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.

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:

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.

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 242010
 

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

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

One of four access ramps at NTC Promenade

The Command Center at NTC Promenade has excellent access.

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

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

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

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


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

Sidewalk from mall to supermarket ends with high step.

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

NTC Promenade north mall is also 700 feet long.

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

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

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

Sep 082010
 

From time to time, I will talk about the early stages of my illness and describe some of the tools that I found useful.

The photo above was taken about two years after I had been diagnosed. During those early years, I had still not adjusted to my weakened quadriceps muscles. From what I have read on support group forums, I was not alone. You will find yourself walking along perfectly fine, but then the slightest irregularity in the pavement, even the most minor stub of a toe, and you will wind up sprawled on the pavement, bloody and bruised. Although your legs can still support your weight, there is no reserve strength to catch your balance. It is shocking when it happens, both to the one who falls and to those who see it. I was fortunate enough to be referred to a physiatrist who recommended that I get full leg braces. She sent me to an orthotist, Larry Johnson, in the San Diego area, who knew how to make braces out of lightweight carbon fiber materials and equip them with hinges that locked and unlocked automatically with each stride. Those “space-age” braces gave me several more years on my feet. I never would’ve been able to walk more than a few steps in conventional heavy locking braces. However for those who are thinking about braces, please be sure to include a good pair of forearm crutches, as braces may increase your stability, but they actually make you more vulnerable for dangerous falls. Believe it or not, during my last year of trying to continue working, this is the way I would look as I came into a client’s office. At 6’4″, I must have been an intimidating figure.