Parking Places

Best Laid Plans

2012-01-06T16:42:00.000-05:00

Yesterday I was meant to be moving from Virginia to the new house (new to me) in Bethlehem, Pennsylvania. Oh well.

Instead, I was sitting in a doctor’s office waiting to hear how long I would need to rest (what is the verb for "convalescence"?). I went into the hospital with pneumonia on December 19^th and came out 20 pounds lighter December 31^st.

Moving is not the problem. The problem is the three days of talking that will be required to interview and hire new personal care assistants. I’ve got very limited energy and air. Even with oxygen, I get winded pretty fast.

So the moving date is postponed and we try all of this again in a few weeks.

Still Stranded

2011-11-16T18:01:00.001-05:00

Well, today I rearranged the icons on my smart phone. Twice. I took a nap and sent out for lunch.

I really, really, really need to get back to work. A little vacation is fine but this is BORING.

We live in such an instant age that it never occurred to me that anything would require more than two or three days to fix. In the past, I've always done loaner wheelchairs or loaner cars. I guess it's pretty difficult to find a loaner elevator.

I expect I would be more upset if I didn't live next door to a fire hall. I've already talked to them about getting me out if there were a real emergency.

We've considered trying to get me down steps in a manual wheelchair but the real problem is getting back up. Plus, I don't even want to think about going up/down the steep fire steps. There have been times in the last 35 years when I have had to be carried up/down steps in my electric wheelchair. Absolutely terrifying. Pretending to be Cleopatra doesn't help much.

Over and above my own fear, I worry about what that kind of stress actually does to the wheelchair or to the backs and legs of the folks schlepping me around. What would I do if part of the wheelchair just came apart? What would the people underneath me do?

So, I'll just be stuck here for a while longer.

I Don't Do Stairs

2011-11-06T13:58:00.000-05:00

Friday morning, I got up, got washed, got dressed, ate breakfast, and left for work. I made it about 200 feet. Right by the elevator button was a large sign printed in black magic marker "OUT OF ORDER." Panic and telephone calls.

I cannot stress too strongly how difficult it is for a school to find substitute teachers at the very last minute. I only live 5 min. from work so I generally leave the apartment about 30 min. before my first class starts.

Lucky for me, the office staff at my school are quick witted and my coworkers are generous. Several folks agreed to give up their planning periods to cover my classes.

I have spent a lot of time in the last 20 years assisting people with disabilities to plan for emergencies. I have written and spoken on the subject!

However, not once since I moved to this apartment (on the second floor with only one elevator) have I considered the possibility of an elevator failure.

Forest. Trees. Enough said.

I love my iPhone Even More, part 2

2011-11-03T09:54:00.002-04:00

The other new feature introduced with the updated operating system to the iPhone is one that will be fabulous for almost anyone who has tried to read a webpage on the Safari browser on that little bitty screen.

Some pages, after they have loaded, will feature a small button in the address bar called READER. Tap the teeny, tiny button and an easier to read text only screen will pop up. You will be able to adjust the size of the text without losing words off the side of your screen.

I tried this several times and it really works!

I Love My IPhone Even More

2011-10-29T06:00:00.000-04:00

I have an iPhone 4. I Love it. However, nothing is perfect and this small electrical device that was designed by people who were very focused on hand gestures can be very frustrating for someone with mobility impairments. That whole "pinch" thing is just wasted on me.

However, the updated operating system, IOS 5, has solved a host of problems. The most obvious is the new accessibility feature called AssistiveTouch. You can find it in the Settings section under the General tab. Tap Accessibility is near the bottom of the page.

AssistiveTouch causes a small white DOT to be visible on every screen. Tapping the DOT once causes a small menu to appear. From there, I am offered a host of options. I can press a button to shake the phone, rotate the screen, change the volume, and do that "pinch" thing to make text larger or smaller.

I can also define my own gestures. This is going to take some research as I have never paid any attention to what gestures are available and what they do.

I know there aren't a lot of us out there using our iPhone with a pointer stick but thank you to whoever thought about this small but wonderfully useful feature.

Lessons Learned in Moving

2011-10-27T11:02:00.002-04:00

When I first saw the apartment, I was pretty sure I would set up my bedroom to resemble the one I had lived in for the last 20 years. Not where to put the bed or number of shelves but the arrangement of my little electronic world.

I figured the media stand would hold the TV, cable box, and computer. I would just use the large flatscreen as a monitor for everything. (I write "large" but really should use the word "medium". On my last trip to Best Buy, I saw a television that measured 70 inches. It would be like always sitting on the front row of the movie theater. I'm getting motion sick just thinking about it.)

Happily, it all worked out except for one extremely important thing. I use a microphone to dictate my text into the computer via Dragon NaturallySpeaking. Here, a corded microphone would be really inconvenient. I would have to string it across the room.

I had hoped that my iPhone would come to the rescue and it almost did. Dragon has an app so you can use the phone as a remote microphone. Brilliant! Unfortunately, very small apartments transmit a lot of noise. The kitchen is only 10 feet away. I could only use the software when the place was completely quiet. No dogs, no talking, no noises from the TV in the other room. Well, that never happened.

I've been forced to buy a Bluetooth microphone. It sticks in my ear and works like a dream. Well, it's sort-of sticks in my ear. It seems that my ears are not shaped appropriately for earbuds of any ilk. I'm considering duct tape but that will probably be even more uncomfortable than the headset that I have already rejected for squishing my noggin like Uncle Fester's headache machine.

I'll also be changing my warnings to folks about using Dragon NaturallySpeaking in a noisy environment. As a member of the assistive technology committee in my school system, I've been concerned about the value of students using this software in our noisy school. I've always felt it would be more appropriate for home use. I'm still not convinced it will be useful in a busy classroom but I have been very surprised at the software's accuracy and ease-of-use with this new headset.

Old Things are New

2011-10-24T16:31:00.000-04:00

It's funny how moving makes you look at things differently. I have a hospital table that has sat at my right side for close to 35 years. It has a Formica top and cranks up and down. I have used it for everything from trimming down the hair on my dog's bottom to making candles (what a mess!). I can still see stains from Easter egg dying almost 3 years ago. Mostly though, it just holds my water jug, TV controls, and cell phone stand.

Over the years, the top had become quite worn and the whole thing looked really shabby. So I went looking online for a new table. STICKER SHOCK! Not only were the tables outrageously expensive but they were smaller in surface area. I wanted a new table top but also more space.

One of my ladies (thank you Rosemary!) suggested I talk to one of the places in town that does kitchen counters. What a great idea! I had never considered it and wouldn't have.

The job turned out to be a bit more complicated than the counter design folks thought it would be. Something about the trim along the outside of the table.

Three weeks and with less money than it would take to buy a new table, I am happy to say that I now have one of the most beautiful and functional bedside tables around.

I love my iPhone

2011-08-28T13:40:00.000-04:00

I have iPhone-itis. I use it for everything. However, I have just found a truly wonderful and disability related application.

It turns out that the Dragon NaturallySpeaking folks have developed an app for using the iPhone as a microphone. I love it!

No more headsets or portable microphones. I intensely dislike having things attached to me. I don't like cords or clips or even earbuds.

So far, I've found that the iPhone is an excellent microphone. I can dictate directly into the Dragon software or other text windows with fewer mistakes than ever before. Even better is that it sits next to me on a table. NO ATTACHMENTS!

Now if I can just get the android tablet that I am field testing for a disability group to work as well.

You can find it in the Apple App Store-http://itunes.apple.com/us/app/dragon-remote-microphone/id436624808?mt=8

Settling In

2011-08-17T13:41:00.000-04:00

Wow, what a summer it has been. Most of my time has been spent moving from a house I have been in for over 20 years to an apartment with half the floor space. Storage is a BIG concern.

The diet plan from the Fat Doctors was working well up to the time I started moving. I had lost 11 lbs. I am happy to say that I have not gained any back but no progress either.

Moving with a disability has been interesting. In the panic packing just before the movers arrived, some of my medical supplies ended up in the wrong boxes. I had to replace them quickly. Luckily, I kept some cash on hand for such an emergency. The insurance company doesn’t really care that medical stuff “accidentally” ended up in storage in another state.

I have a renewed appreciation for how well everything was organized at the old house. We have spent the last two weeks looking for everything. Boy, does that waste a lot of time!

I plan to post more often now that things are calmer.

Fat Doctor

2011-05-30T15:13:00.000-04:00

This is looking familiar.

I can't put it off any longer. On Wednesday, I'm off to the fat doctor. Try as I might, I just cannot keep the weight off. I'm not getting any heavier but I don't seem to be making any headway toward the smaller numbers. I'm just 53 and every year will make it harder to get rid of the weight.

I'm not sure anymore how much of this is my eating habits and how much might be due to various medications. I know the paralysis limits my activities but I am constantly reassured that exercise is still possible. How horrible! Not having to exercise was always one of the few perks of paralysis.

There is only one activity I can think of that should involve sweating and exercise isn't it.

This appointment fills me with dread but I'm going to make the commitment to lose some of the weight. That's the other question; how much should I lose? One school of thought postures that the quadriplegic/tetraplegic can breathe better and generally function with more energy if the weight is kept low.

On the other hand, my respiratory guy cautions against losing my "cushion." He tells me that a serious bout of pneumonia/infection will require some fat reserves. He only wants me down about 20 to 25 pounds. He also acknowledges that the extra weight could be impairing my breathing as well.

The only thing I'm completely sure of is that they will only keep me from my thick-sliced, peppered bacon when they can pry it from chubby little fingers.

* Picture from Mike Johnson - TheBusyBrain.com

Real Hands-Free

2011-03-20T17:15:00.000-04:00

I love this thing!

I have finally found the set-up that I need to use the telephone COMPLETELY hands-free. This is terrific for me because I can use it night even when I'm flat on my back and the hands splints are off.

At last, something that works as advertised. I've written about it in detail at this link.

If you need more information, then contact me through this blog and I'll help you as much as I can.

Technology and Disabilities

2011-02-20T14:00:00.000-05:00

Hands down, I am a techie. I love good gadget and the Internet is the best gadget of all. I am constantly learning about my disability and how to accommodate it more easily.

The following link is a short video that reviews tips and techniques for making a transfer from the wheelchair to the bed.

http://sci-health.org/how-to-transfer-from-wheelchair-to-bed-video

I love these things because they remind all of us, regardless of how isolated we are from other members of the disability community, that we are not alone. We don't have to reinvent the wheel.

It's All about Your Bottom

2011-02-16T13:29:00.000-05:00

I've often said that one of the great truths about living with paralysis is that you have to get used to the fact that your bottom will be getting more attention than your face.

Skin breakdown is always an area of great concern for anyone with mobility issues. I've just come across a new cream that seems to be working out well.

It's called Elta. The information on the tub suggests it is for use with diabetic dry skin and eczema. It sort of melts on contact and moisturizes for at least 12 hours.

I find it works best to dry tender skin thoroughly after washing and then apply a light coat of the cream.

A little goes a long way which is a good thing as this stuff is not cheap.

Amazon carries it and I've included the link here.

Their website is located here.

I got almost twice as much at Costco for $27.50. It's not available online but I did find it at the Costco pharmacy. It was behind the counter. I'm sure they will order it for you if it's not in stock.

For what it's worth, I am not associated with this company in any way. I just like the cream.

Obsession

2011-02-12T16:33:00.000-05:00

I really don't look forward to February. It is the month it seems to drag more than any other despite its shortness. I'm also a little scared. Three of the last five years have found me in the hospital with some sort of respiratory ailment in February.

In fact, I'm writing this just after some asthma treatments. A little bit of a virus kept me home from work yesterday and today it appears to be affecting my breathing.

I try not to obsess over every breath but it seems that I am hypervigilant when it comes to this stuff. I've written about this before. Despite the meditation and work I'm doing to keep from focusing on what might happen instead of what is happening, I'm right back to worrying about landing in the emergency room. How long will I have to stay? How severe will it be? Will I need a stent again? Has the food gotten any better?

I think this has possibilities for wheelchairs.

2011-01-21T08:00:00.000-05:00

These were on display at this year’s consumer electronics show.

http://cnettv.cnet.com/gm-en-v/9742-1_53-50098358.html?tag=api

Kindles

2011-01-19T12:33:00.000-05:00

I love mine but it is not entirely without problems.

http://abledbody.com/techtalk/2010/11/18/review-kindle-3-for-visually-impaired-users/

To see more: http://www.amazon.com/Kindle-Wireless-Reading-Display-Generation/dp/B003FSUDM4/ref=sa_menu_kdp33

Technology is moving fast.

2011-01-19T12:21:00.000-05:00

I have tried to insert closed captions in my homemade videos. It is not easy. I hope this is a start of a movement to make all closed captioning easer.

http://abledbody.com/profoundlyyours/2011/01/13/purple-launches-real-time-phone-captions-service/

When will it stop?

2011-01-16T15:26:00.000-05:00

I've been out of the loop for a few weeks. There were the holidays, of course, but most of it is been due to the conspiracy of expensive appliances. In the last six weeks, I have had to have the septic tank pumped, replaced the septic pump, replaced the well pump, repaired the broken handle on the dishwasher, had a plumber in to fiddle with the water pressure tank, and I'm going to shop for a new washing machine on Monday. That is, if, I am fully recovered from a light case of the stomach virus. I have no energy and just want to sleep.

I forgot to mention that one of my ladies (personal care assistants) injured her foot and is out for six weeks. We're all scrambling to rearrange hours. I'm hoping to avoid hiring anyone new.

It's just starting to get funny now.

Creativity and Kindness – Blissful Bedrooms

2010-12-20T17:45:00.000-05:00

This is an interesting and unexpected article from NPR. There is a link to listen to the story on the webpage if you prefer.

http://www.npr.org/2010/12/19/132137943/every-young-person-deserves-a-blissful-bedroom&sc=nl&cc=nh-20101219

Great Gift Idea

2010-12-15T18:58:00.002-05:00

Gifts for Seniors and the Disabled: Clean Hair, http://hubpages.com/t/1d6c83

Dragon Workbook

2010-12-11T14:49:00.000-05:00

Nuance has issued a free downloadable workbook to help improve your accuracy with Dragon 11. I've just started using it and am impressed so far.

The program is so much more flexible than it used to be and easier-to-use.

Click here to get the download.http://app.marketing.nuance.com/e/er.aspx?s=274&lid=3369&elq=66571e91044a4498bc5616717fe7eb0e

Movies

2010-11-02T16:58:00.000-04:00

This is me goofing around with my new Logitech WebCam.

Soon I hope.

2010-10-26T08:01:00.001-04:00

http://www.npr.org/templates/story/story.php?storyId=129934270&ft=1&f=2&utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+NprProgramsATC+%28NPR+Programs%3A+All+Things+Considered%29&utm_content=Google+Reader

Cool

2010-10-24T08:00:00.001-04:00

http://www.npr.org/templates/story/story.php?storyId=129878708&ft=1&f=2&utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+NprProgramsATC+%28NPR+Programs%3A+All+Things+Considered%29&utm_content=Google+Reader