Running with MS

Using exercise and physical therapy for recovery from the effects of MS, and for maintaining physical
function.

Running with MS

Postby Julia » Wed Apr 07, 2010 1:20 pm

I received my MS diagnosis in Nov 2009- almost exactly two months to the date of running my second marathon. I was looking into running with MS and came across pretty much nothing. Is there anyone out there that still runs?

Currently I am only running 10 miles a week after my big attack in Oct, but the plan is to try and run the Akron Marathon again this year (it is in Sept). My Neuro said to go for it, but my fear is that the training will be too much and some how spur on another attack. Any feedback would be appreciated.

Currently my MS symptoms are numbing/burning on my left arm and leg. Loss vision in my left eye (from Optic Neuritis), exhaustion, heat intolerance and a few other things here and there. I have a slight drag of foot on my left foot as well, but you could not tell unless you were looking for it.

Any suggestions would be great. I figure at this point I should go for it and try to do as much as I can for as long as I can...BUT I do not want to have an attack because I pushed it too hard.
Julia
Getting to Know You...
 
Posts: 16
Joined: Tue Dec 01, 2009 4:00 pm
Location: Akron,OH

Advertisement

Postby Julia » Mon May 03, 2010 2:44 pm

Well I did not hear back from any of you, but I decided to go for it. I also found this article, which gives me hope.

Public release date: 18-Feb-2010

Exercise helps protect brain of multiple sclerosis patients

COLUMBUS, Ohio – Highly fit multiple sclerosis patients perform significantly better on tests of cognitive function than similar less-fit patients, a new study shows.

In addition, MRI scans of the patients showed that the fitter MS patients showed less damage in parts of the brain that show deterioration as a result of MS, as well as a greater volume of vital gray matter.

"We found that aerobic fitness has a protective effect on parts of the brain that are most affected by multiple sclerosis," said Ruchika Shaurya Prakash, lead author of the study and assistant professor of psychology at Ohio State University.

"As a result, these fitter patients actually show better performance on tasks that measure processing speed."

The study, done with colleagues Robert Motl and Arthur Kramer of the University of Illinois and Erin Snook of the University of Massachusetts, Amherst, appears online in the journal Brain Research and will be published in a future print edition.

The study involved 21 women diagnosed with relapsing-remitting MS. They were compared with 15 age- and education-matched healthy female controls. The study assessed fitness, cognitive function, and structural changes in all participants.

In order to measure fitness levels, the participants underwent a VO2 max test, in which they rode a stationary bicycle until they felt exhausted. During the test, they breathed into a mask which measured their oxygen consumption.

All the women also took a variety of tests designed to evaluate cognitive functions, such as processing speed and selective attention. In one test, for example, participants had to write down in one minute as many words as they could think of that began with the letter "F." MS patients generally perform poorly on these tests compared to healthy people.

The third analysis involved MRIs of the participants, revealing any damage to their brains.

As expected, the MS patients did much worse than the healthy controls on the tests of brain functioning, and showed more deterioration in their brains as revealed through the MRIs.

But what was interesting, Prakash said, was the significant differences between the more aerobically fit MS patients and those who were less fit.

Take, for instance, lesions, which are the characteristic feature of MS. Lesions are areas of inflammation in the central nervous system in which neurons have been stripped of myelin, an insulating protein.

"Physically fit MS patients had fewer lesions compared to those who weren't as fit and the lesions they did have tended to be smaller," Prakash said. "This is significant and can help explain why the higher-fit patients did better on tests of brain functioning."

Aerobic fitness was also associated with less-damaged brain tissue in MS patients, both the gray matter and white matter.

Gray matter is the cell bodies in the brain tissue, while white matter is the fibers that connect the various gray matter areas.

The study found that fitness in MS patients was associated with larger volume of gray matter, accounting for about 20 percent of the volume in gray matter. That's important, Prakash said, because gray matter is linked to brain processing skills.

"Even in gray matter that appeared relatively healthy, we found a deterioration in the volume in MS patients," she said. "But for some of the highest fit MS patients, we found that their gray matter volume was nearly equivalent to that of healthy controls."

Another MRI analysis involved the integrity of the white matter in the brain. In MS patients, the white matter deteriorates as the myelin is stripped from neurons. Again, higher-fit MS patients showed less deterioration of white matter compared to those who were less fit.

Overall, the three MRI tests in this study showed that parts of the brain involved in processing speed are all negatively affected by MS – but less so in patients who are aerobically fit.

Prakash noted that other researchers have found that exercise promotes the production of nerve growth factors, proteins which are important for the growth and maintenance of neurons in the brain.

"Our hypothesis is that aerobic exercise enhances these nerve growth factors in MS patients, which increases the volume of the gray matter and increases the integrity of the white matter," she said.

"As a result there is an improvement in cognitive function."

Prakash and her colleagues plan to extend this research by studying whether exercise interventions with MS patients can actually improve their cognition and have positive physical effects on the brain.

"For a long time, MS patients were told not to exercise because there was a fear it could exacerbate their symptoms," she said.

"But we're finding that if MS patients exercise in a controlled setting, it can actually help them with their cognitive function."
Julia
Getting to Know You...
 
Posts: 16
Joined: Tue Dec 01, 2009 4:00 pm
Location: Akron,OH

Postby AMcG » Mon May 03, 2010 4:07 pm

A really useful article. Thanks for posting.
User avatar
AMcG
Family Elder
 
Posts: 194
Joined: Thu Dec 31, 2009 4:00 pm
Location: UK

Running with MS

Postby Alexandra » Mon May 03, 2010 11:15 pm

Dear Julia,

I have the same problem as you. I used to run on daily basis until my second attack of optical neuritis and numbness in my right toes, which scared me a lot. I also have heat intolerance and since I live in Dubai, this happens quite often.
I asked several neurologists about running and they all said I should not stop, but swimming is better. I noted that the exhaustion from running sometimes worsens my symptoms and I stopped. I will start running again from this week after almost 3 months break and I will let you know how it is going for me.
What I also noted is that while I was running, on no treatment, I had an attack at 7 months while after I stopped, it was more often. Now I have started the treatment on Avonex and I want to run again. I don't know if less attacks were because I was just diagnosed and the disease just started, or because running actually helped.
Please let me know how it is going for you also.

Wish you health
User avatar
Alexandra
Family Member
 
Posts: 46
Joined: Fri Feb 05, 2010 4:00 pm

Postby Julia » Tue May 04, 2010 6:42 am

What I also noted is that while I was running, on no treatment, I had an attack at 7 months while after I stopped, it was more often.


Alexandra - That gives me hope, I talked with someone else who runs with MS and they stated that every attack means starting from square one, but it is worth it in the end.

I am not sure what to expect either. Everything is so new, as I was just diagnosed with MS in Oct. I have been running shortly after my IV steroid treatment and I have progressively built up the mileage from square one. Yesterday I ran 5 mi and felt the best I have since Oct. Of course my times are around 1 minute slower than last year at this time, but I also have been using a heart rate monitor to keep me at a lower range and to make sure I am not over-training.

I hope to have good news for you, but I guess time will only tell. Currently, I have opted out of any treatment and have changed my diet to follow the BB MS diet (with some legumes). I am experimenting with all of this because all I can gather from this disease is that it effects everyone differently and there is no right answer. I hope you have success and maybe we can be support to the other!
Julia
Getting to Know You...
 
Posts: 16
Joined: Tue Dec 01, 2009 4:00 pm
Location: Akron,OH

Running with MS

Postby Alexandra » Tue May 04, 2010 11:24 am

Definetly I will update you how it is going for me and what else I found out. you can also talk to me directly on yahoo or messenger if you want.
After I have seen 9 neurologists, I got to the same conclusion. there are no right answers about so many things. Initially I have taken the same decision to go without treatment, but unfortunatelly that didn't work for me. It seems mine is quite active and I am trying the treatment side and suppliments and exercise. Again, we'll see how it goes in the next months. I do have hope.
User avatar
Alexandra
Family Member
 
Posts: 46
Joined: Fri Feb 05, 2010 4:00 pm

Postby Julia » Wed May 05, 2010 5:37 am

After I have seen 9 neurologists, I got to the same conclusion. there are no right answers about so many things. Initially I have taken the same decision to go without treatment, but unfortunately that didn't work for me. It seems mine is quite active and I am trying the treatment side and supplements and exercise. Again, we'll see how it goes in the next months. I do have hope.


I hope all of the treatment goes well for you, I may be there someday. Or maybe there will be a cure and we can both run a marathon a month - talking about MS cures.
:D

I guess that is my hope with all of this, that I can try to do as much as I can for as long as I can. I think that is all we can do - there is so much unknown. Thank you for your replies and I will update you as much as possible. I also have a blog http://julianeal.blogspot.com/ where I talk about MS and my exercise joys/lows and life.
Julia
Getting to Know You...
 
Posts: 16
Joined: Tue Dec 01, 2009 4:00 pm
Location: Akron,OH

Postby Julia » Wed May 05, 2010 5:39 am

Oh yes, and my favorite quote (reminds me that trying is NEVER a bad thing):

“It is not the critic who counts: not the man who points out how the strong man stumbles or where the doer of deeds could have done better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood, who strives valiantly, who errs and comes up short again and again, because there is no effort without error or shortcoming, but who knows the great enthusiasms, the great devotions, who spends himself for a worthy cause; who, at the best, knows, in the end, the triumph of high achievement, and who, at the worst, if he fails, at least he fails while daring greatly, so that his place shall never be with those cold and timid souls who knew neither victory nor defeat." --T. Roosevelt, 1910
Julia
Getting to Know You...
 
Posts: 16
Joined: Tue Dec 01, 2009 4:00 pm
Location: Akron,OH

Postby harpgirl » Sat Jul 17, 2010 8:53 pm

Those of you that run, do you struggle with spasticity? I have painful spasticity and work hard at keeping it under control. I tried running this week, just a little then walked mostly. Want to start a running plan for myself, but not sure the spasticity mixes well with that idea.
User avatar
harpgirl
Family Member
 
Posts: 57
Joined: Mon Jul 05, 2010 3:00 pm

Postby ShakyJay » Sat Jul 17, 2010 11:29 pm

harpgirl wrote:Those of you that run, do you struggle with spasticity? I have painful spasticity and work hard at keeping it under control. I tried running this week, just a little then walked mostly. Want to start a running plan for myself, but not sure the spasticity mixes well with that idea.


Went and saw my neuro in Colorado this past week, I have been on a pretty strict workout regime for the past three months and have been having trouble with spasticity in my left leg. He said that swimming would be good if I can't ever do the normal workout, I know pretty typical stuff, and I am already doing that, but just thought I would pass that along. He said that he could write a px for it and it might get me a discount at a gym as well-FYI.
User avatar
ShakyJay
Getting to Know You...
 
Posts: 19
Joined: Fri Jan 08, 2010 4:00 pm
Location: Kansas

running with ms

Postby Alexandra » Sat Jul 17, 2010 11:32 pm

Hi Julia,

Lovely to hear from you. It helps a lot talking to others that struggle with the same issues. It is quite frustrating to see that you can't do what you used to do with pleasure.

To answer your questions, I also have spasticity. After testing my running capacity for the last 4 months, i got to the following conclusions:
- first of all, my running capacity clearly decreased
- spasticity is due to the heating of the body. to fight this I came up with a training plan. I don't run two days consecutive. One day I run, one day I do yoga, next day I might run again or do some stepper and bycicle, then swimming, stretching or weights.
- i don't run 20-30 min continuosly now. because i hit up and that leads to spasticity
- there is a book running with ms that helped me understand the mechanism. I run two min, walk one min. i do this for 25-30 min. but u can extend it if u feel u can do more
- after running, do not take hot showers. that raises ur body temperature even more
- last but not least, I take suppliments that seem to help a lot my running and my wellbeing. I take 2000units fish oil (pure), 1000units vitd, turmeric extract 400mg (one capsule) and vitd sublingual. also green tea seems to help

the quote you wrote is beautiful and fits us so much. thank you for it. I hope my experience will help u

wish you lots of health and a life free of attacks
User avatar
Alexandra
Family Member
 
Posts: 46
Joined: Fri Feb 05, 2010 4:00 pm

Postby harpgirl » Sun Jul 18, 2010 3:08 pm

Thanks Alexandra, I have all those supplements. Where did get the booklet "Running with MS.? Would love to read it.

You guys have given me much to think about. I really appreciate it.

I like the rotating concept.
User avatar
harpgirl
Family Member
 
Posts: 57
Joined: Mon Jul 05, 2010 3:00 pm

Postby Bubba » Sun Jul 18, 2010 7:11 pm

If anything, I believe exersize helps. I NEVER excersized until my diagnosis. I feel better, have more energy, and stress and sleep is ALOT better for me. Keep it up!
w/m 44
The problem comes with the decision of weighing the unknown with the unknown.
User avatar
Bubba
Family Elder
 
Posts: 486
Joined: Fri Feb 13, 2009 4:00 pm
Location: Turkey Creek, Florida

Postby Julia » Mon Jul 19, 2010 5:22 am

I completely agree with the idea of running two minutes walking two - or some people find it easier with 1 min run, 1 mi walk. Recovery is key. I also have found that I must get up early to run in the summer (5 am) to help keep me from getting overheated. I get spasticity after workouts, but not continually...yet.
Julia
Getting to Know You...
 
Posts: 16
Joined: Tue Dec 01, 2009 4:00 pm
Location: Akron,OH


Return to Exercise and Physical Therapy

Who is online

Users browsing this forum: No registered users