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.

Dec 232014
 

This photo shows why I haven’t been able to take photos lately.

Inclusion body myositis has left my hands weak and disfigured.

Inclusion body myositis has left my hands weak and disfigured.

Recently I have not had much to say. No, let me correct that. I have not been saying much. I do have a lot to talk about, however I am trying to make some more adaptations to keep up with the progress inclusion body myositis is making on my body. The effects are especially noticeable on my hands and fingers, shoulders, and the ability to speak, sing and swallow. I recently got approval to go on home health and have started receiving regular visits from a speech therapist, occupational therapist and physical therapist.

Not only are my hands and fingers week, they are nearly frozen in one position. this has caused me to temporarily give up photography altogether. Some of you may recall that in the beginning I was using either my iPhone camera or my GoPro camera which was controlled by my iPhone using the GoPro app. I can no longer hold the iPhone in my hand and use my other hand to touch the screen, so that rules out both of those methods of taking pictures. My occupational therapist is working with me to try to find a system that will solve this. When he does (and I am sure he will; he is very clever and persistent) I will do an article about the method used.

My occupational therapist is also working with me to expand upon a scheme I devised to restore some movement in my fingers. I played the piano from the age of three. It was one of my great pleasures and a favorite method of relaxation. IBM took that away from me several years ago. There is a piano in the common area at my assisted-living facility and occasionally I peck away with the one finger of my right hand that is still strong enough to press a key. So I decided to purchase an electronic keyboard, a Yamaha PSR E443, that would always be waiting for me in the “office” of my assisted-living apartment. My theory was that I would be so motivated to produce music that I would play it often and perhaps expand my ability to move the fingers on my right hand. Even more ambitious, I was hoping to be able to use at least one finger on my left hand to take advantage of the auto accompaniment function of the keyboard. However, the extreme weakness of my left shoulder prevents me from using my left hand unless I lean to the right and lock my shoulder in place. Doing that leaves me unable to use my right hand. After working with my keyboard about one month, my right hand acquired enough dexterity that I can play two notes at once using the index and middle finger and then add a third note with my thumb. This is a major increase in hand function and it is also paying off with things as simple as picking up an object from my desk. I am also now able to use two fingers on my left hand, although I have not been able to overcome the problem of lifting that hand and using it in conjunction with my right hand. My occupational therapist believes this is a therapy worth pursuing and he is now working on a system that might allow me to make more use of my left hand by supporting my left arm and leaving my hand free to move. If this works out, it will also be the subject of a blog post.

My physical therapist is trying to loosen up my neck muscles which are so tight that I can no longer turn my head enough to see behind me. This is a big problem when you need to back up a 350 pound wheelchair. My speech therapist is working with me on strengthening the muscles used for swallowing and is teaching me ways to avoid further damage to my weakened vocal cords.

Early next year, I will let you know how everything is going. Meanwhile I wish you all a good holiday season and an even better New Year.

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 212013
 

Mike wearing GoPro

Here I am wearing my new camera. I just have to be careful not to nod my head if somebody waves to me!

Every time I think I have hit upon a pastime that I can continue to pursue despite the progression of my illness, I discover how wrong I was. When I was forced to give up work, I took up painting. That lasted for 10 years until my arms and hands became too weak to guide a brush. So I decided to take up writing a blog. But that meant I had to overcome the weakness of my fingers – fortunately voice-recognition was improving and it is a pretty good substitute. However the other part of writing a blog is photography. Over the past few months my hands and arms have become too weak to hold the camera or cell phone and press a shutter. Since part of my new “job” now that I am living at Huntington Manor assisted living is maintaining their website and blog, photography is a very important part of my work. I was about ready to throw up my hands and quit (except I cannot throw up my hands anymore) but then I was watching a NASCAR race and one of the cars was sponsored by GoPro. I had heard the name before and knew that it was some kind of camera system, so I looked it up on the Internet. I discovered that the GoPro was a very compact camera that had been designed by surfers to allow them to make videos of their rides. It soon spread in popularity and was used by skateboarders, skiers, model airplane builders, free base jumpers, and just about anyone who wished to make a video record of their exploits. It came with a waterproof housing of course but that did not interest me so much. What really caught my attention was both its light weight and the fact that it could be controlled remotely using an iPhone app.

I visited my favorite store (Amazon.com), read about the various models and ordered the GoPro Black, the one with the highest resolution. I also ordered the special mounting system that goes around the head. Now I have a camera system that I can take with me without having to hold it in my hands, and I control all of its functions from my iPhone resting on my lap. I have been using it for a couple of weeks now and have already produced a major video for Huntington Manor as well as taking the number of other photographs. It does not have a zoom, but it has the capability of taking very high resolution video, double the size of high-definition, which means that I can use video editing software to zoom in on sections that I have shot, without winding up with fuzzy, pixelated video. Below are my first videos produced using this camera.

I have included this link to the GoPro camera description on Amazon in case anyone is interested in getting one for themselves. There are three different models, but I highly recommend getting the highest resolution “Black” model which would then allow zooming in postproduction.

This is a video I made about the Huntington Manor Summer Picnic. It includes the food preparation in the kitchen as well as the event itself. All the video was shot with the GoPro camera, and edited using Final Cut Pro Xon my iMac. The background music was created using Band in a Box, The only way I can create music these days is using that program. I can use one finger to type in the chords and a simple melody and it does the rest.

Here is another video shot with the GoPro. I placed it near the bird feeders at Huntington Manor and from a distance waited for the goldfinches to arrive and then started the camera recording. The video was shot at 120 frames per second to produce the slow-motion effect.

May 292013
 

The Korg nanoKey2 keyboard doesn't have conventional piano keys, but it works well for me.

This stupid disease (Inclusion Body Myositis} wasn’t content with taking away all of my physical activities like running and playing golf and tennis and gardening and cooking. It also took away the strength in my fingers so that I could no longer type (a major loss for someone who made his living as a writer) and so that I could no longer play the piano, something I had done since I was 3 years old.

But those who know me realize I am stubborn and so I have continued to search for other outlets. Recently, I decided to take vocal lessons. I had written a song that seemed to get fairly decent response from those who heard it, but it didn’t take a very critical listener to realize that my voice was untrained. I assumed it was due to lack of practice since there was a time when I had some vocal training.

I signed up for lessons but after the first couple of sessions I realized that my voice was not getting any better, and was perhaps getting worse. Then I looked at a video of me making a speech to the San Diego City Council 6 years ago, and I realized that my voice had been much richer then.

I did some more reading and research about the voice and realized that my vocal chords were nothing more than muscles, and unfortunately, that’s what my disease feeds upon. What has been happening is my vocal cords have been becoming weaker year-by-year. This gives a certain raspiness to my voice making singing difficult for me and unpleasant for listeners. Worse yet, with this disease if you try to strengthen the muscle that the disease is already weakening, it makes the disease process accelerate. In the 2 weeks of vocal exercises, I had actually damaged my voice more.

Now what? Well, if I’m going to the be sticking around on this planet for a while longer, I need something creative to do. I had tried to learn objective C programming so that I could write apps for the iPhone, but I found that my lack of working fingers made the learning process just way too slow and I gave that up. I am currently working on my memoirs, using voice recognition technology, and that is an interesting thing to do and keeps me occupied for a couple of hours a day, but I need more than that.

I’ve always enjoyed making music, although not having the ability to strike several keys of a keyboard at the same time made it tedious and boring. Then an acquaintance told me he was creating complex musical arrangements using a program called Sibelius. This intrigued me, as it meant I could develop a multi-part composition one note at a time. So that is my latest venture and I must say it is a lot of fun even though once again I have gotten into a brand-new area that has a very steep learning curve.

One interesting new tool I have just discovered is the KORG nanoKey2 keyboard. Most electronic keyboards are built to resemble a standard piano keyboard and as a result the notes are very difficult for me to press. This one has the same layout but the keys are much shallower and require less effort to press. If you are interested, Amazon sells it:

Should anything worth sharing come of my attempts I will post it here. As a start, I am trying to do a remix of my song, “I Won’t Stand for That!”

Apr 222013
 


Amazingly enough, I have had a few requests for the sheet music for this song I wrote. I have finally figured out how to accomplish that using a combination of Band in a Box and Photoshop. Please feel free to sing my song whenever the spirit moves you. (I’m sure you can improve on my rendition.) Of course, I am reserving the rights for any recorded or published versions of my song. Cick on each thumbnail to bring up that page of the song.
If you have trouble downloading the files, send me an email (mike@lifedisabled.com) and I’ll send them to you as an attachment.

Nov 252011
 

Mike takes his song on the road.

(But I will sing about it.) I wrote and performed this song to encourage myself and others suffering from a serious chronic illness to keep fighting and even enjoy the struggle. Most of the video was shot with my iPhone 4s, editing was done in iMovie, instrumentals created with Band in a Box and Garageband, vocals recorded and final compilation done on a MacBook Pro using Garageband.
I Won’t Stand For That

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.

Dec 222010
 

Rainbow north of our Rancho Bernardo home.

Rainbow north of our Rancho Bernardo home.

The New Year is often a time for reflection and introspection. So in 2010 I took this opportunity to review the highlights (ho ho) of my journey with inclusion body myositis, along with my wife’s struggle with myotonic dystrophy. This is my second annual update. Sadly, my wife’s struggle ended October 11, 2012.

1985-1995 (pre-diagnosis) stumbling while jogging, golf club flying out of hands, difficulty rising with backpack, jogging speed declining

1996 – diagnosed at UCSD Medical Center

1997 – started using walking sticks to help avoid falls

1998 – purchased scooter with elevating seat for distances more than 100 yards

purchased van with lift in rear for taking scooter along

1999 – fitted for full leg braces (KAFO) and forearm crutches

purchased Jazzy wheelchair with elevating seat

had condo modified with ramps at curb, entrances, sunken living room

replaced roman tub with roll-in shower, added roll-up counter in kitchen

bought fiberglass portable rampp

2000 – purchased raised toilet seat

purchased hand controls for van

retired on disability

gave up piano, golf, tennis, took up watercolor

2001 – became coordinator for paint out group of San Diego Watercolor Society

2002 – became Membership Director of San Diego Watercolor Society

2004 – became International Exhibition Director of San Diego Watercolor Society

purchased van with ramp and transfer seat

2005 – purchased Pride lift chair

became Technology Director of San Diego Watercolor Society

began making hooks and dressing sticks

purchased grabbers (six)

Beth erroneously diagnosed with ALS by local Centre for Healthcare neurologist

(two months later) Beth correctly diagnosed with myotonic muscular dystrophy by MDA neurologist

acquired Permobil C500 (Medicare) for Mike

purchased Jazzy 1103 wheelchair for Beth

2006 – purchased Biobidet

became President San Diego Watercolor Society

purchased single story home in Rancho Bernardo (San Dego)

added 200 feet of outside sidewalks for wheelchair access to yard

added ADA bathroom (elevated toilet with bidet, low-lip shower, roll-under sink, room for wheelchair)

acquired hospital bed (Medicare)

2007 – began using shelf liners to lift legs

began purchasing wheelchair pants from USA Jeans

2008 – purchased ceiling lifts for bedroom and bathroom

2009 – purchased rechargeable wine opener

2010 – purchased iPad for drawing, games, voice recognition, etc.

purchased automatic can opener, jar opener

purchased computerized sewing machine (no foot pedal)

made belly bag, art apron, cooking apron, robe, work table, sliding pad

2011 – Lost ability to make horizontal transfers and began using overhead Waverly Glen lift.

Sewed pants that velcroed around me after being lowered onto them.

Hired part time caregiver for showers ( no longer safe to do on my own).

Lost ability to drive, began relying on the bus.

Hired second caregiver and greatly expanded their hours to daily as Beth also needed help.

2012 – Beth began hallucinating.

Moved both of us to assisted living and put home up for rent.

Beth died of respiratory failure due to myotonic muscular dystrophy.

Lost most strength in arms, began using mobile arm support.

Sep 112010
 


So, if my legs were too weak for golf or tennis, and my fingers were too weak for music or writing, what kind of future should I write for myself? I needed a challenge, and I needed an activity that could fill the days better than sitting around on a scooter or wheelchair.

While I was pondering this question, I could hear the music coming from my wife’s studio. She had a degree in art and was a lifelong artist and seemed to be having a really good time listening to music and creating beautiful works of art. Why not me?

Well, if I wanted a challenge, this was certainly going to be one. Because I had no art training whatsoever. A coworker had once looked at my attempts at sketches and declared that I had created a new form called “the opposite of art.” I couldn’t hold the brush firmly enough to make accurate marks, so any attempt at realism was out of the question.

Painting of a scene near Del Mar, CA

Beyond Recuerdo was one of my early paintings.


However, I was intrigued by the difficulty and decided to give watercolor painting a try. At first I was very disappointed with the rough quality of my work. But then I would have artists come up to me and ask how I was accomplishing this style. Sometimes I would be honest and tell them that I really didn’t have any choice. They would smile and tell me how lucky I was.

What I didn’t realize at the time, was that so many artists struggle for years to “loosen up” after having received years of training directed toward accurate rendering of subject matter. I was able to simply skip that whole stage.

Watercolor painting of a wooded path.

Morning Walk is a recent work, purchased by a fellow artist.


Lately, the weakness of my fingers has become so great that I can no longer legibly sign my name at the bottom of the painting and I am looking for a way around that problem. It is also taking my “loose” style to an extreme that I’m not sure I can tolerate. But I will keep trying anyway.

Somewhere along the way to becoming an artist, I discovered another way to challenge myself and to make my life more rewarding: volunteering. More about that in Act II, Scene II.