Wednesday, June 25, 2008

Multiple Sclerosis - The Invisible disease

The title of my blog is My MS yet I haven't written anything regarding MS. Today I'll write about some of the symptoms that I experience and although it is not an exhaustive list by any means, I'm sure they are shared by many with the disease. Multiple sclerosis is often referred to as the invisible disease. Many of the symptoms are not outwardly visible but that doesn't make them any less real. My walking disability is an obvious indicator of the disease but one of the easiest to cope with. I use my scooter to compensate for my legs and the general public is typically very helpful with tasks like opening a door or helping me carry something. It's the less visible problems that are troublesome.

Cognitive difficulties are common in MS and like the disease itself, may affect everyone differently. I always considered myself very capable of multitasking and focusing on several complex problems or situations simultaneously. That is no longer the case. I have difficulty concentrating with any outside distractions and lose my focus very easily. My short-term memory fails me often with simple things like remembering the score of a hockey game or what happened in a movie I just watched. These problems might be viewed as very common but they are not characteristic of me at all and represent a drastic change in my thought processes and are the source of much frustration.

Fatigue is another very common problem and can be very deceiving. I look very young for my age and I work out to keep my strength up leading to comments like “I know you have MS, but you look so good” without any understanding of how I really feel. Most people understand fatigue as a general feeling of tiredness or weariness but people with MS experience a different type of fatigue because of the way nerve signals travel through the body. The nervous system uses energy to send messages to and from the brain called nerve impulses. In MS these impulses become interrupted or blocked completely and thus the brain compensates by sending out stronger impulses that take increasing amounts of energy. As someone with MS uses their muscles, brain etc., more and more energy is required and eventually the energy sources are reduced or completely burned out. When I fail to recognize that I'm overdoing it I experience much more than an increased feeling of tiredness or weariness, my muscles simply just stop working. I run into that proverbial wall and shut down which can mean various things. Perhaps I can’t lift my leg to go up a stair, or my eyes become very sore and my vision blurred, or if I try to use a fatigued muscle to stand or walk down a stair my leg will begin to go into uncontrollable spasms. At least I have some control over this problem; if I manage my day and rest properly I can keep myself out of trouble.

People often ask me if I'm in pain. The answer is no, I don't live with pain everyday but this is not to say that I don't experience pain. Neurological pain is the most common type of pain that I go through. This type of pain is a mystery and usually short lived. For example, if I reach above my head to take my shirt off I sometimes feel a sharp piercing sting that starts in my shoulder and travels down my arm like a bolt of lightning exiting through my fingertip. Sometimes I feel like something in my ankle has been crushed and hurts so bad that I can't put any weight on it. There is no apparent reason for this, it doesn't stem from a previous injury and I haven’t twisted or hit my ankle. This is what I refer to as neurological pain because there is no visible injury. Fortunately this type of pain comes and goes and is not constant.

The inability to control my bladder is a huge frustration. When I have to go I'm not provided much warning or control to hold it back, it usually comes with a real sense of urgency. On the flip side sometimes I have to go and I can't. I usually have to get up to go to the bathroom two or three times a night but sometimes I am unable to force a constant stream even though I really need to relieve myself. I don't know what it's like for a female but when a guy cuts off the flow midstream it produces a very unpleasant feeling. I sometimes have to sit on the toilet for five to 10 minutes before I can finally relax my muscles enough to let it go. I guess I just identified another source of pain. Because I can't fully empty my bladder, relief is not long lived. Again I have some control over this problem, I can make sure I'm on my scooter, located close to a washroom and control the volume of fluids that I intake.

A lot of my mobility problems are associated with my lack of balance and spasticity in my leg muscles. Spasticity causes my leg muscles to tighten up resulting in me walking completely straight legged as if my legs were 2” x 4”s and so there is no cushion for my knees. This eventually causes a great deal of pain in my knees which then works its way to my back. This is what happens when I’m awake; when I'm asleep it's a different story. When I wake up my natural instinct is to have a big stretch. I have to do this very carefully after my leg muscles have been tensed up and spastic all-night or I face very painful muscle spasms. I don't get the typical relief that comes with a big morning stretch as I have to do it in such a controlled manner.

Then there are the annoying symptoms that I simply just have to learn to live with. This again is a neurological sensation problem that comes and goes at will. Can you imagine how annoying it would be to have cell phones implanted in your legs and hips that are set on vibrate and going on and off all day? I live with this problem everyday and again it comes and goes as it pleases but I can't recall one day in the past year that I haven't had this unpleasant sensation.

As I said in the beginning, this is by no means an exhaustive list, just some of the things I have to live with everyday. I'm sure that anyone else living with MS whose disease has progressed like mine must live under very similar circumstances. I have just had to adapt my life in order to live with this disease. Many of the conditions I've described can be thought of as very embarrassing and difficult to talk about. It's been very difficult to admit to myself that I have some of these problems let alone complete strangers. However I can't be embarrassed that I have multiple sclerosis and hence can't be embarrassed by the effects the disease has on me. On the contrary I think it's good to discuss these problems and increase people's knowledge of MS and how the disease affects people's lives. Even though I have much to endure, I never complain. No one wants to hear someone complain all day and it wouldn’t improve the situation anyway. Complaining just promotes negative feelings which then cause more damage. It just is what it is and I have to learn to deal with it. It helps to understand that things could always be worse so I don't dwell on the bad stuff. I'm very happy with where I'm at in my walk with the Lord and I gain a lot of strength from my faith. I really do feel blessed in so many areas of my life. One should never discount or forget the blessings that I'm sure each and every one of us has in our lives.

We all have a choice, choose to live happy!


Tuesday, June 17, 2008

So much for the news...

Appearing in the news wasn't quite what I'd hoped for, in fact quite the opposite. I first approached Global TV to explain my story and introduce my website in hopes that they might run a story. Michelle Schurman replied to my e-mail indicating that she would love to talk to me about this… perhaps shoot a story and get the word out about my fundraising campaign. Well that strategy backfired thanks to Michelle Schurman. She did end up running a story however it did absolutely nothing to gain exposure for my fundraising campaign and as a matter of fact ended up creating more harm than good.

My website and fundraising campaign were nonexistent and at the same time she managed to paint a pretty negative picture of stem cell transplants and what they are doing in China. I now find it necessary to refute some of the claims made in the newscast. To begin with I’d like to know where she got her information regarding patients returning from China with major infections like meningitis. I belong to a Yahoo chat group focused solely on China stem cells and from hundreds of experiences I have not heard of one case of infection. I would suggest that a patient is more likely to come down with an infection from a Canadian hospital.

As documented in a CBC news report from May 31, 2007, every year 250,000 Canadians pick up infections while in hospitals being treated for something else. That's a staggering one out of every nine Canadians who are admitted to hospital. Every year those infections kill more than 8000 people. Many infections are started by bacteria within the hospital setting which can be found in disinfectants, respiratory equipment, food, sinks, taps and mops. It is spread from patient to patient on the hands of hospital personnel and by direct patient contact with contaminated items.

I have included some photos of the Hangzhou hospital where I will be admitted. It is a jewel of a hospital and well renowned for its exceptional quality of care. China is a country of more than 1,300,000,000 people; do you think they have a staffing problem for custodial duties or any other position for that matter?

The claim that the Chinese have not published in leading medical journals is cause for some skepticism. Let's face it, the Chinese do things differently but because they have not published in western medical journals does not mean that their research or documentation of that research is lacking in any way. In my opinion, we are falling behind the Chinese in many respects. It is expected that North American doctors cannot endorse this type of treatment as it is not proven and we all know how medical insurance and lawsuits influence that. However off the record I have asked doctors about the treatment and been told that in my shoes, why not try?

The claim that a lot of success stories may be chalked up to the placebo effect and that patients want the treatment to work so badly perhaps they could be imagining the effects. That is a very clinical and scientific statement to make, but not very accurate. I don't think two-year-old Tre Burgos from Florida is imagining his doctors tell his mother that his vision has gone from 20/1200 to 20/200. His mother states “it's just really amazing watching him see something for the first time”. There are so many documented success stories that to claim stem cell transplants don't work is obviously inaccurate.

Finally I’d like to clear up a beef with whoever coined the phrase “Stem Cell Tourism” and its implications. To equate traveling halfway around the world to find treatment for someone's debilitating, painful and sometimes life-threatening condition to taking a holiday is very insulting to me. Our journey is one of hope and help; it has nothing to do with taking a vacation.

Though this news story didn't turn out the way I wanted I will continue to try other media sources. Perhaps a different network, talk radio and newspapers; I'll continue to do anything I can to create exposure and spread the word about my cause. Those of you that are out there and reading this can help me too, please continue forwarding my website and spreading the word!

Thank you,

Monday, June 9, 2008

In the news

Thank you to all those who donated early. I was able to reach my first milestone of $6,000 within the first two weeks of my campaign allowing me to make my first deposit on May 28 which was right on schedule!
I am now hoping for another flurry of donations resulting from an appearance on Global news. The story will run as a two-part series on Tuesday, June 10 and Wednesday, June 11 on the five o'clock news and possibly six o'clock. I believe it will also be posted on the Global TV website.

I'm not sure what the viewership for this timeslot is but if it can prompt 2000 people to visit my website and donate $20 each, my mission will be complete! We'll see what happens.