I'm losing my mind, and I have proof. I took part in a small study this summer that involved 3 hours of cognitive testing and two hours in an MRI machine. Two groups of women were matched for age and education levels, were tested and MRI-ed. One of the groups was made up of relapsing remitting MSers; that was my group. There was a significant difference found between the two groups: the MSer's response time to the testing was slower than the non MSers. As well, there were differences in size of certain parts of the brain; the MSer's parts were smaller. To put this in perspective, response times were measured in thousandths of seconds. So a difference between .600 seconds and .700 seconds (a tenth of a second) is really small in the grander scale of things. But the differences were still significant. I am losing my mind but at a fairly slow rate. This is a simplified version of the results of the study and keep in mind that it was a small sample size.
There are a number of components to brain function. Two of the main components are electrical and chemical. What we eat or ingest will affect those two components. Not enough sleep will affect those two components. In fact, anything we do or don't do will affect those two components, either positively or negatively. Whatever you do to or with your body will affect your brain, because it responds to the electrical and chemical activity of the body.
So somehow a microbe or lack of Vitamin D (or the alignment of the stars) affects your body. Your body and brain respond to that. If you're like me, your body starts to destroy the myelin in your brain. That one response causes more responses. Initially, I lost the use of the right side of my body for a short time and lost the feeling for a longer time. So as the myelin was being eaten away, which is an injury, an inflammatory process was under way. (The same thing happens if you get a bug bite. There's a slight inflammation at the site of injury, which is chemically induced.) Then a repair process begins and scar tissue forms.(Just like a bug bite) The scar that remains might be enough to allow complete or near-complete recovery, but like a repaired electrical cord, may not be as efficient as the original.
So what does this mean for cognitive ability? Think about all the chemical reactions going on inside your brain during an MS attack. And your neurons are firing but getting no results from your body. Maybe your fatigue is keeping you on the couch instead of going to the gym. Maybe you don't have the energy to prepare a decent meal. Maybe you can't focus your mind enough on a crossword puzzle. All these things contribute to declining cognitive ability.
And now we can show evidence of brain atrophy in people with MS.
As with many things in science, one discovery leads to more questions. Is it the disease that causes the atrophy or is it a byproduct of the disease? If we're not eating, sleeping, or exercising as we should, is that causing the atrophy? It may be a vicious circle as well. The question we can answer at the moment is "What can we do now to minimize the damage?"
The answer is right in front of us: Eat right, sleep well, exercise your body and your mind, and find some coping mechanisms to handle the "brain farts". In my case, at work, I write down everything I need to speak about when on air. They are just short notes with info that's relevant, but it gets the job done. I cross them out when I've used them so I don't lose my place. I have grocery lists that are great (when I remember to take them with me) and I sometimes make up to do lists. I leave things on the floor in front of the door so I remember to take them with me.
Eating, sleeping, and exercising are going to be future blog posts. Especially since two of the three are favourite activities of mine.
S.
The dating scene is tough enough for most of us. Add to that a diagnosis of MS (or any chronic illness for that matter) and it can be a little more than discouraging.
About 5 years ago, I began online dating. Honestly, I had a blast. I met some incredible jerks and some really great guys and I had some of the funniest dating stories to share with friends. It was never an issue for me to tell my dates that I had MS, most of them, anyway. It does not define me, but where I am so involved in fundraising for the MS Society and making public appearances for the cause, it is extremely important to me.
On your online profile you are supposed to indicate hair and eye colour, body type or size, likes, dislikes, etc. If you are on a disabled online dating site, you may be asked to disclose your disability.
But what if your disability or condition isn't quite so obvious? Like with MS. Many of us are not disabled and I couldn't in good conscience join one of those sites. So do you say on your profile that you have MS? Or is that akin to saying you have three heads? If I read a guy's profile and it said he had kids under the age of 18, I immediately crossed him off the list (I was not interested in dating someone with kids that young). Should I hold it against someone who would immediately cross me off his list after having read I have MS?
I did not indicate on my profile that I have MS. But it would be brought up in either online conversation or on our first meeting. Nobody ran away screaming, but a few guys were put off right away. Such is life. Some guys confused MS with MD. Some guys appeared not to be concerned about it, and that bothered me. Of all the guys I dated only one has become an actual friend. And one has become more than a friend
John clicked with me from almost the very beginning. He had a friend with MS and his mom was a neuro nurse. He has since become the love of my life. And he gives me a shot in my backside every week. (That reminds me...I'll have to write a post soon about the medication I take for the MS)
I guess the reason for writing this is to show that you can have a social life with MS. Choosing to have a social life may be the hardest part.
S.
I am on day 4 without a voice. Laryngitis has kept me from work and kept me from communicating. Today I sound like Rod Stewart....which isn't bad for Rod, but not good for a female radio announcer. I'm trying to rest, drink lots of fluids, eat lots of soup (gotta get my veggies), and waiting for the voice to come back.
I've had laryngitis a couple of times before. The last time the voice came back after a day. A few months after my diagnosis, I had a different kind of voice problem, though. I listened to myself on a tape and realized I sounded like I wanted to jump off the nearest bridge. I had no intonation, no expression. The voice was a monotone and I could have just won the lottery but sounded like a robot. No matter how hard I tried to put some expression in my voice it would not happen. I phoned the boss, saying I sounded like crap and that I should probably take a little time off (I was also extremely tired at the time, just coming down from my steroid treatment).
This was my first inkling that MS could affect my career. Every morning for several days, when I woke up, I'd read something aloud to see if the expression was coming back. And it did after about 5 days, but before that I wasn't really worried. I was able to write again after my initial attack, why wouldn't my voice come back?
I know now that anything I lose, could be permanent. With each MS attack, more damage is done, and it can be forever. Just look at the scars you have on your body. The appendectomy when you were a teen, the mark on your knee from the tree you fell from as a child, the chicken pox marks left over. It's the same in your brain. Myelin is destroyed, then repaired (if you're lucky), and voila! A scar remains. Sometimes the repair is sufficient to restore function, but sometimes it isn't. And the scar reduces the efficiency of nerve conduction. Or it could completely block nerve conduction, which may be forever. Or not. That's the stupid thing about MS. I met a woman several years ago whose husband began to regain sight after being legally blind for 13 years.
When you lose something to MS, it's always a wait and see approach you have to take. But how long do you wait for your legs to come back, your bladder, your sight? Your voice?
S.
Imagine you are living your life the way you think it should be lived. Perhaps you're married, with a child or two, your career is going fine. Maybe you run 3 or 4 times a week. You serve on a board for a charitable group. You volunteer as a scout leader. You sometimes eat too much, maybe have a cigar once in a while, or watch fluff on TV. Normal life.
One day, you trip over seemingly nothing. A day or two later, your fingers let things slide to the floor. You shake it off. God, but you're tired. A few months later, your legs completely go out from under you. Now you get to the doctor.
The doc does some tests and tells you it's MS. Do you tell anyone? Maybe you take a few days off from work. Your legs come back to you and you carry on as normal, but you know you are anything but normal. How do you tell people you have MS? You look normal.
Everyone decides at some point to tell some people and not others. Perhaps you tell your wife, but hide it from the kids. Maybe your best friend, but not your parents. Maybe you tell everyone. The reasons for keeping it to yourself or telling others are as varied as the number of people with MS. David Lander, Squiggy on Laverne and Shirley, told no one outside of his family for almost 20 years. He knew there were rumours circulating that he had a drinking problem, because he walked like a drunk. But he would rather people think he was a drunk than that he might have a disability. He was fearful that he wouldn't get work as an actor. (Read his book)
Many people fear losing their job or the medical insurance they receive with their job. Let's face it, it's expensive to be disabled. And it can be lonely as well. The disabled have a harder time getting around and sometimes a spur of the moment trip for a coffee with friends just can't happen. If you need assistance getting dressed and out of the house, then having to arrange transportation for yourself and a wheelchair or scooter, you need to be organized and have plans made well in advance. You can't just pop out for a cup of joe. As a result, if you are not working, your social life can become pretty thin. Even if you are working, a social life can still be difficult. Fatigue can make you want to lie down in the middle of the grocery store to rest. So if you're going out after work, you really have to calculate your energy levels.
And when you tell people you have MS, you have to deal with their insecurities as well as your own. Some people don't know how to handle it. That's fine actually, because you may still be learning to handle it yourself, and if they're good people they'll want you to help each other. Some of those people, though, might decide to distance themselves from you beause they're too afraid.
Do you tell your folks? Depends on your folks of course and again, like friends, some handle it better than others. Some folks and family members rally around and join support groups and do the walks and raise money. They take action. Others wait to be asked for help. Others completely ignore the fact.
And some people bury their head in the sand and ignore it for as long as they can.
Personally, I never understood not telling people, until I'd had MS for a few months. And I couldn't understand not researching the disease. But the more I knew about it, the more I understood why some people keep it to themselves. I don't tell everyone I meet that I have MS, but it's not a secret either. I've mentioned it in passing a few times on the air when I've talked about the upcoming MS Walk or the Bike Tour and since I am the go-to person for local media outlets when they need a soundbite or person with MS to comment on a new study, I am no stranger to either the papers or TV.
Some folks feel the need to keep their diagnosis to themselves. I cannot. There's too much that needs to be done for me to keep quiet.
S.
So another story I read as a child was The Monkey's Paw. You can find a hard copy in almost any anthology of gothic short stories. The author, W.W. Jacobs, wrote a number of sea tales which are humourous, pleasant stories of the life of sailors. The Monkey's Paw is a drastic change from those "nice" stories.
If you haven't read it, do so. If you don't want to, here's a summary. A couple in England, late 1800s entertain a British soldier one evening. As they sit around the fire after supper, the visitor removes a monkey's paw from his pocket, a souvenir from his time in India with the British Army, and throws it on the fire. He explains that it was given to him and he was told to make 3 wishes. The husband resuces the paw from the fire, though the visitor advises him not to do so.
After the visitor leaves, the couple wish for some money. The next day, a man from an insurance company comes to them with news that their son was horribly disfigured and subsequently died the night before at an accident at the factory where he worked. He gives them a compensation cheque.
The story becomes more horrific and downright scary, but the main idea is that you should be careful what you wish for.
That message has stayed with me since I read the story in elementary school. And for most of my life I have been careful about what I wished for. Until 10 or 11 years ago. In my "Horseshoe" post, I mentioned Dr. Murray. He is currently one of "my" neurologists. But even before I had met him, I had heard of him. He was an X grad, he guest-lectured often about medical subjects, and his hobbies included diagnosing the illnesses of historical figures based on accounts of their lives and behaviours. Very cool stuff as far as I was concerned. I met a friend for lunch one day, only to discover he was doing some work for Dr. Murray. "That must be so interesting," I was very excited for Charles to be working for Dr. Murray. "I'd like to meet him sometime'" I told Charles.
A few months later, I met a woman, Roxy, who was Dr. Murray's secretary at the Department of Humanities at Dal. Again, I was thrilled. And I told Roxy, "I'd like to meet him."
4 months later, a week after my diagnosis, I was sitting in the MS Clinic in a johnny shirt shaking the hand of the man I had wished to meet.
S.
A study was released this week detailing the number of creatures living in and on us as humans. (And I can't seem to find the link right now) It's more than we thought. Which is no surprise to me. I've been aware of the presence of these helpful organisms for a long time. I've been aware of the presence of the unhelpful ones almost as long. Basically, your bugs should stay your bugs. My folks and I joke that if we have an upset stomach or intestinal distress, it's because we ate someone else's E.Coli. Whether or not that's the case, a point is made: there are bugs in us and on us.
The bugs we have in our gut have important jobs to do. They help us digest our food. They help us stay healthy and fight off illness. They sometimes make things difficult for the not so helpful bugs and protect us from the "evil" ones.
But it's the bad ones that interest me. Tapeworms, hookworms, and the parasite that causes malaria, transmitted through the saliva of a mosquito. How these animals evolved into what they are now is what researchers are examining now. Any parasitic animal runs the risk of wiping itself out by being discovered. They are the cat burglars of the parasitic world, sneaking into an animal, taking what they want, and then dispersing to invade other animals.
I remember a nine year old girl telling me she had a tape worm. As I was also nine, I thought that was interesting. I asked her what it did and where she had it. After she told me it was in her insides, I admit, I didn't think it was so cool. She also told me she was taking medicine to get rid of it. And of course at that age, I had heard of worms you could get from walking barefoot in the grass or from dog poop.
But for some strange reason, I have always thought there must be some explanation of why these types of organisms live the way they do. There must be some benefit, not just to them, but to their hosts. Otherwise they couldn't have survived as long as they have. Some parasites quickly kill their host or disable them to the point that both parasite and host will suffer.
People with sickle cell anemia are not susceptible to malaria. The sickle cell structure isn't amenable to the parasite that causes malaria, so the bugs can't affect the host. Did this mutation in haemoglobin in red blood cells allow those with it to survive while others didn't and thereby allow the mutation to become an inheirited trait? Did the mutation arise because of the parasite? Or was it simply a chance event that had a slightly positive result? I say slightly because while those with sickle cell survive malaria, they often have shortened lives due to the mutation, though in malaria ridden areas they do have an advantage.
Since my diagnosis, I have often thought of MS in these terms: of what benefit is it to me to have MS? Has some virus or bacteria triggered the onset of MS? Perhaps the presence of one of those parasites keep others from settling in us. Perhaps MS evolved as a way to protect us from another, less desirable, disease. Perhaps the immune activity triggered by MS protected us from strains of plague or smallpox during the midle ages.
On a related note, recent studies in south America and in Europe/Africa show a protective action of some parasites in people with MS as compared to those with MS but no parasites. But I'm not going barefoot in the grass any time soon.
If you're really interested in parasites in general, read Parasite Rex, by Carl Zimmer. It's an absolutely fascinating look at some of the earth's most reviled creatures.
S.
It was the coldest part of the year when I was diagnosed; the second week of January with bitter winds and snow staying on the ground. I was immediately admitted to the hospital for IV steroids.( If I have to do it again, I'll ask to be treated as an outpatient.) It was 10 o'clock at night before I was settled into a room and started on the drugs.
The steroids they give you are quite amazing but they can have some wicked side effects, like sleeplessness and hunger. I ended up roaming the hospital neuro ward at 2 in the morning, wide awake and hungry. One of the nurses showed me where their kitchen was on the floor and told me if I felt like some toast or tea at night to just come in and help myself. It was like being in Cape Breton visiting relatives.
It was after 3 before I got to sleep that first night and I was awake again at 6...just in time for the nurses to come in for vitals and wait for breakfast. I had brought clothes with me so got into them and once I had a phone I started making phone calls to work to fill them in and to an agency I volunteered with to let them know I'd be away from home for a couple of days. Actually, I had no idea how long I was supposed to be in hospital.
There was a steady stream of visitors in and out for most of the day, including the MS clinic nurse, the hospital chaplain (though at the time I wondered what I needed a chaplain for), my mom, a co-worker, Jamie Paterson, who immediately recruited me to make an appearance at an MS Society fundraiser the next month, and the ever present nurses. One of the nurses was the sister of an acquaintance from university. She was the one who rounded up some info for me about MS, for which I was truly grateful. I knew what I had, but didn't quite understand what it could do or how.
I also got a room mate, a 40ish Middle Eastern woman who had a lung clot, and since there were no beds on the appropriate floor they put her on the neuro ward. She was on forced bed rest while undergoing treatment and more tests. She was a sweetheart. I had more energy than a two year old on sugar so would fly from my bed to the nurses station, downstairs for a Tim's coffee, back up for lunch and more visitors, and the occasional errand for my room mate (like getting a box of Kleenex) or to help her change her johhny shirt.
That evening I noticed my right hand swelling up from the IV thingy on the back of my hand. At 10 when the nurse came to give me another bag of steroids I asked if she could remove the thingy and put it in the other hand because of the swelling. She immediately removed it and attempted to put one in the opposite hand. I say attempted. She got another nurse who also failed in her attempt. and another. After the third nurse had failed I was starting to panic and hyperventilate, I was crying silently, but the tears flowed fast and furious. It hurts being poked so many times. My room mate reached out to hold my hand and try to keep me calm. Then they rounded up The Alien.
This guy showed up at my bedside, with by now, 4 nurses around me, and knelt by my side. I said I just wanted to watch ER, not be in it (it was a Thursday night). We all kind of laughed nervously and this guy slid the needle into a vein like a hot knife into butter and everyone heaved a sigh of relief. This man had to be the strangest looking human being I have ever encountered (which is why I silently dubbed him The Alien) but I suspect he had the most experience of all the nurses on the floor that night. He was a life saver that night. Well, a hand saver, anyway.
Day 3 in the hospital, again after 3 hours sleep and wandering the halls at night. My room mate's husband and teenage son arrived to visit and brought flowers. The son gave me a rose as well. My heart just melted and it was all I could do to keep from breaking down right there and then. I thanked them and left the room to give them a little privacy.
My room mate was taken for more tests that afternoon and I went to the window to look out at the blowing snow and pedestrians slipping on the ice. "Don't jump!" I heard a voice behind me. "It's not worth it" I turned to see a housekeeper pushing a cart into the room. He had a big smile on his face and I laughed out loud. I told him I had no intention of jumping out of any window and he asked how I was doing. We had a short but pleasant conversation. I have never forgotten his making me laugh.
That evening my room mate was transferred to the right ward for her and we hugged and said goodbye. I told her I'd keep her in my thoughts and prayers and she said she'd pray to Allah for me.
One of the nurses came in and said I was getting my cocktail early that night so I could go home and give the bed to someone who needed it more.
For exactly 55 hours I was a patient at the hospital. I was scared, I was happy, I cried, and I laughed. I rarely slept. I was starving. Rollercoaster doesn't even begin to cover the experience but it was the start of a long, strange trip.
S.
