San Diego Access Issues

Places and routes, some accessible, some not so much.

Feb 132014
 

The paperback version of Rolling Back: Through a Life Disabled

The paperback version of Rolling Back: Through a Life Disabled

Rolling Back has been published in paperback and is available on Amazon for $6.99 ($6.64 for Amazon Prime members). There is also the Kindle version that costs $2.99. I have provided links to each of them below.

Writing and publishing Rolling Back as been a personally rewarding experience that I wouldn’t trade for anything. Several people have urged me to write another, and I will probably try. However I think I’m ready for a change of pace and may attempt a fiction novel next. I’d be interested to hear your thoughts.

Paperback:

Kindle:

Feb 072014
 
Here is the cover for the paperback version of my book.

As most of you know (I hope) I have published the Kindle edition of Rolling Back: Through a Life Disabled. (You can see the Amazon listing by clicking on the link at the bottom of this post.) I had assumed that most people were now reading books electronically. However I quickly learned that many of you prefer to read books that you can hold in your hands, turn the pages, etc.
I remember those days. Unfortunately I’m no longer able to do that. But the good news is that there now are so many options available for reading on a screen. I am too weak to even hold a Kindle so I use the Kindle Reader on my computer. I have also recently signed up for a wonderful service through the local library called BookShare. It is for people like me who are not capable of holding a book. It is also for the blind. Once you have established your disability and have been accepted into the program, you can scroll through all of the books that a regular library might hold and select ones you want to read. They’re delivered instantly to your computer where you can either read them on the screen, or listen to them. I am very grateful that this program exists.

This is how I read (the 27 inch iMac) and how I write (microphone for voice recognition).

This is how I read (the 27 inch iMac) and how I write (microphone for voice recognition).

The paperback version of my book should be published in about three weeks. It has been a much more complicated process than publishing for Amazon Kindle. Both versions recommend that you work with Microsoft Word, but the publishing process for a paperback needs everything formatted to the exact size of the finished book.
Once the paperback is available you will notice its price is more than double that of the Kindle version. ($6.99 for the paperback versus $2.99 for Kindle.) This simply reflects the printing costs involved in producing a 134 page book with a full-color cover. If you’re curious, my royalty is greater for the Kindle version. I have received some kind reviews about my book. Thank you!

Feb 042014
 

This is the cover for my new book. The art is a slightly modified version of one of my late wife's paintings.

This is the cover for my new book. The art is a slightly modified version of one of my late wife’s paintings.

My book, Rolling Back: Through a Life Disabled, has been published and is available as a Kindle version on Amazon. You don’t need a Kindle to read it, you can read it on any computer or any tablet for smart phone using the free Kindle app. Kindle owners who are Amazon Prime members can borrow it for free.

Rolling Back will be available as a paperback in a few weeks. Right now it is only in the Kindle format, but will be expanded to include other e-readers in three months. The price for the Kindle version is just $2.99. If cost is an issue I hope to be able to offer it free for five days on Amazon. When that happens, I will let everyone know.

Nov 182013
 
Read more about my drinking problem below.

Read more about my drinking problem below.

It is time for my annual update of “Chronicles of Disability.” However rather than simply cover the changes that have happened this year, I have decided to add some new content. This is partially due to my work on a new book I am writing which will tell the story of the journey (or should I say forced march) that my wife and I traveled through the jungles of disability. My own struggle with inclusion body myositis began in 1985, 11 years before I was formally diagnosed, and it continues to this day.

Part of the new content is a gallery of photographs, some new, some from earlier posts on this blog. My goal is to eventually put the entire visual record of my attempts to adapt to inclusion body myositis in one place, organized in chronological order.

This past year has been very difficult. It began with grieving for my wife who lost her battle with myotonic muscular dystrophy October 11, 2012. That grieving process will probably never end although it does change and has become less intrusive on my daily life. During that time I have also experienced the worst decline of physical function of any previous year. Most of that physical loss has been focused on my shoulders, arms and hands. I can no longer hold a Beefeater on the rocks, a Johnny Walker Black with a twist of lemon, a Cadillac Margarita, or even a glass of Petite Syrah. I also can’t hold a glass of water, but that seems to be a minor inconvenience by comparison. Dressing myself is now completely out of the question as is holding a camera or picking anything up from the table, bed or floor. Eating has been reduced to a process resembling a scene from a Monty Python movie. Getting anything from a plate to my mouth involves a slinging motion that frequently sends food flying in unexpected directions.


Now before this pity party gets out of control, I should point out that I continue to find ways to adapt. For example, there is a terrific acrylic beverage cup on Amazon that I use for coffee, whiskey, and wine. It is lightweight, has a handle that fits my hand perfectly and is relatively inexpensive. I can sling it through the air, provided it is only half-full, and generally get it pretty close to my mouth. (There is a slightly larger mug that I use for water.) As to the photography, that problem was solved when I purchased my GoPro and installed the iPhone app to control it. (See an earlier post.) Eating remains an unresolved challenge although I would rather put up with a messy aftermath then resort to being fed. I can only imagine how the pressure to eat quickly and my swallowing problem would combine, with serious consequences no doubt.


Voice recognition continues to get better with each iteration. Now my new iMac with its Mavericks operating system has built-in voice recognition that is almost as good as Dragon Dictate but has the advantage of being launched immediately by simply pushing the function key twice. I still use Dragon Dictate for the longer projects such as this post.

Oct 092012
 

Beth at Sunshine Week One

Beth in the patio of the memory care facility shortly after moving in.

I really appreciate the words of sympathy and encouragement that I have received regarding the latest setback in our lives. I wish I could say that Beth is adjusting to life in the memory care facility, but so far she is not. Just 5 days after moving in, she tried to get up in the middle of the night because she thought I was in the room and wasn’t answering her. She fell and was transported to the hospital. Fortunately no broken bones, just bruises.
I am now trying to learn more about her disease. Not easy since the doctors couldn’t give us a diagnosis beyond some kind of dementia with psychosis but not Alzheimer’s. I’m trying to find a caregiver support group. Not being able to drive and having the terrible public transit system that we do in San Diego just makes matters more complicated. The one good thing about all of this is that I go days at a time without even remembering that I have iInclusion Body Myositis (or that Beth has Myotonic Muscular Dystrophy).

Jan 132011
 

Mike holding an iPad with one of his sketches on the screen

My iPad has allowed me to resume sketching (in preparation for painting) even though I can no longer use a drawing pencil.

To begin with, this article is being written using the Dragon voice recognition system that came free for my iPad. Without it, doing this kind of writing would be very difficult if not impossible, because my fingers can no longer bend or be controlled.

But that is not what originally caused me to purchase an iPad. That happened last year when I was planning to take a watercolor workshop and realized that my weak fingers would no longer allow me to do planning sketches in preparation for painting.

I had already tried a drawing tablet that connects to my computer. I found it very difficult to use since you needed to hold the stylus over to the side of your computer while looking straight ahead at the screen. This didn’t lend itself to a very intuitive form of drawing, for me at least.

But when I saw that the iPad had a touchscreen and that it came with applications for creating art, I decided it was the solution. It turned out I was right, as I have been able to do a great deal of sketching using my iPad and a stylus.

Since then, I have discovered that the iPad is an ideal solution for people with physical disabilities. To begin with, it is very lightweight so I can carry it around with me wherever I go. The voice recognition is ideal for e-mail, Facebook postings, etc.

It is also a great way to take reading material with me as you can download books using either the Apple iBook’s store or the Amazon Kindle store or you can copy other documents that you have into the iPad for reading wherever you happen to be.

It is a highly portable computer, a library, a music studio, a weather station, a radio, a movie theater, a bus or travel planner, and the list goes on. In fact there are now millions of little applications designed for use on the iPad many of which are idel for the physically disabled. Just recently I used its inclinometer to determine that our community’s sidewalks had driveway openings too steep for wheelchairs or scooters to safely cross.

I will talk about many of these areas in future posts. But in the meantime I encourage everyone reading this to at least investigate the iPad for your own use.

Sep 242010
 

Preface: I am not an ADA “activist”, but I believe I can provide a constructive voice that just might help developers, architects and government officials fix access problems before they happen. So I will be writing about issues, both positive and negative, that I encounter around San Diego.

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When the San Diego Naval training Center was converted into Liberty Station, the original historic buildings became the NTC Promenade, an amazing new center for arts, culture, science and technology. I was president of the San Diego Watercolor Society at the time and we were thrilled to become part of this complex.

One of four access ramps at NTC Promenade

The Command Center at NTC Promenade has excellent access.

I was also very pleased that the developers of NTC Promenade were very conscious of accessibility issues. In fact, our building and the two others connected to it, shared four wheelchair ramps.
However, due to a combination of missed opportunities and the challenges of dealing with city and community organizations, there was one notable exception: to cross the 60-foot wide street next to our gallery (Dewey Road) and get to the studios on the other side required a wheelchair to travel nearly 1/4 mile and make three street crossings.
Barracks 19 as seen from SDWS

So near yet so far. A wheelchair must travel 1150 feet to cross this street.

When I brought this to the attention of the management of the NTC Promenade, their Director of Operations, Lew Witherspoon, invited me to meet with him to review the next phase of their expansion into the original barracks buildings so that this kind of problem could be avoided.
Before doing so, I took another look at the already completed portion of the barracks (not part of the NTC Promenade but part of the overall Liberty Station development), and discovered an even more unfortunate lack of access.
Existing Mall at Liberty Station

A seven hundred foot mall with no wheelchair access except at either end.


Running down the middle of the former barracks – now businesses and retail – is a beautiful mall more than two football fields long. Crossing the mall every hundred feet or so are sidewalks connecting the mall to buildings on either side. Those sidewalks end in steps that a wheelchair would not be able to negotiate.
Sidewalk from mall to Vons supermarket ends with high step.

Sidewalk from mall to supermarket ends with high step.

For me in a power chair, it was a simple matter to retrace my path and travel 200 yards to get to the supermarket from the mall. But if I were in a manual wheelchair it could be an exhausting problem. And if it was raining and the only shelter was blocked by a step, it would be very frustrating.
The really disturbing thing was when we took a tour of the future development of the NTC Promenade barracks buildings we saw the very same thing could happen.
Future Mall at NTC Promenade, San Diego

NTC Promenade north mall is also 700 feet long.

Fortunately, since the Operations Director had offered to include me in the planning, there is a better chance that the mistakes made in Liberty Station will not be repeated in the NTC Promenade.
It turns out the solution could be very simple.
Unfinished Walk at NTC Promenade showing 20 foot gap.

It's not to late to design this portion of NTC Promenade for accessibility.

Although the central part of the mall has already been landscaped and the sidewalks are in place, they end about 20 feet short of the raised sidewalks inside the archways of the barracks buildings. This gives room to slope the new sidewalk to meet the grade of the existing building walkways, at very little extra cost.
So thank you Lew Witherspoon of NTC Promenade for letting me represent the needs of the physically disabled community — before the concrete is poured!

Sep 072010
 

Welcome to Life! (disabled). And note the emphasis. Despite having a difficult disabling illness, I still find a lot of pleasure in living. Much of that pleasure stems from finding – and sharing – new ways to cope as my illness progresses. In this blog I will share some of the things Inclusion Body Myositis has taught me. I am not a medical professional, so please regard this information as personal observations and not medical opinion.