Apr 182014
 
"Up against the wall and don't move!"

“Up against the wall and don’t move!”

Life with inclusion body myositis presents some difficult choices. My latest circumstances found me spending lots of time at the local hospital wound care center, buying illegal drugs, and facing long periods of solitary confinement in a 3 foot by 7 foot space. Okay, so I’m exaggerating a little, but we have to make this interesting don’t we?

I’ve been in a wheelchair since 1999 and for the past several years I have not been able to get out of it other than to go to bed or visit the toilet. This means that I am sitting in one position for about 15 hours a day. That is never a good idea even for healthy skin, and my skin is far from healthy. Recently a large area of the region where I sit has lost several layers of skin. The wound care doctor said it was excoriated. This is a fancy word for saying that the skin has been scraped off. It doesn’t feel good, and in fact was at one time a favored form of punishment. The doctor also said the only way to prevent my wound from getting much worse, which could result in surgery and a lengthy hospitalization, was to go straight to bed and stay there. Two hours on one side and then two hours on the other.

This Peruvian skin ointment was the focus of a federal lawsuit.

This Peruvian skin ointment was the focus of a federal lawsuit.

The doctor also recommended I use a prescription ointment called Xenaderm. It works very well, much better than any of the other ointments or creams I had tried. But when I got the bill from my pharmacy I discovered it is not covered by insurance and costs $31 per tube. A little investigation revealed that the ointment is a Peruvian concoction not approved by the FDA and in fact was the subject of a major lawsuit in Florida. On the other hand, all three wound care physicians recommended it, it works, so I’m using it.

I have been following the bed rest instructions, up to a point, and I’m happy to report my skin is doing much better. However those who know me will guess that I’m not taking this lying down (sorry, couldn’t resist). I am working with my wheelchair provider, MDA doctor and a physical therapist to try to improve my wheelchair seating so I can resume a reasonably normal lifestyle. Right now I am sitting on a custom Ride cushion that cost several thousand dollars and is no longer comfortable. I think that as I have grown weaker my body shape has changed. My weight is still the same, but more of it seems concentrated in the worst possible place. I will record my progress with a new cushion on this blog in the weeks ahead.

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!

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.

Jan 092014
 

At Huntington Manor assisted living working on my first book. Since I can't move my fingers, I write using voice recognition. Thus the headset.

At Huntington Manor assisted living working on my first book. Since I can’t move my fingers, I write using voice recognition. Thus the headset.

Some of you will recall that a few months ago I decided to learn how to write applications for the iPhone and iPad. I diligently studied and practiced the computer programs necessary to master if one is going to write an App. Despite my hard work, I found the lack of finger dexterity to be an overwhelming obstacle, since code writing involves a large number of special characters that are tedious to dictate. (I can’t use a conventional computer keyboard due to the loss of movement in my fingers.) There are also a lot of corrections to be made as you work, even more so than with conventional writing, and those corrections are even more tedious. The end result was that I was spending 3 to 4 times as long learning each chapter as the other members of my online class. So I finally realized that writing Apps would not be in my future.

The lemonade that came of that sour experience was that I became more proficient using voice recognition technology. Did that mean that possibly I could get back to doing some serious writing? Perhaps, although I know better than to get too enthusiastic as that seems to be an invitation for my disease to pick up the closest bucket of cold water and throw it on me.

I am cautiously working on some writing projects. One is a book that is fairly far along. You have to remember that, for me, something that is fairly far along must be measured differently. For instance if I’m fairly far along to the store, it means that I have been riding on my wheelchair for half an hour and am about halfway there. In writing terms, it means that I have finished the first draft of a nonfiction book. The topic is – – surprise! – – What it has been like to have a rare, untreatable, progressive muscle-wasting illness and the various ways I have found to cope with it. The book is made a little more complex since my wife also developed a muscle disease and I became a caregiver as well as a care receiver.

Once the book is finished, I plan to publish it as an e-book on Amazon Kindle and SmashWords, formats that will allow it to be downloaded and read on Kindles, iPads and other tablets and computers. I may also use CreateSpace to make it available as a paperback.

I am still deciding on a title so I won’t use it here, but here is the text I plan to use to sell the book:

Why you may need to read (This Book) right now.

Many years ago I would have loved to have found this book. I had been diagnosed with a rare form of muscular dystrophy called inclusion body myositis, and I had no idea what to expect. If could roll back time so I could have had this book then, my life would have turned out much differently. I would have done a much better job of preparing for what lay ahead, avoided being blindsided by changes I didn’t see coming, traveled more and worried about money less, hugged my wife and children more because I would have known there would come a day when I could not.
Going by the philosophy of better late than never, I have written (This Book) to give myself advice should they perfect time travel in the next few years. But if they don’t, maybe you or someone you know or especially someone you care for has been diagnosed with a disease that is going to impact the ability to function in life and this could be exactly the book you need right now.
I was diagnosed with my rare and untreatable form of muscular dystrophy in 1996, although I suffered from its effects for many years before. Just about the time I was learning to adapt, my wife went out and got her own rare and untreatable form of muscular dystrophy. Not the same as mine, she was far too original to do that. She had myotonic muscular dystrophy. But they were similar in the way they took away our ability to walk, to use our hands in a skillful manner (a serious issue since we were both artists) and they seemed to force us to rethink our living arrangements every other week. This book is about the things we learned, and that I am still learning by myself now that my wife has succumbed to her illness. I’ve shared some, but by no means all, of this information with the tens of thousands of people who have visited my Life Disabled blog. You will find links to parts of that blog sprinkled here and there, as it contains hundreds of pictures and illustrations and even videos that would be impractical to include.
I hope you find (This Book) to be interesting, sometimes entertaining, but always helpful.

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.