Check Out My New Video of Two Lights State Park

In the top right hand corner of the page...enjoy.

Or watch it here. 

An Easy Way for People with MS to Get Involved (healthy readers may just want to skip over this one)

If you have MS there are lots of ways to help out. You can participate in a clinical trial. You can join a support group. You can start an MS Blog :-) . But perhaps the easiest way for you to engage in the effort to find a cure is to join the registry for the North American Research Committee on Multiple Sclerosis (NARCOMS). If you are not yet a member of the registry I hope you’ll give it a good look. I’ve been a participant for, heck, I can’t remember how many years. Your only obligation is to fill out an online survey about your experiences with MS once per quarter. I’m convinced that the information is kept completely confidential. It takes about 10 minutes to fill out.
From the NARCOMS website:

“The purpose of the Registry is to speed the development of new therapies and healthcare services by facilitating research in these areas and reducing the time and cost of research studies. Individuals with Multiple Sclerosis are invited to enroll in the Registry through direct mailings, MS centers, support groups, and the NARCOMS Registry webpage. Enrollment involves filling out a questionnaire and mailing it or submitting it online to the Registry Administration Office. Participants are assured that strict confidentiality will be maintained and that their names will not be given to anyone without their permission. The questions asked are regarding demographic information, MS-related medical history, immunologic and symptomatic therapies, health care services used, and a series of patient-assessed performance scales that reflect disability in eight domains of function.

Benefits of Participation

· You are helping to provide the information needed to learn about the variations of MS in a very large group of patients and to monitor the progression of the disease

· You help us monitor the effects of various treatments. Your information may be providing ideas for future research

· You will be receiving the printed version of the MSQR free of charge (note from Mitch: this is an outstanding publication)

· You will be informed of recent studies and their results

· You will be notified of clinical trials in which you may be eligible to participate”

Click here to sign up.

How to Interact with a Disabled Person: 101

Image by Esthr via Flickr

I am overwhelmed by how helpful and pleasant most people are when they encounter me in public. Just last week I was zipping through a crowd of people rather quickly in my power wheelchair . My friend remarked, “you could hurt somebody the way you drive.” She was right. “But,” I rationalized, “even if I run over an innocent bystander and knock him to the floor, once he realizes it was a wheelchair guy that did it, he’d probably just dust himself off and apologize to me.”

Even though people are generally very considerate, I thought it might be helpful for me to provide some pointers about interacting with disabled people when you meet them in public (or at least if the disabled person you meet is me):

1. If you've read my earlier posts you know that I have a high-tech wheelchair. If you'd like to know how it works, and I'm not in a big hurry for some reason, I'll probably tell you everything I know about it. However, I would appreciate it if you don't cause a scene. Please don't yell out in the middle of a busy shopping mall, "Earl! Earl! Get over here! You've got to see this! This chair is the freakiest thing I’ve ever seen!" This really happened to me last week.
2. If you are so inclined, feel free to offer me assistance with tasks. However, if I say "that's okay, I have the door" then please don't open the door for me anyway and just get in my way and turn what was going to be a slick maneuver into a pileup in the doorway. In many situations I wholeheartedly welcome offers of assistance like this. So please don't take the other extreme and assume that any offer of assistance will be considered some sort of insult. My advice is to offer assistance if it feels right, but be prepared to step away if your offer is kindly refused.
3. Personally, I find it okay if you ask me "why are you in a wheelchair?" It gives me a chance to advocate for my favorite disease. I want everyone to know what MS is, what it can do to an otherwise healthy person, and that folks with MS are normal people trapped inside a failing body. MS is a disease, but it is also a cause, and I am always looking for opportunities to talk about my cause. I doubt that all disabled folks welcome this question as freely as I do though, so proceed with caution.
4. On a related note, unless we are close friends please resist the urge to give me advice on how I can be fixed. Most of the time a person is in a wheelchair because of serious injury or illness. However, I don't know how many people have, upon learning that I have MS, blurted out the fact that they know the cure for MS because of a friend or relative’s experience, and here it is! In contrast, an acceptable conversation starter would be, “did you see the news story about Treatment X, which is supposed to help MS?” Maybe I didn’t see it, and thank you for bringing it up. I have no doubt that your heart is in the right place, but remember that there is a 99% chance that I know way more than you do about why I am broken, and what I can and cannot do about it. I’ve spent hundreds of hours studying this.
5. Do kindly step out of my way if I am attempting to navigate through a crowded room. Again, do not go overboard and draw unnecessary attention to me by shouting at the top of your lungs, “Make way! Wheelchair coming through!” or similar. I am hereby publicly apologizing for all the toes I already have, or may in the future, run over.
6. Most disabled folks welcome the sentiments of concern, respect, and appreciation for what we are going through, but deplore the sentiment of pity. “I don’t know if I would be handling this situation as well as you are,” is OK. “Keep fighting the good fight,” is acceptable. "You poor thing. I feel so bad for you," is not good.
7. Please don’t talk over my head to the person that is with me, as if I am a child who cannot understand you. I know you don’t do this on purpose, but it is really annoying.
8. When you are in a conversation with a group of people, please try not to stand in front of me, blocking my line of sight to the rest of the group. Try to open up the group into a circle so I can see everyone, and they can see me.
9. A couple of months ago I was preparing to leave a restaurant, and sat before the exit trying to determine the best strategy for getting through those big heavy doors. Sure enough two young men zigzagged around me and barreled out of the restaurant without even asking if I could use some help with the doors. If you see a disabled person pausing in front of a door, then there's a good chance that they would appreciate somebody holding the door open for them. After the doors slammed behind the two young men I threw my arms out in disgust, a pure reaction, and a waitress saw me and opened the doors for me. I was a little embarrassed that I had reacted in that demonstrative way. I don't feel "entitled" to help from everyone who comes along, but the situation just struck a chord with me.
10. Finally, if your small child points at me and says things that would be inappropriate for an adult to say, please don’t be embarrassed. They can’t help themselves. I generally find that if I give them a big ol’ smile I’ll get one right back.

I hope I haven’t made it too complicated for everyone. I will reiterate that the vast majority of my dealings with people in the community are very pleasant and respectful, and are not like those described above. Now get out there and interact with your favorite cripple disabled person!

I invite readers to leave their horror stories, pet peeves, and general feedback in the comments section.