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 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.

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.

Jun 082011
 

Mike in a ceiling lift hovering above his bed.

Mike in a ceiling lift hovering above his bed.

Now that I am too weak for sliding transfers, the only option is for someone or something to pick me up. I chose the latter – a ceiling lift. I had previously installed two, one in the bedroom and one in the bath, so now it was time to put them to use. This video shows the process I go through each morning and night.

Important update: when I lived at home, these lifts were attached to the ceiling. Now that I am in assisted living that is no longer a desirable solution. There are new types of systems that require only unobtrusive pieces attached to walls on opposite sides of the room–they don’t even need to be attached to studs as all of the weight is absorbed at the base.

Jan 212011
 

The author photographing his favorite room.

The author photographing his favorite room.

At the risk of challenging the squeamish or offending the proper, I have decided to share my bathroom with the world.

If you are disabled, you often can appear almost “normal” when you are out and about during the day. After all, you’re dressed, you don’t stink (hopefully), and you move from place to place quite briskly with the aid of your $30,000 wheelchair. However, most people never get to see you when you are at your most disabled: when you are dressing and undressing, getting into or out of bed, or when you aren’t using the bathroom. Today, I will explain the extraordinary measures I have taken to make my bathroom a happy place.

We bought our present home about five years ago, shortly after my wife had been diagnosed with myotonic dystrophy. We realized that she would no longer be able to climb stairs, and since I hadn’t been able to do that for many years, what was the point of remaining in a two-story condo? Housing prices were still very high back then, so we were somewhat limited in our options.

Floor plan of inaccessible bathroom.

When we bought our home in 2006, it still had the original master bath as shown in this floorplan from a 1964 brochure.

We settled on Seven Oaks, a senior citizen development in the Rancho Bernardo area of San Diego. Our home had been built in 1964, and the bathroom had been left undisturbed – a monument to the shortsighted thinking of home builders of the time.

Modified ADA bathroom plan.

A few modifications turned an ancient bath into one that is modern, and completely accessible.


My first task was to redesign the bathroom in a manner that would allow me to get into it in a wheelchair and actually accomplish some of the functions one typically performs there. That redesign turned out to be simpler than I had imagined, once I realized that all I needed was the ability to close the door behind me and to transfer sideways onto a toilet or shower seat. In addition, I needed to be able to get close enough to the sink to be able to run the faucet and expectorate toothpaste. You can see my solution in the floor plans accompanying this article.

When we moved here, I was still able to stand, provided I held on to something with all of my might. Since my illness is progressive, I realized that wasn’t going to last very long – actually it only lasted about five months after we moved into the house. So I designed the toilet and shower seat to be high enough that I could slide from them back into my wheelchair when it was at its lowest level. My wheelchair has an elevating seat, so I could get into either of the other locations by raising the wheelchair high enough to slide downhill.

ADA Shower bench.

My shower bench is 23 inches high (like the toilet).

The sink was an easy matter to take care of. I simply had the entire counter and cabinets removed and then replaced the sink with a suspended model from Kohler.
A sink suspended above the floor.

My suspended sink lets me roll right up for easy access.


Those who know me well know that I am always thinking ahead. So I realized that even sliding downhill would eventually become too hard for me to accomplish. As a matter of fact, I am reaching that point right now.
An overhead lift at the opening to a shower stall.

To accommodate my overhead transfer lift, I had to design my own shower curtain. Here it is in the open position.

So I had an overhead lift system installed in the ceiling of the bathroom. Now I could use the electric lift to pick me up and then glide effortlessly across the room, right? Not so fast. There was the inconvenient matter of the shower curtain rod. It had to go. So I have been spending the last several days building a new kind of water barrier that could be moved out of the way of the lift and then replaced once I was seated in the shower.
Shower curtain stretched across shower stall.

Here is my custom shower curtain ready for use.


Several days? Yes, because my arms have become so weak that I can no longer hold an electric drill with any substantial security. In fact, I can’t even pick up what most of you would think of as an electric drill. I use one of the ultracompact lithium ion models which are not powerful enough to penetrate the 56-year-old wood surrounding my shower stall. But eventually I managed to get the various components in place.

The toilet. I have saved this for last, because I know most people don’t like to talk about this particular piece of equipment. However, for the disabled, it is almost always on our minds. When will we need one? If we find one, can we get on it? More importantly, can we get off? Reasons why I rarely travel more than a half hour from my home. Toilet mounted on ToilevatorYou see, my toilet is my friend. I had a Toilevator installed beneath the toilet, which raised it 4 inches – enough to make transfers convenient. I also added a BioBidet 1000 seat.

BioBidet 1000 toilet seat.

My BioBidet 1000 toilet seat gets the day off to a fresh start.

This wonderful device almost eliminates the need for conventional hygiene (which with fingers that don’t bend or grasp is almost impossible anyway) and it makes me look forward to the beginning of each day.

I hope none of you have been reading this over dinner.

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 092010
 

My wife seated on a small three wheel scooter

My wife shopping for her first scooter.


When is it time for a scooter (or wheelchair)?

From the moment I was diagnosed, I have had a simple philosophy about using the various mobility aids that are available to us. I say use them all if they make your life better or safer! I know there are those who feel like using a scooter is “giving up”. But it is important to realize when pride is getting in the way of your future lifestyle. I have seen people trying to walk whose leg muscles are so weak that their knee joints are bending backwards at almost a 45° angle. For me, after I had made several trips to urgent care and come away with casts and bandages, I realized that walking was an adventure I couldn’t afford.

Unfortunately, Medicare doesn’t have a very enlightened attitude about the mobility needs of the disabled. They have always operated on the philosophy that if you were able to get from the bed to the toilet, you didn’t need any more help. Fortunately for me, I was not yet on Medicare when I decided to get a scooter and I was able to write a convincing letter to my insurance company explaining that it would save them a lot of money to get me a scooter so that I would stop falling and breaking things. Amazingly enough, it worked.

Once I had my scooter, a three wheel model (more about that in a later post) it was as though a whole new world had opened for me. I loved taking it for drives around the neighborhood, to the stores, to the library, to the post office. Once again I was able to get out and enjoy the fresh air. As my weakness progressed, a new challenge emerged: how could I take my scooter with me on driving trips, such as on vacation? Fortunately, there was a solution for that as well, although it wasn’t inexpensive.

The same mobility store that sold me a scooter also carried vans that had been modified. The most expensive type are those which have a ramp that automatically deploys so that you can drive right up inside, but I wasn’t in need of that just yet. Instead I purchased a used Plymouth minivan that had a swing-out lift in the rear. With that I could pick up the scooter and place it in the rear of the van and then carefully walk around to the driver side and get in. This worked for several years, until I got too weak in the legs to safely maneuver around the outside of the van. Two serious falls occurred during this process and that told me I was ready for the next level of van.

But before that, I had also reached another milestone–I was outgrowing my scooter and ready to graduate to a wheelchair. In the next article, I will talk about some of the differences between scooters and wheelchairs and some of the many decisions that need to be made when you select one.