The Eyes Have It

For all of my adult life I have been getting my eyes checked every two years. Last night I saw my eye doc and he said he hadn't seen me in 3 years....whoa! Don't know how that happened. Anyway, I had a good check up, everything looks fine. I haven't had optic neuritis and there's no sign of it now.

I had the chance to ask Dr. Cruz about some of his equipment. I specifically wanted to know about the magnification of the tools he uses to look at my eyes. It's 10 times magnification but capable of 60 times (just like my microscope). I told him about the world's best Christmas gift ever, and he was excited, too, as he thinks his kids would like it. I also told him I wanted to check out the Wookie's retina and he said as long as the pupil is dilated I should be able to see it with my microscope. Yay!

Several years ago, probably 7 or 8, I had an ocular event that necessitated an extra trip to Dr. Cruz and then to see a specialist the next day at the hospital. Everything was fine in the end; turns out it was the typical flashes and floaters that usually resolve themselves. But he saw me quickly because of the MS. That's when I found out that he did some research on optic neuritis with a couple of the neuros at the MS clinic in Halifax. Cool. So he knows the players in my health care, and he's done some extra study of the issues particular to MS patients. It was just another example of the horseshoe I have so firmly entrenched in my butt.

It's strange, but I never sought out my current family doc (I got a referral to her from another GP when I was living in another province and planning my move back to Halifax 15 years ago), but, boy, was I lucky to get her. And as for Dr. Cruz, I think I just looked him up in the yellow pages when I needed an eye exam. I got lucky, as I later discovered after the MS diagnosis. Even my dentist is very interested in my MS, reading up on stuff related to it.

And all these folks seem to have an excellent sense of humour, so can appreciate my attitude to most situations. Or maybe they're just being polite, laughing at my jokes and agreeing with my observations.

S.

The pics are one of my eyes and one of the Wookie's.

Cold Silver Lining

It has been freakin' cold this week. Colder than usual. Painful cold. Freeze the tears on your cheeks cold. Driving to work yesterday along the Bedford Basin and the Halifax Harbour I was witness to the phenomenon of "sea smoke". Looking at this took some of the bite from the cold away and I thought I should go out this morning to document it. I'm freakin' crazy, but apparently not the only one as I caught 3 other people out taking pics along the drive.

Into the car by 7:30 on a Saturday morning and it's -21 degrees Celsius. Muttering swear words under my breath I wait for the car to warm up before driving. As I drive, my breath comes out and hits the windshield, condensing first then freezing and blocking my view. So I have to pull over and wait for the windshield to warm up a little more.

Finally, I can see again and I'm off to capture what I hope will be some good photos. Click on the photos to get a better look.






My last stop was back in Bedford, right where the Sackville River empties into the Basin, a favourite spot for a number of ducks, seagulls, and other water birds. I've been in and out of the car a few times and each time, my fingers, despite being encased in gloves, freeze. I caught a glimpse of what appears to be a loon or merganser, too far away to tell, but then a large white bird comes into view. One of the swans!


I don't know which swan this is, as we've had a few living in Bedford over the years, including a mating pair. A few years ago the male died and the following spring the female built a nest anyway. She had no mate, so local folks were concerned that the energy she would expend building the nest and laying (infertile)eggs would hasten her own death. Each time she attempted to rebuild the nest, it was dismantled until she finally stopped. She's been around ever since. I check on her during warmer months but on my training rides last summer around the area she normally resides I never saw her. Is this her? I don't know. But I was so pleased to see this creature this morning I knew coming out so early and in such evil cold was worth it.

S.

A Burden Shared is a Burden Halved

For those of you not familiar with the Carnival of MS Bloggers, please check it out (click on the Carnival button to the right or here). Herrad is the only entry this week. And it's a great one.

Many of us worry about how we may become, or have become, burdens on loved ones. It's why some of us paste smiles to our faces, or never say no to requests, or never ask for help. Forgive me for saying this, but that's a stupid way to live (and I'm as guilty as the next person for not saying no sometimes).

Saying to someone "I'm really not feeling great today, go easy on me" or saying "No, I can't bake cookies for the fair this week" or having your children clean up the kitchen after supper are not bad things at all.

Think how you feel when you've helped somebody. Good, right? Well, give others a chance to feel good, too. Ask for help with the chores, the cookies, or whatever. By allowing yourself to be helped, you are essentially helping someone else.

And there's a difference between making an observation and complaining. In Herrad's case, she says that she does not want to burden everyone with the progression of her MS, but I truly feel she is only making observations of her condition, not burdening her readers. As much as we don't like to face reality sometimes, this is Herrad's reality and the reality for countless others. It must be faced.

It's the reason I speak at every opportunity given to me to raise funds for research and support services. Herrad's reality may some day be mine. And if I don't face that reality, who will?

Leftover Remnants

One of the defining markers of MS is the remnants of "attacks". 11 years after my initial attack, I estimate that I am at about 97%. I still have measurable weakness in my right side and frequent pain in my right side extremities that I can only describe as similar to growing pains. It took only a few months to get back on track physically.Those are the remnants of my first attack.

My second attack, a year and a half after the first, involved the left side of my face. It drooped and chewing was exhausting. But that time it only took a couple of weeks to recover. And I did recover completely, though I do have a remnant from that attack as well; my left nostril occasionally loses feeling (not really a disability; luckily just somewhat annoying to me and interesting to the neuros and my dentist).

We know that the disease modifying drugs lessen the frequency and severity attacks, which in turn means less physical damage to the brain and less disability.

Why we recover in the different ways we do is still a subject of study. Some of us recover quickly from attacks while others don't. Some recover completely, while some are left with what is termed "residual disability" (RD).

I recently read a report on a study that adds support to the use of immunomodulating drugs for patients with MS:

"Findings indicated that RD after 1 year was observed in 54.5% of relapses. As well, higher risk of RD was associated with occurrence of a severe relapse. Incomplete recovery at 1 month was highly predictive of RD at 1 year....

Incomplete recovery at 1 month is a predictor of long-term persistence of RD. Higher relapse severity is also associated with higher risk of RD. Risk of severe relapses is lower in patients treated with immunomodulating drugs."

Every single event that happens in the brain leaves its mark, good or bad, chemically and/or physically altering the landscape of our gray and white matter. We are losing brain volume. Every relapse causes damage. And that damage accumulates, eventually giving us altered abilities. Logic says that reducing the number of relapses is good. Logic says that reducing the severity of relapses is good. The less damage that happens to the brain is good, right?

But what happens if you are medically intolerant of the disease modifying drugs? There are currently studies under way for more than 2 dozen different drugs (besides the DMDs) that show promise. Do some research, ask questions of other MSers who are on different drug regimens, talk to the folks at your nearest MS Society office and ask them to refer you to people willing to share their stories with you. Get information and if you don't understand it, find someone who does. If you're not a "take action" type of person, become one. Pretend it is your young child that needs assistance. You'd move heaven and earth to help your child, so do it for yourself now. You deserve it.

And while you are mulling over all the info and deciding what to do next, you can eat right, sleep well, and exercise.

Most of us have heard our neuro saying that where you are at 5 or 10 years after onset of MS is as good a predictor as any of where we'll be farther in the future. Of course, with MS, prognosis is next to impossible. Information from 10 years ago was predicting that by 19 years after onset, I'd be needing a walking aid of some sort. But since I've been taking one of the disease modifying drugs, I may have altered that prognosis and actually extended the time between onset and need of a walking aid. I'll let you know in 8 years.

S.

Whoops

OK, so I thought I had the video thing figured out but didn't. Will work on getting it to the blog soon....stay tuned.

S.

If a Tree Falls in the Forest...

Kim, at Sunshine and Moonlight posed the question: What happens to lesions when they've disappeared? So I asked the question to Mike, one of the neuro nurses at the MS clinic here in Halifax. The short answer is that they don't disappear, they just stop being active. Because they aren't actively inflamed, they don't show up on the MRI.

Now for the long answer.

Remember, MRI measures water content and water is composed of hydrogen and oxygen. First the MRI machine produces magnetic fields (causing all the hydrogen protons to line up in a certain pattern), then a radiofrequency electromagnetic field is applied. Energy from that second field is picked up by the hydrogen protons, and when the second field is stopped the protons release energy at a radiofrequency that can be detected by the machine. The position of the protons is what is measured. And we get pretty pictures of our insides.

When the protons release energy, they do so at a certain rate. Diseased tissue releases energy at a different rate than normal tissue and this is what is detected by the MRI machine and accounts for us being able to "see" lesions.

So, if a lesion is not detected, does it mean that it's not there? Here we get to that whole tree-falling-in-the-forest thing. An active lesion is one that is inflamed. Now we need an explanation of inflammation.

Inflammation involves the destruction of myelin. Just as when we have an injury to our skin, a number of processes occur. Chemicals and cells rush to the scene to detect "bad" cells and try to eliminate them; at the same time, "good" cells are trying to repair any damage. All this activity is what causes inflammation on our skin and it's much the same in our brains. Inflammation is the process of the body identifying the "bad" cells, eliminating them, then attempting to repair the damage. And if a cell dies in this process it is eaten up and eliminated as well.

All of this activity goes on for days, weeks, and even months before we are even aware we have MS or before we exhibit symptoms. Some lesions may have resulted in permanent injury to the axons of some nerves, what they call axonal degeneration. Shrinking of the brain, called brain atrophy, can occur. Remember, dead tissue is eaten up and eliminated by the body, and in the case of our brains, unlike our skin, it is not regenerated. So we end up with "neurodegeneration" and shrinking of our brain. Scar tissue remains, but there is no activity in it. So the MRI machines can't measure it. The lesion may be gone (when looking at an MRI picture), but the results of its previous activity remain.

So the short answer to "Where do the lesions go?" is nowhere. The scarring remains, damage may be permanent, but there's no activity in that spot of the CNS. At least, none that we are capable of measuring at this point in time.

I hope that answers the question. My concern is with people's "fixation" on lesion counts.

So why do we seem to be so fixated on lesion counts? Because right now, that's all we have to grab on to. That's all we have to physically look at and point to to explain symptoms. By the time we exhibit symptoms, the disease process has already been under way for some time and there's little we can do to repair the damage.

Sounds kind of grim, doesn't it? We know this process is going on continuously, so until we can stop MS, we do what we can to slow down the process of axonal degeneration and brain atrophy. Most of us get a course of steroid treatment in the early stages. The steroids quite often stop inflammation in its tracks, which is why we see such marked improvement with steroids alone (sadly, the risks of continued steroid treatment are too great for it to be used often). OK, so we stop inflammation, now what? You are given a choice of one of many disease modifying drugs. These drugs reduce the number of attacks and their frequency so you will go longer without disability. And that's all we can do right now.

Each attack results in inflammation, which can result in permanent damage and atrophy, so logically, we should try to reduce the number and frequency of attacks. While we are doing that by taking a disease modifying drug, we need to be doing other things to aid our bodies in the repair process. Exercise, eating right, getting enough sleep and rest, and reducing our "bad" stress levels are all things that we can do without expensive drug regimes. Exercise your brain, too, learn different things, or attempt them. It's the attempt that exercises your brain.

GPS For Your Brain

And here we go again....another first for Halifax and the Brain Repair Centre. GPS for your brain. Read the article here.

You might think that Halifax is a hotbed of neuro activity with all the posts lately about this stuff. And you'd be right. Because we have folks like Dr. Mendez who come here to live and work and play, we, as a community benefit. So if you've got a neuro type injury, this is the city you want to be in for treatment.

Much of the same can be said for MS treatment. 11 years ago, as I was being diagnosed I was explaining to my folks how lucky I was to be in this city. With the close relationship the medical school had with the hospitals, the excellent faculty of both schools and hospitals, and emerging treatments for MS, Halifax was the best place in the world to be diagnosed and treated for MS. It still is, I believe.

S.