Raindrops Keep Falling

I try to avoid going out in the rain. No, I don't think I'll melt but I do know that I and the person pushing me can get very wet. I have not been able to figure out a way to stay dry in a wheelchair. Here are some things I've tried.

• Umbrellas -These don't work for the passenger or the pusher. If I hold the umbrella, it gets in the way of the person pushing me. If the pusher holds an umbrella, I usually get the runoff and it's very hard to steer a wheelchair with one hand. Umbrella hats are just dumb-looking, and only keep your head dry.
  
• Rain slicker –This doesn't work for the passenger because there is run off from the slicker onto the lap. Also, if it doesn't cover your bottom you end up sitting in a wet puddle. A slicker is a good idea for the pusher.
  
• Rain poncho –This doesn't work either because it's hard to find your arms for transferring. It does solve the runoff problem however.
  
• Stay home –This is the best option, but I can't always cancel appointments just because it's raining. Fortunately, many doctors' offices have a drop-off with an overhang. Since many of my appointments are medical in nature, I don't have to worry about the weather as much.
  

I know an engineering professor who assigns this problem to his students. Their ideas are clever, but impractical. The rain became my enemy when I was still walking with assistive devices. I learned fairly quickly to give up umbrellas. It was hard to walk with a cane in one hand and an umbrella in the other, especially when trying to open a door. Using a walker, holding an umbrella was impossible. That's when I started wearing rain slickers and ponchos, anything with the hood. It might not have been fashionable, but it kept me dry. I certainly wasn't going to run through the rain.

I invite my readers to share their suggestions to this problem. In the meantime, if you see someone struggling with a cane, walker or wheelchair on a rainy day, take a moment and ask if they need any assistance. I assure you that your help will be greatly appreciated if there is a door that needs opening. If you want to reach me, I'm waiting for the rain to stop

Talk Is Cheap and Easy

Recently, I purchased a new PC. One of my motivating factors was my need for a faster processor to run speech-recognition software. I am pleased to report that the new machine is handling the task quite well and I'm not one to push products, but Microsoft has done a great job of improving the software included in their Windows 7 operating system. I wager to say that it is almost as good as the additional software I have had to purchase in the past.

If you want to try speech-recognition software, here are a few tips.

• Take the time to go through any included tutorials. You'll be glad that you did.
  
• Do not look at the screen when you dictate and try to speak at a normal pace and tone. A good model is a newscaster reading from a teleprompter.
  
• Don't expect for everything to go perfectly the first time. Start slowly and gradually increase your speed.
  
• Remember that the computer is only as smart as you are. If you aren't making any sense, the computer just puts down what it hears.
  

With this new technology, I have little excuse not to blog more regularly. Having speech-recognition software is like having your own personal stenographer taking down your every word. It's empowering for anyone, but particularly for me. My fine motor skills may have diminished, but my mouth works just fine. I'll be talking to you soon.

Starting Over

When I began this blog, my goal was to write every other week. That soon became every month and then every couple of months. Now, I haven't made an entry since November. It's not that I have nothing to say; I just worry that I say the same things over and over again. Maybe, that's the point. Living with MS can be monotonous and tedious. For example, I see the same doctors every three months which leads to insurance billing problems every three months. By the time that I get everything straightened out, it's time to start the cycle all over again.

The real reason I've returned to the blog is because I was reminded that there are people out there dealing with MS issues for the first time. These people want guidance, information and maybe even a laugh or two. With the 13^th anniversary of my diagnosis approaching quickly, I feel that is my duty to continue to spread the word about living with MS. After all, I never know who is out there in cyberspace reading my blog and gaining some insight into their situation.

So, I consider this a new beginning for my blog and encourage all of you to join me as I continue to battle MS, the healthcare system and society in general. I'll stop writing when my disease is cured, the healthcare system is fixed, and society has evened the playing field for the disabled. In other words, I'll keep on writing, sporadic though it may be.

Booby Trap

I went for my annual screening mammogram on the very day that new guidelines were announced. According to the revision, I don't have to have the test done until age 50 and then only every other year. I choose to ignore this suggestion and continue doing what I've been doing as long as my insurance company continues to pay for it. It is my personal belief that women with MS have a responsibility to be vigilant about routine testing. Our disease brings enough uncertainty and I like the peace of mind knowing that nothing else is wrong. So, I am willing to deal with the awkwardness and discomfort of getting a mammogram.

You expect that the medical community would be better equipped to interact with the disabled than they actually are. The following scenario happened to me the first time I went for a screening.

    Tech: Miss Mayo, could you come with me?

I follow the tech in my wheelchair, my aide pushing me. I am handed a gown and given the instructions to put it on with the opening in the front. The tech returns several minutes later.

    Tech: Can you leave the wheelchair over in the corner there and stand here by the machine?

    Me: No, I can't stand, let alone walk.

    Tech: Well, I don't know how we are going to be able to do this.

    Me: I'm going to have my aide wheel me over to the machine and you're going to lower it down.

    Tech: I'm not sure that it goes that low.

    Me: There's only one way to find out.

    Tech: Is there any way that you can raise up the chair?

    Me (inner voice): Sure, I have a magical, levitating chair just like Dr. Xavier in X-Men. Me (audible): No, it doesn't.

    Tech: And you can't stand for even a minute?

    Me: That would take a miracle since I am a paraplegic.

Somehow, we are able to get the films that we need although the tech keeps bumping my knees into the machine while adjusting me. My aide also gets to don a lead apron so that I can remain pressed into the machine as it squishes me. I wait for the films to be read while I'm there in case anything needs to be retaken. It's a better use of time for me to wait around vs. having to return another day and do it all over again.

As unpleasant and ridiculous as that experience was, I like to think that I might have made it better for the next person in a wheelchair who has a mammogram done at that facility. I guess I appreciate that people give me the benefit of the doubt and think I have more mobility that I actually do, but I wish they would assume the worst and not make me feel bad when I can't stand or even move my legs. After all, I'm actually not trying to be difficult for a change. Stubborn, disabled people like me must keep challenging the medical community to provide us with the same care as the bipeds. I know that as our population ages, there'll be a lot more people with mobility impairments. Until then, I will continue to earn the nickname, "hell on wheels."

    

Band of Bothers

Spasticity is a common MS symptom that manifests itself an uncommon ways. For example, I experience a band of tightness around my rib cage most every night. It's as if someone took a belt and pulled it as tightly as possible. I can actually feel the difference between the muscles in spasm and the normal ones surrounding it.

My neurologists theorize that the problem is caused by thoracic lesions on my spinal cord that are too small to show up on an MRI. From my perspective, I don't care as much about why it happens as I do about how to remedy the situation. The good thing is that it seldom happens all day. I notice it most when I'm trying to fall asleep at night. My approach is to combine traditional and alternative medicine to help make me comfortable. I take 20 mg of an anti-spasmodic medication called Baclofen along with 50 mg of an older, anti-depressant called amitriptyline that reduces neuropathic pain. On top of this, I add deep breathing and relaxation techniques. By trying to slowly expand and contract my rib cage, I can get my muscles to stop contracting as hard.

General books on MS that I've come across describe this phenomenon as the "MS hug." I can assure you that it doesn't feel like any hug I've ever had. I am thankful that mine is lower than where the bottom of my bra sits. Other women have told me how awful that is. They avoid wearing their boulder holders unless they're out in public. It's bad enough to have MS, but who wants to explain that your boobs are saggy because wearing a bra is far too painful. That reminds me that I had a mammogram yesterday, but that's a whole other story.

A Walk in the Crowds

Perhaps he [the patient] has the happy kind of MS with walks, balloons and smiling people being pushed around in wheelchairs. House, MD

The MS Walk was this weekend and I went to turn in the money I had collected and be pushed around. Even when I was still walking, the event route was too long for me so I ended up greeting people at the finish line. I felt like a fraud, especially the year that I my walker and I ended up on the MS Walk brochure and poster. It really underscored the irony of the event.

I have been involved with the MS Walk for almost as long as I've lived with the disease. It is definitely an opportunity for people watching. I can pick out the newly diagnosed with their family, friends and coworkers easily. They approach the task with great determination and enthusiasm. They believe they can fight MS and win because they haven't experienced the worst the disease has to offer. Over time, they'll discover that MS is a lifetime commitment and the Walk is an annual event. It's hard to come back year after year knowing that your disease is slowly progressing and there is a slim chance of a cure within your lifetime. Personally, I have amassed a lovely collection of tee shirts and other paraphernalia and these people will find themselves in the same situation. That's not being negative; it's just being practical.

Another smaller group that stands out at these events is the "MS Victims." They are joyless souls slumped in wheelchairs with atrophied arms and legs in uncomfortable-looking positions. They are unkempt and disheveled with dirty hair, teeth and shapeless clothing. They never smile and their eyes are cast downward not making contact with anyone as if they are ashamed of their condition. Unlike the newly diagnosed, there aren't a lot of people with them, only someone to push the wheelchair. Statistically people with MS are supposed to have a near-average lifespan, but these people look as if they are not long for this world. If their appearance is any indication of their quality of life, an end to their suffering seems welcome.

As for me, I can't share the overwhelming optimism of the newly diagnosed or the fatalism of the victims. I go to these events to be myself. I think that it's important for the able-bodied participants to see somebody like me coping while retaining my personality. My condition has given me a lot more joke material. I revel in seeing people's reactions when I yell something like, "move over, cripple coming through." When people compliment me on my purple wheelchair, I love to say that I think it is important to accessorize. After an encounter with me, I know that people have to rethink their preconceptions of the disabled. Just because my legs are weak doesn't mean that my personality isn't strong.

The Procrastinator

Here is my contest entry that I submitted twenty minutes too late. The prize was a Kindle 2 and three years of free software updates. Oh, well.

Dragon to the Rescue

Damsels in distress are usually rescued by knights in shining armor, but my hero is a dragon. Dragon Naturally Speaking has enabled me to continue using my computer in spite of a progressive disability. I was diagnosed with multiple sclerosis (MS) twelve years ago and my disease has slowly taken away my mobility and independence. Because of MS, I can no longer walk, work or stand and my fine motor skills are also affected. Typing has become particularly difficult because I find myself only able to use one finger of one hand quite often. This is okay if I am just checking emails or surfing the web but when I want to do more, it's Dragon to the rescue.

With my trusty Dragon, I can reply to my emails, participate in social networking sites such as FaceBook, manage my family's website, solicit donations for the MS walk and even keep a blog about living with MS. Also, I am a political activist writing to my senators and congressmen about legislation that affects me and everyone else living with the disease. I could not possibly do all these things if I had to rely on my diminishing typing skills.

Dragon helps me stay connected to my friends, family and the world. I can't imagine my life without it. In this age where technology is creating smaller and smaller devices, I often feel left out because I can't use them. Dragon allows me to fully participate in the online world despite my physical limitations. I am no longer a "damsel in distress." I am an empowered woman riding through cyberspace on my mighty dragon!