I'm exercising doc, honest!

Brain Fitness Software Improves Cognitive Function in Multiple Sclerosis Patients Submitted by Denise Reynolds RD on 2010, March 18 - 14:53 All about: Brain & Nervous System 3Share Cognitive dysfunction is a common, often scary, symptom of Multiple Sclerosis. Cognitive evaluation techniques and neurorehabilitation studies have been used to greatly improve the dysfunction. A new brain fitness software by CogniFit Inc. May help improve cognitive function and skills of multiple sclerosis patients. Multiple Sclerosis (MS) is a chronic inflammatory disease that causes lesions in the brain and nervous system. It is reported that about 50% of people with MS admit to experiencing cognitive problems, such as the ability to pay attention, learn and remember information, solve problems, and use language to express ideas. Mood disorders and depression are also common which can exacerbate the cognition process. Some of the specific cognitive deficits observed in people with MS are: • Memory Dysfunction. This is the most commonly reported cognitive dysfunction in MS and occurs in 20 to 44% of people with MS. The type of memory deficit most often reported is free recall of recently learned material. Free recall is the ability to get to a memory instantly. • Verbal fluency is affected in some people with MS whereas verbal comprehension appears undamaged. Verbal fluency deficits usually take the form of slowed free recall of words that describe concepts and less often words that name objects. • Cognitive Fatigue. On average, people with MS tire more quickly during psychological tests. Patients appear to lose the ability to hold attention for a long period of time. • Impaired Planning Ability. One study reported that 40% of people with MS are less able to plan things than healthy controls. The independent study, published in the journal NeuroRehabilitation, found that CogniFit Personal Coach brain training software resulted in a significant improvement in 10 fundamental cognitive skills. Memory skill showed the greatest improvement, with a general increase of 21%. Visual working memory and verbal-auditory working memory improved by 20%. Other skills that showed improvement included naming speed, speed of object recall, focused attention, visuo-motor attention, and visual spatial working memory. Patients with MS can also use other techniques to help cope with cognitive dysfunction and memory loss: • Write everything down. Keep a diary, organizer, or notebook handy to make lists. Keep one calendar for all appointments and reminders of special days or tasks. • Organize the environment so things remain in familiar places, such as a fixed spot for car keys. Encourage all members of the household to do the same. • With communication, ask people to keep directions and instructions simple. Carry on conversations in a quiet place to minimize distractions and maintain eye contact. Repeat information to ensure it was heard correctly. • Keep the mind fit by doing puzzles, problem-solving games, etc.

an irritant

I've been thinking. One of the things about being an independent person is that you think you can do everything yourself, and you wander about, trying on your own, when really, having an advocate with you would be a much wiser thing.

Going to see the neurologist, for example.

I sat there at my last appointment, watching the doc lose interest in me as my disease just isn't quite exciting enough for him. I watched his face change as he changed his view of me from "potentially interesting client" to "over 50 woman who has whined for years about aches and pains and they probably aren't due to MS". I watched as his face changed from engaged to absent.

This happens a lot with this MS thing. I don't know what I am expecting - perhaps that someone might tell me why , if my disease is so minor, I am almost completely numb stem to stern, why my legs muscles spasm up and down without reason, why walking is so painful when it really shouldn't be. Or why on days like today I have trouble thinking and tend to drag my mental floss through brain plaque with no effect.

It's frustrating as hell.

And yeah, I know I'm not as sick as some, but I've gone from hours in the gym to not being able to walk more than a km. I've gone from full-time high stress employment to barely able to manage volunteer activities. My life has been destroyed over the past two years - not being negative, and stuff still remains that is good - but I mean, really.

So as I sat there and he told me my disease was merely an irritant to me, (see salt in wound...), I didn't speak up. I am always wary of pissing off my care providers. I know docs turn against the complainers.

But if I'd had an advocate with me, perhaps they would have grabbed the collar of my healthy neuro, and asked him the questions. Perhaps they might have demanded more. Not that there is much anyone can do. But perhaps I would feel a bit less tossed aside like limp lettuce.

I got my return visit letter the other day. The neuro doesn't feel I need to be seen again for another year. Surprising, the anger I felt getting that letter. Nothing like feeling unwell and being told that is unimportant to anyone.

Now that's an irritant.

Please play again...

It’s roll up the rim to win time at the local coffee shop (Tim Horton's) , so of course I had to step in and try my luck at the prizes. Often, in a desperate attempt to win a swanky new TV or a car, I’ve become caffeine addicted at this time, trying larger and larger cups so that I can better my odds of winning a big prize. I’ve won a few donuts, a couple of coffees, the occasional bagel.

Today when I stopped in, I was reeling - smiling from the sunny day, unexpectedly wonderful in early March, and shaken from my visit to the new MS clinic. I’d gone, my heart in my mouth, worried about what they would tell me about my illness. Had it advanced? Was I doomed to life no more exciting? Would I be expecting to slide into a wheelchair anytime soon?

Of course, they couldn’t tell me that, as life with MS is too unpredictable, but what they did tell me was world changing in its impact. The new doc thought that I probably didn’t have MS my whole past 25 years. He thought my disease was really quite benign. And that it would most likely be “an irritant, more than anything else”.

Okay, this was initially hard to take as I sat there, in pain, unable to see clearly, legs uncomfortable and sore, cane leaning against the wall (I need it for walks longer than several blocks). An Irritant? I’d say! My whole life has changed since I was diagnosed - I’ve had to leave work, sleep all the time, lost my feeling...and had leg spasms of the extreme sort.

But then, a slight glimmer of light eased in through my newly acquired Buddha-esque calm. He wasn’t saying I didn’t have MS, he wasn’t offering me an escape, but what he offered me was the first explanation I’d had of how serious this really was, FOR ME. I’d never had any feedback about this before. I thanked him, and wandered off towards my next appointment in a bit of a daze.

And then I stopped for coffee.

I chowed down on the bagel I wish I’d had for breakfast, instead of having to get up at the crack of dawn to catch the bus. I sipped my coffee and listened to the chatter around me.

And then I rolled up the rim.

It read, “Please play again”

And I thought, yes. I will.

Like the coffee, we all have the chance to win or lose with this promotion, this world. We still get the coffee, whether we win or lose, which was what we wanted in the first place. And we all have the chance to play again. For me, this sang in my heart, and I almost burst into tears in the shop - tears of gladness, because this time I didn’t win the prize that I didn’t want. This time, I was told I was free, to play again.

I’m still smiling.

medication mambo

One of the biggest thrills of being a "chronic disease" person is that people come at you with drugs for every little thing. Some people choose to take them. As for me, I'm a bit scared of the interactions, the risk of iatrogenic disease.But sometimes one needs the medications.

I know I need the Copaxone, or some disease modifying medication. Why? It apparently reduces flare-ups and damage from the disease. Apparently, and only by 30%- so it's not overly convincing...and the daily shots are toxic enough to my tissues that I have bruises and lumps under the skin for weeks afterwards. Of course, I could get a different drug, with its own set of problems.

And then there's the antidepressant that made me more depressed. Taking it made me suicidal, but no one thought of taking me off it - just told me to take more. Which has resulted in an increase in my blood pressure, now requiring more medication....

So, after consulting with the docs, I am now off the antidepressant. It's lovely, though I am perhaps less so. I've developed a tendency to swear more frequently, and am somewhat more easily angered. But why not? Some things are angrifying! And I like being able to feel emotions. It's novel.

Of course, the antidepressant was Effexor XR, one of the very very worst to withdraw from. My doc tells me to expect at least 2 weeks of hell. Many people can't take it and end up going back on the medication to deal with the side effects. I'm not enjoying the dizziness, the fevers at night, the feeling that my head is going to pop off, the muscle spasms, the general feeling of unreality. On the good side, because I have to deal with so much of that already with MS, it doesn't seem too unusual...and every day I have a little clearer morning, a little more of me rallying around.

In any case, I feel like the queen of drug induced illnesses, always wondering how much of the crappy I feel is due to the medications people give me. Is it all worth it?

And even more puzzling, have any of these drugs been adequately tested in women? Or are they all tested in healthy male subjects, just cos it's easier not having to deal with all those hormones?

Now that's something worth getting angry about!

Approach/Avoidance or rubber-banding and MS

Having MS requires a certain amount of elasticity. And ricocheting. And it must be very hard on those around us.

Recently I applied for a job. I just did the interview, and in doing the interview I realized the following:

1. I am very qualified for the position

2. I have pertinent experience, knowledge and wisdom to bring to the position.

3. I have done a lot in the years I've been in the workforce, after starting off the kids and attempting to support my ex (didn't do that so well, but there you go...).

4. Despite all this, my MS riddled body won't let me do the job. A job I otherwise could be good at.

So once again, I am brought up short, at the fullest tension of the elastic, and then sent snapping back into my MS box at high speed. I did the interview, but collapsed on the way home from fatigue. Today I'm toast. As they used to say back in the day when I was functional.

I feel for my friends, I do. They don't know how to support me. I try doing things, and they are supportive. They know the pre-MS me and hope like crazy I can get back there. When I try stuff, they sometimes tell me that that's good, it's good not to let my disability rule my life. I laugh rather quietly at that one. I'd give good money to tell my MS not to rule my life. UNFORTUNATELY, it still does, whether or not I give it permission.

Then there are the other friends, perhaps wiser, perhaps less optimistic, who tell me gently to enjoy the life I have now and stop trying to get back into the old one. They know about the elastic lure of the familiar, the fear of the slap back. My wonderful drug company nurse, Bonnie, bless her heart, told me gently that "many MS patients find that they are just all around better off letting that old life go, and are healthier and happier..." (I paraphrase, and she was much better at saying it than I). Sometimes I listen to them, and I decide to throw myself into my new, non-nursing, non-management, non-health care advocate life. I stop reading about health news, I go to ground and wallow in writing stuff. I try for joy.

But then an opportunity comes up, like this job I applied for. I have a look over my past accomplishments, and by jove, I've had a few. I stretched my career elastic pretty far, but there should be room for more. The lure of earning a salary again is big.

Being on paid vacation, like napping, becomes less of a joy when it is mandated. And tight on the money side...

So I stretch. And I fail. And it hurts again, to realize all that I've lost. To realize that this IS my life.

What is left of it.

Oh, and bonus, I can look forward to years of it, gradually getting more limited.

Is there any better reason to fly into fancy and visualize getting back into the pertinent workforce? Or alternatively, buying a motorhome, and running away from everything? While I can still drive?

Oh, escapism. How I love it. Especially in February.

Despite the gloom over my interview, the sun came out today, and shone brightly and warmly. It is a good thing some things don't depend on me.

Exercise and MS, or hey, let's help ourselves!

All the noise and chatter about CCSVI and the demands for treatment immediately ignore the things that we can do for ourselves, right now, whether or not you believe in the reflux theory or the autoimmune theory.

But like many things, it involves personal effort, not an automatic cure applied by someone else.

And it isn't easy. And it often hurts. And our MS bodies seem to not want to do it.

It's exercising. Yeah, we all are losing our abilities to do this, we are all less able to exercise whatever muscles we have, but the ones still left can and should be exercised, even if we feel too tired to do so.

Today I was in too much pain to walk earlier this morning, but once I'd thawed a bit, I was able to do some exercise, and I feel better for it. I was sore because I'd overdone the exercise thing the other day, but I'll probably do it again. I feel an overwhelming need to do so.

First, aerobic exercise pushes the blood around my body. This is good for my leetle grey cells, as Poirot would say, and if I do have a blockage, the increased blood flow will inflate those veins as well as a tube. Plus my lungs need a workout, and I like sweating.

Second, the strength and stretching exercises, like Yoga, go a great ways toward stopping my spasms and twitchings. Worth the 30 minutes of wondering about whether I can make it to stop the hours of discomfort from the spasms.

Third, exercise helps reduce inflammation, one of the problems with MS. I figure the less brain inflammation, the better.

But fourth, and most important, my ex-mum-n-law is dying from ALS. She was just diagnosed and is slipping too quickly downwards. Yet, each day SHE exercises. With the scant muscles and air left to her, she exercises. She's 84, and breathing is a big challenge these days.

How can I look her in the eye and say I was too tired to exercise?

I can't. So I'm going to push my weary body, even when sore.

And you know what? I am already seeing a difference - in my thinking, in my emotions (wii punching is very good for that) and my muscle and core strength. If that delays my inability to walk by one day, I'm all for it.

So, maybe, instead of asking for a push-button cure and blaming everyone around for not coming up with it soon enough, why not work on ourselves?

(Can you tell I am totally totally fed up with the venom over CCSVI and the attacks on neurologists? Excuse me, I have to go do some more punching. If nothing else, all the frenzy will keep my upper arms fit.)

Need help? There's an excellent DVD available in Canada called "It's Your Choice". In the US you can get a DVD on yoga for people with MS. Tai Chi and aquacize is available everywhere. Walking helps, stretching helps. Just moving helps. Get hand weights and use them when you're watching TV. Or use canned food as weights. And for heaven's sake, use some of the energy you are wasting on calling names on the webboards and move your body. Even if CCSVI is a significant help, we'll still need to do a lot of work on recovery ourselves.

Exercise has protective effect on brains of multiple sclerosis patients

ANI

Friday, February 19, 2010 11:00 IST

Email

Print

Share

WASHINGTON: Exercise is good for the brains of patients with multiple sclerosis, a new study has found. In the new study, researchers found that highly fit multiple sclerosis patients performed significantly better on tests of cognitive function than similar less-fit patients.

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.

Pinga ponga eyes

I've always loved the cookie monster, and even forgive him his recent mad descent into liking fruits and veggies and only the occasional cookie...sigh. Fun has SO gone out of childhood.

But what I loved most about him were his mismatched, swingy pupils. He always looks vaguely crooked-eyed, and this was part of his charm.

Until it happened to me this Sunday. There I was, at a fun lunch with friends and suddenly my right eye decided it was just fed up with all this hanging around with binocular vision thing. She wanted to be free from Mr. Left, so off she went, shimmying away. Understandably, Mr. Left was a bit hurt, left out, as it were. So he's decided that he won't play with Ms. Right. (why they are male and female, I dunno. Maybe that's part of the problem....)

It's an interesting feeling, not having binocular vision. I've always had serious astigmatism, with one eye shortsighted and the other far sighted. It's been manageable, even without glasses, because the eyes would take turns taking the lead.

Now, however, they're in a fight for domination, and I don't like it. Riding in the bus today was an exercise in bizarreness, as they duked it out.

It's been two full days now, and I'm hoping they will settle down soon.

Worst thing is that it makes me nauseated, so eating cookies is out as a distraction.

Cookie cookie cookie, where are you now? And hey, don't gesture at me with those carrot sticks! Or whatever those things are...all three dozen of them.....whooooooo.