To Dis or Not to Dis

An interesting thing happened to me this week that has really given me a lot to think about. It’s not something I considered before, but am now wondering why it never occurred to me.

If you have a visible disability, ie you use a wheelchair for mobility or have a seeing eye dog, the general population will see you as disabled or differently abled. As MSers we all are aware that some disabilities are invisible. I have no obvious sign of a disability and even a doc would be hard pressed to find me disabled. I work full time, participate in family and community activities, exercise on a regular basis and do this without any assistance mechanical or otherwise. OK, so the Wookie helps me clean up the apartment from time to time, but he’s also at my place so much, it’s only right. But if you didn’t know me and the fact that I have MS, you wouldn’t consider me disabled.

This week, I was meeting with a couple of the gals at the MS office about an upcoming political meeting I will be facilitating about disability issues. I was asked how I wanted my bio to read: member of the disabled community or someone with MS or whatever? I was taken aback because I don’t identify myself as a disabled person. I am a person living with MS, possibly with the threat of disability, but at this point in time, I am not disabled. Yet, these gals consider me a part of that community.

Very interesting, I thought. The gang I work with don’t consider me part of the disabled community (I've asked them), but a couple of the gals at the MS office do. This event, though a small one, has left me wondering about a number of things. Who thinks of me a member of a disabled community? Who doesn't? Because I have MS, does that automatically define me as disabled? When I was using a cane and couldn't drive because of right sided weakness and numbness, I didn't consider myself disabled, though by definition alone, I truly was. It never crossed my mind.

I asked the Wookie for his opinion about my abilities. He said it all depends on the context. He's seen me on those days when I can't go another two feet and have to lie down. He's seen me drop my utensils at dinner and had to rub my feet to ease spasms. Those times he knows I have MS and though not medically disabled, definitely affected by symptoms. Most of the time it's not apparent.

I did a quick search on the net about "self reporting of disability". I came across the WHO website and read a few things about the subject. I now realize that there is much more to disability than physical disability. Socio-economic factors, personality, and education all play a part in how we define ourselves and how others perceive us. And that is an important reason why governments, charitable organizations, and health care workers have to consider treating a person's life and not just their disability. It's fine for a government to provide an accessible bus or taxi, but the cost may be prohibitive for its use. An organization may provide a wheelchair but if the home the person is living in has a bathroom that's too small for a wheelchair, there's not much point.

Disability is so much more than a physical state. It's a state of mind, too.

S.

Too Busy

I have been busier than a one armed paper hanger as they say. Hiking, biking, and work, has taken up my time for the past week and a half, not to mention a river clean up and the Halifax MS Walk to MC. I did manage to drop in to Joan's MS chat Friday night before I completely melted into a messy puddle from the heat. My apologies for being gone so long. But I did take pictures:
The first one is the gate at the top of the fish ladder. It was full of gaspereaux and suckers resting after making their way up the ladder. They will go through the gate and continue upstream. We scooped out several of them and gave them a bit of a start on the other side of the gate:




Farther up stream, a rough crossing that had been put in place 40 years ago for construction access and then used by off road vehicles, was rebuilt to keep the vehicles off the river and return it to what it was naturally: a channel for fish to get from the river to one of the lakes, and then continue up stream:


On the other side of the channel is a series of logging trails that are completely accessible for hiking and biking. The Wookie and I will be riding on some of those trails this summer. If he ever gets back from his business trips....

S.

Little Bits of My Week

I've been hiking and biking all week when I haven't been at work. And when I haven't been doing those things I've been arranging stuff for a big fundraiser our bike team, the Cycledelics, is hosting at the end of June. So it's been a rather busy week. The cocoon I took home on Easter weekend produced a gorgeous cecropia moth, as I suspected. It's out a month earlier than its compatriots, only because I left it in my warm apartment rather than the fridge:


Earlier this week on a hike I came across this little fella in the grass along the trail, far from a tree and leaves. So I took him home and put him under the microscope:


His fuzzy armor up close:


The wild strawberries are in full bloom so I will have snacks on my treks next month, albeit, little snacks:


And the final pic for today is a piece of wood. Actually, it's an exposed tree or bush root, about 2 inches in diameter, but the texture and look of it is much like that of a person who spent too much time in the Florida sun:


Some of this long weekend (Victoria Day weekend in Commonwealth countries) will be spent on spring cleaning and hopefully a couple of hikes and a 15 k ride. I wasn't sure how the legs would hold up on the bike this week after having not ridden since late last year, but I was in pretty good form. All that hiking and trekking through the woods paid off. Oh, yeah, speaking of trekking, Star Trek is also on the agenda. Live long and prosper!

S.

Waterfall Wonderland

We got out to the waterfall yesterday. Absolutely spectacular. We found the right road into the woods, parked the car in the parking lot, and as soon as we stepped out of the car could hear the water. As we walked down to the falls, you could feel the temperature drop by a few degrees. The water, the rocks, and the shade of the old growth pine and fir trees contributed to the chill, but when I saw the falls, I had goosebumps. The Wookie took this picture:


The falls are about 30-40 feet high. And there is another waterfall close to it:


I started out at the top of the main waterfall and took pics, working my way down. Actually, I didn't get too far as the terrain isn't great unless you've got ropes:


My pics really don't do the site justice. Almost everything in the woods was covered with moss and sitting on it was like sitting on a shag carpet. We hiked downriver along the ridge above the flow but failed to find a way down. that will be for the next trip out there. But I did find what, at first, made me think was a gigantic pile of bear poop:


It's actually a chunk of fungus that was knocked off a tree. Thank God, as the size of it would have indicated a grizzly in the vicinity. And we don't have grizzlies in this part of the country. But I had to take a pic of it for Linda at Braincheese.

I love this picture the Wookie took. Kind of a Where's Waldo, but with me instead:


And so concludes our trek to the waterfall. We'll be going back as there is another path that can get you to the bottom of the falls for another perspective. The Wookie wants to go back some morning before sunrise to get the light streaming in as the sun comes up. Um...ok....I'll bring coffee.

S.

A River Runs Through It

Last Sunday was the first time the Wookie and I went for a walk since I banged up my butt. We had received information about a waterfall and so wanted to hike to it. Sadly, we didn't find it, though we had a great 2 and a half hour hike, some of it through untrailed woods along a river. A little bushwhacking was in order. We started close to the mouth of a small river that had a few
really gnarly trees that were like something out of a horror story:

There's a closer look at this tree at the end of this post.

The river runs through a small gully. We saw lots of deer sign and the Wookie claimed he could make out a bear track. It was rather old and faded though, so I'm not sure. Either way we continued on. We found a sac of frogs' eggs. I'm used to the jelly like substance that encases the frogs' eggs in the Wookie's pond, so this one was new to me. It had the appearance and feel - or at least what I imagine the feel to be - of a silicone breast implant. Very cool.

More fiddleheads(can't wait to get a pound at the grocery store or farmer's market):


One of the "relaxing" spots along the river:


As we hiked, the terrain started to get a little rougher, the rocks bigger and more jagged, and we were closing in on the waterfall. According to Google Earth, we were about a half inch from it....lol. We had to turn back in order to get to our Bike Team meeting on time. But after rechecking Google Earth, we now know where exactly to enter the woods to find the waterfall. That's where we're going this morning.
My favourite picture from the day is this one: a cross between Salvidor Dali and Edvard Munsch.


You could almost hear the tree moaning...

Anyway, we're heading out to the waterfall this morning and should have some spectaulr pics later.

Fish Ladder Clean Out

Last saturday morning I went to help out with the fish ladder clean-out. It involves blocking the river in front of the top of the ladder so the water drains and we can shovel out the detritus that has built up over the winter. First they put a piece of plywood in front of the top of the ladder and putting plastic over that:


A couple of the guys had come up a couple of days earlier to cut up the tree that had been swept downstream and onto the ladder so it could be moved:


Here the water has gone down enough for the guys to start shovelling the rocks, leaves, and other stuff that got stuck in the ladder. Notice I am absent from these pictures. My back is still healing and while I can walk almost normally now, I couldn't quite do the bending required for the heavier work:


While the guys were doing the heavy stuff I went for coffee and then spent some time sitting in the river, downriver, looking for various aquatic bugs. And checking out the fairy ring of ferns growing on a small island:


In the middle of the clean out we were joined by a feathered friend. Definitely click on the pic for a better look at this eagle. It sat there quite patiently watching us for about 5 minutes before leaving:


I had a most excellent nap after wards. Getting coffee and looking for bugs is hard work you know.

S.

We Are The CHAMPIONS

383 people were recruited for the Avonex CHAMPS study in the late 90s, randomized into placebo-taking or drug-taking groups. After two years, results showed a benefit to people on the drug versus those on placebo, so everyone in the study was put on the drug. At 5 years numbers showed a benefit for long term drug use. This was the CHAMPS study.

A study was then constructed to look at even longer term results. This was deemed the CHAMPIONS study. Results were released last week in Seattle. First glance suggests good things about getting on a disease modifying therapy early and sticking with it. I say first glance because the number of participants was low. In the initial study there were 383 participants. In the second, 155. How did they lose over half the initial study's participants? Are 383 and 155 enough participants?

They lost participants partly due to compliance issues. I know one woman personally who couldn't tolerate the side effects of the drug so went off it. Some folks just couldn't handle the needle every week. I've heard of others who had adverse effects, so had to go off it. Whatever the reason they stopped Avonex, they were out of the second part of the study, and probably some dropped out of the first. I wonder if the company followed them anyway. It would be interesting to find out what, if any, changes there are in their health. As to the question of the number of participants, I don't know the answer.

I was on placebo in the CHAMPS study. For 18 months I injected myself with water, not knowing if it was water or Avonex (though secretly I thought it was placebo). I had a relapse and was determined to be clinically diagnosed MS at that point (before I had only the clinically isolated syndrome). After a year on Avonex I called their help line at 3 in the morning in tears wondering if the side effects would ever wear off. I took my shot in the evening along with two extra strength tylenol and would go to bed. And wake up four hours later in agony. The person on the other end of the phone assured me the side effects would lessen with time. The next time I saw my family doc, I told her about the side effects waking me up in pain. She gave me a new product, 8 hour arthritis tylenol. Hallelujah! So I used the samples she gave me, slept through the nights I took my shot and was able to get up in the morning and take more regular tylenol before the side effects arose again, thus keeping them at bay. I understand completely why some people opted out of the study. Again, I'm one of the lucky ones who was able to tolerate the side effects.

I have also been a part of the CHAMPIONS study. I'm one in 155. Almost 10 years after starting Avonex, I have a pretty good routine and the side effects have lessened considerably. I have almost no side effect hangover the day after my shot and I have had only one relapse since beginning the medication. So it appears to be working for me.

There are criticisms of both studies for valid reasons. The first study was to determine if Avonex was effective in delaying the onset of CDMS after one CIS event. After showing that it did, a second study was constructed to follow those on Avonex and see if relapse rates were significantly reduced. One of the problems is that the researchers could cherry pick the participants - though in reality they were just following a group of people who had already showed a positive result (as a group) to the drug. I am going to be asking these questions at the MS Clinic in days to come to see what I can find out. I still believe that early treatment is the best option we have right now.

The main idea of this post is to encourage those that can, to get on a treatment early. People are being diagnosed earlier in the course of their illness, so they qualify for these drugs. Until recently many people had to wait years before getting a diagnosis and because of the delay in beginning treatment, may have suffered irreversable damage and/or disability. These drugs are not the be all and end all. They are a way for us at this point in time to delay the onset and progression of this disease. They are a stepping stone to a better treatment or *gasp* a cure.

S.

How To Get More Money

I went to a lecture last week about who pays for neuroscience research. The guy giving the lecture is currently a professor at a university in Arizona. He packed about 3 hours worth of information into one hour plus a question and answer period after wards. My head was reeling after the lecture, but I came away with a better understanding of how much money there is in scientific research in general and who pays for it. While there is a great deal of public money that goes into research, there is also a lot of privately funded research. By private, I am referring to any organization that doesn't receive any, or a very small percentage of, money from government sources. My question was how do we convince the non-scientific community, the general public, that money is needed and well used?

The main thing that I got from the lecture was that everything all comes down to communication. I thought a lot about this concept over the past couple of days and have realized that most of life come down to communication.

Animals communicate with one another on very basic levels, through sounds, odors, taste, visual displays, and touch. Humans have an even greater tool they also use: speech. It is a most effective tool when well thought out and researched and then combined with those other senses. When I speak to a group of people about my experiences with MS, I have often used props to explain the disease, like a cable with the insulation cut away, or I have everyone undo their shoelaces, sit on one hand and have them try to retie the laces one handed. I combine speech with a visual display, and it's highly effective.

As MSers, we want more money to be spent on funding research that leads ultimately to a cure. We spend countless hours holding fundraisers for our cause and for the most part it's peanuts, compared to the government or philanthropical (like Paul Allen or Bill and Melinda Gates) coffers out there. So how do we get more money from those sources? By more effective communication.

Everyone knows that the key to finding answers to scientific questions is through scientific research. There are so many causes out there, it's not enough to simply state to a government rep that people are sick and we need a cure. They know that already. We need to explain and show what the benefit of funding research is. We need more people speaking out to whoever will listen. We need researchers to speak out as well, explaining where we are and how much farther we need to go. We need the media to educate themselves so as to better educate their audience.

We need to consolidate our research as well. Communication between agencies and between researchers must be encouraged. By sharing everything we have learned so far, we might just figure this out.

S.

Bugs, Birds, and Brains

As always, click on the picture to get a better look.
This little thing is probably a cicada pupa, though I'm afraid it's long left this world, just the shell appears to be what remains. It doesn't have a protective covering and it was just laying in the middle of a dirt road. It may have been (accidentally) dug up from the ground over the winter or even last fall. Still, it was cool to look at.


The next two shots are the ones taken by the Wookie of one of the osprey nests. The first one shows one of the birds landing with more material to shore up the home.


I suspect in this picture, the two birds are discussing the whole Chrysler situation:


I haven't been out all week for any exercise as my back muscles needed to heal. I'm going to attempt to help clean out the fish ladder today and if all goes well, we'll be hiking tomorrow. I got directions to a different hiking trail close to where the Wookie lives so we'll be checking that out.

Earlier this week I attended a lecture about who pays for neuroscience research. The guy who gave the lecture crammed in so much information into that hour my head was spinning and it gave me so much to think about I've had trouble writing it down. But an analysis is coming...

S.