‘Tis The Season

Oops, this post was from 12/2011. I was experimenting recently with adding graphics and accidentally republished it

In previous years, I've given tips for people with chronic illness on how to survive the holidays. This year, I've decided to do something different. Here's my list of things that well-family members and friends need to know about their person with MS or another chronic illness.

• We want to do everything that we used to and we don't want to disappoint everyone if we can't. Scaling back festivities makes things easier for everyone.
• "I'm tired" means I'm tired, really tired and need to rest. It's difficult to admit this, so believe it when you hear it.
• We are our own toughest critic. Let us vent if we need to about our shortcomings, even if they are to our fault.
• Be mindful that the holidays can be hard for us because they remind us of any changes in our condition over the past year.

It may be helpful to consider the chronic illness as an unwanted guest. Sure, you try to make it comfortable but you don't encourage it to stay. Make sure to keep the holidays about friends, family and fun. The chronic illness isn't going anywhere soon unfortunately.

Best wishes for a Merry Christmas and Happy New Year!

What’s In a Name?

Multiple sclerosis is a disease that affects each person differently. The majority of the population has relapsing-remitting disease. This means that the person has attacks and remissions. I started out that way, but over time I progressed. At first, it was relapsing-progressive and now it can be categorized as secondary -progressive. Many people with relapsing-remitting will eventually switch to secondary progressive. I just got there sooner.

How your disease is categorized is actually very important. Because most people with MS have relapsing-remitting, the drugs available currently are for that type only. The goal of treatment is to extend the amount of time someone has relapsing-remitting, preventing the person from evolving into secondary -progressive. I am pleased to report that there are six drugs currently available for relapsing-remitting MS. However, there is only one FDA-approved treatment for any form of progressive MS and I have already maxed out on dosage. Without the approval of the FDA, insurance companies consider using the available drugs as experimental and they won't cover their significant cost.

At least I didn't have the most sinister form of MS, primary –progressive. That's bad and the generative from the start. For a number of years, I was able to be on interferon, the treatment for relapsing-remitting MS. The reason the research community has focused on relapsing-remitting is because there can be significant, positive results. These might be the number of lesions on an MRI or an increase in the ability to walk. It is harder to document improvement was someone in my situation. At this point, it would take a miracle to get me out of my wheelchair and walking again.

So, my doctors and I are left to treat symptoms. There have been significant improvements in treating symptoms. For spasticity in my legs, I have a titanium pump that delivers medicine directly into my spinal fluid. For spasticity in my arm, there are botox injections. I also take a large variety of drugs and supplements throughout the day. I've never been a big fan of labels anyway, so I stubbornly go on living life.

Embrace Me

I'm not a very affectionate person, but I miss real hugs. Wheelchair hugs are a poor substitute. Real hugs are natural, spontaneous and can be initiated by either party. Wheelchair hugs, on the other hand, are awkward, planned and have to be initiated by the standing party. The only way I know to initiate a hug is to say, "come over here and give me a hug." I can't just go up to someone and give them a hug.

Here's how it typical wheelchair hug goes. A person comes up to me, leans down and over me while I reach up and lean forward. The taller the person is, the more awkward the hug. Wheelchair hugs tend to be quick because of the uncomfortable position. Then, the biped straightens up and I strain my neck upwards. No wonder wheelchair designers have been working to come up with chairs that enable people to stand or at least be at eye level.

Until such devices become widely available, I will continue to live my life sitting down. After all, a wheelchair hug is better than none at all.

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."