Mar 042014
 

bookdessert
I was just finishing a follow-up visit at the wound care center, when I mentioned my book to the nurses. One of them asked how much it was and I told her it was $2.99 for the Kindle edition. “Is that too much?” I asked her. “What if it was free?”

“That would make the difference of whether I had dessert with my meal that day,” she said.

“Well in that case, the Kindle edition will be free starting this Thursday for five days.” (One thing I have learned is that it is always important to keep on the good side of your nurses.)

Because I enrolled my book in a program called “Kindle Direct Publishing Select,” I have the option of setting the price for the Kindle edition to “free” for a five day period. They offer this as a way to widen the audience for a book. The downsides are that you lose out on the royalties during this time and you risk getting some unfavorable reviews as people who may not be especially interested in such a narrow topic may feel they didn’t get their “money’s worth.”

I am hoping this promotion will also help expand awareness of inclusion body myositis and myotonic dystrophy. So it is well worth my cost.

If you haven’t want my book yet and if the reason you were holding back was at all related to the cost, please take advantage of this promotion. It starts Thursday, March 6 and ends Monday, March 10. The free book offer is only available for the Kindle edition and not the paperback which will remain available at its regular price of $6.99. (See the link to the left of this post.)

Feb 202014
 

This is a reenactment of my position when the caregivers got to me.

This is a reenactment of my position when the caregivers got to me.

I am supposed to tilt my wheelchair every couple of hours to relieve the pressure where I sit. This past Saturday was a beautiful day (sorry those of you in the rest of the US and UK), so I chose to get horizontal out in the garden. Before I knew it I had dozed off and was awakened when my right arm slipped off the armrest. It was time to get out of the sun anyway so I attempted to raise my arm to the seat controls. I got within an inch or two and then my arm collapsed. So I tried again. No luck. “Well,” I thought, “I’ll rest a few minutes and try harder.”

Still couldn’t get my arm high enough to grab the armrest. By now both arms were becoming sore from dangling and I realized I would never build up enough strength. There are usually a few people wandering around in the garden, but not this day. Surely someone would come soon. After another 30 minutes I realized it was wishful thinking. Then I noticed I was having trouble breathing. My weak diaphragm makes it more difficult to breathe when I am horizontal.

So I tried to yell for help. Now you’re probably thinking (and you would be right), “How can someone with weak breathing muscles do a good job of yelling for help?”

I decided to pace myself and yell for help two or three times every few minutes. After another 15 minutes, I heard lots of excited voices and was soon surrounded by caregivers who restored me to the upright position. It turned out a resident had been enjoying the sun on our patio about 200 feet away, heard me calling, alerted the staff and I was saved!

I wish I could say, “All’s well that ends well,” but not really. Now I know I can’t venture far from the facility on my own if there is any chance I might, through force of habit, tilt my wheelchair.

I often say that inclusion body myositis forces me to rewrite my life’s script. Lately, it seems it’s trying to force me into coming up with an ending.

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!

Dec 192013
 

What if you liked to drive fast? And what if you couldn’t drive at all? What if the most exciting part of any trip was when you tried to negotiate your power chair onto the EZ-LOK system on the floor of your van?

Well, that’s basically my situation. But I do have a few advantages. I have a power wheelchair. It doesn’t go really fast, but I usually can catch up to most of the pedestrians on the sidewalk. More importantly, I have a GoPro camera that I can strap to my head or mount on the chair. And I have A brand-new iMac with Logic Pro X for manipulating sound and creating music plus Final Cut Pro X for editing video. Put it altogether, and what might be the result?

You are about to find out, provided you click on the video link below. It only lasts a minute and half, but it might give you a whole new idea of what life in an assisted living community could be like.

I call it Huntington Raceway Lap. You will see why.

Enjoy.

Dec 082013
 
Using my techniques, I am now able to eat a varied diet.

Using my techniques, I am now able to eat a varied diet.

Like most people with inclusion body myositis, I have weak swallowing muscles. This causes me to have trouble forcing food to go down the esophagus and as result it will try to go down my trachea. Over the years I have had several swallowing studies including two at UCSD Medical Center. These merely confirmed what I already knew, however they also allowed me to see, by way of the fluoroscopic studies, exactly what was going on. I was able to see that the food got trapped in pockets near my vocal chords. This explained why, when I would try to speak while eating or shortly afterwards, I would almost always end up choking and having a violent coughing spell.

The doctors had several suggestions, including having my throat expanded, or having Botox injections, or even stopping eating altogether and having a feeding tube inserted in my stomach. I have known people who have pursued each of those routes. The first two generally do not produce lasting results and the feeding tube would require a higher level of care. So I decided to take what I learned and figure out a way to eat successfully. I’ve been observed by a speech therapist while eating and he said that I was using the techniques that he would normally teach to someone to help them overcome swallowing difficulties. With that kind of encouragement, I have decided to publish a video showing me eating accompanied by my own explanation in the hopes that it might help others who are struggling with this problem.

As always, I caution you that I am not a medical professional and that this is not medical device. I am simply showing you what works for me and I cannot predict whether it will work for you.

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.

Sep 232013
 

As a disease like inclusion body myositis progresses, it does more than produce the physical changes you expect. It also has a way of taking over your life. It seems that every day I spend more time trying to find solutions to living with IBM than I do actually living. It is like I had just taken the most demanding job imaginable and simply have little time for a personal life.

This may be why I am able to tolerate my current living situation. Even though I am in a very comfortable room with a perfectly large bathroom and am surrounded with just about every assistive device you could think of, it still is not what a normal person would consider ideal. The other residents are nice people, at least the ones who are capable of speaking, but for the most part they are either older than I am by many years or have other issues that prevent forming a personal bond.

About two hours of every day is spent taking care of basic physical needs such as getting up, toileting, bathing, eating, etc. The rest of the time I generally spend at my computer working on the website and blog for Huntington Manor, updating my own blog and my wife’s memorial site, visiting friends on Facebook and posting to the various support groups related to my illness. Every so often I need to tilt my wheelchair back to a horizontal position to help avoid pressure sores and circulation problems and during that time, since I am basically staring at the ceiling or the sky (see video below), I generally focus on meditation. I usually spend one or two hours out of each day looking up information about living arrangements, adaptive equipment, etc., or making phone calls about the same issues. Then there are the doctor visits which usually happen one or two times a week. Even though the appointments themselves are not that long, they involve 8 to 10 miles of wheelchair riding for the round-trips, or even longer bus rides. If there is time left over, my latest Netflix treat awaits.

As I write this, I am not sad or bitter, I am simply amazed by the way I have been so completely taken over by IBM. Up until a year ago, my post-retirement time was more likely to be spent dealing with my wife’s myotonic muscular dystrophy, as it was a disease even more complex and, as we now know, more life-threatening than mine. But that seemed like a worthwhile pursuit and as long as there was hope for making her better, what else would I be doing?

Now here is where this analysis gets a little weird. When I look at the lives other people live, I do not feel envy. if I had to describe what I feel I would say it was puzzlement. Dining out, games, camping, trips to the beach, all the things I can no longer do, I don’t really miss. Somehow I feel like what I am doing is actually entertaining.

My biggest regret about the way I live is that I wish it could be more meaningful. I am sure everyone starts having such feelings as we begin to realize that one of these days will be our last. But I have a unique opportunity since I have almost no obligations other than arranging for the assistance I need to keep me healthy. I keep returning to writing in the hopes that someday I will write something that really has meaning. I am sure that makes me one of about half a billion writers who feel the same yearning.

Unfortunately, making the decsion to “write something meaningful” isn’t enough. I am reminded of the scene in Funny Farm where Chevy Chase is sitting at his typewriter, having left his job in the city to pursue a career as a novelist. He types the title, puts in another sheet of paper, types “Chapter One,” shoves the carriage return (something young writers may not know about) and sits staring at the empty page. For days.

One of the nice things about voice recognition is that an empty screen and listening microphone can’t apply the same pressure. Eventually it will hear some background noise and start typing random words, frequently expletives. For that matter I can just start talking gibberish and Dragon Dictate will not even raise an eyebrow as it spits the words onto the screen.

See what I mean?

A two minute sample of garden meditation.

Aug 122013
 

After years of dealing with Medicare, I have managed to distill their process into this simple card.

My latest healthcare adventures have involved Medicare. The Scripps Health system managed to get into the act again as well.

Case 1: Inclusion body myositis has left me completely immobile when I sleep at night. This makes me very susceptible to pressure sores. I had developed several and was being treated by a home health nurse who told me she did not think she could make them get better as long as I was sleeping on my old mattress. It was not a cheap mattress by any means, it was a special pressure reducing mattress that cost $500. However, she told me I needed a mattress that would alternate the pressure and thus relieve susceptible areas. It also has a feature called low air loss in which tiny holes let air leak from the mattress and provide a source of oxygen to the skin which is also good for healing. She ordered the mattress through a local supplier to deliver immediately and it worked great. Within a couple of months my pressure sores were nearly gone and the home health nurse said she did not need to come back anymore. Right after that I got a call from the mattress supplier telling me that they were coming to get the mattress because Medicare would not pay for it as long as my sores were better. I said, “But my wounds will come back right away without it.” They assured me they knew that, but that is the way Medicare wants it.

In this case, rather than trying to go through a dysfunctional medical system, I simply went to Amazon, found the same mattress and ordered it. I was expecting it to be many thousands of dollars, since Medicare was paying several hundred dollars a month to rent it. However it actually only costs a few hundred dollars. (And people wonder why the Medicare system is in trouble!) Think about it: during just the time that I was renting the mattress, Medicare paid far more than it would cost to buy a brand-new one. In addition, Medicare’s policy was designed to force me to develop pressure sores all over again at which time I would again have to rent the mattress, and hire home health care again. Medicare pays approximately $200 per visit for the 15 min. that a nurse spends changing a dressing.

Case 2: I have been on a BiPAP system every night for the past 15 years. Not only is my breathing weak because of inclusion body myositis, but I also have severe sleep apnea which was diagnosed by UCSD. Recently Medicare instituted a new “competitive bidding” system which opens up each type of durable medical equipment to bidding from any company anywhere in the United States. This has left out most of the smaller companies that had always given people excellent service. In my case, it meant my provider could no longer furnish me with BiPAP supplies since they did not win at competitive bidding. I either had to go to another local company which has a terrible reputation for bad service or go to one of the out-of-state companies that won the bidding. Neither was a good option. However, if my need could be escalated another level to a constant volume type of BiPAP instead of a constant pressure type, it would not be subject to competitive bidding and I could retain my good supplier. The supplier was certain that I would qualify due to my advanced disease. So I went to the doctor at Scripps who sent me to their pulmonologist who really did not know much about my history but was skeptical as to whether I needed that kind of help. So now before I can qualify, I have to do overnight oximetry which entails two trips to Scripps clinic, one to pick up the equipment and the other to return it. In addition I must have several pulmonary function tests and a blood arterial gas test. Then, depending on the results, he may prescribe the more advanced equipment. All because a bunch of clerks of Medicare think they know how to practice medicine.

Meanwhile, politicians in Washington are arguing about whether Medicare benefits should be cut back. They rarely argue about whether the Medicare system should operate more intelligently.

Jul 232013
 

A photo of Earth taken from nearly a billion miles away by Cassini orbiting Saturn. I am in the picture.

Living with a progressive untreatable disability like inclusion body myositis can be very difficult, but it is not rocket science––or is it? Friday, July 19, I toured the NASA Jet Propulsion Laboratory in Pasadena California, and shot lots of video footage with my new GoPro Hero 3 Black camera. It just happened to be the day that the Cassini spacecraft orbiting Saturn was going to take a picture of Earth. Many of the employees of JPL were out in the courtyard waving for the picture. You cannot see them in the video but you can hear them. I also included the picture that Cassini took of Earth, with the assumption that I am in the shot. The shakiness in the video comes from my inability to hold my hands very steady. I should have used my helmet mount, but I thought that might give security some problems.

Now about the rocket science. To begin with, it turns out the Jet Propulsion Laboratory is no longer that concerned with jet propulsion other than hitching a ride with a rocket to get to where they need to go. Their main focus these days is on robotics. Their mission control center is all about sending and receiving signals through millions and even billions of miles of space. For example, the photograph that is on this page and featured in the video showing Earth as seen from Saturn, was taken by the Cassini orbiter. if you wanted to be in the photograph (not that anybody would really know you were) you needed to be facing Saturn and smiling and waving about one hour and 20 min. before Cassini actually snapped the shutter. That is how long it takes the light waves to get from Earth to Saturn.

But on a more down to earth example, the camera I used, my GoPro, is a marvel of technology in its own right. Slightly larger than a matchbox and not much heavier, it can shoot video that is 4000 pixels wide and I control it with my iPhone. Despite being unable to move my fingers, I was able to compose a fairly complex score to go with the video using Logic Pro software on my iMac and a Korg Nanokey keyboard that is perfect for me since the keys merely need to be touched. The video editing was done using Final Cut Pro X, an amazing software program that puts the equivalent of a million-dollar video production studio onto my desktop for a cost of about $300. Finally, I am dictating this entire blog, along with tens of thousands of words that I have recently written for books in progress using Dragon Dictate voice-recognition software.

Thank you scientists everywhere, and please keep these wonderful innovations coming!