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.

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.

Mar 162011
 

Preparing Work Apron for washing

When my Work Table apron gets dirty, I just remove the masonite panel and throw the cloth portion in the wash.


I first took up sewing to fill my need for a special type of “apron/worktable” that would be helpful and safe to wear when in my power wheelchair. I demonstrate three of them and explain their fabrication in the video below. It is the first in a new Life! disabled Video Series. Future videos will demonstrate topics such as using overhead lift systems to remain independent, driving with hand controls, and using GarageBand on the Apple iPad to create music.

Jan 062011
 

close-up view of Brother CS6000i sewing machineI took up sewing because I couldn’t find ready-made solutions to many of my special needs. For example, when I was no longer able to put on a belly bag by reaching behind my back, I needed something different – a bag that would attach to the sides of my wheelchair using Velcro.

But of course there were a couple of things in the way of turning this idea into reality. For one I didn’t know how to sew, and for another, I didn’t have a sewing machine.

When I began shopping for a machine I soon realized I had yet another problem – most of them rely on a foot pedal for operating the machine and I didn’t have the use of my feet. Fortunately, I discovered the computerized Brother sewing machine that you see pictured in the Amazon ad at the bottom of this post. It has pushbutton operation located conveniently near the needle.

One button starts and stops the machine, another lets you back up, for locking stitches, and the third raises and lowers the needle. In addition there is a slide switch that controls the speed of sewing so you can start out slowly and, once you have everything lined up properly, increase the speed.

My Brother CS6000i sewing machine plus some unique accessories.

My Brother CS6000i sewing machine plus some unique accessories.


I also make a great deal of use a special implements such as a pair of needle nose pliers for manipulating the thread, a pair of vise grips that helps me turn the small screwdriver needed to change the presser foot, spring loaded pinking shears, a glue stick for temporarily putting hems and seams together, and a magnet for holding and picking up pins.
Two views of my custom belly bag showing velcro straps and roomy vinyl pockets.

My custom made belly bag has a place for everything I need. The straps have velcro ends that attach to the frame of my wheelchair. I it with roomy pockets to make it easier to take out my wallet, cell phone, keys, etc.


Here is the belly bag that I designed and sewed: I placed strips of heavy duty velcro on my wheelchair, and then sewed velcro onto the bag straps. I made pockets for all of the items that I typically need to take with me whenever I leave home.

Since I began sewing, I have created many other items uniquely suited to my situation (and perhaps to others as well). Some of the items I have made include a unique “robe”, an art apron, a cooking apron (with hot pad material inside), and a worktable with a removable wooden insert so that I can throw it in the washing machine when it becomes soiled. I will describe these items in more detail in a later post.

Future projects include making my own shoes to fit my edema – swollen feet, and a padded strap to help lift me from a lying down position to a sitting up position in bed, using my overhead lift.

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 152010
 

When a body is weak, you can often find help by returning to basic physics. I have found that leverage, gravity and momentum are all incredibly useful tools when trying to get a job done. Today I will show two simple examples of leverage.

A workshop vise with a 4" handle.

The handle on my vise is too short and very hard for me to grasp.


I occasionally need to tighten a vise when I’m making a gripping hook or other tool. The little handle that comes with the vise is only 4 inches long and very difficult for me to get a good grip on since my fingers don’t bend.
A length of pvc pipe over the handle of a vise.

Adding a length of pvc pipe gives me four times the strength I had before.

But when I add a 16 inch long piece of PVC pipe, I can apply four times as much pressure, not to mention that the pipe is much easier to grasp.

Another example: I have taken up sewing (a lot more about that later) and from time to time find it necessary to change attachments on the machine. The manufacturer provided a special screwdriver for that purpose, however it has a handle just one half inch in diameter. Again this is almost impossible for me to grip and twist.

Using a visegrip to hold and turn a screwdriver.

Securing this tiny screwdriver with a visegrip lets me use it on my sewing machine.

The solution? A small visegrip. When it is attached to the screwdriver I have a 2 inch wide handle giving me four times the turning power as before, plus a shape that I can hold in my palm.

In a future post, I will show how I use gravity and momentum to solve problems around the house.