Tuesday, December 14, 2010

‘Tis The Season

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!

Thursday, November 4, 2010

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.

Thursday, September 30, 2010

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

Saturday, September 11, 2010

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.

Tuesday, August 17, 2010

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 13th 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.