved with MS to pay greater attention to hand and arm function.

In an article on the MS Trust’s website, professor Gavin Giovannoni puts it this way: “When you lose the ability to walk, your hands and arms become your legs, keeping you independent and allowing you to maintain a reasonable quality of life.”

In fact, when “Professor G’s” group surveyed 360 people, 88% said hand and arm function is actually more important to them than lower limb function.

A possible tool to help the hands

Now, the BARTS-MS group is studying whether an activity they call “Under & Over” can be used to improve the upper body function of people with MS. The activity is similar to needlepoint. A patient weaves some colored shoelaces through a plastic board full of holes, creating various designs.

BARTS-MS is looking for volunteers in the U.K. to test “Under & Over” 30 minutes a day, five days a week, for up to 12 weeks. If you’re interested in participating, you can sign up here. To qualify, you’ll need to be at least 18 years old and have an EDSS score of at least 6.0.

I’d like to see more attention paid to the upper body health of people with MS. I’ve learned to get along without being able to walk unassisted, but my quality of life would deteriorate very quickly if I lost the use of my hands and arms.

Do you feel the same? Please share in the comments below. You also are invited to visit my personal blog at www.themswire.com.

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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, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Diagnosed with MS at age 32 in 1980, Ed has written the “MS Wire” column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “We’re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.” Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.
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Diagnosed with MS at age 32 in 1980, Ed has written the “MS Wire” column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “We’re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.” Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.

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13 comments

  1. Catherine says:

    Thank you for this Ed, I totally agree about the importance of upper body health. I have permanent tingling in my right hand and it is extremely weak. I am right-handed, so this makes some tasks very difficult for me. I have learnt to use my left-hand for some activities, like using a computer mouse, opening doors, cleaning and lifting bags. But I can’t write with my left hand. Holding a pen in my right hand is uncomfortable at first, and then becomes painful as the tingling increases as I try to grip harder. I try and do exercises to strengthen my fingers, but I have made them up myself and I am not certain they are actually helping. If I ever need to use a wheelchair, I really don’t think my right arm would be strong enough to operate the right side of the chair. I can see myself going around in a circle. I am going to look further into #ThinkHand, Professor G gave me my diagnosis 15 years ago and I trust what he says. Take care Ed.

    • Ed Tobias says:

      Hi Catherine,

      I hope that #ThinkHand can come up with methods to keep that upper body going. And, maybe some traditional physical therapy? We certainly want you to spend your next years going in circles, though I often seem to be doing that even sitting down. :-).

      I think Prof. G is spot-on regarding many MS things. I hope he continues to recover well from his accident.

      Good luck,

      Ed

  2. Danielle says:

    I completely agree! I can no longer walk unassisted and even assisted is sooo hard. EDSS 6.5. Hands and arms are incredibly important.

  3. Debbie says:

    I absolutly 100 percent agree with the fact that more focus needs to be paid attention to te hand ad disability! I have lost allot of use of my hand and arm for many years now and would very much appreciate some guidance or excercise to strengthen what I do still have. Hands numb, difficulty or impossible to hold a pen, zippers, buttons, cooking utensils, bars of soap etc….

    • Ed Tobias says:

      Hi Debbie,

      I’m sorry to hear of your hand problems. Have you discussed this with a physical or an occupational therapist? Each of then particularly the OT, should have some suggestions.

      Ed

  4. I really enjoyed this article. My left hand has severe numbing and I am unable to use it as well as my right hand-thank goodness I am right handed. I have been diagnosed for 16 years and my neurologist is stunned at the slow hold MS has on my life. I have some issues but none that are disabling. I am so very fortunate. I am in the gym 4 days each week on the bike and the rowing machine and am trying to eat healthy as well. I am bothered by the numbing of my hand and will mention this project to my doctor. Hopefully she can become acquainted with it and involve her patients. So important to maintain healthy hands! Thank you for this informative piece of information.

    • Ed Tobias says:

      Hi Barbara,

      Thanks for your comments.

      I’ve always said that, rather than hiding from the storm it’s better to learn to dance in the rain. It sounds as if you’ve learned all of the dance steps.

      I’d be interested to hear what your neuro has to say about healthy hands.

      Regards,

      Ed

  5. Charles Lumia says:

    Holy moly I didn’t even think of upper body health. My balance and gait are bad already (I’m 35) but adding upper body issues on top of that would be a nightmare.

  6. Paul says:

    Hi Ed,

    I’m in complete agreement on the importance of upper body health and arm and hand function.
    I’m like a lot of us with MS I can no longer walk unassisted. I use a rollator around the house & a wheelchair if I’m out going anywhere where the distance from and back to the car is any more than 50 feet each direction.
    Hand and arm function is definitely important for both rollator and wheelchair use. Luckily at this point in my journey with MS I haven’t lost much hand and arm function, unless I’m overly fatigued then my hands become a little weak. What I’ve been doing for the last couple of years is use a grip strengthening device, it’s one of those with the coil spring on top that provides the resistance while you squeeze the handles together. This has helped to keep my hands working pretty good most of the time.
    Thanks Ed for all you do and for writing your column every week I enjoy reading it.

    Regards,

    • Ed Tobias says:

      Hi Paul,

      Thanks for your comments. I haven’t used grips but I think that some of the curls that I do with a dumbbell provide a similar benefit.

      I’m really glad that you like what I’ve been writing. Notes like yours make my day.

      All the best,

      Ed

  7. SueWho says:

    Hi Ed!
    I enjoy your writings. I am in total agreement. Hand/arm use is CRITICAL for maintaining independence. Initially I was diagnosed with Transverse Myelitis in 2006 & Secondary Progressive MS in 2017. So it’s questionable whether my first TM episode or my second TM episode in 2010 was actually my first symptom of MS. I’ve been wheelchair dependent for 10.5 years now. I’ve been unable to stand for 5 years. I had my first Baclofen Pump placed in Jan 2011 & my second one placed Aug 2018. I had a suprapubic catheter placed Dec 2013 after losing enough function in my dominant right hand to no longer be able to do the self catherizations I had been doing since 2010. Then in Feb 2018 I had colostomy surgery. This was a last resort after losing enough coordination in my left hand to no longer do the digital extractions I’d been forced by a non-functioning versus severely spastic sigmoid colon to do for 6 years. Even though I am a Registered Nurse I was surprised by what a relief & God-send the colostomy turned out to be.
    At the start of my neuro-drama I had been married for 13 years. By 2010 I was a divorced single Mom. After my daughter graduated high school in 2016 I moved from Texas to my home state of Ohio. My daughter went to college in Chicago, Illinois. She fell in love with the city and decided to live there after graduating. So except for one year when my Mother with Alzheimer’s lived with me, I have lived by myself since 2016.
    My bilateral hand function continues to worsen, as well as my overall abilities. I lost the ability to transfer myself in and out of bed with a transfer board around April of 2020. This was due to a combination of my leg spasticity, a grotesque amount of lower leg/feet edema by the end of the day and increased weakness in both arms and hands. I now have an overhead electrical self-lift for getting in and out of bed. Thankfully I received my portion of my ex-husband’s retirement fund in order to get it. Otherwise, I would still be sleeping in my electric wheelchair as I did for months until the lift was installed this past November.
    Fortunately I am still able to do my colostomy care myself. I have a Homecare Nurse every other week to change my catheter. Per Medicare limitations I have a Home Health Aide to help me with showers twice a week. She has to use my portable electric lift, which 2 of my brothers bought me, to get me in and out of the shower. I pretty much microwave most of my meals. I have the majority of my groceries delivered. I type with my right thumb but will be looking into getting a voice activated system like the disabled author Mitch Sturgeon (Enjoying the Ride: Two Generations of Tragedy & Triumph) uses. I had a great Occupational Therapist from Cleveland Clinic Homecare work with me this past summer on some hand exercises to try to maintain what is left of my hand function. I’d guess I have about 10% function left in my right hand, although my fingers curl into the palm of my hand and I can’t extend them without prying them open with my left hand. My left hand has about 60% function. I plan to live independently for as long as possible. I am blessed to have 9 wonderful siblings, although proximity challenged, who have made that possible thus far. They renovated my house before I moved in back in 2016 to make it wheelchair accessible.
    As you so well stated, although disability is largely determined by the ability to use our legs it is the ability to use our hands that determines what is most important, our level of independence!

    • Ed Tobias says:

      Hi Sue,

      Thanks so much for sharing your story. It’s quite a story and I’m sorry that you’ve had to face so many obstacles over the years. On the other hand, you seem to have done an amazing job overcoming them. Bravo!

      I’m glad that you enjoy what I write. That means more than you can imagine to me.

      Best regards,

      Ed

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