Upper Body Health Also Is Important for People With MS

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.

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

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....

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.

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.

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,

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!