Feb 252016
 
On the left, the way we were in 1996. On the right, with some of my grandchildren and great grandchildren, late last year.

On the left, the way we were in 1996. On the right, with some of my grandchildren and great grandchildren, late last year.

Normally, my “Chronicles of Disability” consists of annual reports on the changes in my health over the previous 12 months. I forgot to post a report for the year 2014, but perhaps it’s just as well because there were very few changes – – just more weakness in general. So now we come to this major milestone. It has been 20 years since I was diagnosed with inclusion body myositis (IBM). This rare muscle wasting disease is described as “slowly progressing”. That may be true one month to the next or even one year to the next. But when the person I was in 1996 is compared to who I am today, the contrast is jaw-dropping.

Twenty years ago I didn’t think there was much wrong with me. Yes I was slowing down in my running, and my golf shots seemed to be getting shorter, and I did fall once in a while, so what? I was 55 years old, just normal aging? I could still hike mountain trails, jog (slowly), show up for work every morning, work around the house, go to parties with my wife, take long driving vacations. Life was very good.

Now, I very nearly meet the criteria of a quadriplegic. I can’t move either of my legs or my left arm. I can only raise my right arm a few inches above my waist. I cannot stand, walk, or transfer without the aid of an overhead lift system and a caregiver. This will probably be the last year that I am able to continue feeding myself, unless the new drug (BYM338) gets released and actually works. My fingers don’t bend and my speech is getting quite weak. This is making my writing avocation more challenging and I may need to give it up within a year or so. Unrelated to my disease, but definitely affecting my life, my wife died of her own rare muscle illness in 2012.

My current home features the ultimate "open floor plan". My wheelchair loves it.

My current home features the ultimate “open floor plan”. My wheelchair loves it.

At the time of my initial diagnosis, we were living in a two-story four-bedroom home overlooking the mountains of southern California and a little slice of the Pacific Ocean. Today I am living in 250 square feet in an assisted living facility. The room is comfortable, the view isn’t bad (mostly of an ancient olive grove), the caregivers are friendly and helpful, and the food is very good. My days are spent doing what writing I can, either for Huntington Manor or for my Life Disabled blog, but that work is getting more difficult every day. So instead I am catching up on a lot of movies and television and doing a little reading. I also like to take my wheelchair out on long jaunts through the countryside and down to the local business district of Poway. Huntington Manor is launching a major renovation of the facility and I have been promised one of the beautiful new rooms that will overlook the garden and the hills beyond. That is enough to keep me motivated to stick around until the project is finished in 2017.

When I first started this blog, and when I wrote “Rolling Back: Through a Life Disabled” I suggested that the newly diagnosed read about my experiences to be properly prepared for what lies ahead. Now with a new treatment on the horizon, it is quite likely they may never have to experience this severe of a decline.

I have reposted many of the pictures and captions from the past 20 years. I think they tell an interesting story about the effects IBM has had on one person’s life. As you’ll see, I have remained generally happy and hopeful throughout that time, but I must admit that my general mood has been declining. Recently, I saw a neurologist who lowered my expectations for the new drug by pointing out that it would not be of any use for the muscles that were already dead and that, in my case, most of the muscles are completely destroyed. The most I can hope for is maintaining the minimal capabilities I have now.

By the way, one of the special pleasures I get these days is when someone purchases my book. It’s available on Amazon — just click on the link on this page — seven dollars for paperback and three dollars for the Kindle edition, or free if you are using Kindle Unlimited.

Jul 182015
 
"Point Pinos" is one of two of my paintings (along with one of my wife's) hanging in the permanent art collection of the Muscular Dystrophy Association.

“Point Pinos” is one of two of my paintings (along with one of my wife’s) hanging in the permanent art collection of the Muscular Dystrophy Association.

Ten years before this blog began, and several years before the term “blogging” came into general use, IBM had taken my life in a new direction. Besides forcing me to give up a career as a writer and advertising agency owner, it had herded me into a new career as a watercolor artist. Within months of closing the doors to my ad agency, I was opening books on painting techniques, design theory and color harmony. I joined an outdoor painting group, then became a member of the San Diego Watercolor Society – one of the largest groups of its kind in the world – and soon became a board member and eventually president.

This was   my booth at the Hotel Intercontinental in 2003 for The Myositis Association national conference.

This was my booth at the Hotel Intercontinental in 2003 for The Myositis Association national conference.

This new avocation gave me such pleasure and added so much meaning to my life that I had to share the news. I talked to members of our local Myositis Association (TMA) support group and they encouraged me to take my message to the national conference that was coming up in Houston. This was in 2003. The organizers of the conference also encouraged me and gave me a booth where I could display several paintings and hand out literature.

 "Monterey Bay" (15 " x 22 ") will be auctioned  at the 2015 national conference of the myositis Association to raise money for research.

“Monterey Bay” (15 ” x 22 “) will be auctioned at the 2015 national conference of the myositis Association to raise money for research.

Twelve years later, I have once again been approached by TMA to participate in their national conference in Orlando. Of course I cannot travel there, but one of my paintings is making the trip, along with this updated version of my literature (below). The painting will be auctioned with the proceeds going to benefit research into myositis. One session of the conference is about finding purpose in life following disability, so I am very pleased to participate in this small way.

 If you click on this image of the front and back cover it will make it large enough to read.

If you click on this image of the front and back cover it will make it large enough to read.

 This is the inside of the brochure where I tell the story of becoming an artist after being diagnosed with inclusion body myositis.

This is the inside of the brochure where I tell the story of becoming an artist after being diagnosed with inclusion body myositis.

They titled this session “Act II” but if I could be there in person I might add that myositis is not necessarily a two act play. It has been nearly 5 years since I was forced to give up painting due to seriously declining strength in my hands and arms. Of course that led to yet another exciting pursuit – – writing a blog and a book taking advantage of voice recognition technology and electronic publishing. (Which reminds me, my book has been published for nearly a year and a half now and sales have slowed down considerably after beginning with quite a flourish. I didn’t publish the book to make money, in fact I have given away nearly as many as I have sold, but I am curious why it seems to have been forgotten. It was written to help people with myositis, especially those newly diagnosed, because this is not a common illness and coping with it is not a common skill. You don’t even have to pay for the book if you don’t want to because Amazon Kindle owners can read it for free. I’ve included the link below.

Jun 162015
 
Here is my new mattress, following final inspection. You can see the individual air bladders that are inside. Once the cover is pulled over and zipped shot it looks just like a regular mattress. For the curious, the rest of my equipment consists of the electric bed, the pump unit, the DVR, Blu-ray, Roku, smart TV, emergency call button on the wall and one of the supports for the overhead lift system.

Here is my new mattress, following final inspection. You can see the individual air bladders that are inside. Once the cover is pulled over and zipped shut it looks just like a regular mattress. For the curious, the rest of my equipment consists of the electric bed, the pump unit, the DVR, Blu-ray, Roku, smart TV, emergency call button on the wall and one of the supports for the overhead lift system.

Inclusion body myositis usually begins with weakness in the legs, hands, or, sometimes, the swallowing muscles. Eventually it gets around to all of them and a lot more however. One of the results is you may lose the ability to roll over in bed. That happened to me several years ago leaving me vulnerable to skin problems. Eventually they got bad enough to need nursing help from a home health agency. One of the first things they did was order a low air loss alternating pressure mattress. It consists of 20 air filled chambers that take turns fully inflating. They also are constantly releasing a small amount of air to keep the skin supplied with oxygen. These two functions worked very well for me and also provided the best sleep I have had in years.

Unfortunately, as I reported in a post two years ago, once I was getting better, Medicare took away the mattress. As we all know, Medicare takes little interest in preventing illness, preferring to spend much more money once we get sick enough.You can read the entire original story here.

To get around their silly game I bought my own mattress on Amazon, exactly like the one they had provided. I paid just a few dollars more ($600) for the entire mattress and pump system than Medicare was paying each month.

After two years of good service, the pump that put air into the mattress gave out. (Actually, just a cheap little pressure gauge failed but that was enough to make the entire mattress stop working.) The point is what happened for the next four days until my replacement system arrived.

At first, I felt I had only two choices: don’t sleep on a completely deflated mattress, or don’t sleep on one so overinflated it feels like concrete. For the first two nights, I got no sleep whatsoever. Then on the third night I worked out a system where I could use a remote control in bed to turn the pump on and off. Of course I needed to be awake to do this effectivelyWhich turned out to be not difficult since there was almost always an alarm sounded. On those nights I got two or three hours of sleep each. Regardless, each morning my backside would be as sore as if I had been taken to the principal’s office several times.

I guess you can call this a backhanded testimonial to the efficacy of a low air loss alternating pressure mattress. In fact, you might want to buy two.

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 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 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.

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.

Jul 122012
 

Spray cans are very frustrating for those of us with weak fingers. Mine have gotten to the point where i needed two hands — one to hold the can, the other to push on the button with my thumb! Try painting that way, or spraying oil into a skillet, spray starch onto a shirt, or lysol onto a countertop. Then I discovered the device shown here. It works for me, and that’s really saying something! I bought mine on Amazon. In fact, I buy almost everything there. Saves time, saves money, and I can’t drive to the store anyway.

Oct 282010
 

OneTouch Can Opener on top of a can.

I used the OneTouch® Can Opener on my favorite soup - albondigas.


Preface: The day after I posted this, my can opener really jammed. I’ve seen other reviews about this problem, but I chalked them up to operator error. Now I’m not so sure. I still like the product, and it’s opened dozens of cans for me, but my endorsement is no longer so glowing.
If you have weak hands and fingers, you may have shared my frustration with can openers. The ones that sit on the counter have a major flaw: they expect you to hold up the can with one hand while you press down a lever with the other. Unless I was opening a 6 ounce can of tomato paste, I found that an impossible assignment. So when I found the OneTouch® can opener on Amazon I just had to share it with everyone. I have included a video, because it is almost impossible to describe in a believable fashion how easy it is to use this device. In the interest of full disclosure, I will say that once or twice it seemed to grab hold of a can and not want to let go even after it was through cutting. But after a little fussing with it, I managed to persuade it to let go.